Talk:Myalgic encephalomyelitis/chronic fatigue syndrome/Archive 13

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Cause subarticle

But keeping on track: my purpose in starting this discussion is because I would like to plan some small contributions to the CFS articles. In particular, I would like to include a wider coverage of the various causal theories of CFS/ME. These should include psychological influences, because they are very important. For example, I highly rate the CDC research on child abuse and CFS link. But there are many biochemical pathways that play a hypothesized causal role in CFS, and these should be included in reasonable detail. For example: the methylation cycle, the NO/OONO cycle, adrenal hormones and HPA axis malfunction, thyroid hormone insufficiency, hydrogen sulfide overload, NMDA receptor overload, parasympathetic nervous system overstimulation, natural killer cell activation insufficiency, th1/th2 immune system imbalance. These problems generally are all present in the CFS patient, and are often interrelated. I want not only to detail these various malfunctioning metabolic systems a bit, but to try to give some overview on the whole lot. Too much of the CFS biochemical research is isolated, without being linked to a bigger picture of the CFS patient; too many CFS researchers focus only on their own work, and ignore the overview, and how their work fits into place within a wider perspective.

However, if I cannot get some general agreement, it is not worth me making all the effort to get the facts properly written up and referenced with reputable l sources, only to find that it gets deleted two week later. Hence I would like some general feedback that you guys are generally interested in this.

Drgao 04:19, 3 November 2009 (UTC) —Preceding unsigned comment added by Drgao (talk • contribs)

We once had a seperate daughter subarticle on hypotheses that supposedly got amalgamated with pathophysiology except it seems most of the hypothese were deleted. I support the suggestion that we need to include more of these and the advantage of a seperate subarticle is that they can be seen and contrasted in a totality. However the length of Pathophysiology sub would indicate that a seperate hypotheses sub is again warranted. A copy of the origonal draft is [here] and it could form as a starting point, if Dgao and others are interested. Jagra (talk) 05:59, 3 November 2009 (UTC)

As long as the material is supported by WP:MEDRS sources and written with NPOV wording there shouldn't be an issue. Ward20 (talk) 07:32, 3 November 2009 (UTC)

Let's have a separate Causes section. This would help to clean up the ongoing confusion about where to put infectious and other hypotheses. Other articles with ill defined causes do this - see multiple sclerosis for instance. Sam Weller (talk) 09:33, 3 November 2009 (UTC)

A separate causes section could be a very good idea, and the draft [hypothesis document] is a very valuable start.

In terms of the proposed new causes page, it might be good to distinguish causal factors/triggers from risk factors. For example, the CDC child abuse study showed that such abuse is a significant risk factor for developing CFS later in life. Genetic factors have also been shown influential in determining who might develop CFS. So these would be placed within the context of risk factors.

In terms of triggers, as far as I am aware, there are only four classes of known casual factors/triggers for CFS/ME: Toxic chemical exposure is one (such as exposure to organophosphates), exposure to high levels of ionising radiation is another (obviously this is normally quite a rare cause), the infectious agent causes, and as the after result of physical brain damage (for example, damage from meningitis)

Once CFS/ME has set in, there are various biochemical pathway abnormalities that arise (such as increased oxidation, methylation cycle problems, the NO/OONO cycle problems, HPA axis problems, etc, etc), and, in effect, these abnormalities can be thought of as secondary causes that tend to increase the overall malaise, and underpin the continuation of the disease, but are not generally considered primary causes or triggers. But we don't want to be too rigid in dividing triggers from secondary effects, as all the biochemistry abnormalities are are very closely interrelated, in the sense that one biochemical malfunction tends to sustain another in vicious circles.

It would also be nice to elucidate the links between (legitimate) psychological factors and biochemistry, to bring harmony and consensus between the psychological and biochemical camps.

For example: child abuse (linked to CFS) can lead to post-traumtic stress disorder. Now, in PTSD, a permanent immune system imbalance develops, with a strong Th2 response, but weak Th1 response. Since Th1 is the antiviral response of the immune system, it follows that PTSD will make it easier for a viral infections to persist. Thus when, later in life, a child that has PTSD is exposed to one of the persistent viruses implicated in CFS (eg: enterovirus, EBV, HHV-6A), they are more likely to succumb to this virus, just as the CDC child abuse study shows. (Incidentally, the Gupta Amygdala Retraining program is based on reversing this Th1 weakness: the program uses psychological techniques such as meditation to try to reverse trauma in the amygdala - one of the most damaged parts of the brain in PTSD - so as to return the immune system back to normal Th1/Th2 balance, so that the Th1 response can fight off the CFS viruses). This general idea of amygdala trauma, TH1/Th2 and CFS comes from Ashok Gupta.

Anyway, the idea of dividing the risk factors, triggers/causes and secondary biochemistry malfunctions in this way is to create a framework of better understanding of the entire disease process. In other words, not only giving the individual facts, but placing these facts into a some kind of overall perspective and structure.

What do you guys feel about this type of framework approach? Is this a good idea, and an adequate structure? Does it tread on anyone's toes, or exclude any cherished perspectives? Drgao 16:56, 3 November 2009 (UTC)

I ask that reliable sources that discuss ME/CFS be used so correlations and associations don't become original research. Attribution and phenotypes of patients are also becoming increasingly important to identify to the reader who said what about which subgroups. Ward20 (talk) 18:33, 3 November 2009 (UTC)

Absolutely. Only correlations and associations with reliable sources. In the case of the above amygdala correlation, this comes from a soon-to-be-published draft research paper by Ashok Gupta. Drgao 18:52, 3 November 2009 (UTC)

Jagra's sandbox article is very nice in many ways but far too long -- I suggest making it a separate subarticle and adding an "executive summary" to the current article. Regarding the amygdala thing, a draft research paper is absolutely not a usable source, per WP:RS. Looie496 (talk) 19:52, 3 November 2009 (UTC)

That's the way to do it. Sam Weller (talk) 19:57, 3 November 2009 (UTC)

Agree with Looie496's comment above. Ward20 (talk) 20:29, 3 November 2009 (UTC)

Yes, a compressed and succinct "executive summary" will be the goal. Regarding draft research: I would of course only include this if it gets published. Drgao 23:12, 3 November 2009 (UTC)

I have split this section of the discussion so it can be finalised. Some good ideas above, might i suggest a sandbox be created somewhere and a link be provided here so those interested can participate. It will need to be remembered that my origonal draft was in the days prior to WP:MEDRS and the first stage is probably to bring the draft into line, which will reduce the length. The origonal draft used reviews for the lead which was intended to provide a condensed 'summary' style paragraph for the main Article, which is probably a starting point now unless more recent reviews available that cover the field.Jagra (talk) 08:48, 4 November 2009 (UTC)

xenotropic murine leukemia virus-related virus, or XMRV study - Please someone make the update

) nm. i see the changes. i was looking at a cached page.

http://www.nytimes.com/2009/10/09/health/research/09virus.html

Hello, guys. I am not experienced with updating wikipedia but I felt it very important that this new research be included with the entry.

A recent study published in journal science by Dr. Judy A. Mikovits showed that 67% of chronic fatigue syndrome patients were infected with a virus - xenotropic murine leukemia virus. tthe link for the article is listed above.

• I saw the article too. Info placed in Risk factors section. Abductive (reasoning) 03:42, 9 October 2009 (UTC)

Somebody beat you to it, and placed it in Pathophysiology. Sam Weller (talk) 09:54, 9 October 2009 (UTC)

In an article in the The Independent Judy Mikovits said that I qoute from the article ...further blood tests have revealed that more than 95 per cent of patients with the syndrome have antibodies to the virus – indicating they have been infected with XMRV, which can lie dormant within a patient's DNA. "With those numbers, I would say, yes we've found the cause of chronic fatigue syndrome. We also have data showing that the virus attacks the human immune system," said Dr Mikovits. She is testing a further 500 blood samples gathered from chronic fatigue patients diagnosed in London. "The same percentages are holding up," she said. For an in depth article: Whittemore Peterson Institute Scientists Discover Significant link between XMRV and ME/CFS. They also write on there [webpage] that "We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromyalgia, Atypical MS patients tested.". That's interesting. Shouldn't this be added? Greetings Cyrus Grisham (talk) 19:01, 9 October 2009 (UTC)

The Whittemore Peterson Institute for Neuro Immune Disease is clearly not a reliable source for unpublished followup results, but The Independent article may be adequate for inclusion. (The 95% is unusable in scientific papers unless the control group was also rechecked, and in a triple-blind manner.) Further checks may be necessary to see if even the Science article is properly peer-reviewed in this instance. They've been fooled before. — Arthur Rubin (talk) 19:10, 9 October 2009 (UTC)

The original result was moved to #Disease associations, rather than #Risk factors or #Pathophysiology. Perhaps all three sections should be merged, but the former seems the best place for inclusion. — Arthur Rubin (talk) 19:14, 9 October 2009 (UTC)

Well, any scientific study that hasn't yet been replicated can turn out to be wrong, but I don't see how we would be able to tell if the article is "properly peer-reviewed", since Science uses anonymous reviewers. Anyway, I have added a direct cite of the Science article. Looie496 (talk) 19:15, 9 October 2009 (UTC)

That's the proper thing to do at this point. I have a vague memory of a retraction of another study coming from Whittemore Peterson, but, unless that can be documented the Science article should be included as a reference. — Arthur Rubin (talk)

I made the update originally i:e I published it in the wiki page, and it was removed, and I believe it was the right thing. One thing about the Mikovits study is that according to New York Times, Dr. Mikovits is the Research Director, Whittemore Peterson Institute in Reno, a research center created by the parents of a woman who has the syndrome. So unless this study is repeated or backed up, we can refrain from using it, but since this is a big news on the Web, we can try to make a reference to it. What Say?

Debangshu Mukherjee (talk) 18:13, 14 October 2009 (UTC)

Weight

This new study seems to have excessive weight in the article. Previously it was put in 3 separate sections of the article! It seems that a whole bunch of people just decided "let's add this to the CFS wikipedia article". Unfortunately, that's not how encyclopedias work.

The problem is that this is basically the same as all those other viruses that have been "linked" to CFS (remember stomach enteroviruses last year? EBV? HHV6?) All these are have a sentence or less each in the pathophysiology sub-article. And considering there is a whole load more research into HHV/EBV and CFS, this new study should really get less weight than that. --sciencewatcher (talk) 02:57, 10 October 2009 (UTC)

While the exact weight may be debatable, this is a heavyweight article in a high impact journal (28.1) that needs coverage in the article.

Author Robert H. Silverman discoverer of XMRV with the NCI seems to be a heavyweight.[1]

Many news and medical organizations are covering it heavily[2] including the New York Times, National Institutes of Health, Scientific American, US News & World Report, Reuters, Wall Street Journal, The Associated Press, Washington Post, NPR, Bloomberg, Discover Magazine, United Press International, New Scientist, and Los Angeles Times. Reeves and Wessely have both commented on this study in the news.

Ward20 (talk) 06:00, 10 October 2009 (UTC)

I actually have to agree with both of you on this one. I have to admit that I was puzzled as to why this got quite that much coverage in the news. After all, as sw points out, there have certainly been other viruses linked to CFS. Perhaps it is just because Silverman's a heavyweight, or maybe this is just one of those random things where the news picks up on a middle-weight story and decides it's bigger than it is. Beats me. I think time will tell.

As a development in CFS, it certainly has a place in the article, but 3 separate sections is definitely a bit much. :) Also, given the back & forth during the time RetroS1mone was active, I'm not sure that the weight of anything in the article is really much to go by. If this has undue weight, toning it down would certainly be appropriate, but adding more detail about other viruses may also be appropriate, depending what's out there. At this point, I've pretty much resumed my previous wiki-gnome status, though, so I'll let you guys figure it out. —RobinHood70 ^{(talk • contribs)} 06:49, 10 October 2009 (UTC)

Part of the reason for XMRV's high profile is not the 67% of CFS patients (nearer 95% with the refined assay since developed) but the 4% of healthy controls. The Wall Street Journal covered this public health aspect more than other outlets, but the article I read for free yesterday is now pay to view. A quote from the Washington Post blog: "WSJ was the only one to talk about the National Cancer Institute being alarmed enough to convene behind closed doors in July over the public health issues revolving around XMRV." [3]

Although it's silly to mention in three places here, I can't agree that #Disease associations is the place for it. The editor who placed it in #Pathophysiology was right first time. Sam Weller (talk) 08:18, 10 October 2009 (UTC)

I totally agree with the above comment, it doesn't need mentioning in three separate sections but why has it been moved to the disease associations? I think it should be moved back to the Pathophysiology section where it was originally inserted.87.114.164.156 (talk) 08:54, 10 October 2009 (UTC)

Why Pathophysiology? From what I've read, it hasn't been established that this is unequivocally the cause of CFS. The three or four articles I've read have all said it was "linked to" CFS, but have made it very clear that this could either be causative or something opportunistic after initial onset. —RobinHood70 ^{(talk • contribs)} 09:36, 10 October 2009 (UTC)

Of course, but compare prostate cancer where XMRV has its own subsection (#Potential viral cause), on the basis of a very much smaller incidence. Generally, Causes come immediately before Pathogenesis in WP. In CFS, potential causes and mechanisms are mixed together under Path. Until this article has a Causes section, where it would be most at home, it goes in Path or a subsection. Either way, it's not an 'associated disease'. Sam Weller (talk) 10:43, 10 October 2009 (UTC)

Aye, it can't be an associated disease if it doesn't have any of it's own symptoms. Abductive (reasoning) 18:08, 10 October 2009 (UTC)

I think it's "suggested" by the articles that XMRV may be a cause, but it's certainly not proven. If indeed it's simply an opportunistic virus, though, then it certainly is an associated disease. Until we know more, I have to agree with sciencewatcher that that's where it belongs. I think the articles are certainly suggestive that it may be a cause, but they're not definitive enough for us to present them under the Pathophysiology section—it would be misleading. All I've ever seen reported is that CFS is "linked to" XMRV, and for us to put it under Pathophysiology suggests something that hasn't been clearly reported. Essentially, right now, we have a strong suspicion, but as sw points out, there have been similar claims in the past about other viral linkages with CFS. —RobinHood70 ^{(talk • contribs)} 18:00, 10 October 2009 (UTC)

That's why I put it in the Chronic fatigue syndrome#Risk factors section in the first place. Abductive (reasoning) 18:08, 10 October 2009 (UTC)

As already stated it cannot be an associated disease, therefore it should be in the Pathophysiology section as it rightly is now..87.113.131.218 (talk) 21:41, 10 October 2009 (UTC)

Actually, all of the associated infections are in the Pathophysiology#Infections section at present, and not in "associated diseases", so it does make sense to put this in pathophysiology. (And all those infections are not thought to cause CFS either). Perhaps they should all be moved to the disease associations section too, I'm not sure. --sciencewatcher (talk) 23:07, 10 October 2009 (UTC)

Let me first congratulate those involved in the recent improvements to the Articles, WELL DONE

Adding to this subject, lets not forget that the current Pathphysiology Article is an amalgamation with the previous Hypotheses Article and should i beleive be titled Pathogenesis and Hypotheses. Therefore I agree the Path section is an appropriate location for this exciting news. This publication PMID 19815723 follows on from the press release from Reno I mentioned on this page a year ago, the same reseacher linking it at that time to a high incidence of Shingles in CFS, but i have seen little so far on that except the hypotheses paper mentioned recently. Certainly more work and verification is needed, but if the earlier news is correct this finding has already been duplicated in multiple centers worldwide, hence the long list of authors on this first paper. Not yet a review but certainly notable. There is already a race internationally to produce the first CFS test based on this finding, with researchers already granted considerable funds.

Of relevance to CFS is firstly that the virus has been found infectious from material derived from CFS patients, and associated with default in the 2-5A/RNase pathway. (already found disordered in CFS) The default is suspected to be hereditary, certainly found that way in Prostate Cancer PMID 18950583 which led to the discovery of XMRV. No doubt similar findings may occur with CFS but perhaps other genes? Regards to all Jagra (talk) 01:38, 11 October 2009 (UTC)

It always amazes me how ridiculous the moderators are on this article. They are constantly stonewalling anything that might demonstrate a biological, non psychological cause for this illness. Seriously you are suggesting that the integrity of Science is questionable???? I couldn't stop laughing. These articles are referenced all throughout the sections on XMRV and elsewhere in wikipedia. Yet suddenly they don't meet the standards for the CBT pushers on this measly Wikipedia page? Get real. You could at least mention the article. 70.184.145.25 (talk) 13:31, 4 November 2009 (UTC)Judderwocky (talk) 13:37, 4 November 2009 (UTC) Also I would mention that the results were backed by the national institute of cancer, the cleveland clinic, and the procedures were discussed at length in televised briefings to the CDC. Multiple geographic areas were sampled, and the research was termed as exemplary by the CDC. What is soo outlandish is that you don't even believe it should be mentioned in the article. Your bias is so blatantly clear. I can't imagine anybody in the scientific world taking you seriously if you go around questioning Science's peer review procedures.Judderwocky (talk) 13:37, 4 November 2009 (UTC)

Have you in fact read the article?[4] The Science paper has been referenced here since the electronic preprint, 4 weeks ago. It may have moved and duplications in different sections have been pruned, but it has never been absent. Sam Weller (talk) 14:13, 4 November 2009 (UTC)

Yes you are indeed correct. The editors of this article and obsessed with CBT and GET. There is proportionally too much info on CBT on the main page. I sure just a couple of lines and references would be sufficient. And just take a look at the treatments sub article, there must be at least a thousand words of CBT alone, honestly its laughable. And now I've noticed one particular editor, i shall not mention names they know who they are, has just blasted out huge chunks of other relevant material on other treatments;- NADH etc, so the article is totally biased towards psychological therapies and yet if you try to remove their beloved CBT info you just get stone-walled.. This whole article is a complete joke..LOL...87.114.22.229 (talk) 14:38, 4 November 2009 (UTC)

Judderwocky/IP's must have been talking about Sciencewatcher's comments about the XMRV research (that it deserves less weight than other viruses and that it is "all a bit fishy"). I was initially surprised at the coverage it got, but I later realised that the methodology was solid and the findings have major implications for the future direction of research. The significant coverage itself deserves a mention in the text about history or society. Also, having the Canadian 2003 criteria used in a paper published in Science is important. It seems that many people are now anticipating real biological research using decent criteria for a change. - Tekaphor (TALK) 03:53, 5 November 2009 (UTC)

Where on earth does SW say it's 'fishy'? It's clearly not, or Coffin and Grice would not have stuck their necks out. The above discussion was mainly in response to the same research appearing in 3 separate sections. Sam Weller (talk) 10:23, 5 November 2009 (UTC)

The "fishy" comment is on SW's talkpage, here [5]. - Tekaphor (TALK) 10:52, 5 November 2009 (UTC)

Yes, it is fishy for a few reasons, but as it's published in Science it has to go into the article. My opinion doesn't matter - it's just that, an opinion. As for the comments about CBT, I agree that it needs to be trimmed - see my comment on the treatment talk page. Nobody here is obsessed with CBT and GET (except perhaps the people who want to remove it). It's just that they are the only treatments that have actually been shown to work. I myself have said a number of times that I don't think CBT is a very good treatment. But again, my opinion (or anyone else's, unless they've been published in a reliable source) doesn't matter. --sciencewatcher (talk) 14:49, 5 November 2009 (UTC)

More on sources and selection criteria here: [6] Science is not a medical journal and did not deem the usual demographic info important enough to include. Sam Weller (talk) 12:25, 6 November 2009 (UTC)

XMRV The Wider Context

Just want to contribute to this XMRV discussion, to help provide a broader context for this story. First of all, at the time of its discovery a few years ago, XMRV made huge waves in the virology community (but very little in the general media). XMRV is the fourth human retrovirus discovered (HIV was the 3rd, and HTLV I and II the other two). At that time, it was really only understood by the virologists that XMRV was likely to have massive significance in connection with various human diseases. Retroviruses are seriously bad viruses, directly attacking the immune system. This is why virologist viewed XMRV as a "7 on the viral Richter scale". So the fact that XMRV, this cousin of HIV, now turns out to be possibly behind CFS is more big news, on already big news.

From the CFS scientific research perspective, one of the great perennial mysteries of CFS is why do respiratory viruses like: enterovirus, Epstein-Barr virus, HHV-6 and parvovirus (amongst others) seem to kick off and sustain CFS in certain susceptible people, but not in the wider population. WHAT WAS IT ABOUT CFS PATIENTS THAT MADE THEM MUCH MORE SUSCEPTIBLE TO THESE RELATIVELY MILD COMMON RESPIRATORY VIRUSES?

This of course is one of the greatest unsolved problems in the viral model of CFS, and up to now it has had NO explanation. For this reason, may people have doubted the viral model of CFS, because this discrepancy of susceptibility could not be explained. But, with XMRV suddenly on the CFS scene, everything could rapidly fall into place. XMRV may perfectly explain this susceptibility. The exciting hypothesis of the WPI is that only people whose immune systems are already damaged by XMRV will fall prey to these respiratory viruses. Problem solved - or so people are hoping.

This really is the sought after Holy Grail of CFS viral research. The bit of the puzzle that fits all the other pieces together. So that is why there is SO much excitement about XMRV. We will have to wait perhaps around year or so, I should think, before confirmation that this really is the Holy Grail, but in the mean time, XMRV is a big story to follow.

In terms of the immediate significance for the CFS community, there is now a lot of hope on the horizon. Why? Because it may be that existing anti-retroviral HIV drugs will also fight off HIV's cousin XMRV. This means that if we give anti-retroviral drugs to CFS patients, it may clear their XMRV, and then, in turn, the frail immune systems of CFS patients will regain strength to eliminate the respiratory viruses the patient harbors; it is these respiratory viruses that are causing the CFS disease. In short, kill XMRV, the respiratory viruses are cleared, and CFS goes away: this is the hope everyone is focused on.

The WPI are already planing to test anti-retroviral drugs on CFS patients that have XMRV, to see if their CFS disease disappears. So this is another thing to watch: and the WPI is planning to get this anti-retroviral drug CFS trial underway fast, so the answers should be coming in hopefully within a year say.

If this WPI anti-retroviral trail is a success, in the most optimistic scenario, CFS will be largely eliminated as a sufferable disease with a few years.

I have no idea of how the anti-retroviral drug CFS trial will go, but as you can appreciate, this story is no small cheese. It is significant news. -- Drgao 03:45, 6 November 2009 (UTC)

A very interesting background, but not perhaps belonging in this talk page :-) I've split it off as a separate subsection to Weight TerryE (talk) 02:25, 8 November 2009 (UTC)

Good idea, since the above info is provided essentially to stir some thought about the significance of the XMRV discovery. My personal view is that XMRV is a fundamentally important and world-changing discovery.

BY THE WAY: THE LATEST NEWS FROM THE GOOD DR. MIKOVITS: she has just reported that 40% of Autism patients thus far tested are positive for XMRV. (Of course, this info is straight from the lab, not yet peer reviewed and published). So this XMRV virus could well turn out to be the cause of autism too. Two birds with one stone, both CFS and autism are potentially now explained --Drgao (talk) 03:02, 8 November 2009 (UTC)

Primary sources tag incorrectly removed

Although I twice installed a {{primary sources}} tag on this article, and have clearly justified the reasoning, it has been removed (incorrectly) twice. See the discussion above. As further evidence, this article contains an extensive list of sources that are not secondary reviews-- rather primary sources-- and the one review that is most oft-cited (PMID 17419822) is only cited six times, and it dates to 2007. Surely there is a more recent review that can be used to rewrite this article to avoid synthesis from cherry picking of primary sources, recentism, weasel words, and undue weight. The article relies too heavily on primary sources, and should be rewritten from secondary reviews. Please re-instate the tag, and note that removing a correctly placed tag from an article is disruptive editing. This article does not just breach WP:MEDRS; it violates WP:V by an overreliance on primary sources. SandyGeorgia (Talk) 16:19, 8 November 2009 (UTC)

I've re added the primary sources tag. I'm a bit confused about all this..apologies..87.115.61.230 (talk) 16:25, 8 November 2009 (UTC)

Thank you: much appreciated, and helps avoid another edit war :) By the way, in most cases (not all), you can determine if a particular PMID-referenced article is a review by clicking on the "[+] Publication Types" section at the bottom of the PMID abstract (see PMID 17419822 for an example, listed as a review). Taking into account that recent change at PubMed, this Dispatch should be helpful in understanding how to use sources correctly in medical articles. For comparison, please see the extensive citing of recent reviews at similar featured articles, including but not limited to Asperger syndrome, autism and Tourette syndrome. Edit warring is avoided on those articles by relying on secondary reviews, except in the very limited cases where other sources are justified by WP:V as explained further in WP:MEDRS. SandyGeorgia (Talk) 16:53, 8 November 2009 (UTC)

Tim Vickers has now updated the Dispatch I linked above, to reflect recent changes in the PubMed interface. SandyGeorgia (Talk) 17:43, 8 November 2009 (UTC)

One thing to keep in mind about at least some of the primary sources used here is that they're used with the first sentence of Respect secondary sources in mind: in other words, they're listed specifically to present an opposing view to the listed secondary sources. I'm not saying you're wrong in your assertion, just to keep all the valid uses of primary sources in mind.

In regards to the broader issues, to be honest, this article has been through a lot, having had at least two contributors within the last year who could be considered "difficult to work with", for lack of a more politically-correct term, both of whom have now stopped contributing to Wikipedia altogether (one was banned, the other left voluntarily). After the ongoing concerns there were resolved, I think many of us suffered from "contribution fatigue syndrome", so the article was largely left as it was, regardless of any policy concerns and so forth. In short, fresh eyes are welcome and probably very needed on this article, but being a contentious subject in the medical community itself, I think there will always be a lot of contention here as well. —RobinHood70 ^{(talk • contribs)} 00:16, 9 November 2009 (UTC)

CDC prevalence figures

By the way, is it OK with you guys if I update the main page CFS article with the latest figures for the prevalence of CFS, released by the CDC. Currently the article says "CFS is thought to have an incidence of 4 adults per 1,000 in the United States". The latest figures measure around 2.5%, which is much larger. Ref: here

Or perhaps you feel that the original figure should be maintained. Some more prevalence information

I hope you don't mind, I moved this to a new section since it's not strongly related to the previous discussion which was getting kind of long. As I recall, the CDC was blasted by patient groups for using a completely non-standard definition of CFS at one point. If this figure is based on that definition, then it's probably best to leave it out, or if it's included, to mention the controversy. If the figure you mention isn't based on the non-standard definition, then by all means, add it and cite the source you did above. —RobinHood70 ^{(talk • contribs)} 06:14, 4 November 2009 (UTC)

The bloated figure is based on the CDC 2005 Reeves criteria which are currently under attack as you say. Sam Weller (talk) 08:38, 4 November 2009 (UTC)

Good points. The illness inclusion criteria for CFS and ME are a very problematic area, especially for CFS researchers themselves, as the lack of consensus it makes it hard to compare one CFS/ME study to the next. Perhaps we should discuss this situation, and se if we can find some way forward.

Is it is worth putting in all the prevalence info. The various figures from here are a good start, as well as the various studies from the CDC here. As you can see there are a huge range of estimates even from the CDC - from 0.235% in 2003 up to 2.5% in 2007! The CDC says they think the 2.5% is more accurate, but is that really the case? Anyway, we should probably just put all the info into the article. --sciencewatcher (talk) 17:37, 4 November 2009 (UTC)

Regarding the prevalence figures: it may be that CFS is on the increase. The CDC's 2003 study, which found a 0.24% prevalence must have used the same Reeve criteria, so logically either there is something strange going on in Georgia (where the 2007 2.5% prevalence study was conducted), or there has been a drastic rise in CFS (by the Reeve criteria) over the last five years. I have heard people say before that CFS is rising. --Drgao 18:28, 4 November 2009 (UTC)

If you read the studies, you see they just used a different of method of finding people with CFS (nothing to do with the diagnostic criteria which remained the same in both as far as I can see). --sciencewatcher (talk) 18:31, 4 November 2009 (UTC)

Nope, the 2003 study used the Fukuda research definition. The 2007 study used the 2005 empirical case definition which among other changes redefines the Fukuda physical symptoms to the Symptom Inventory Case Definition Subscale The 8 physical symptoms are expanded to 19 which includes depression, and symptoms are only accessed during the month preceding the interview. The empirical case definition has has been independently criticised because 38% of a cohort with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the new empirical case definition. I haven't seen the empirical case definition used outside of CDC studies. It would make a good controversy topic. Ward20 (talk) 20:22, 4 November 2009 (UTC)

Ok, I didn't realise they used a different definition. As you say, it's probably worth discussing in the controversy article. --sciencewatcher (talk) 20:35, 4 November 2009 (UTC)

The MEDRS criticism of the 2005 definition is also covered in Clinical_descriptions_of_chronic_fatigue_syndrome#Diagnostic_complications_and_suggested_improvements. Sam Weller (talk) 20:41, 4 November 2009 (UTC)

We maybe just need to update the epidemiology section, even if it just means changing the 'between 75 and 420' to 'between 75 and 2500'. --sciencewatcher (talk) 20:56, 4 November 2009 (UTC)

The finding/claim of a strong association with childhood abuse is also based on the CDC 2005 definition and is therefore suspicious. I originally added this study a long time ago under the misguided assumption of just reporting the science with respect to psychoneuroimmunology and the risk that stress seems to play in a range of both mental and physical diseases. I later regretted doing so when I later found out that "the science" was flawed and influenced by politics, but I did not remove or qualify it as that was likely to trigger another fruitless edit war for allegedly being "anti-psychological". - Tekaphor (TALK) 05:43, 5 November 2009 (UTC)

Hi Tekaphor. I also initially thought that the CDC child abuse study was influenced by politics (and maybe it was), but I came across an interpretation of the results that is entirely consistent with the viral model for CFS, as follow: child abuse can lead to post-traumtic stress disorder (PTSD). In PTSD, a permanent immune system imbalance can develop, in which there is with a oversized Th2 response, but weak Th1 response. Since Th1 is the antiviral response of the immune system, it follows that PTSD may make it easier for a viral infections to persist. Thus when, later in life, a child with PTSD is exposed to a CFS virus, they are more likely to succumb to this virus. I think this study makes sense. So the moral of the story is not to have a blanket rejection of psychological factors, but more just wariness of the exaggerated claims for CBT/GET, and the unhealthy dominance of psychological model (and CBT/GET treatment) at the CDC. This dominance seems to result from the psychiatric profession (the Wessely School) wanting to own the CFS/ME disease, to dominate and control all the official government channels of CFS/ME and thus to profit from CFS/ME. However, just because the CDC has been very narrow minded and polarized towards the psychological factors, and has been taken in by the Wessely School, this does not mean that this wiki article cannot be broadminded, and include psychological as well as psychological factors. We are looking for the truth here. Drgao 18:59, 5 November 2009 (UTC)

PTSD is a risk factor for some physical diseases, and the Th1/Th2 balance is interesting. However, the vast majority of non-veteran and majority of veteran CFS patients do not meet PTSD criteria (see PMID 12194905 and PMID 18420761 for example). Also, PTSD does not seem to stand out in research on premorbid conditions. It is odd that the estimated prevalence figures have jumped 5 to 10 fold when redefining CFS, and now suddenly childhood abuse is the rule rather than the exception? - Tekaphor (TALK) 12:34, 7 November 2009 (UTC)

Point well taken. I would say that the correct way to interpret this child abuse study, in terms of epidemiology, is by looking at it the other way around: this is a study primary about people with PTSD as a result of child abuse when they were a child. For such PTSD individuals, the study demonstrates a much higher risk of contracting CFS later in life. So if you have PTSD, this is something interesting for you. About 1.5 million Americans have suffered some type of child abuse. But this study is of very little direct relevance for most people with CFS, since as you have clearly pointed out, few CFS patients have PTSD.

In other words, as a causal/risk factor for CFS, PTSD is neither significant for the majority of the general population, nor for the majority of people with CFS.

But I expect that the average person will look at this CDC child abuse study and conclude to themselves, wrongly, of course: "ah, so child abuse is a powerful risk factor of CFS ". No it is not; as the data you kindly provided underpins: statistically, child abuse is a very rare contributory cause CFS.

However, if interpreted correctly, this study can be useful in understanding the biochemistry of CFS, and the CDC correctly say this in their study, see here: "These long-term consequences of early life stress occur through direct effects on brain circuits involved in the mediation of cognitive-emotional regulation, vigilance, arousal, and the integration of endocrine, autonomic, and immune regulatory systems".The link between PTSD and Th1/Th2 immunity is one such understanding it may bring. --Drgao 22:03, 7 November 2009 (UTC)

I'll leave a message on your talkpage later on. - Tekaphor (TALK) 17:19, 9 November 2009 (UTC)

Treatments

SW you have busy and removed review material and caveats from quite a number of the treatments, such that they no longer present a NPOV so I suggest you discuss each seperately. In addition we are meant to edit for the common reader and i think some small paragraph or sentence is warranted to provide the rationale for such complex treatments, but you have removed many of these as well, on what basis? NADH is also a mitochondrial treatment which we discussed just recently, without the rationale how many readers could be expected to know that? clearly the recent editor above did not. Any one else wish to comment on the desirability of these, properly sourced of course. I think the lead to the Treatment article is now also in need of change.Jagra (talk) 09:25, 4 November 2009 (UTC)

I would suggest that in the main article, we limit ourselves to treatments that have been shown to have a positive effect in large numbers of studies—which I think is going to limit us to CBT and GET (perhaps along with other exercise therapies)—with a link to the Treatments article to cover the remainder. In the Treatments article, however, I would suggest that we err on the side of inclusion, mentioning both studies with positive effects as well as contradicting studies for all the various less-proven treatments like NADH, antivirals, L-Carnitine, magnesium, etc.

As a CFS sufferer myself, I will be the first to admit that I dislike the idea that CBT and GET are the only treatments that readily meet MEDRS guidelines, as I think there are some flaws even in those studies (the recent "ambulatory" change mentioned in Simon Wessely's article, for instance [7], or the fact that all CBT studies I could find last time I looked included an exercise component and then piggybacked on those benefits and claimed that the cognitive portions of the therapy were beneficial). The simple fact remains, however, that they are the treatments with the most medical research to-date, and so we should proceed on that basis in the main article. —RobinHood70 ^{(talk • contribs)} 10:06, 4 November 2009 (UTC)

I agree with Robinhood, and that is what I have tried to do. The problem is that Jagra misrepresented the science with a lot of the treatments and said that (for example) an RCT improved symptoms when in fact it was no better than placebo. Yes, we can put some info about treatments that have been tested and found to not be effective. However we cannot put in half a page of info about these treatments and then twist the facts to make it look like they are in fact effective - that is what Jagra did. If you want to expand them a bit, that's fine. --sciencewatcher (talk) 15:11, 4 November 2009 (UTC)

(Belatedly I have added the following comment.) SW it is one thing attempting to diminish authors of studies that you disagree with but another to claim that I have misrepresented the science, or twisted the facts when what i beleive i have done is to paraphrase the systemic reviews. I think you should be warned about Personal Attacks. I suggest that you now support you allegations. Jagra (talk) 08:04, 11 November 2009 (UTC)

Oh, and I notice someone got upset and removed a whole load of info about CBT from the treatment article after I did my pruning. While CBT is the only treatment proven to actually work, I agree there does seem to be quite an unnecessary amount of info about CBT, so it might do with some pruning too. Thoughts? --sciencewatcher (talk) 15:12, 4 November 2009 (UTC)

The CBT section is a mess, yet despite the conversing bloat it does not even adequately describe how CBT is applied to CFS. It gives a euphemistic "help patients understand their individual symptoms and beliefs, and develop strategies to improve day-to-day functioning", when it should be more like, "CBT is used for CFS to demonstrate to the patient that psychological factors perpetuate physical symptoms, change the patients' abnormal beliefs/anxieties about having a disease that limits activity, reduce the cognitive amplification of bodily sensations, and gradually increase activity to reverse the physical deconditioning that has resulted from fear-avoidance." Of course, the relevance of these components are all debatable, but at least the current version of text on the Pathophysiology subarticle [8] is more honest about what the cognitive behavioural model entails. Perhaps the CBT section can be reduced to a paragraph on the findings and a paragraph on the criticisms/weaknesses? Good point RobinHood regarding piggybacking. - Tekaphor (TALK) 04:57, 5 November 2009 (UTC)

Agree with Tek. The article should make it possible to understand the assumptions behind the CBT model and compare them with pacing, for instance. Sam Weller (talk) 09:03, 5 November 2009 (UTC)

I've just had a go at fixing the CBT section, and I rewrote the lead to be more like the CBT info given in the patho article. I trimmed out a whole load of stuff. See what you think. --sciencewatcher (talk) 19:17, 5 November 2009 (UTC)

This was in the Chronic_fatigue_syndrome_treatment#Cognitive_behavioral_therapy section? Definitely an improvement, but a couple of questions. Why totally eliminate the criticism section? Where does, "or to fully recover" occur in the source?[9] Ward20 (talk) 23:58, 5 November 2009 (UTC)

Yes, that is the section I updated. I didn't eliminate the criticism section. I just checked, and there wasn't a 'criticism' section in the version prior to my changes. The criticism was in the Cognitive behavioral therapy section itself, and there is still a lot of criticism there. Regarding the 'to fully recover' quote, that doesn't appear in that source - that sentence is my understanding of CBT from various sources and I just put in that one source. Feel free to change it if you can find a good reference that explains the aim of CBT in CFS. I'm wondering if the next-to-last paragraph ("Whether or not CBT works...") should be removed, but I've left it there for now. --sciencewatcher (talk) 00:54, 6 November 2009 (UTC)

My bad I should have been more specific. This is the criticism "paragraph" that was eliminated:

"CBT has been criticised by patients' organisations because of negative reports from some of their members, which have indicated that CBT can sometimes make people worse; one such survey conducted by Action for ME found that out of the 285 participants who reported using CBT, 7% reported it to be helpful, 67% reported no change, and 26% reported that it made their condition worse.

The only thing I see close to criticism is the last paragraph that talks about study limitations:

"According to a 2006 systematic review "very few studies have assessed the effectiveness of interventions for children and young people and for severely affected patients. The effectiveness of CBT for adolescents is supported by a recent high-quality RCT, although this had only 69 participants." Currently there is no research into the effectiveness of CBT for the severely affected, and these patients may be effectively excluded from trials due to the need to attend a clinic. Some CBT trials suffer from large dropout rates, up to 42% in one study, with a mean dropout rate of 16%. This compares to a 17% dropout rate in a trial of 432 patients receiving CBT for anxiety, "so is not unusually high" according to a 2007 meta-analysis."

As far as the second to last paragraph, I believe the idea of explaining some of the factors effecting efficacy of CBT is fine, but the paragraph is rather biased to blame patients. Many of the factors the Prins study cites are in dispute by MEDRS, and the rest is out of context to the original meaning of the sources. Ward20 (talk) 05:19, 6 November 2009 (UTC)

I removed that last paragraph because it is already covered in the first paragraph: "While CBT has been reported to be beneficial in trials, patients' organisations have reported adverse effects." (along with the exact same refs). The last paragraph was just an expanded version of this. I just made the decision to remove it, along with other stuff which was positive to CBT. I think it is reasonably balanced now. I just reverted an edit from an anon ip who put that paragraph back in. Please discuss here - if the consensus is to put it back in then we'll do that. --sciencewatcher (talk) 15:01, 6 November 2009 (UTC)

I didn't even notice that sentence. I believe it's insufficient because it makes a vague statement about CBT being "beneficial in trials" ( it wasn't in all trials) and then another vague statement, "patients' organisations have reported adverse effects." The sentence doesn't explain how the effects were adverse or the survey results. It is easily overlooked at the end of the first paragraph.

I suggest "While CBT has been reported to be beneficial in trials in trials, patients' organisations have reported adverse effects." should be deleted from the first paragraph, and "CBT has been criticised by patients' organisations because of negative reports from some of their members, which have indicated that CBT can sometimes make people worse; one such survey conducted by Action for ME found that out of the 285 participants who reported using CBT, 7% reported it to be helpful, 67% reported no change, and 26% reported that it made their condition worse". should be reinstated as the last paragraph. Ward20 (talk) 16:13, 6 November 2009 (UTC)

I'm ok with that. --sciencewatcher (talk) 16:21, 6 November 2009 (UTC)

Here is a suggestion (not sure if it is a good one not not): For the psychological/psychiatric treatments of CFS/ME, why not include more coverage of other psychotherapeutic treatments system for CFS. These other treatments may not be as official as CBT/GET, in that some may lack RCTs, but they may be effective.

That way, the psychotherapeutic treatments area will not be dominated by a single one approach (of CBT/GET). Psychotherapeutic CFS treatments include: Gupta Amygdala Retraining, Lightning Process, Emotional Freedom Technique, Eye Movement Desensitisation and Reprocessing (EMDR), Hypnosis, Biofeedback, Mickel Therapy / Reverse Therapy. There must be others too. And there may be CFS treatments available from the psychiatric profession other than CBT/GET.

Amygdala Retraining is the most integrated with the biological/viral model of understanding CFS. Ashok Gupta believes that CFS is virally triggered/caused, but that a stressed amygdala is to a degree responsible for the persistence of the virus and the CFS symptoms. Emotional Freedom Technique (EFT) stimulates acupuncture points, and there are anecdotal reports in the mainstream media of remission from CFS using EFT.

I am not sure if including these treatments, some of them being quite fringe, is in keeping with Wiki guidelines, but in general, I think having a wider psychotherapeutic treatment coverage would be beneficial for the reader, would distance this article from the politics of CBT/GET, and may help improve understanding of the links between the biological and psychological goings on of CFS. --Drgao 18:02, 6 November 2009 (UTC)

Using this article as a platform for the Lightning Process and other miracle cures? Read this from Private Eye issue 1248, p10, about halfway down the "Legal News" section:

ME sufferers were stunned recently to receive threatening letters when they posted their views on the "Lightening Process", a programme that allegedly produces "amazing results" for people not only with ME but "anxiety, panic attack, over-eating, low self-esteem and guilt" too. When sufferers started reporting they had paid £600 for a course that did not work for the, they received warning of defamation proceedings if they did not recant.[10]

Sam Weller (talk) 18:39, 6 November 2009 (UTC)

OK, delete the Lightning Process straight away. I read that they were quite money orientated, but I did not know they were that bad. In fact, why not include what you have written. It is not libellous, as it simply reports the facts. Everybody hates rip-offs. But you can find studies showing some mild efficacy for these alternative treatments. For example: Chi Gong for CFS. --Drgao 18:50, 6 November 2009 (UTC)

There have been discussions about quality of WP:Reliable Sources previously (in the archives) and consensus has been to strive to use WP:MEDRS as a guideline. IMHO, a pilot uncontrolled study of 18 participants that had chronic fatigue not meeting any established research or clinical definition for ME/CFS just doesn't rise to the level of sources that have been used previously. But I don't mean to discourage suggestions for improving the article, please keep them coming. Ward20 (talk) 19:18, 6 November 2009 (UTC)

I have to agree with Ward20. Once we start adding stuff like this, where does it end? I agree with Drgao that CBT isn't a very good psychological therapy for CFS (and we've been discussing this by email), but the problem is that so far nobody has come up with anything better than has been put through rigorous trials (or any trials for that matter).

I have come across a number of therapists who treat CFS (and have had the illness themselves), who I believe do a better job and are less likely to rip you off than the big names and more likely to work than CBT. However I can't add them to the article because they are just individual people and they don't have any published studies.

Oh, I'd suggest that Drgao removes his comment above regarding 'parasites', as I'm guessing that qualifies as libellous! --sciencewatcher (talk) 20:48, 6 November 2009 (UTC)

OK, I've deleted the offending sentence and the, er, P-word it contained!

I guess it is a difficult thing, when dealing with many psychotherapeutic treatments, as well as alternative (complementary) treatments, unless there are RCTs. One way forward might be not to quote any efficacy figures, but simply report the fact that such-and-such a treatment is often used in the CFS community. For example, writing something like "Some CFS patients say that following an alkalising diet has greatly reduced their CFS symptoms".

I had a look at other Wiki articles, to see how they deal with these matters. The multiple sclerosis treatment article, for example, which is a top FA grade (featured article), has this: Treatment_of_multiple_sclerosis#Alternative_treatments, but everything they include is backed up with RCTs.

So, as you say, once you start adding non-RCT stuff, where does it end. Shame though, because it would be nice to give some more suggestions for alternative treatments. --Drgao 02:32, 7 November 2009 (UTC)

You can do that, but you still need to have a reliable source, otherwise it is WP:OR. For example, if you have a review that says a lot of patients find treatment X useful (whether or not it works or has any trials), that can probably go in. If you look at the example you provided, there are references for all of the treatments. Also read WP:MEDRS. --sciencewatcher (talk) 03:50, 7 November 2009 (UTC)

In recent years, there has been a flurry of self-help chronic fatigue syndrome books published, and most of these detail various alternative treatments. Presumably these tertiary sources could be used as references? One such book that I have at home (Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses, by Katrina Berne, PhD) lists quite a few drugs and supplements, such as (to take a random sample): Q10, phosphatidylserine, pycnogenol, guaifenesin, piracetam, N-acetyl-cysteine, with an explanation of the benefits of each of these for CFS. There are other such books that detail alkalizing diets, tai chi, chi gong, yoga and mediation in chronic fatigue syndrome.

What do people feel about using such sources, and more importantly, about including this type of material? --Drgao 06:42, 7 November 2009 (UTC)

Drgao, I'm for limiting it to MEDRS studies.

BTW, PMID 19855350 (preprint) criticizes the CBT/GET model in ME/CFS root and branch, not just 'side effects' and 'study limitations' as at present. Sam Weller (talk) 13:12, 7 November 2009 (UTC)

The fulltext PDF of PMID 19855350 is available via email at http://node.nel.edu/?node_id=8918. - Tekaphor (TALK) 13:57, 7 November 2009 (UTC)

Many thanks Sam Weller and Tekaphor. That is an extremely valuable Reference, which backs up the anecdotal patient-group criticisms of the inherent dangers of CBT/GET. First, do no harm, said Hippocrates; yet Wessely and friends have done the reverse. I have copied your references into the CBT/GET discussion above. --Drgao 16:18, 7 November 2009 (UTC)

Why is this not referenced in the CBT section? The treatment section reads as though it is one of only a couple of therapies that is shown to work for CFS. But it seems now that there is evidence that this is not so cut and dried. I hope someone balances the article up to reflect this....Oh this whole CBT thing seems really fishy to me..LOL...87.112.224.64 (talk) 16:34, 7 November 2009 (UTC)

I've just added a couple of lines to the CBT treatments section to reflect the above mentioned paper. Please feel free to tweak as you please, and could someone please insert the reference better as I am not very good at references..Thanks..87.115.61.230 (talk) 14:59, 8 November 2009 (UTC)

Canadian criteria validation

In a semi related question looking at primary sources the sentence, "The criteria have not been validated for research purposes."PMID 16603058, I am not sure if this material is even correct. This review talks about a study comparing the Canadian criteria favorably to the Fukuda criteria. I'm inclined to say remove this sentence on the basis if it being an offhand comment in a primary study, and it being somewhat contradicted by a review. Comments anyone? Ward20 (talk) 02:00, 9 November 2009 (UTC)

Ward20, I moved your query as it came out of nowhere in the Maes dispute. Agree with removal of sentence. Sam Weller (talk) 12:53, 9 November 2009 (UTC)

Most definitely agree as well.87.113.69.200 (talk) 14:15, 9 November 2009 (UTC)

Agree with removal Jagra (talk) 07:47, 11 November 2009 (UTC)

PMID 19855350 Frank N.M. Twisk and Michael Maes

I agree with Jfdwolff that PMID 19855350 is not on the same MEDRS level to directly refute the reviews in use in the Cognitive behavioral therapy section. It may have some use in the last paragraph of that section that talks about patient views. I wouldn't add more weight to the paragraph but the Twisk and Maes article might be used as a source in to refine some wording. It might be useful at Controversies_related_to_chronic_fatigue_syndrome#Etiology.2C_diagnosis_and_treatment. I don't have the full text of the article so I won't attempt it. Ward20 (talk) 23:38, 8 November 2009 (UTC)

I've just read through some of this "review". I know we aren't really meant to pick apart studies on wikipedia (that is what the peer reviewers are apparently supposed to do), but please humour me. This is the entire text of the section where they conclude that the effect of CBT/GET is neglible:

"The abovementioned Cochrane review (Price et al. 2008) concluded that, solely based upon fatigue scores, the clinical response to CBT was 40% in contrast with 26% in usual care. However, many participants in the underlying studies were ”chronic fatigued people” and not ME/CFS patients. Taking into account the placebo effects and the fact that fatigue is not an objective measurement and is just one of the ME/CFS criteria, one can conclude that the effectiveness of CBT/GET in treating ME/CFS is non-existent."

So, they admit that CBT results in 40% response vs 26%, and then conclude that the effectiveness is non-existent with some vague hand-waving about 'placebo effects' and 'not ME/CFS patients'!

I'm certainly no fan of CBT (which I believe is a pretty poor treatment), but this so-called review is just a bunch of crap put together by a patient who is out to debunk CBT. --sciencewatcher (talk) 00:40, 9 November 2009 (UTC)

You may be right and it doesn't seem to be classified as a review. (belated)Ward20 (talk) 19:39, 9 November 2009 (UTC)

Apologies for my revert. I hadn't caught up yet, so didn't realize it had been reverted and re-reverted by others, and it occurred to me only afterwards that I'd done a BRR instead of BRD in any event. I also took the quality of the source on faith, but clearly from the discussion here, it's less-than-impressive. —RobinHood70 ^{(talk • contribs)} 02:43, 9 November 2009 (UTC)

Oops I reverted then reverted again..hadn't read the talk. I'll leave in out for now until someone gets the wording correct..87.113.84.250 (talk) 09:05, 9 November 2009 (UTC)

sciencewatcher so you say that "this so called review is just a bunch of crap put together by a patient who is out to debunk CBT". Just for the record Michael Maes is a Belgian Post graduate Neuro-Psychiatrist who has a Ph.D from the University of Antwerp. He has studied in Chronobiology of Psychiatric Disorders and held numerous other positions, so I think you can hardly call him a patient out to debunk CBT..87.113.84.250 (talk) 10:01, 9 November 2009 (UTC)

If this is the same guy as Professor Dr. Michael Maes, MD, PhD; Professor of Psychiatry, Department of Psychiatry and Neuropsychology; University Hospital of Maastricht, The Netherlands, he's a bit more than a postgrad. I'll read the paper to see if it's as bad as everyone thinks. From the quote I suspect they point out that CBT results based on patients who merely meet criteria for "chronic fatigue" are not valid, since CF cannot be ME/CFS according to WHO. Sam Weller (talk) 10:28, 9 November 2009 (UTC)

Yes he is that guy, I just couldn't quote all his CV, it would seem a little pretentious of me. But this is the whole point, this material is relevant and yet you try to insert it in the article and it just gets stonewalled over and over again. This text is questioning the very validity of those aforementioned studies and it raises some very interesting points, yet it is not allowed anywhere near the main article presumably because it dares to question the CBT/GET model that is so prominent in this article ..I just don't get it!!!!87.113.84.250 (talk) 11:00, 9 November 2009 (UTC)

From what I can decipher of this discussion, it's yet another example of lengthy discussions that result from not simply identifying the highest quality, secondary review sources, and using them, rather than trying to sort lesser quality reviews and whether to use them. You can cut through this by locating recent, high quality secondary reviews and seeing what they say about CBT in CFS. An overview article, with several daughter articles, should use only the most recent, highest quality reviews. The rest of the back-and-forth can be eliminated by focusing on that. SandyGeorgia (Talk) 10:38, 9 November 2009 (UTC)

I think that's a simplistic view, SandyGeorgia. The evidence out there is contradictory and to limit reporting to only the highest quality sources is to ignore the larger debate that's occuring in the medical community. Our "job" at Wikipedia, if you can call it that, is to report the facts, and one of the central facts of even the most cursory glance at CFS is: there's a debate about the cause of, and treatments for, CFS. To only report on CBT is to completely ignore that debate and make the article lop-sided. There have been numerous reviews of CBT, some of which call it into question. To imply that the highest quality reviews trump everything else is inherently biased in this case.

As I mentioned elsewhere, please remember that both primary and secondary sources that directly refute claims made by other secondary sources are an acceptable and appropriate use of sources according to MEDRS. (Note that I'm not making any implications about the quality of the source in the title, since I haven't yet examined it. If it's truly abysmal, then obviously we should find something better if possible.) —RobinHood70 ^{(talk • contribs)} 11:34, 9 November 2009 (UTC)

Doesn't it say that you can't use a lower quality source to refute a higher quality one? I would suggest that this review is used just to give the opinion of patients rather than to refute CBT - similar to how we have used the Hooper 'review'.

As far as I can see, Twisk is a patient, and Maes runs his own clinic offering somewhat dubious treatments (www.michaelmaes.com). --sciencewatcher (talk) 15:36, 9 November 2009 (UTC)

perhaps I'm misreading RobinHood's statement, because it's certainly wrong and Sciencewatcher's is right. Our "job" at Wikipedia is to report from highest quality sources, not invent from primary sources. SandyGeorgia (Talk) 16:41, 9 November 2009 (UTC)

A search for "Michael Maes" on PubMed reveals 79 papers, mostly biomedical. Sciencewatcher should have researched Maes' professional background before dismissing the paper as "a bunch of crap put together by a patient". And now we have "runs his own clinic offering somewhat dubious treatments". Using treatments that lack scientific backing did not seem to bother Sciencewatcher when adding David Smith's website to the article a while ago, which supports the use of antidepressants for both children and adult CFS patients. Heaven forbid practitioners explore treatments in a condition with almost no treatment options!

As for Twisk & Maes 2009, Sciencewatcher failed to mention the much larger chunk of text where they describe how they arrived at their conclusion. They question the common use of the Oxford criteria in CBT/GET research, although some sources would have been good. There is no guarantee that the Oxford criteria actually selects CDC-defined patients (and probably even excludes people who meet some definitions of ME).

The Malouff et al 2008 systematic review on CBT [11] noted that studies using Oxford criteria "had a trend towards significantly higher effect sizes than studies that used the CDC 1994 criteria." (0.83 [0.40-1.26] vs 0.40 [0.02-0.78])". They later state this was overall a nonsignificant trend, but also remained open to the implications if this difference continues to be found in future research. Considering that the evidence for a sustained clinical response at followup was inconclusive in the Cochrane CBT review [12] and the effect became insignificant at followup in the Cochrane GET review [13] review, a placebo effect that regresses towards the mean is possible, although Malouff et al 2008 suggests otherwise.

Twisk & Maes 2009 explains that (1) evidence exists to dispute the rationale of the (current) biopsychosocial model(s) of ME/CFS, (2) weaknesses in the research exist which question the claimed efficacy and implied generalizability of the related treatments CBT&GET, (3) clinical observations and biological research suggest that exertion is potentially dangerous rather than beneficial. It is unjustified to rubbish the contents of an entire paper because one point could have been worded better; Sciencewatcher is welcome to attempt a "debunking" of the rest of the paper's points. However, as pointed out by others, the paper does not rank high on WP:MEDRS.

_Tekaphor (TALK) 17:03, 9 November 2009 (UTC)

Regarding dubious treatments: have a look at his website and you'll see stuff like autism being caused by gluten. David Smith's treatments are all mainstream and backed by science. And if you read Malouff, they compared CDC with Oxford criteria for CBT: even with CDC criteria there was a significant improvement, although Oxford had higher improvement. Malouff is a more reliable source for this. --sciencewatcher (talk) 18:54, 9 November 2009 (UTC)

The entire discussion of who the researcher is is interesting but not entirely on topic. Plenty of prolific researchers publish information seriously disputed by their colleagues (reference Comings in Tourettes research-- do a PubMed on him to see how often he's published, and then I'll produce the journal reviews that soundly and convincingly rebut some of his findings because of methodological issues like ascertainment bias.) The methodologies used for determining who to cite in this discussion amount to original research. Cite the article to high quality secondary reviews. SandyGeorgia (Talk) 19:03, 9 November 2009 (UTC)

(outdent) Yes, SG, you apparently did misread my post, as I didn't suggest "inventing" anything. I said that there is controversy on the topic of CFS cause and treatments, and that it is our job to report that controversy. We don't present one particular "truth" at Wikipedia, we present verifiable fact. To quote from MEDRS, "Individual primary sources should not be cited or juxtaposed so as to 'debunk' or contradict the conclusions of reliable secondary sources, unless the primary source itself directly makes such a claim (see Wikipedia:No original synthesis). Controversies or areas of uncertainty in medicine should be illustrated with reliable secondary sources describing the varying viewpoints." (emphasis added) In other words, controversy, such as there is with CFS, should be reported using reliable secondary sources (with no mention made of contributors randomly deciding which source is "better"), or in the absence of those, using primary sources if and only if they directly refute the original source, only to show the fact that there is controversy about the issue, and assuming they're from a reliable source. In no way did I ever state or imply that we should only present one viewpoint or create facts out of thin air. Nor am I picking "my version" of the truth and espousing only that — given what we know of CFS, I would be making this same argument if someone had suggested eliminating the CBT/GET section or "debunking" it. —RobinHood70 ^{(talk • contribs)} 19:59, 9 November 2009 (UTC)

Sciencewatcher: As a person with Celiac, I can say that the idea of gluten causing autism isn't unheard of. I know I've seen studies on a relationship between gluten and some autism reported in various Celiac-related journals and so forth. I can't say I paid much attention to them, however, so it's entirely possible that they were all pointing at the same original study. (As I recall, the general thought was that the gluten was triggering a Celiac or Celiac-like reaction causing malabsorption in the small intestine which in turn led to chemical imbalances resembling autism. Celiac is one of the "great immitator" diseases, so that's not an unreasonable theory, but like I say, it wasn't something I paid close attention to.) One way or the other, though, this isn't some random factoid that was pulled out of the air and nobody else has ever written about. —RobinHood70 ^{(talk • contribs)} 20:13, 9 November 2009 (UTC)

Gluten/autism is one of those dubious theories that just won't die. It is different from Celiac - the theory is that gluten acts like morphine and causes addiction. However trials have shown that gluten free diets have no effect, and urine metabolites are no different from controls, i.e. it's junk science but some people still keep beating the dead horse. A bit like all the MSG conspiracy theories that people still believe in (go to your supermarket and you'll see lots of MSG free foods even after over 30 years of research showing there are no health effects!). Anyway, we're getting very off topic here. --sciencewatcher (talk) 21:20, 9 November 2009 (UTC)

Well, that's certainly a spin on it I'd never heard before! I can see why you'd be a little more wary of that one. —RobinHood70 ^{(talk • contribs)} 22:21, 9 November 2009 (UTC)

Without commenting on its quality, can I confirm PMID 19855350 is a review, i.e. a secondary source. PubMed indexation takes time for new papers. PMID 19427734 is another new paper also awaiting indexation. Without reading it you would not know it's a (high-quality imo) systematic review. Sam Weller (talk) 20:32, 9 November 2009 (UTC)

ScWa, as far as I am aware, there is no systematic review that concludes antidepressants are effective for CFS (especially in children and at lower than usual doses). So perhaps they are not really "backed by science" any more conclusively than the few RCT's of other treatments you find dubious. I am not criticising Smith here, but am simply noting selective standards and your tendency towards character assassination. Responding to "And if you read Malouff, they compared CDC with Oxford criteria for CBT" etc; if you read my previous post, it should be obvious that I have indeed read Malouff et al 2008 since I directly quoted from it on that exact same issue and even included statistics. Regarding Maes' website, I haven't really looked at it yet, it seems difficult to navigate and suddenly changes languages. - Tekaphor (TALK) 14:46, 10 November 2009 (UTC)

Hi Sam W. It does not look like it is listed as a review. There is no "Publication Types" option at all for me yet. - Tekaphor (TALK) 13:15, 10 November 2009 (UTC)

Hi Tek, I meant, "I can confirm", not "can I confirm". It is titled "review", and it reviews physiological evidence that doesn't support exercise regimes that increase relentlessly regardless of patient capacity. It's just that PubMed hasn't indexed it yet.Sam Weller (talk) 10:27, 11 November 2009 (UTC)

There is a difference between 'extrapolating' a proven effective treatment such as anti-depressants to children, and flat-out pseudoscience. However getting back to the Maes + Twisk 'review': their conclusion that CBT has no effect is based on two points: placebo effect, and the fact that the patients didn't actually have CFS. Let's examine each.

[1] Placebo: If you search in the paper for the word 'placebo' you don't find any other instances of it, so clearly they haven't explained that anywhere else in the paper.

[2] CFS criteria: they say that the patients in the Cochrane review 'were ”chronic fatigued people” and not ME/CFS patients'. However when I look at the Cochrane review it says that 7 studies used CDC Fukuda (one of which waived the 4 additional symptoms), 3 studies used Oxford (one of which used CDC as well), another 2 used Australian, and the rest used non-standard criteria. So the premise that these patients didn't really have CFS because all the studies used the Oxford criteria is clearly wrong. As you can see, twice as many of the studies used CDC criteria as Oxford!

--sciencewatcher (talk) 15:48, 10 November 2009 (UTC)

Taking another look, you're correct that they do not adequately discuss placebo effect or explain why the Cochrane CBT review is dismissed in the same manner as the 2007 York Review. However, it is misleading to state that "twice as many of the studies used CDC criteria as Oxford" in the implied context that the results are mostly based on CDC criteria, because not all these studies were used for the same outcomes. For example, Comparison 1 Outcome 2 of the Cochrane CBT review (which the 40% vs 26% figure was based on) involved 4 studies and only 1 used regular CDC criteria (Huibers 2004 = Dutch CIS, O’Dowd 2000 = CDC, Prins 2001 = CDC with exceptions, Surawy 2005 = Oxford criteria), so it is still possible that the results were mostly based on "chronic fatigue". I have not done the same analysis on all the other comparisons and outcomes yet, but a quick look suggests a similar pattern. And even if they are not, many of these other outcomes were deemed inconclusive or insignificant anyway. - Tekaphor (TALK) 18:07, 10 November 2009 (UTC)

You could be right - I only took a quick look at Cochrane and it seemed to say 7 used CDC but one of thoese didn't use the full criteria. Anyway, I think the point is that this Maes/Twisk paper doesn't really do a very good job of debunking CBT. I notice there is no mention of CDC/Oxford criteria in the treatment article at present with regard to CBT. It might be worth putting it in and referencing the Malouff review which specifically compares them. --sciencewatcher (talk) 19:00, 10 November 2009 (UTC)

Michael Maes does more than MERELY run a clinic (in a major centre) and offer dubious treatments, AS INTIMATED by SW. He is well qualified and published as indicated by others, including on CFS, so he has a website, but no one is citing that? The work should be assessed on its merits not on POV. Jagra (talk) 07:45, 11 November 2009 (UTC)

And if you look at my "15:48, 10 November 2009" comment above, you'll see that I do just that. --sciencewatcher (talk) 15:33, 11 November 2009 (UTC)

Thanks Sam W. - Tekaphor (TALK) 15:54, 17 November 2009 (UTC)

XMRV review in INFECTIOUS DISEASE ALERT

An informed abstract and commentary on Lombardi VC et al. Science. 8 October 2009: [14]. Secondary source, already? Sam Weller (talk) 09:34, 12 November 2009 (UTC)

Yea but I am not sure what the standard of peer review is there. Anyway it was written by an expert in infectious diseases and it sounded like he understood the subject matter so I am going to switch my vote from neutral to support it's inclusion in the RFC, per this article you have found and some additional comments people have made.--Literaturegeek | T@1k? 22:30, 14 November 2009 (UTC)

Incorrect use of sources in this article, XMRV retrovirus

I came here after this was posted elsewhere.

Please reference WP:MEDRS regarding the use of primary sources versus secondary reviews, and also WP:RECENTISM regarding announcing recent studies, unvetted, in this article. Single studies that have not been published in secondary reviews are primary sources.

I have removed this paragraph, but considering this incorrect use of primary sources, I'm concerned that the rest of article might need review for correct sourcing. An argument could be make for including The New York Times article in External links, but wrt RECENTISM and MEDRS, any mention of the XMRV retrovirus in the article gives undue weight to an issue that has received no mention in secondary reviews. Please review the rest of this article more carefully for compliance with Wiki policy and guideline. Wikipedia is an encyclopedia, not a newspaper or support group (see WP:NOT).

I've also tagged the article because I see other primary or sources that do not meet WP:MEDRS; a thorough review of the entire article is needed to resolve these problems. SandyGeorgia (Talk) 13:34, 8 November 2009 (UTC)

I have reverted your good faith deletion, as the story has been extensively discussed above:[15]. You seem to be unaware that it is sourced to Science (journal), not the NYT. Re your general comment, the editors have worked hard to ensure that all items comply with MEDRS. Your comment about 'support group' is, frankly, insulting. Sam Weller (talk) 13:39, 8 November 2009 (UTC)

The section (above) linked is interesting, but it evidences no understanding of WP:MEDRS and the correct use of secondary review or primary studies. SandyGeorgia (Talk) 14:22, 8 November 2009 (UTC)

You don't seem to understand WP:MEDRS or WP:V or the distinction between and correct us of primary vs. secondary sources; that the primary study is published in a science journal is wholly irrelevant. It is still a primary source, unvetted by secondary review, and subject to recentism. The rest of this article needs review for incorrect sourcing. Do not remove the article tagging until the primary sources issue has been resolved. SandyGeorgia (Talk) 13:50, 8 November 2009 (UTC)

The article is also riddled with RECENTISM and weasel words: any time there are words like "recent" and "claim" in the article, there is likely to be a problem with the overreliance on primary sources in place of secondary reviews. I've added just a few {{MEDRS}} tags to illustrate the problem; more can be added as necessary. SandyGeorgia (Talk) 14:02, 8 November 2009 (UTC)

SandyGeorgia, I reverted your subsequent "Over-reliance on primary sources" tag, because it was incorrectly linked to non-medical primary sources. Are you suggesting an intensively peer-reviewed study that appeared in Science is a 'primary source' comparable with a firsthand report of a traffic accident? As for the MEDRS hierarchy, it is well understood:

In general, medical information in Wikipedia articles should be based upon published, reliable secondary sources whenever possible. Reliable primary sources can add greatly to an article, but must be used with care because of the potential for misuse. For that reason, edits that rely on primary sources should only describe the conclusions of the source, and should describe these findings clearly so the edit can be checked by editors with no specialist knowledge. In particular, this description should follow closely to the interpretation of the data given by the authors, or by other reliable secondary sources. Primary sources should not be cited in support of a conclusion that is not clearly made by the authors or by reliable secondary sources, as defined above (see Wikipedia:No original research).[16]

Please show any single instance in which this article did not follow the 5 or 6 points in that guideline re PMID 19815723 . Do you also advocate deletion of PMID 19815723 from the XMRV page? Sam Weller (talk) 14:40, 8 November 2009 (UTC)

I advocate a rewrite of the article, basing it on secondary reviews, giving due weight to those reviews and eliminating undue issues from primary sources, hence avoiding recentism and weasel words introduced by the extensive reliance on primary sources (whose inclusion also likely introduces synthesis by the way, since this article strings together sources to draw conclusions which may not be made in the sources). The argument made several times on this page (that a primary study is published in a peer-reviewed journal) evidence some confusion here, that Wiki is an encyclopedia-- not a newspaper-- and is primarily based on secondary sources. The article should be balanced by being written primarily from high-quality secondary source reviews, and avoid furthering information that has not been vetted by additional studies or subjected to secondary reviews. The potential for misuse in this case is clear; it breaches recentism, possibly WP:SYN, certainly WP:UNDUE, and furthers an unproven notion that hasn't been subject whatsoever to secondary review. Of bigger concern is that similar is found throughout the article; this is but one example SandyGeorgia (Talk) 14:53, 8 November 2009 (UTC)

I'm normally an ardent advocate of the WP:MEDRS rules on secondary sourcing, but there are some times when exceptions have to be made, and the XMRV paper is one of them. The study is potentially so important, and has received such extensive coverage, that some mention of it needs to be made. One of the consequences of being "the encyclopedia that anybody can edit" is that points that receive wide popular interest need to be discussed, for the purely practical reason that attempts to keep them out completely result in constant draining edit-wars. Looie496 (talk) 15:33, 8 November 2009 (UTC)

I submit that the "constant draining edit-wars" are because this article is not written from high-quality secondary reviews, and cherry picks primary sources to be included, resulting in recentism, synthesis, undue weight, and weasle words-- all of which lead to an unstable and poor article. If the article simply relied on secondary reviews, many of these issues would be avoided. On what basis do you say it is "potentially so important" if other medical sources haven't reviewed it ? SandyGeorgia (Talk) 16:00, 8 November 2009 (UTC)

I have to agree with SamW on this one. This is a heavyweight article published in a well respected journal and deserves to be mentioned as per 'Wikipedia:Reliable sources (medicine-related articles)'. There is already plenty of discussion on this further up the talk page..87.115.61.230 (talk) 15:38, 8 November 2009 (UTC)

I'd have to agree with Sandy's concerns about WP:UNDUE. While we should not dismiss primary studies, it is important to keep a balance between primary-sourced and secondary-sourced text. Taking as the obvious example, in "Pathophysiology" there are two paragraphs, roughly equally sized. The first paragraph contains 5 sources, 4 of them secondary and 1 primary (as far as I can see). The second paragraph contains 3 sources, all of them primary (in my opinion). I can understand the desire to report what may be a breakthrough discovery in the pathophysiology of CFS, but in an encyclopedia, we should be standing back and awaiting solid reviews of new evidence. If the results of the study are important, they will soon receive coverage in the wider literature. My concern here is not the inclusion of the study, but the weight given to it in the text, compared to that given to older, well-established views. --RexxS (talk) 16:23, 8 November 2009 (UTC)

See the next section. From experience, I feel confident in assuring editors here that you can avoid edit warring and lengthy discussion on talk over primary sources by locating the latest, highest-quality, secondary reviews, and revamping the entire article to use those reviews, and give due weight to items mentioned in them. The Dispatch I linked below discussed how to locate the latest journal review articles. SandyGeorgia (Talk) 19:25, 8 November 2009 (UTC)

<---OUT Thanks to SandyGeorgia for reviewing the article and discussing these concerns to improve it. I agree and disagree with certain issues. I agree that the bulk of the article should rely on secondary sources, and should be used whenever possible. I agree about weasle words, synthesis and undue weight. Article material should not draw conclusions not in sources. However, I studied WP:MEDRS for about the 20th time and there are many mentions of the proper use of primary sources. As Sam pointed out "reliable primary sources can add greatly to an article" as long as there is no interpretation of the data.

I thought this was a relevant example in WP:MEDRS#Respect_secondary_sources of a primary source being used similar to PMID 19815723:

If an important scientific result is so new that no reliable reviews have been published on it, it may be helpful to cite the primary source that reported the result. Although popular-press news articles and press releases often tout the latest phase II clinical trial, such trials are rarely important enough to mention in an encyclopedia. Any such results should be described as being from a single study, for example:

"A 2009 U.S. study found the average age of formal autism spectrum diagnosis was 5.7 years." (citing PMID 19318992)

...When in doubt, omit mention of the primary study, as per WP:RECENTISM.

Concerning WP:RECENTISM, an essay, I don't believe it is as important as the policy of common sense in this case. The notability of PMID 19815723 is well established on this talk page. RexxS makes a valid point about WP:UNDUE in "Pathophysiology", but I believe that can addressed by adding more descriptive material in the first paragraph which would greatly improve the article IMO. The two primary sources in the last sentence of the second paragraph (at this time removed) can be replaced by a secondary source that covers that material.

As far as "constant draining edit-wars", there seems to be a large reduction in those for this article recently, and I believe these discussions on the talk page have demonstrated cooperation in improving the article. Ward20 (talk) 21:04, 8 November 2009 (UTC)

Thanks for taking an interest in this CFS article, SandyGeorgia. To pick up on your above suggestion, "I advocate a rewrite of the article, basing it on secondary reviews, giving due weight to those reviews and eliminating undue issues from primary sources....". In principle, this is good advice, and as you say, may be a way to avoid edit-warring. However, there is a difficulty here, in that, In the case of CFS research, a huge divide exists between the psychiatric camp, many of whom who believe the CFS is an illness that is "All in the Mind", and the biological camp, who believe that CFS has a physical cause, such as genetics, viruses, toxins, and so forth. In terms of some of the major authorities such as the CDC, NIH, the psychiatric camp dominate opinion and agenda. So in practice, if we were to use the sources you advocate, the CFS article would be biased towards the psychiatric view of CFS. If it were not for this very unfortunate real world political situation, writing this CFS article would be much easier. Whereas in the real world, opinion on CFS is highly polarised, here, we would like to find balance. --Drgao (talk) 00:22, 9 November 2009 (UTC)

Quoting a response to your similar post at Talk:Autism (referencing WP:SOAP)

• "Wikipedia is not the place to write the great wrongs of the world. If the writings of experts tends towards one viewpoint, then so must Wikipedia. We have policies on this kind of thing. Colin°Talk 23:57, 8 November 2009 (UTC)" SandyGeorgia (Talk) 00:31, 9 November 2009 (UTC)

Quoting my reply to said response:

We are not talking about being Don Quixote, but rather being informed on the subject. If you don't know about the science, the history and the politics, you are probably not going write a good article. I am concerned with accuracy. --Drgao (talk) 00:33, 9 November 2009 (UTC)

The problem being your accuracy may not the same as another editor's accuracy. That is when intractable conflicts begin. WP solves this in part with WP:Neutral point of view, WP:Verifiability,WP:Reliable sources, and WP:consensus. Ward20 (talk) 01:13, 9 November 2009 (UTC)

To those against: would you rather have not known? Don't you find it interesting, even if it is preliminary? Isn't the knowledge Wikipedia has to offer more important than rules or guidelines? Should we deprive others of this knowledge? This last question might be a bit harsh, but the point still stands. MichaelExe (talk) 01:46, 9 November 2009 (UTC)

Does this discussion apply equally to prostate cancer? Incidentally, XMRV is three times more prevalent in severe CFS than in aggressive PC, so far. Sam Weller (talk) 09:25, 9 November 2009 (UTC)

Request for Comment: should XMRV be mentioned in this article?

Should XMRV be mentioned in this article. Ward20 (talk) 21:48, 8 November 2009 (UTC)

This has gone back and forth, and it's clear that we need some sort of structured process to make this decision. Please respond with a brief statement of your opinion, and please don't respond to other people's opinions here -- start a new section if you feel that discussion is needed. Looie496 (talk) 20:25, 8 November 2009 (UTC)

• Yes -- potentially very important finding, sourced from Science; a brief account is warranted. Looie496 (talk) 20:25, 8 November 2009 (UTC)
• No -- regardless of the mention in Science, it remains a primary study, has been the subject of no independent review, and including it is WP:RECENTISM and WP:UNDUE. We don't know if it's a "potentially important finding" until it has been subjected to independent scrutiny. See broader discussion at #Primary sources tag incorrectly removed. SandyGeorgia (Talk) 20:34, 8 November 2009 (UTC) Update, even stronger No considering Rexx's info that it can be included in a sub-article; including it there would be fine, if it's written correctly and not given undue weight. SandyGeorgia (Talk) 23:52, 8 November 2009 (UTC)
• Yes -- The notability of PMID 19815723 is well established on this talk page. See also Talk:Chronic fatigue syndrome#Incorrect use of sources in this article.2C XMRV retrovirus —Preceding unsigned comment added by Ward20 (talk • contribs) 21:04, November 8, 2009
• Yes -- so long as it complies with MEDRS primary study guideline (which it did). Appearance of undue weight is exaggerated by undue parsimony in the preceding paragraph. Sam Weller (talk) 21:08, 8 November 2009 (UTC)
• No. SandyGeorgia is spot on that we are spending waaaaay too much time haggling over anecdotal accounts/single studies that have not yet made it into reviews or secondary sources. I totally agree with her assertion that this is the cause for the continuous strife here. JFW | T@lk 21:25, 8 November 2009 (UTC)
• Yes -- Agree with Sam so long as it complies with medrs..87.115.133.126 (talk) 22:29, 8 November 2009 (UTC)
• Yes -- The potential role of XMRV can be addressed briefly and in a balanced way, sticking to the major conclusions of the published work as stipulated in WP:MEDRS for primary sources, without violating guidelines. Clearly, this work requires extensive validation before it becomes a major part of the article. The WP:RECENTISM guideline should not prevent people from coming to WP to find balanced treatment of a recent finding published in a reliable source. Let's not give a guideline WP:UNDUE weight. :-) -- Scray (talk) 22:35, 8 November 2009 (UTC)
• Yes -- Most definitely. --Drgao (talk) 23:08, 8 November 2009 (UTC)

• — Drgao (talk • contribs) has made few or no other edits outside this topic. SandyGeorgia (Talk)

While true, this is not at all unusual for a beginner, which his contributions (and fighting with SineBot) clearly label him as. Being an SPA is not necessarily a bad thing - I think we can assume good faith in this instance. Also, looking at his contributions prior to a week ago, they were moderately varied. I don't think it's necessarily accurate to consider him an SPA. —RobinHood70 ^{(talk • contribs)} 02:57, 9 November 2009 (UTC) (edited 03:00, 9 November 2009 (UTC))

I am not quite sure what an SPA is, or whether it is good to be one or not... I forget to include the brief statement of opinion, so: I think XMRV should perhaps only take say one sentence in the main article a this stage. --Drgao (talk) 05:27, 9 November 2009 (UTC)

SPA = Single-purpose account, which is what SandyGeorgia linked to when she mentioned "few or no other edits". It's not necessarily a bad thing, but it's sometimes seen as weakening or invalidating someone's arguments or vote on a subject. —RobinHood70 ^{(talk • contribs)} 08:02, 9 November 2009 (UTC)

• Not yet -- It is described in the sub-article Pathophysiology of chronic fatigue syndrome where there is room to discuss it as a new competing theory, without the inevitable problems of weight if it were included here - a summary-style article. At present this is fits with our principles. Should the role of XMRV gain wide acceptance in the broader literature, particularly if it becomes the leading theory, then it would be appropriate to include it here at that time. --RexxS (talk) 23:50, 8 November 2009 (UTC)
• Yes -- As per Scray's summary, above. —RobinHood70 ^{(talk • contribs)} 00:17, 9 November 2009 (UTC)
• Yes, I support it's inclusion, an expert review article has been found and some comments in RfC have swayed me, See Talk:Chronic_fatigue_syndrome#XMRV_review_in_INFECTIOUS_DISEASE_ALERT Neutral but leaning towards no (if that makes sense). As it is already in the Pathophysiology of chronic fatigue syndrome article (which is a more relevant article) it's mention is not necessary in this article. It is a primary source but it was a laboratory study [so less problems of subjectiveness in results] and its findings are potentially significant to the subject matter (and should be of interest to readers looking for uptodate information) so it should be mentioned somewhere on wikipedia and Pathophysiology of chronic fatigue syndrome seems the best place for it to be cited. The CFS article should be a general overview of the subject matter so probably best waiting for a review article before this new research is cited in the main CFS article. It may take several years before a review article comes out though.--Literaturegeek | T@1k? 00:55, 9 November 2009 (UTC)
• No per RexxS. The newsworthiness of this finding makes me believe it should be included, as long as it is clearly qualified in the text as what it is (a preliminary, primary finding with no established causative link). However, it should not be mentioned here. The complexity of the subject matter makes CFS a prime topic for the application of summary style, and a mention at Pathophysiology of chronic fatigue syndrome is more than appropriate at the present time. If and when a causative link between XMRV and CFS is established, then it can be mentioned in the main article (which would of course have to be rewritten anyway if such a significant change in the understanding of the disease occurred). Fvasconcellos (t·c) 09:41, 9 November 2009 (UTC)
• No per SandyGeorgia. It should wait until it is discussed in secondary sources. The importance of this keeps being mentioned by editors but I think the importance should be shown in sources and a primary source isn't enough. If this really is important it will get reported in other reliable sources. We should wait until the other sources are available. --CrohnieGal^Talk 10:40, 9 November 2009 (UTC)
• No with a caveat. It's recentist, unconfirmed, the prostate cancer story is contradictory and the history of CFS and virus claims is discouraging. That said, the media attention to the story could suggest a brief mention, perhaps in a section on popular views and responses or similar. Keepcalmandcarryon (talk) 15:38, 9 November 2009 (UTC)
• Yes. The media coverage also deserves mention. - Tekaphor (TALK) 17:10, 9 November 2009 (UTC)
• No per RexxS and WP:DUE. This is an encyclopedia, we can afford to wait and see if this is a flash in the pan or an emerging paradigm or whatever. Social impact would of course be as good as scientific impact for these purposes. - 2/0 (cont.) 19:42, 9 November 2009 (UTC)
• Yes. Give it due weight along with other potential causative factors, but don't delete it entirely. Fences&Windows 21:08, 10 November 2009 (UTC)
• Granted it is a single, speculative study, and we do a very poor job at providing appropriate caveats for such things (then again, so do the mainstream media). Particularly on this article, with its political history, I'm a bit wary. That said, the article was published in a top-tier journal and has sparked quite a bit of interest, both in the scientific and lay communities. The article does seem a bit incomplete without any mention of XMRV; I think the average reader will expect, rightly, to see something about it. Perhaps we can find a way to present the existing data briefly, with appropriate caveats? MastCell ^Talk 21:53, 10 November 2009 (UTC)
• YES It is notable, well sourced as a fact and worth a mention in the main Article at this time. I agree that viral findings have tended to be disappointing in the past, but they have rarely been so well sourced so early, any caveats should also be well sourced, not the usual vested interest 'mixed findings' sort of off hand comments. Jagra (talk) 07:34, 11 November 2009 (UTC)
• yes, of course it should be mentioned, and not including it seems very short-sighted. It is not fringe, it is reputable work, it is widely reported in the media. It is 100% certain to be discussed by other peer-reviewed sources. Whether it will be confirmed, whether it accounts for all cases of the disease, whether it perhaps might be an error, remains to be seen, but at the present time there's enough to include it , and to give the standing as a possible but unconfirmed hypothesis. It should not be relegated to a secondary article--the secondary coverage is sufficient to keep it in the main one. Of course there will need to be further rewriting, as with everything in science. BTW, the finding surprised me very much indeed--I certainly did not think it might conceivably be this simple. DGG ( talk ) 22:15, 13 November 2009 (UTC)
• yes, Per the discussion with the CFSAC committee [17], secondary studies have been done and reported anecdotally and were received by an expert body (the panel). Additionally, the newsworthiness is considerable enough for inclusion in the article.Jclark77 (talk) 05:50, 22 November 2009 (UTC)
• yes the discovery of the, possible, effects of the XMRV virus among ME/CFS patients should be added to this article. Yet only to tell the readers that there actually can be biomedical deviations.

---

Given a 2:1 ratio in favour of including the information, I'm calling this decided and removing the RFC tag. The one remaining question is: does it really belong in the History section of all places? I know this has been discussed before, but I don't think a conclusion was made. One way or the other, I would think Pathophysiology or Epidemiology would be more appropriate places for the information. —RobinHood70 ^{(talk • contribs)} 04:53, 23 November 2009 (UTC)

I've been bold and replaced the history entry with a condensed version of the previously entered pathophysiology text. I hope it's in the correct place. If not please feel free to correct text and positioning.StevieNic (talk) 09:06, 23 November 2009 (UTC)

Per the discussion with the CFSAC, I feel that inclusion of the new numbers of prevalence are warranted. I feel this way not only because it was in Science, but because in the presentation made by Dr. Peterson, the Cleveland Clinic ran a parallel study to ensure its repeatability in this video documenting the presentation to the CFSAC[18]. If this is not an example of a primary source that should be utilized, I don't think one exists. Dr. Peterson's presentation starts at approximately 1:25 in the video. Thoughts? Jclark77 (talk) 17:43, 8 December 2009 (UTC)

Per our verification requirements, unpublished prevalence claims should not be reported in this article or anywhere on Wikipedia. In addition, the caveats urged by MastCell and others, above, should be added, with the language at XMRV providing a model. Keepcalmandcarryon (talk) 01:03, 14 December 2009 (UTC)

Cohen's d value

If you're familiar with Cohen's d values, an effect size of .40 doesn't even break the threshold of having a moderate effect. To characterize an effect size of .40 as a 'significant improvement' can be misleading. There is a big difference in lay terminology between a finding having some significance and being described as a significant improvement.

For instance, take the following- it's not CFS related but rather deals with the above issue of statistical vs. clinical significance. 'Clinical versus statistical significance as they relate to the efficacy of periodontal therapy' http://jada.ada.org/cgi/content/full/134/5/583

Also related is the matter of something having an effect vs. being 'effective'. Here is a good example of a paper on CFS describing an effect and then being described as 'effective' by the authors. http://www.bmj.com/cgi/eletters/330/7481/14 —Preceding unsigned comment added by 74.51.82.241 (talk) 02:35, 16 November 2009 (UTC)

IP74, good point. Effect through efficacy through effectiveness is a continuum of increasing relevance, but mere effects are routinely misdescribed as effectiveness, often by vested interests. Sam Weller (talk) 09:13, 16 November 2009 (UTC)

I assume you mean 0.48. This is slightly below medium effect, and this is discussed in the Malouff review. In both the main article and the treatment sub-article we say 'medium effectiveness'.

An interesting point is discussed in Malouff which we don't note in the article: "Hence, one can conclude that CBT for chronic fatigue disorders has about the same efficacy as diverse psychological treatments for a variety of psychological disorders. This similarity might be relevant to whether the next Diagnostic and Statistical Manual, DSM-V, includes CFS as a diagnosis". --sciencewatcher (talk) 16:13, 16 November 2009 (UTC)

Questionable relevance. The CBT research does not reflect the full range of patient experience. The calculated results used in systematic reviews are mostly based on non CDC criteria and do not include the severe end of the spectrum (leaving out about 25-50% of patients). The CDC-1994 criteria itself is flawed and also doesn't account for severity. Anyway, CBT seems to be piggybacking off GET. As for your recent edit summary, it was incorrect, CBT does not have a moderate effect "for all patients", it has a moderate effect across the patient group, with a degree of heterogeneity. - Tekaphor (TALK) 15:52, 17 November 2009 (UTC)

I think those points are all already addressed in the article. --sciencewatcher (talk) 15:45, 17 November 2009 (UTC)

I hadn't yet caught up on the talk page discussion, but I re-inserted a qualifier ("many patients") into the CBT/GET section, as it's stated quite clearly in several of the reviews that not all patients were tested (as mentioned, severely affected were normally excluded) and that in some studies, at least some patients withdrew. The implication seems to be that it has an effect for many patients, but I agree with Tek that it's clearly not "all patients". —RobinHood70 ^{(talk • contribs)} 20:19, 17 November 2009 (UTC)

Malouff et al 2008 vs Cochrane 2008 CBT

I've been looking into these two papers for about a week, and the findings seem somewhat vague, fragile and conflicted. Sorry for the large post, most of it is copied quotations.

CBT piggybacking off GET

The Malouff et al 2008 review (PMID 18060672 | [19]) states: "A comparison in the present meta-analysis of treatments with and without cognitive elements provided no significant evidence that including cognitive components led to a greater effect. In fact, a trend occurred in favor of not including cognitive components. ... The results indicate that treatment including only the prompting of gradual increases in physical activity had a nonsignificantly higher effect size than treatment that also included cognitive components." The Cochrane 2008 CBT review (PMID 18646067 | [20]) states: "A highly significant difference in effect was shown for the CBT group in which increased activity was incorporated when compared with usual care. In contrast, a non-significant difference in effect was shown for the studies in which increased activity was not part of the CBT intervention when compared with usual care." [and CBT vs exercise, "The evidence is limited to two studies, both of which independently showed a lack of difference between CBT and exercise in reducing fatigue levels or increasing clinical response, at post treatment and at medium term follow-up." - Tekaphor (TALK) 03:59, 9 January 2010 (UTC)] Similarly, the Cochrane 2004/8(?) GET review (PMID 15266475 | [21]) states: "An intensive patient educational intervention added to exercise therapy delivered no added benefit when compared to exercise therapy with usual explanation." Does all this strongly indicate that CBT is piggypacking off GET and that the cognitive component is essentially useless?

Malouff et al 2008 vs Cochrane 2008 CBT

I don't fully understand why the conclusions of Malouff et al 2008 are much more optimistic compared to the Cochrane 2008 CBT review. In the Cochrane 2008 CBT review, 40% vs 26% showed a "clinical response" with an odds ratio of 0.47 (95% CI 0.29 to 0.76), while most of the other outcomes were insignificant or inconclusive. In Malouff et al 2008 however, about half are "recovered"; 5 studies (2/5 are CDC-1994) reported 33-73% "no longer clinically fatigued" (unweighted average of 50%) and an additional 3 studies (none are CDC-1994) reported 30-68% "large improvement or near-normal" (unweighted average of 54%). What about other studies? Two studies "showed essentially 0 effect size for CBT", one seemingly due to using "client-centered therapy" as a comparison or "may have been due to something about the participants, who were all on sick leave from work". Commenting on a sub-group analysis, the Cochrane 2008 CBT review authors state "... CBT was highly effective in reducing fatigue severity when compared with treatment as usual control, and, in contrast, there was no significant difference between CBT and waiting list control." Also, studies using CDC-1994 criteria seem to be in the minority, and going back to Malouff et al on this issue, I don't understand how d=0.40 (0.02, 0.78) for CDC criteria vs d=0.83 (0.40, 1.26) for Oxford criteria is not significant despite being twice the value with a higher range?

Group CBT

On group CBT, the Cochrane 2008 CBT review states: "Two studies used an individual CBT modality and four studies used group CBT. A highly significant difference in effect was shown for individual therapy and a significant difference of lesser magnitude was shown for group therapy when compared with usual care." Although the large Belgium evaluation study is not mentioned in any systematic review, "group CBT" was one of the main reasons given to explain its failure, which found an improvement to some self-reported measures but not objective measures. However, Malouff et al discuss group CBT (O'Dowd et al 2006) as being just as effective as individual CBT and also state that "Equivalence between individual and group treatment is commonly found in psychotherapy research ... ." O'Dowd et al 2006 is PMID 17014748 (CDC-1994 criteria), with 52 participants in the CBT/GA group, 50 for EAS (education and support group) and 51 for SMC (standard medical care). Outcome measures included SF-36 physical and mental health summary scales, Chalder fatigue scale, Hospital Anxiety and Depression Scale, General Health Questionnaire, physical function (shuttles walked, walking speed and perceived fatigue), health utilities index and cognitive function (mood, recall and reaction times). The CBT group showed a "statistical improvement" in SF-36 mental health score, Chalder fatigue scale and walking speed only (see abstract for figures). However:

• SF-36 physical scores were not significantly improved; 46% of the CBT group were within normal at followup (which sounds impressive by itself) but 30% were already "normal" at baseline (wait, what?) and 44% of the [standard medical care] group were also "normal" at followup.
• Even though a "normal" SF-36 mental health score of 74% for the CBT group again sounds impressive by itself, the EAS group = 67% and the SMC group = 70% while the baseline level for all groups was 52%.
• Similarly, "Of the CBT group, 32% showed at least a 15% increase in physical function and 64% achieved a similar improvement in their mental health. For the EAS and SMC groups, this improvement in physical and mental health was achieved for 40 and 60% (EAS) and 49 and 53% (SMC), respectively."

Considering the above and the conclusion in the abstract of PMID 17014748 (O'Dowd et al 2006), if such results are deemed by Malouff et al to have a value d=0.72 (nearly a "large effect") and is supposedly as effective as individual CBT (yet without any significant effect on SF-36 physical scores), what does this say about a value d=0.48? I'd also question how close the patients were at baseline before shifting into "normal" range, especially when Malouff et al mention nothing at all about severity. And if O'Dowd et al 2006 is anything to go by in general, the different groups don't seem that much different.

Different measures

While "fatigue" scores were significantly improved, Comparison 1 Outcome 3 in the Cochrane 2008 CBT review (3 studies) also showed no overall statistical improvement in SF-36 physical scores. The Chambers et all 2006 review (PMID 17021301 | [22]) discuss the "fundamental problem" of the wide variety of outcome measures used in research, the difficulty to compare the effects across studies and to conduct meta-analysis (Demitrack's paper PMID 16610962 is also an interesting read if you can access the full-text). Malouff et al 2008 apparently had no difficulty and concluded that "The objective measures of functioning had roughly the same effect size as interview ratings of functioning, and self-ratings of fatigue, functional impairment, and improvement." Although they both included some of the same studies, the Malouff et al 2008 and Cochrane 2008 CBT reviews have obviously also used a different selection of studies with different results. Who are the better statisticians and which review should we give greater weight to?

_Tekaphor (TALK) 15:31, 17 November 2009 (UTC)

A recent structured review of Malouff: "Inadequate information about participants and interventions, lack of reporting of study quality and differences between studies meant that it was difficult to assess the reliability of the authors’ conclusions." Also, [23] Sam Weller (talk) 17:22, 17 November 2009 (UTC)

Thanks Sam W. On this subject, it will be difficult to heed SandyGeorgia's call for "high-quality secondary reviews". - Tekaphor (TALK) 22:59, 22 November 2009 (UTC)

The addition of the meta-analysis PMID 20047707 by Sam Weller and Sciencewatcher [24] adds interesting context to the above conversation regarding improvements of fatigue: objective levels of physical activity (as measured with actigraphy in 3 RCTs) were not improved by CBT. - Tekaphor (TALK) 03:01, 7 January 2010 (UTC)

Like the amendments

I think the page has improved enormously but there are still aspects which need more thought. For example, re pacing, one can advise people to gradually increase activity levels, but many experience what is known as 'the plateau', i.e. a level above which more exertion triggers a relapse. There are two versions of pacing which does not require an increase in a activity. They're the most commonly used but not mentioned. Earlier references to them were removed.

Glad to see a more evidence-based discussion of CBT and GET.

EllenEllengoudsmit (talk) 08:43, 23 November 2009 (UTC)

Can you post the references here again so we can discuss them? Thanks. --sciencewatcher (talk) 16:32, 23 November 2009 (UTC)

Why not work out the definitions of the behavioral interventions at the main Treatment article? The they can be summarized here? I would like to know the different assumptions underlying CBT/GET vs pacing. This article doesn't do that. Sam Weller (talk) 11:15, 27 November 2009 (UTC)

Good idea. - Tekaphor (TALK) 03:26, 7 January 2010 (UTC)

Treatment vs. Management

According to MEDMOS, in cases where a disease is incurable, "Management" is the preferred section heading instead of "Treatment". Since some people recover from CFS in whole or in part, where others have little or no progress, I'm ambivalent about which is the appropriate choice. Does anybody else have any feelings on this issue one way or the other? Looking at the solutions provided, I'm leaning somewhat more towards "Management", but that then neglects those for whom those solutions were significantly helpful or curative. —RobinHood70 ^{(talk • contribs)} 10:16, 27 November 2009 (UTC)

You could follow the precedent of the Multiple sclerosis management section, which refers to the main article Treatment of multiple sclerosis. Sam Weller (talk) 11:12, 27 November 2009 (UTC)

Good idea. - Tekaphor (TALK) 03:05, 7 January 2010 (UTC)

Title of the article

I have no doubt that this has been argued before, but the name of the article seems to come down quite heavily on one side of a current debate. Might I suggest an alternative? ME/CFS is the name that the WHO used for the condition.

I only suggest this in the interest of NPOV. I have no interest in igniting a flame war. —Preceding unsigned comment added by 86.132.61.57 (talk) 00:25, 5 January 2010 (UTC)

Where do they use that name? I did a search and couldn't find it. ICD-10 (the current classification) doesn't even mention CFS. All mentions of the illness on WHO's website call it "chronic fatigue syndrome (CFS)" or just "chronic fatigue syndrome" as far as I can tell - no mention of ME. --sciencewatcher (talk) 01:23, 5 January 2010 (UTC)

If you do a search for "myalgic encephalomyelitis" on the WHO website [25] it does show up, but only several times, whereas a search for "chronic fatigue syndrome" reveals a lot more hits. However, ICD10 under G93.3 only lists [Postviral fatigue syndrome > Benign myalgic encephalomyelitis], with no mention of "chronic fatigue syndrome". Therefore, this article should then be PVFS/ME if going by the WHO, but we all know by now that Wikipedia does not care what the WHO's position is and bases its article names on popularity contests. - Tekaphor (TALK) 02:54, 7 January 2010 (UTC)

"moderate effectiveness"

The following sentence irks me:

"Cognitive behavioural therapy (CBT) and graded exercise therapy (GET) have shown moderate effectiveness for many patients in multiple randomized controlled trials"

If you look at the references, they never say 'many patients' anywhere. In fact, the 'moderate effectiveness' is actually for ALL patients. i.e. some patients will actually have a very high effect from the treatment, others will have moderate, and others will have no effect. The 'moderate effectiveness' comes from averaging all patients, as I understand it. So can we remove the 'many patients' bit?

I think it was added by TerryE or RobinHood, and the thinking behind it was to say that not all patients get helped by CBT and GET - which is true - but this isn't the right way of saying it. --sciencewatcher (talk) 16:01, 5 January 2010 (UTC)

I see your point, but I think it paints a different picture to say it was moderately effective for all patients because that's what it averages out to. What about wording like "varied effectiveness" or being more detailed and cover everything, including those that found the treatment detrimental and dropped out of the studies. I would support wording to the effect of "...moderate to high effectiveness in many patients while others reported no change or a worsening of symptoms...". —RobinHood70 ^{(talk • contribs)} 17:29, 5 January 2010 (UTC)

The refs just say 'moderate effectiveness' or similar so I think we should leave it at that and just expand on it afterwards or something. The point I'm making is that you can't tie the 'moderate effectiveness' to the number of patients who are helped by the treatment, as they are two different things. Maybe just add 'While some patients fully recover after CBT and GET, not all patients are helped and some report a worsening of symptoms' or something, along with refs. Although I'm wondering if that is even necessary, as we give more details right below.

Or perhaps we should just it as it is rather than convoluting it any more. What do others think? It looks incorrect to me, but perhaps I'm making too much of it. --sciencewatcher (talk) 18:13, 5 January 2010 (UTC)

You have a point, but the "moderate effectiveness" result was averaged from multiple RCT's. So when you say "some patients will actually have a very high effect from the treatment, others will have moderate, and others will have no effect", the same thing more or less also applies to RCTs (ie some RCTs will have a larger effect, others will have moderate effect, others will have no effect). Furthermore, if you really want to split hairs, only 1 of the 4 references used to support the sentence in question actually uses the phrase "moderate effectiveness" or even the word "moderate" in the context of effectiveness (Malouff et al 2008, which just happens to be the most optimistic out of the 4). How about something like " ... have shown an average of moderate effectiveness across ambulant patient groups in multiple randomized controlled trials." Or you could replace the word moderate with something else. - Tekaphor (TALK) 03:58, 7 January 2010 (UTC)

Malouff is the only review that (as far as I can see) actually looks in detail at the effect size in CBT - it's not more or less 'optimistic' than the others. And I don't think we need to say things like 'average ... across patient groups' as that is adding unnecessary verbiage. --sciencewatcher (talk) 16:44, 7 January 2010 (UTC)

CBT does not increase activity levels (PMID 20047707). A recent Swedish technology assessment review found no evidence that it helps return to work.[26] Partial translation: [27] Can we continue with a blanket "moderate effectiveness" in the lead, when it refers merely to fatigue and not activity levels or return to work?Sam Weller (talk) 10:25, 7 January 2010 (UTC)Sam Weller (talk) 11:44, 7 January 2010 (UTC)

That Swedish review only found one study. I just found another study which appears to show CBT does help return to work (http://eprints.bournemouth.ac.uk/1408/). But there really isn't enough evidence to draw any definite conclusions.

As for physical activity, that isn't a measure of disability and there could be reasons. I'm guessing that patients don't suddenly start running marathons after they feel better (at least, not if they have any sense!) If you look at Malouff they assess the effectiveness for various measures, including objective functioning, interview based functioning and self rating of improvement, all of which show a medium or high effect. --sciencewatcher (talk) 16:06, 7 January 2010 (UTC)

Perceived "fatigue" is not necessarily a direct measure of physical disability either, and patients do not have to "run marathons" to show statistically significant improvement to levels of physical activity. Although I have been suspicious of a discrepancy between subjective and objective measurements in CBT research, I was a little surprised to see the meta-analysis PMID 20047707 with no significant increase to physical activity and no significant role for physical activity in mediating the observed gains in subjective measures, especially from proponents of CBT and the cognitive behavioural model.

According to an email I received via CO-CURE list: the 3 studies involved are, PMID 18827302 | PMID 15585538 | PMID 11265953, and "The Actometer is described in more detail by van der Werf et al. (2000). They found a significant difference between the mean Actometer score of CFS patients which was 66 (S.D.=22) and healthy controls who had a mean Actometer score of 91 (S.D.=25)". Baseline actometer scores for the 3 studies in question are similar (mid-60s), and do not show significant improvement from CBT. I don't know how accurate ankle movement is at measuring overall activity, but all this is in contrast to the positive effects found for perceived fatigue and self-reported physical functioning. This is in line with a very small CBT study involving actigraphy which I came across last year: "Of those reporting improvement, clinically significant actigraphy increases (n=3) and decreases (n=4) were found, as well as no significant change (n=2). The nature of clinical improvement in CBT trials for high-functioning CFS patients may be more ambiguous than that postulated by the cognitive-behavioral model." (PMID 19213007)

The fact that physical activity itself was not improved in the above mentioned meta-analysis (despite being a goal of CBT) is just another blow to the "deconditioning" hypothesis, and in the eyes of those critical of CBT, a blow to CBT in general. The authors however believe that this is support for the role of illness-related cognitions ...

"The data did not support a treatment model in which the effect of CBT on fatigue is mediated by an increase in physical activity. CBT did neither cause an increase in physical activity at the end of treatment (path a) nor was an increase in physical activity associated with a reduction in fatigue (path b). A formal test of the mediation effect confirmed that CBT yielded its effect independent of a persistent change in physical activity. ... These results are in line with the study of Moss-Morris et al. (2005) in which it was demonstrated that not an increase in fitness but a change in preoccupation with symptoms mediated the effect of GET on fatigue. The results are also consistent with earlier research on CBT for CFS in which a reduction in fatigue was associated with a change in illness beliefs (Deale et al.1998). In the light of these findings, changing illness-related cognitions seems to play a more crucial role in CBT for CFS than an increase in physical activity."

While any legitimate improvement (regardless whether it is subjective and objective) should be welcomed, one wonders how "rehabilitated" and "no longer meeting criteria for fatigue" patients can be if they remain physically much less active than the healthy population or their pre-illness status, and are some patients being deceived to some degree about the nature of their improvement?

Malouff et al 2008 states that "Objective measures used in some studies include absenteeism from work or school, exertion tests, and tests of cognitive functioning such as attention, reaction time, and short-term memory." However, it looks like the positive result on objective functioning was derived from only 62 patients. Assuming that this result is reliable, it is also possible that it came at a cost to other areas of their lives. Cochrane 2008 (CBT) shows no improvement to (self-reported?) physical functioning.

_Tekaphor (TALK) 04:21, 8 January 2010 (UTC)

In response to Sciencewatcher's above inserted comment which I only saw just now: The Cochrane 2008 systematic review on CBT also uses different effect sizes, but is not one of the 4 references used for the sentence in question. For CBT vs usual care, it found a significant reduction for fatigue severity at post-treatment (SMD -0.39, 95% CI -.0.60 to -0.19) and short-term followup (SMD -0.47, 95%CI -0.69 to -0.25), significant clinical response at post-treatment (OR 0.47, 95% CI 0.29 to 0.76) but not short-term followup (OR 1.03, 95% CI 0.53 to 2.00), while physical functioning was not significant for either post-treatment or short/medium-term followup. Additionally, a sub-group analysis revealed that while there was a significant reduction of fatigue at post-treatment when compared to usual care, there was no significant difference between undergoing CBT and merely being on a waiting list. The effect sizes for [CBT vs other psychological therapies] are higher but obviously not directly comparable (being relative to other treatments rather than no treatment). Anyway, contrast the above to Malouff et al 2008 which is indeed the most "optimistic" (compared to both Cochrane 2008 and the other "4 references") as it has the largest effect sizes and highest recovery rates for both post-treatment and followup, finds that subjective and objective improvements are similar, IMO has the least caveats and most positive language about the results for CBT, and states that the effect of CBT for CFS is similar to CBT for psychological disorders in general and even hints therefore that CFS should be included in the next revision of the DSM. As for the wording, it would be more accurate to use the phrase "statistically significant" rather than the word "moderate", since the latter is only used by 1 of the "4 references". BTW, it is a shame that the PACE trial has dropped the use of actometers since the original protocol. - Tekaphor (TALK) 14:34, 8 January 2010 (UTC)

As discussed above [28]. Malouff has been critically appraised by an independent non-partisan group, and shown to be unreliable.Sam Weller (talk) 15:54, 8 January 2010 (UTC)

I wouldn't say it has been shown to be unreliable - their conclusion is that it is difficult to assess the reliability. So it adds a question mark. I think we can agree that Cochrane is the most reliable review. Perhaps we could change the language to 'most promising' (which was used in one review). --sciencewatcher (talk) 16:58, 8 January 2010 (UTC)

Sw, going back to your original point, not me gov! I did sample through the history. Up to 07 Sep 08 this said

"but the only treatments with scientifically verified benefits are cognitive behavioural therapy (CBT) and graded exercise therapy (GET)[4]. CBT and GET have both been demonstrated as effective in multiple randomized controlled trials."

when Sam Weller precised and combined the two sentence and accidentally lost ref [4] in the process:

"but only cognitive behavioural therapy (CBT) and graded exercise therapy (GET) have shown effectiveness for some patients in multiple randomized controlled trials"

This was probably a reasonable edit as the removed material was detailed later anyway. The "but only" got removed by Jagra on 18 Oct. There then followed an edit war in the second half of Nov where this text was tweaked half a dozen times, with "effectiveness" morphing to "moderate effectiveness"; the "for some patients" bouncing out and in, and "some patients" morphing to "many patients". I would suggest that the caveats around CBT / GET belong in the following sections and not in the intro. So why not cut the intro down to its necessary essentials (with the refs added, of course) reordering to anticipate the subsection order:

"Many patients do not fully recover from CFS even with treatment, and there is no universally effective curative option. Cognitive behavioural therapy (CBT) and graded exercise therapy (GET) have shown moderate effectiveness in multiple randomized controlled trials. Patient surveys have found that Pacing is reported to be the most helpful intervention. Diets, physiotherapy, dietary supplements, antidepressants, pain killers, pacing, and complementary and alternative medicine have also been suggested as ways of managing CFS. "

-- TerryE (talk) 00:57, 9 January 2010 (UTC)

I'm happy with that. --sciencewatcher (talk) 01:50, 9 January 2010 (UTC)

TerryE, so the caveat about the severely affected will be moved to the below section on CBT? - Tekaphor (TALK) 03:55, 9 January 2010 (UTC)

Sam W, should/can we use the structured review of Malouff et al 2008 in the article to qualify the reliability of the results? - Tekaphor (TALK) 04:10, 9 January 2010 (UTC)

Sciencewatcher, Chambers et al 2006 uses the phrase "shown promising results" while the final conclusion of Cochrane 2008 uses the phrase "very preliminary findings". The phrase "most promising" is from the PACE trial protocol (PMID 17397525) which is not a systematic review and is commenting on Chambers et al 2006 (and the previous 2001 version). - Tekaphor (TALK) 04:25, 9 January 2010 (UTC)

TerryE/SW: I'd prefer to just say 'promising' and get into the limitations in the following paras. If the intro goes beyond 'promising' then it needs to specify symptoms and patients. That means mentioning fatigue sx, and who was included ('mild to moderate CFS', I recall), or excluded (severe CFS).

Tek: The DARE abstract should be OK, consisting of a higher level of peer review than the journal provided to Malouff - i.e. it's a tertiary source. They also point out that the review failed to follow its own inclusion criteria. I didn't realise 'most promising' is not a secondary source, but from a group promoting CBT. Sam Weller (talk) 11:43, 9 January 2010 (UTC)

If I interpret the above discussions then the wording of the intro para becomes:

"Many patients do not fully recover from CFS even with treatment, and there is no universally effective curative option. Cognitive behavioural therapy (CBT) and graded exercise therapy (GET) have shown moderate effectiveness in multiple randomized controlled trials. Pacing has also shown promising results. Diets, physiotherapy, dietary supplements, antidepressants, pain killers, pacing, and complementary and alternative medicine have also been suggested as ways of managing CFS. "

with the correct inline references of course, and picking up Tekaphor's Q: yes, we should move qualifications on the effectiveness and scope of CBT to the CBT section itself; ditto any caveats on Pacing. -- TerryE (talk) 16:55, 9 January 2010 (UTC)

Missing are the immunological and antiviral treatments [29], Chronic fatigue syndrome treatment#Antiviral Treatments, although I'm at a loss as how to describe and source the mixed study results. Under #Other exists immunomodulatory agents.[30]. Ward20 (talk) 22:14, 9 January 2010 (UTC)

The thing about the antiviral and immunological treatments is that there isn't really much evidence for any of them - for one the largest trial showed no effect, for others it's just a couple of small trials, etc. CBT and GET are the only treatments shown to have a beneficial effect by multiple large-scale trials. We had working similar to this before, but Jagra removed it because he tried to convince us that other treatments had shown positive results, but perhaps it might be worth revisiting this wording. --sciencewatcher (talk) 23:38, 9 January 2010 (UTC)

(Editorial note: converted Ward20's above external links to wiki links) Ward 20's comment raised an issue of the article structure. We have a section #Treatment which references a main article Chronic fatigue syndrome treatment but also has 4 sub-sections: #Cognitive behavioral therapy, #Graded exercise therapy, #Pacing and #Other, yet the referenced main article has a completely different structure and emphasis. In this article the detailing of CBT, GET and Pacing take up all bar one para, but in the "main article" they take up about 40% of the text. Surely this inconsistency needs to be addressed:

• The sections structure of the subsections in this article should broadly mirror the "main article", and the detail in this subsections should be a consistent précis of the main article section. These subsections should not introduce new material that is not also discussed in the "main article".
• The heading "Treatment" is just a preamble / intro largely as previously described which (if the subsections and "main article" were consistent) serves as an intro to both.
• Given the above discussion about Management vs. Treatment, then why not rename this section "Management and Treatment"?

If there is broad agreement on this proposal then the first step should be to move any extra material into the "main article" and get its structure correct before then aligned these subsections. Comments? -- TerryE (talk) 17:24, 10 January 2010 (UTC)

TerryE: Your proposal is entirely appropriate. This point has been made before but not acted upon. There are comments about the coordination of CFS with its satellite articles here [31] Sam Weller (talk) 11:23, 16 January 2010 (UTC)

Possible additional symptom

I would like to add a brief comment which may be of use to those engaged in research or observation: I have found, in patients believed to be suffering from CFS, an enhanced sensitivity to lower temperatures. The patients also complained of, and generally had, colder extremities than in their previous state.
I acknowledge that this may be a consequence of, for example, a cardiovascular condition, but have not found this to be consistently associated with my observations. The possibility that complaining of cold is a consequence of a depressed mental state seems to be obviated by the fact that their extremities were measurably colder than normal.Wassock (talk) 07:36, 16 January 2010 (UTC)

Yes, feeling cold and/or hot are both common symptoms of CFS. But in order to mention it, you need a reliable source. And there are lots of symptoms that patients report - I think we just mention the most common ones in the article.

And your comment that it could not be caused by mental state is illogical. One of the main functions of adrenaline is to shut off blood to the extremities, and mental state can clearly result in the release of adrenaline. That is probably where the phrases 'cold feet' and 'cold hands, warm heart' come from. This isn't the place to discuss it, but if you are interested you can email me and I'd be happy to discuss it further. --sciencewatcher (talk) 20:03, 16 January 2010 (UTC)

Although the Oxford and CDC criteria for CFS do not mention anything about cold, temperature, or thermoregulation; some reliable sources for this symptom include: ...

• The Canadian-2003 definition of ME/CFS [32] (under "Neuroendocrine manifestations") lists "poor temperature control or loss of thermostatic stability, subnormal body temperature [...] recurrent feelings of feverishness and cold extremities, intolerance of extremes of heat and cold".
• The review "Myalgic encephalomyelitis - a persistent enteroviral infection" (PMID 2170962) found that 69% of ME patients had symptoms of "Autonomic dysfunction" ("especially circulation and thermoregulation").
• A smaller study of 53 CFS patients (PMID 19881233) found that 42% reported "coldness of feet".
• A study of adolescents (PMID 17606539 - full-text here:[33]) states "Patients with chronic fatigue syndrome reported significantly more shivering, sweating, sudden change of skin color, and feeling unusually warm."

If CFS also involves "central sensitisation/sensitivity" of the nervous system (PMID 16843021 | PMID 18191990), this could worsen the sensations of coldness (and the shiver response?) that occurs from actual cold extremities; perhaps this can explain some of the enhanced sensitivity to lower temperatures, although PMID 17371408 may suggest otherwise.

As for adrenaline in CFS, doing a PubMed search only reveals about a dozen papers, but most do not mention adrenaline/epinephrine in the abstract. Some test a range of hormones and only mention (in the abstract) the ones found to be at abnormal levels, so it is possible that adrenaline was tested but found to be normal, but I cannot tell without the full-text. Some studies may have only appeared because they studied noradrenaline/norepinephrine, (which in general appears to be normal or inconsistent?). Only one study demonstrated increased baseline levels of adrenaline (PMID 10690878), while another study demonstrated lower adrenaline 4 min after exercise but was normal the next day (PMID 11150897).

Psychological stress can cause reduced blood flow to the extremities via activation of the sympathetic nervous system, but it has not been demonstrated that this is behind these observations in CFS. Perhaps alternative or "related" explanations include dysfunction of the autonomic nervous system, reduced blood volume, poor microcirculation, low grade infection or immune activation? - Tekaphor (TALK) 04:49, 26 January 2010 (UTC)

GET - "Torture, Dreadful, Sucks"

This is, of course, not a source that can be used in Wikipedia, but it is instructive to read CFS patients' own words, after trying Graded Exercise Therapy. Though the majority of respondents found some benefit in GET, there were a significant number of patients that actually said things like: "Torture", "Dreadful", "Sucks", "Disaster for me", "The worst possible thing", "Graded Exercise made my condition far worse", "Left me far worse off than before for a long period", "More harmful than beneficial for me" and "Graded exercise stinks!".

These comment extracts were taken from here: Graded Exercise Therapy

If these comments are typical of patient experiences, it is clear that many do find benefit with GET, but there are also quite a few that found GET pure torture, and found that GET made their CFS worse.

Drgao (talk) 07:44, 27 January 2010 (UTC)

See Postexertional Malaise in Women with Chronic Fatigue Syndrome for related MEDRS. Sam Weller (talk) 08:46, 27 January 2010 (UTC)

Although we can't add comments from individual patients, we can put in the results of patient surveys as long as they are used to just give the thoughts of patients (rather than saying whether or not the treatment works, which you can't use a patient survey for). I put the recent Action for ME survey into the article a while ago, as it seemed to be one of the largest and most reliable. Currently the article gives figures for the % of patients that found CBT helpful/unhelpful, but for GET we don't give specifics even in the treatment sub-article. If you feel that this should be changed after reading the surveys and other sources, feel free to either change it or make some comments here. --sciencewatcher (talk) 15:16, 27 January 2010 (UTC)

re: article text "Patient organisations' surveys commonly report adverse effects." The data are more clearly expressed as "Patient organizations' surveys report adverse effects are common." This is because every survey has reported a significant percentage of adverse effects. In the extant text 'commonly' modifies surveys when it more accurately modifies 'adverse effects.' The over all feel of the phrase is, I feel, a little misleading in part because people are used to a litany of 'adverse effects' being listed on medication commercials even though some of them are rare. The phrase here sounds like its saying some, BUT NOT ALL, surveys have people reporting adverse effects. With each survey covering hundreds to thousands of patients, the implication that some surveys do not report any adverse effects in turn misleadingly implies they are rare. My edit was reverted back. What is the reason? JustinReilly (talk) 01:40, 20 February 2010 (UTC)

Hi, without getting into the breakdown of what these surveys represent, find or conclude, I'm not entirely sure what you are trying to say here. Yes I did revert your edits basically because the 2 quotes you mention have exactly the same meaning, but the latter sounds more grammatically correct.StevieNic (talk) 12:25, 21 February 2010 (UTC)

I apologize, on second reading I think the wording you are after is "In patient organizations' surveys, reports of adverse effects are common". As you say this has a different meaning, concentration more on multiple adverse effects being reported in specific surveys rather than some surveys reflecting just general adverse effects. Strictly speaking, however, patient surveys do not qualify for inclusion in wiki medical articles as per WP:MEDRS, but citations given are from peer reviews published in well respected medical journals.StevieNic (talk) 14:56, 21 February 2010 (UTC)

In this context, I believe it's allowable under MEDRS, since it's using a primary source to show patient reactions to a given treatment, not comment on the effectiveness of the treatment itself (though it's a fine line with the current wording, I'll admit). If we were saying something to the effect of "this treatment doesn't work", then the patient survey would be unacceptable, but since we're commenting on patients' reactions to the treatment, a large-scale survey of the patients themselves is acceptable, as I understand MEDRS, in the absence of a secondary source, provided we don't give it undue weight. —RobinHood70 ^{(talk • contribs)} 19:05, 21 February 2010 (UTC)

Perhaps the UK CMO report of 2002 ([34]) and Twisk & Maes 2009 (PMID 19855350 | [35]) are adequate secondary sources for patient views? - Tekaphor (TALK) 01:53, 22 February 2010 (UTC)

Dr. Judy Mikovits XMRV Seminar, and Q&A Session

Regarding these ongoing contentious issues of mouse XMRV virus contamination, Judy Mikovits explains the procedures she used to rule this out, in these videos:-

Mikovits - Videoed XMRV Seminars

Judy Mikovits said, amongst other things, that her blood samples were sent to a specialist that had developed techniques specifically to detect mouse XMRV, and they came back negative for mouse XMRV.

Interestingly, she actually mentions this Wikipedia CFS article in the above videos (she said something like: "Wikipedia used to say that there were no retroviruses associated with CFS/ME, but Wiki does not say that anymore"). It's nice that the leading researchers do look at Wiki.

Drgao (talk) 23:51, 1 February 2010 (UTC)

Hi and welcome back. If you look at the content of the WPI paper in science in detail (as I did after downloading and watching her presentation and Q&A), then you could see that most of the ground that she covered in her presentation was really just the content of the paper in Science with an overview for the lay audience. For example you can get the fact that one of the NCI teams actually did the PCR etc from looking at the author list on the paper. The main additional points that she covered were: new the data on the patient cohort -- the fact that it wsa drawn from 12-15 + 4 countries, IIRC; and the new detection figures. As this is a presentation from a field expert of her data, this definitely is WP:RS.

However, she (and Dr Peterson for the CFSAC) have chosen to use public presentations to release this data and comments rather than publishing them as an update paper in PLoS ONE or an equivalent rapid release but Pubmed acknowledged journal, and hence their accuracy has not been subject to independent peer review. Had she chosen to do what McClure did then these data would be WP:MEDRS. Unfortunately, as far as I understand WP:RS still falls short of WP:MEDRS and really can't be quoted in this medical article. But one of the more experienced editors might correct me on this. -- TerryE (talk) 02:01, 2 February 2010 (UTC)

Mortality

This edit removed a mortality study that had different results than another. The edit summary said, "haha the jason study is small and limited, this is 10x size". That's not correct. The Jason study had 166 patients and the Smith study had 1201 x 53% (about 637) that met the Fukada criteria. So that is less than 4 to 1. WP:YESPOV states disputes should be described, represented, and characterized within a topic so I will reinstate the removed article saying the follow up study was larger. Ward20 (talk) 00:06, 20 February 2010 (UTC) Oops, someone beat me to it so I added larger. Ward20 (talk) 00:12, 20 February 2010 (UTC)

Chronic Fatigue Category

I was making parallels and contrasting CFS and AIDS in a side conversation, the details of which aren't relevant here, but I went to look up all AIDS articles by going to the AIDS category. Well the category is in fact Category:HIV/AIDS and this includes some 13 sub-categories, and many articles on this. When I looked for the equivalent CFS category there isn't one. There's Category:Chronic illness, Category:Chronic pain syndromes and even Category:Chronic blistering cutaneous conditions. Now if you search for CFS or Chronic Fatigue in the (Article) and Talk namespaces there are a few thousand hits, but no category to group them.

What I therefore suggest is that we create a category for Category:Chronic Fatigue Syndrome which in only includes CFS referenced articles. We then have the problematic issue of how to handle ME, Fibromyalgia etc. and I do think that it might we worthwhile extending this category to include such related illnesses (and for the avoidance of debt excluding any illnesses such as Autism, etc., where promoting this grouping would be considered MEDRS fringe).

Comments? Reactions? -- TerryE (talk) 19:44, 23 February 2010 (UTC)

I have started this analysis. So far I have 120 Bio articles which mention CFS, ME, etc. I need to check them because as an editor pointed out on another post, we shouldn't be adding people whose illness occurred before the adoption of the CFS diagnosis (e.g. Florence Nightingale and Charles Darwin :LoL:) as that is just speculation. Also some such as Wessely and Peterson aren't CFS suffers but domain specialists who have published in this area. I will take this lack of objections as a level of comfort in this and once I've completed this analysis later in the week, I will post back then start to implement this category. I will put the details on my talk page (but include a link here) for comment rather than cluttering up this talk page.

One other thing that I did notice were some very odd and questionable claims on other articles which reference CFS. For example the intro to the Malingering article uses a single primary source published in 2002 and materially reinterprets its finding to claim that "The symptoms most commonly feigned include ... chronic fatigue syndrome ...". There have been 546 papers published on or referring to this topic since including a number of secondary reviews which don't reference CFS. This claim in its present form fails MEDRS use of primary research. OK, this one should addressed on the article itself, but I think that a wider review of such articles is merited. If I find any material issue I'll raise it on the appropriate MED project talk page. -- TerryE (talk) 13:37, 28 February 2010 (UTC)

I've now update this working page User:TerryE/CFS people and invite other editors to contribute or comment on it's talk page. -- TerryE (talk) 01:10, 3 March 2010 (UTC)

Ward20 has now reviewed this and made some corrections. The CFS sufferers list seems non controversial and a useful addition, so I propose to move forward with its introduction. The corresponding HIV category is Category:HIV-positive people, which I dislike. I suggest that we follow the wider "People with" convention (as in Category:People with Parkinson's disease, et al) -- Category:People with CFS. -- TerryE (talk) 11:07, 16 March 2010 (UTC)

I say go for it. Ward20 (talk) 20:52, 17 March 2010 (UTC)

UK Freedom of Information

An editor has on three occasions posted the following text at the beginning of the article:

The UK Government currently holds secret files (ref FD 23/4553/1) concerning this illness - the files were to be released in 2023, however, this has recently been changed by imposing a further 50 years to a release date in 2073.

As the third editor to have reverted it, I left a message to that effect on the corresponding talk page, and then followed up the file number at The National Archives

The link from that page (Freedom of Information Act Exemption Information) justifying the extension to the release date is as follows:

These extracts contain information supplied in confidence by named individuals to the Medical Research Council in relation to applications for research grants and confidential discussions on the selection of candidates. It also contains medical information on named members of the public. The youngest person was aged at least 27 by 1997. The entire piece was previously closed for 50 years.

This is way out of my league and I must therefore leave it to editors with experience in this issue.--Technopat (talk) 01:42, 25 February 2010 (UTC)

Thanks Technopat, I can't see how this source has any relevance to the article as it doesn't seem to reference ME/CFS in any way and would be a primary source to boot. Ward20 (talk) 01:55, 25 February 2010 (UTC)

(edit conflict) I was just following up on that information myself. My impression, both from what you've said and from information I've found on a couple of ME websites is that the information is closed as a standard part of preserving the privacy of peoples' personal information, not as part of a government cover-up or what have you. This is routine and not unusual in any way. Now, you could raise the argument that they're using this as an excuse to hide information, but I find no published evidence to support this notion. Until such time as there is credible evidence of some kind of cover-up, this information doesn't meet notability requirements for Wikipedia in my mind. —RobinHood70 ^{(talk • contribs)} 01:59, 25 February 2010 (UTC)

This 'editor' has reposted three times because this subject is neither "not relevent" nor "unconstructive" - sorry I do not know how to correspond via Wiki talk, so this will have to do. This is far more important than discussing vague research into CBT/GET using biased research data when there is information held in secret. To suggest above that the content of said files is merely applications for grants etc beggers belief - you are suggesting that the content of said files is as stated, ie not secret. Since when is the content of secret files explained?

No this is not usual form for witheld files - such files are produced with confidential information blacked out - do you have any experience of witheld files? Sorry guys my head is going to explode, the world is as you say and we are all just pretending we are ill - never mind us we will just fade away - thanks on behalf of all ME sufferers. You may delete my comments as I will not repost - apologies for being human. notashrink says farewell and sincerely hopes you or those you love do not get this illness - —Preceding unsigned comment added by Notashrink (talk • contribs) 02:17, 25 February 2010 (UTC)

You need to have a reliable source (e.g. the Times) saying that the UK government is covering up this stuff. We can't just have anyone coming in and putting random things into the article without any references. Please read WP:RS and WP:MEDRS. Also, you are very close to breaking the 3 revert rule (WP:3RR). I would suggest you discuss any changes here on the talk page rather than starting an edit war. And contrary to your comment above the majority of the editors on this page (including me) have personal experience with this illness and are editing it with a view to helping patients get the correct information. It doesn't help your cause when you come in accusing us of something nefarious and obviously untrue. --sciencewatcher (talk) 02:36, 25 February 2010 (UTC)

(after ec) I agree with the removal. That does not mean that I (or those who have done the removing) endorse the UK government's action. The CFS page is about CFS, not hypothetical conspiracies, nor discussions of documents we can't read. -- Scray (talk) 02:38, 25 February 2010 (UTC)

It is likely due to personally identifying information in the papers or corporate financial discretion and they are being witheld until the peron(s) named/involved are deceased rather than some nefarious plot to "cover something up". I am sure there are weird and wonderful and probably some sinister things buried in government archives which would shock the public but I don't think that this is one of them; there is likely an innocent explaination. Attribution of what is in the archives to a sinister plot is original research and highly speculative and we cannot use wildly speculative original research especially of the conspiritorial kind in wikipedia.--Literaturegeek | T@1k? 02:47, 25 February 2010 (UTC)

I reverted this because it was indeed original research to allude to some document that may or may not have bearing on the diagnosis and treatment of CFS/ME. Even if released, this information would constitute a primary source and not really as such permissible by WP:MEDRS. JFW | T@lk 21:14, 25 February 2010 (UTC)

@JDW, I agree with this removal as it is a clear case of WP:OR and fails WP:V and quite a few other policies. However the actual words from WP:MEDRS in regard to its scope are: "it is vital that biomedical information in articles be based on reliable published sources and accurately reflect current medical knowledge" [My ital]. As this rather odd claim has nothing to do with the presentation of biomedical information in this article but rather about the failure to disclose information, so surely WP:MEDRS isn't relevant here. -- TerryE (talk) 00:12, 26 February 2010 (UTC)

Thanks Terry - I think! Notashrink (talk) 00:24, 26 February 2010 (UTC)

No don't thank me. I would have backed out your edit as well, but for WP:OR and WP:V failure, just not WP:MEDRS. It's a bad edit (fullstop), not a bad medical edit. Sorry :-( -- TerryE (talk) 01:13, 26 February 2010 (UTC)

Enough is enough - I do not regret mentioning the files, - they exist and thats a fact - believe what you want about the ethical nature of authority and continue to edit (censor) making sure you adhere to your rules - progress comes from looking for answers in new information not checking spelling mistakes. The world is no longer flat - I'm happy that you are all agreed that my input was not acceptable - Notashrink (talk) 01:51, 26 February 2010 (UTC)

From looking further at it they are just names of people who participated in clinical trials, i.e. personal data which is not allowed to be released until everyone is deceased, probably because they requested anonymity when participating in research. If you click on the text link for the actual research for CFS/ME you will see the files were opened in 2007, so you can order them if you like, you just can't order the files with people's personal data for another 61 years or so. There does not seem to be anything sinister. I think that you are jumping to conclusions. The issue is not whether governments don't try to hide things or do unethical things, I believe they do, this just is not a case of it and your proposed text most importantly was implying something sinister based on original research, this is why it is not an acceptable addition to an encyclopedia, it is nothing personal against you.--Literaturegeek | T@1k? 02:37, 26 February 2010 (UTC)

Ok - the files so far released contain loads of personal information including ex-directory phone numbers, names and addresses that have not been redacted - in all my comments I have not suggested a sinister plot, I have not suggested a cover up - these are words used by other people here - the important bit in the witheld documents is "confidential discussions on the selection of candidates" - during these "discussions", members of the CMO's working group (1998-2002)were threatened with the Official Secrets act - the working group was comprised of mostly (not all) psychiatrists - the whole issue of psychiatric involvemnt in ME (cfs) depends on their use of CBT and GET as a treatment, as the only treatment, - psychiatrists decide who is allowed on their trials - surely you can see this - this is not personal information being witheld. This is the crux of this whole issue. How can patient selection criteria be a secret? - Notashrink (talk) 03:50, 26 February 2010 (UTC)

All you said in your original post to the article was that the UK government had secret files. Even ignoring that it came across as a conspiracy theory, which may have simply been a poor choice of words, there was nothing in there about patient selection, nor did you cite any reliable source for the information. Wikipedia (or any other encyclopedia) does not work on "I heard this from this guy" or "I know it's true because it was posted on an ME website and I trust them". It works on information that's public and that's written or verified by those that most people would trust. As an ME patient myself, I can tell you that, sadly, a lot of ME website are full of garbage from people desperate to believe anything that might help them get a cure or at least help them figure out why they or their loved ones feel so bad. What's required for an encyclopedia is a reliable source of information, such as a peer-reviewed medical journal or respected news agency, to say that they've looked into the issue and this is what they've found. If you have something like that, this may be relevant material. If not, then it's hearsay. That doesn't mean it's incorrect, it just needs to be verifiable before it gets published here. —RobinHood70 ^{(talk • contribs)} 04:26, 26 February 2010 (UTC)

I understand - Notashrink (talk) 04:35, 26 February 2010 (UTC)

I expect the files are marked as secret because CFS patients are seen as so crazy and angry. There are lots of mentions of threats being made against various researchers (although none of any action ever been taken - having CFS seems to rather restrict ones ability to engage in paramilitary action). There has been a lot of quackery surrounding CFS, and I wouldn't be at all surprised if these files did contain rather embarrassing infomation about the way the government and prominent researchers have viewed it. It would be amazing if it did not. It's not normal for files like this to be restricted in this way though: just look at the equivalent files for other conditions. —Preceding unsigned comment added by 86.133.180.243 (talk) 13:04, 26 February 2010 (UTC)

Please note the that description "secret files" is OR. The FOIA gives all sorts of valid reasons for withholding data from public release. Failure to release under terms of the FOIA does not necessarily imply "secret". It's because of all this hypothesis and supposition that Wikipedia scrupulously avoids such content. We have enough fun just debating sensible content from truly reliable sources :-) -- TerryE (talk) 15:40, 26 February 2010 (UTC)

Now that is an "unconstructive and irrelevent" comment - not yours TerryE, the one above from 86.133.180.243 - why do I bother - I'm now involved in a sinister plot, a coverup, a conspiracy and now I'm a soddin' terrorist - all I did was to state a fact - not an opinion, a fact - I believed facts belonged in an encyclopedia - I just did not understand the rules of the game for which I have apologised - you won't see me on here again for a while, at least until I have familiarised myself with the rules of engagement - I will be back :). Notashrink (talk) 21:47, 26 February 2010 (UTC)

Yes I know I said I would be away for a while but ...... Terry contacted me later last night and here's my reply (ask him what he wrote) Hi Terry “Let’s pick this statement and its source apart” – what?

Do I take that as a little patronising? Yes actually – You then proceed to tell me what is and what is not a ‘fact’ – patronising again, however, according to wiki, your chosen bible, a ‘fact’ amongst other things is “Alternatively, fact may also indicate an allegation or stipulation of something that may or may not be a "true fact" – we can play this game ad infinitum – (if you want to).

Terry asks, “How would you like your personal medical history disclosed”(sic) – what has that got to do with it? Normally all personal medical details are confidential - I doubt my personal medical history (or yours) is held in the National archives and slapped with a 50year extension to an original 30years disclosure order. So please tell me of anyone’s personal medical history that is held in the National Archives.

The 30year rule applies to documents that are exempt from release under a freedom of information act request and include for example documents concerning the formulation of government policy, documents related to defence, to national security, to the economy, and documents that are considered very confidential – not patient medical history as part of a clinical trial. As you wrote, “confidential discussions on the selection of candidates” – the main argument against the psychiatric approach is the selection criteria of suitable patients – you mention that you have CFS – are you happy to be told that you are imagining your illness? Secret = not open or public; kept private or not revealed; "a secret formula"; "secret ingredients"; "secret talks"

Again – I apologise for not playing within Wiki’s rules – I made an error (unintentional)and did not understand the rules – have you all got that yet? It will not happen again, neither will I apologise again. I have neither the time nor the inclination to get into useless endless discussions with people I do not know and with people who I have no knowledge of their chosen agenda (everyone has an agenda) - mine is to ask questions concerning this illness as it has a profound effect in my life – I will find no answers here - this place is not a source (reliable or otherwise) of information – it is a glorified forum hidden behind a collection of selective research that is protected by faceless individuals You and your fellow adjudicators can tear my opinion to shreds and ridicule my definition of what constitutes a fact – my opinion is as worthless as yours, ask any lawyer, (which I did). The page concocted on Wiki with regard to CFS is not the authority on this subject – and carries no authority and will never be quoted as an authority.

Yes, you have your interpretation/opinion - and I have mine - dismissal is easy, ask any politician - wait for official disclosure (long after you are dead) that's your decision and your right – Notashrink (talk) 23:58, 27 February 2010 (UTC)

(syntax only changes so that the post is readable) -- TerryE (talk) 00:08, 28 February 2010 (UTC)

Notashrink, I was trying to take you through the logic chain that any experience editor would use in applying Wikipedia policies. You are fully entitled to your interpretation, but it is Wikpedia policies that govern the content of articles. In future I will just give you the links like WP:NOR, WP:V, etc.. If you want to post here without getting reverted then you need to read them and apply them. -- TerryE (talk) 00:16, 28 February 2010 (UTC)

Yawn Notashrink (talk) 00:20, 28 February 2010 (UTC) You failed, miserably, to communicate your thought process in definitions and interpretations of secrets, facts and witheld document reasons - block me if that pleases you, frankly Terry & Co, I do not care. Enjoy & peace be with you. Notashrink (talk) 00:27, 28 February 2010 (UTC)

Mitochondria

CFS may sometimes be caused by malfunctioning of the Mitochondria inside most or all of the body's cells. Mitochondria are the chief source of energy (in the form of ADP and ATP) for the entire body. Why is mitochondrial hypoactivity not included in the article? Are there any reliable secondary or even peer-reviewed primary sources? David Spector 05:40, 7 March 2010 (UTC)

This subject is covered in the sub article Pathophysiology of chronic fatigue syndrome under the section Gene expression and polymorphisms.StevieNic (talk) 13:27, 7 March 2010 (UTC)

@David, you should understand that the CFS article began as a single page and grew too large because relevant info kept getting added. In the end we split it into a hierarchy of articles which has morphed over time as splits and mergers have been carried out. As Steve says the issues around the impact of mitochondrial function are really an aspect of pathophysiology and are therefore discussed in that sub article. I personally think that malfunction of the mitochondrial processes is key aspect of (some forms of) CFS. I suspect that you do also. However, this is the personal opinion of editors, and has no play in the criteria for content selection. If subsequent published research moves hypotheses relating mitochondria into the mainstream then at that point some reference on the main page may be merited, but we must base the content of these pages on properly constituted WP:MEDRS. -- TerryE (talk) 18:13, 7 March 2010 (UTC)

Full list of symptoms

An IP editor added a symptom list[36]. The source should be better, but the IP editor does make a good point in that there are more symptoms than in the diagnostic criteria, and MEDRS reviews do mention them. The lead also describes other symptoms than in the Symptoms section so the range of symptoms mentioned in up to date review articles should be in the body. Ward20 (talk) 06:33, 16 March 2010 (UTC)

I'ved added a {{fact}} since the content seems non-controversial but useful addition and fixed a couple of typos.. I've left the "All about ME" PDF reference since these seems to be a useful patients intro, but I agree with Ward. This change needs improving, rather than reverting. -- TerryE (talk) 10:34, 16 March 2010 (UTC)

On rereading this list needs to be moved immediately following the CDC list to improve reading flow. The wording should be "may also include" -- that is "may": these symptoms aren't mandatory; "also": there is no point listing the ones detailed in the CDC list so, for example, "Problems with thinking" should be deleted and

• Pain - aching muscles or joints, nerve pains or pins and needles, headaches, twitching muscles and cramops, abdominal pain

should become

• Other pain - nerve pains or pins and needles, abdominal pain

or similar. -- TerryE (talk) 10:50, 16 March 2010 (UTC)

I just deleted this section. The source isn't WP:MEDRS and it doesn't include depression and anxiety which are two major symptoms (POV methinks, what are the chances?) Anyway, if we can find a better list from a more reliable source such as the CDC that would be better. I agree it would be useful to have a list of the most common symptoms, but we can't exclude symptoms because they don't fit our preconceived notions. --sciencewatcher (talk) 14:48, 16 March 2010 (UTC)

Sciencewatcher, it seems three editors (Ward20, StevieNic and me) came to the same conclusion, but we decided to leave it in place. As we said earlier in this section: it isn't complete and the content needs to be underpinned by MEDRES, so we need to do some more work on it. However, this content as-was identified a gap and wasn't controversial, so merited being kept as a placeholder.

It certainly wasn't POV as (if you'd checked the RS) the OP merely took the headings from the reference, and all I did was to remove the duplicates from the CDC list. I agree that anxiety and depression are symptoms of any major illness including CFS and most cancers, though the MEDRS sources on associations of clinical depression are far more mixed. Can we avoid "the delete first and ask questions later" form of collaborating? Could we discuss this list of omitted symptoms on the talk page first as an alternative to sliding into an edit ping-pong on the article ? -- TerryE (talk) 17:03, 16 March 2010 (UTC)

The problem is that the afme ref fails WP:MEDRS so we can't include it as is. If someone can come up with a WP:MEDRS reference for a list of symptoms, we can put it in. Patient organisations are ok sources for comments and patient surveys, but not for listing the symptoms of a disease. And having a look at the CDC reference, it gives 'other symptoms' so we should just use that. And as for your POV comment and CDC, I notice that the CDC symptom list includes 'depression or psychological problems (irritability, mood swings, anxiety, panic attacks)' which none of the edits mentioned. Just the usual POV of completely ignoring anything psychiatric which doesn't surprise me at all. Anyway, I suggest we just add the 'other symptoms' list from the CDC website. --sciencewatcher (talk) 18:05, 16 March 2010 (UTC)

I didn't expect this to be so difficult. After looking at sources I find they tend to emphasize various symptomatology according to the researcher's discipline. I tried to find middle of the road sources. This isn't a comprehensive list, but possibilities for discussion:

Sciencewatcher's suggestion from the CDC, Other Common Symptoms.[37] "In addition to the eight primary defining symptoms of CFS, a number of other symptoms have been reported by some CFS patients. The frequency of occurrence of these symptoms varies among patients. These symptoms include:

• irritable bowel, abdominal pain, nausea, diarrhea or bloating
• chills and night sweats
• brain fog
• chest pain
• shortness of breath
• chronic cough
• visual disturbances (blurring, sensitivity to light, eye pain or dry eyes)
• allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
• difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting)
• psychological problems (depression, irritability, mood swings, anxiety, panic attacks)
• jaw pain
• weight loss or gain"

From Niloofar,[38] "After illness onset, however, patients indicate that physical exertion tends to exacerbate the fatigue. Many patients with chronic fatigue syndrome also often experience anorexia, nausea, drenching night sweats, dizziness, and intolerance to alcohol and other pharmaceuticals that affect the central nervous system."

From Wyller VB.[39] "In addition, the patients are to a varying extent bothered by accompanying symptoms, some of which are required according to the CDC-definition (Table 2)

Organ system Symptom

Nervous system

• Headache
• Dizziness
• Problems of balance
• Increased sensitivity towards light, sounds and smells
• Subjective temperature sensitivity (feeling too hot or cold)
• Impairments of memory and concentration
• Sleep disturbances

Musculoskeletalsystem

• Muscle pain
• Multi-joint pain

Circulatory system

• Orthostatic intolerance
• Palpitations
• Paleness

Digestive system

• Abdominal pain
• Diarrhoea
• Nausea

Immune system

• Tender lymph nodes
• Sore throat
• Night sweats"

Hickie I[40] grouped a number of symptoms into 5 categories. "The optimal solution for this random sample included five factors (and 18 individual symptom items) and explained 50% of the variance. The five factors were designated as: ‘musculoskeletal pain/fatigue’, including items such as ‘pain in arms or legs’, ‘joint aches and pains’ and ‘muscle weakness’; ‘neurocognitive difficulties’, including ‘poor concentration’ and ‘difficulty thinking’; ‘inflammation’, including ‘sore throats’, ‘fevers’ and ‘swollen glands’; ‘sleep disturbance/fatigue’, including ‘feeling tired after rest or relaxation’ and ‘waking up tired’; and ‘mood disturbance’, including items such as ‘constantly under strain’, ‘irritable or cranky’ and ‘unhappy or depressed’." Ward20 (talk) 21:30, 16 March 2010 (UTC)

@sw, I didn't undo your delete, but instead I asked you to discuss your draft list here. I didn't edit the CDC list and if any précis has been done then it wasn't by me. As I explain in my first post in this section I only remove duplicated items from the IP posters content. We agree that the afme PDF is an unreferenced and non-MEDRS tertiary summary of MEDRS sources, but nothing here is contentious -- as Ward has demonstrated.

Since you've now stated a couple of times that my comments are POV, could you please be more specific? Help me. What on earth have I said that is not consistent with mainstream views on CFS? And if you can't do this, then can you please stop making unhelpful accusations. Thank-you. -- TerryE (talk) 23:20, 16 March 2010 (UTC)

No, I didn't say your edit was specifically pov, I just meant the list of symptoms picked by AFME. All the CFS charities are POV by default - they have to be, otherwise they would have zero members :)

Anyway, I think the CDC 'other symptoms' list is fine. It just misses a couple of minor things such as sensitivity to sound, but there are so many possible symptoms that I don't think we should list them all anyway. --sciencewatcher (talk) 00:06, 17 March 2010 (UTC)

A long time ago this Wikipedia article had a full symptom section based on the Canadian 2003 definition. All this information was replaced by the bland CDC 1994 criteria list.[41] Many of the "minor" symptoms should be mentioned because they are relatively common, as demonstrated by research or mentioned in reviews (eg alcohol intolerance). The large international study mentioned above (Hickie et al 2009 - PMID 19085525) would support the assertion that mood disturbance is a part of CFS, although without reading the full-text I cannot tell how much of this is a consequence rather than a core component of CFS. Considering that mood disturbance is common in infections and some neurological disorders as well, I would not be surprised either way or if it was both.

Despite Sciencewatcher's allegations of anti-psychiatry POV concerning the IP editor and AfME (eg "completely ignoring anything psychiatric"), the IP editor actually included "Problems with mood" in their edits while page 7 of the cited AfME PDF booklet has an entire subsection on "Problems with mood" and lists frustration, anxiety, panic attacks, low mood, depression, mood swings and irritability (and supports the use of CBT on p22). The IP editor did not list all these symptoms, but neither did they list all the symptoms from the subsections on "Problems with thinking", "Digestive problems", and "Intolerance and increased sensitivity", so do they also have an anti-cognitive, anti-gastroenterology, anti-hypersensitivity POV? As for the comment "all the CFS charities are POV by default - they have to be, otherwise they would have zero members", please, there are charities for psychiatric disorders too, and a large proportion of CFS patients believe psychological symptoms and factors are important to CFS. - Tekaphor (TALK) 03:35, 17 March 2010 (UTC)

I just read Hickey, and Table 3 does seem to be a very comprehensive list of symptoms with % of patients for each one. It might be useful to include it, although it is quite large. Perhaps we could put it in as a pop-up or something? --sciencewatcher (talk) 17:33, 17 March 2010 (UTC)

Is this the Wilson, Hickie 2000 study? The table 3 symptom list looks fairly complete, but 482/744 patients seem to be diagnosed with a lesser used criteria CFS-the Australian definition (1990). It should be noted if we use this list. The class 1 and class 2 criteria, and authors hypothesis, "The significant between-group differences for the prevalence of premorbid (as evidenced by treatment rates) and familial psychiatric disorder argues against the proposition that the groups differ only along some shared dimensional factor such as symptom severity, functional disability or concurrent psychological morbidity. Rather, it suggests a constitutional vulnerability to a somatoform disorder in class two subjects. An alternative possibility is that patients with more prolonged disorders develop some (but not all) of these features as a consequence of the chronicity of their condition." is interesting to say the least. Ward20 (talk) 20:16, 17 March 2010 (UTC)

As there doesn't seem to be much discussion here, I have taken the liberty of adding the 'other symptoms' from the CDC website. I had another look and noise sensitivity is on the list, contrary to my previous comment. The CDC list is better than nothing, and probably better than Hickie given they use the not-widely-used Australian criteria. I think the CDC list includes all the symptoms that are experienced by at least 50% of patients. If you think any important ones are missing, or you have any other objection, let's discuss it. --sciencewatcher (talk) 20:29, 19 March 2010 (UTC)

Fine with me. Ward20 (talk) 02:54, 20 March 2010 (UTC)

I've tidied up the layout slightly. The level four heading Other common symptom reads better turning into a text preamble. But overall I feel that this is a real improvement in content and structure. My thanks to Ward, Sciencewatcher and the others. -- TerryE (talk) 10:26, 20 March 2010 (UTC)

It looks good to me..Nice work.StevieNic (talk) 10:42, 20 March 2010 (UTC)

Rebalancing the layout of Treatment

I would like to pick up and implement the consensus that we reached in a previous discussion, now archived in the section Talk:Chronic fatigue syndrome/Archive 13#"moderate effectiveness". The relevant summary was:

We have a section #Treatment which references a main article Chronic fatigue syndrome treatment but also has 4 sub-sections: #Cognitive behavioral therapy, #Graded exercise therapy, #Pacing and #Other, yet the referenced main article has a completely different structure and emphasis. In this article the detailing of CBT, GET and Pacing take up all bar one para, but in the "main article" they take up about 40% of the text. Surely this inconsistency needs to be addressed:

• The sections structure of the subsections in this article should broadly mirror the "main article", and the detail in this subsections should be a consistent précis of the main article section. These subsections should not introduce new material that is not also discussed in the "main article".
• The heading "Treatment" is just a preamble / intro largely as previously described which (if the subsections and "main article" were consistent) serves as an intro to both.
• Given the above discussion about Management vs. Treatment, then why not rename this section "Management and Treatment"?

If there is broad agreement on this proposal then the first step should be to move any extra material into the "main article" and get its structure correct before then aligned these subsections. Comments? -- TerryE (talk) 17:24, 10 January 2010 (UTC)

However, given that over 2 months have passed since this discussion, I just wanted to give everyone the opportunity to refresh their memories of this and pause for comment before making these changes. If you are comfortable with this, the intro to "Management and Treatment" would be:

"Many patients do not fully recover from CFS even with treatment, and there is no universally effective curative option. Cognitive behavioural therapy (CBT) and graded exercise therapy (GET) have shown moderate effectiveness in multiple randomized controlled trials. Pacing has also shown promising results. Diets, physiotherapy, dietary supplements, antidepressants, pain killers, pacing, and complementary and alternative medicine have also been suggested as ways of managing CFS."

that is move second sentence to last to mirror the subsection order and removed the CBT and GET caveats already addressed in these sections. -- TerryE (talk) 11:18, 20 March 2010 (UTC)

Canadian Clinical Definition Documents

http://www.mecfs.org.au/?q=node/33

The above site has fortified accurate links to acceptable and approved clinical understanding of CFS. I really wish above all that psychiatrists would read and learn the established insights also doctors and anyone at all who has anything whatsoever to say about ME/CFS. —Preceding unsigned comment added by 110.20.6.172 (talk) 01:35, 2 April 2010 (UTC)

Yet another single-purpose source, not related to what we call a reliable source. (And what does an Australian organization have to do with the "Canadian Clinical Definition Documents"?) — Arthur Rubin (talk) 02:33, 2 April 2010 (UTC)

I apologize to the anon. Even though I don't know what "fortified" means, I would be more impressed if a Canadian doctor or organization had the links to the "Canadian Clinical Definition Documents", then an Australian organisation of unknown pedigree. Even sources we do not consider reliable can be used for discussion, but only information in reliable sources can be included in the article, per Wikipedia guidelines.

If you'll look at the Canadian Consensus Document you'll see a good number of widely respected and experienced physician and researchers. The Pediatric Definition was created by the professional society of CFS researchers (IACFS/ME) researchers and it is very similar to the Canadian Consensus Document. The IACFS/ME is shortly coming out with a new research definition. Bleijenberg, a CFS researcher focused on CBT et. al. supports the fundamental outlines of the Canadian Criteria stating that post exertional malaise - a central focus of the Criteria - is afundamental part of CFS and needs to be accounted for in the definition - Cort —Preceding unsigned comment added by 67.239.203.234 (talk) 03:51, 18 April 2010 (UTC)

Sufferers in the public eye

Is there any value in adding a section listing well-known people who have suffered from CFS?

I'm not sure how this fits with Wikipedia, but it would certainly lend comfort to those who think they are alone with the disease or struggle to get it recognised.

What do others think?

A few to start with:

Clare Francis - yachtswoman and author www.clarefrancis.com; John Rutter - composer http://en.wikipedia.org/wiki/John_Rutter; Ian Woosnam - golfer; Amy Peterson - US speed skater; Ricky Carmichael - motorcross/supercross rider; Laura Hillenbrand - author; Tottie Goldsmith - actress; Peter Marshall - squash player; Duchess of Kent - duchess; Kim A. Snyder - film director; David Puttnam - film director; Yvette Cooper - politician;

Tishtosh20 (talk) 13:59, 3 April 2010 (UTC)

There is already a page for this - if you go right to the bottom of the CFS page you'll see a link to 'notable patients'. There's also a link to 'cultural references' at the bottom. Perhaps these links should also be in the 'society and culture' section of the article, along with some info from those pages? It seems a bit strange they're just tiny links right at the bottom of the page. It took me a bit of searching to even find them. --sciencewatcher (talk) 15:54, 3 April 2010 (UTC)

Sounds like a good idea.Ward20 (talk) 09:06, 8 April 2010 (UTC)

If you look at /Archive_13#Chronic Fatigue Category, you will see that I have been working on a "People with Chronic Fatigue Syndrome" category. I will reconcile Tishtosh20's list and implement this next week when I get back from holiday. -- TerryE (talk) 10:22, 8 April 2010 (UTC)

Maes+Twisk and Lerner research

why are the numerous published by dr lerner re antivirals not on the page? I have added them with citations and they were removed, why? also why is twisk and maes seemingly not allowed? its published and in the public eye, not including them on the page means the page is innaccurate. —Preceding unsigned comment added by 86.148.134.171 (talk) 21:22, 16 April 2010 (UTC)

There was discussion of Maes+Twisk a while ago here. The bottom line is that it is not a high quality review, so it cannot contradict Cochrane, etc. If you look on google scholar you will see it only has 1 citation. --sciencewatcher (talk) 23:55, 16 April 2010 (UTC)

As for Lerner, the studies are all small scale trials and they are primary sources. That doesn't mean we can't include them, and in fact there are studies of the same treatments listed in the treatment page already. But we rely primarily on high quality secondary sources for the article. --sciencewatcher (talk) 23:57, 16 April 2010 (UTC)

As Sciencewatcher indicates, the best sources that are cited often are given higher priority than lesser sources (read WP:Neutral point of view and in particular WP:WEIGHT). That doesn't mean they can't be used altogether, but WP:CONSENSUS should be used to arrive at the proper amount of priority to give material from each source in the article. Ward20 (talk) 00:13, 17 April 2010 (UTC)

Regarding Lerner: can someone confirm what exactly he did? I don't have access to the full-text, so this analysis might be flawed, but bear with me. Searching on pubmed for "cfs Valacyclovir" brings up 2 results - PMID 18019402 and PMID 12582420. One is an initial study and the other is a follow-up. Assuming they are talking about the same study (which might be incorrect, as I can't tell for sure) it looks like Lerner has a very odd idea what 'placebo control' means. If you read the initial study you'll see that both the treatment AND control group received the treatment - the difference was simply that one group had different infections. It doesn't say it was double blind, so presumably the patients were told which infections they had (and this certainly can influence the results). In the initial study he just talks about 'controls', but in the follow-up he says the study was 'blinded-random placebo-controlled trial. You certainly couldn't call a study 'placebo controlled' if you give the treatment to both groups! So are these different studies? Does anyone have the full-text? --sciencewatcher (talk) 00:48, 17 April 2010 (UTC)

I have the 2007 article. Group 1 appears to be a double blind crossover trial but he doesn't make it crystal clear. If I had an address for you once I can't find it. PM me an address I can send an attachment to and I will send PMID 18019402. Ward20 (talk) 05:20, 17 April 2010 (UTC)

Hi I have looked at all the evidence, and I can see no reason why Dr lerner and Twisk and Maes are not included on this page, remember it is not for editors to pick and choose what studies get put on the site, if a study is a published scientific study then it is allowed on wikipedia with the relevent citations, I hope we can all agree that the page is missing something if it does not include these papers, they need to be included for completeness. 81.153.141.64 (talk) 18:52, 17 April 2010 (UTC)

as an addition to this, Dr Lerner is published in 3rd party journals, as is I beleive Twisk and Maes, please remember Wikipedia is not a peer reviewed journal! its not our job to peer review science papers, we are just editors (of an encyclopedia). 81.153.141.64 (talk) 19:05, 17 April 2010 (UTC)

Please read WP:MEDRS. That is a guideline that editors of medical articles try to follow concerning material and references. It is the editors that pick and choose what studies are included in the articles per WP:CONSENSUS governed by the various WP:Policies. Since lerner's therapy is a treatment, why not start discussing that in the Chronic fatigue syndrome treatment article? More treatments are covered there. As far as Twisk and Maes you need to address the previous discussions that Sciencewatcher mentioned and persuade the other editors the paper is notable as far as the impact factor of the journal and the amount of times the paper is referenced by other journal articles.Ward20 (talk) 19:57, 17 April 2010 (UTC)

Hi I have read the WP:MEDRS article and as far as I can see Dr Lerners papers definately fit the criteria and I believe Twisk and Maes do too, I dont understand why its such an issue just getting these papers listed, if its solely up to a vote via the other editors then that is very open to bias and seems very much against the ethos of Wikipedia as it means people are essentially at the mercy of other editors who may have their own prejudices and bias and this is science, the papers are in the public eye so all editors should agree we dont need to go around convincing other editors to allow stuff, we are trying to be unbiased here and without the papers mentioned above then the current CFS page is very biased towards certain treatments and certain papers, please note also in the recent literature review the MRC in the uk did, Dr Lerners papers WERE included. I still have failed to be given a reason why Dr Lerner and Twisk and Maes are not included on this CFS page, adding them would add some balance to proceedindgs and be the first steps to a balanced page. 81.153.141.64 (talk) 20:47, 17 April 2010 (UTC)

Anon: the problem is that Lerner's paper is only cited 16 times, and all of those citations appear to be low-cited papers as well. As for Maes and Twisk, it only has 1 citation. This means that these papers are not held in high regard by scientists, and therefore (according to wikipedia policies) we probably shouldn't be including them. However having said that, we may be able to insert a short mention of Lerner's paper in the treatment article, but I would only do that if I could figure out that the trial was actually double-blind placebo controlled. So far nobody here (including you) has been able to give any details about whether this is the case. Have you read the full-text (not just the abstract) of his paper? And as was mentioned in the prior discussion, it may be possible to insert a short mention of Maes and Twisk as a comment by a patient, but I'm a bit more dubious about that.

And PLEASE get a username. The first octet of your ip address changed from 86 to 81 so I don't even have a clue whether or not you're even the same person for crying out loud! --sciencewatcher (talk) 21:30, 17 April 2010 (UTC)

Lerner has done several studies showing the antivirals are promising treatment for the subset of patients with confirmed herpesvirus reactivations and anecdotal reports abound of patients success on these treatments. Check out the CFS CME on medscape for more treatment options from experienced CFS physicians. Other physicians have found that cortisol is helpful for patients with low cortisol. (Cort). —Preceding unsigned comment added by 67.239.203.234 (talk) 03:54, 18 April 2010 (UTC)

Moved above comment by IP to relevant section. Ward20 (talk) 04:08, 18 April 2010 (UTC)

Cort: then please cite Lerner with the appropriate reservations. A problem is that most studies of this type are done by physicians/researchers without a track record in publishing. Hence they get into journals with low circulations. Still they are often the only researchers doing studies on a given topic at all - which is not all uncommon given the paucity of funding provided CFS reseachers. Despite the fact that CFS affect about a 1 million people and DHHS studies suggest it cause 20 billion dollars a year in economic losses it is now the worst funded of over 200 conditions at the NIH. NIH provides only 3 million dollars a year in funding. With funding like CFS researchers often rely on private funding sources and do not have the money to produce double blinded placebo controlled studies. Yet antiviral treatment of CFS patients is not uncommon and can produce very positive results in the right patients. —Preceding unsigned comment added by 67.239.203.234 (talk) 04:05, 18 April 2010 (UTC)

OK, after digging a bit I found a reasonable review by Klimas (PMID 18177602) that mentions Lerner's studies, full text is available by google search but I'm not sure of copyright so I won't link to it:

"Lerner et al. [32•] presented data from an open-label phase 1 trial supporting EBV reactivation affecting cardiac function in profoundly ill CFS patients. The study,which was a follow-up to his previously published study of 19 CFS patients with cardiac wall motility abnormalities, showed a favorable clinical response from most of the 60 patients to 6 months of oral valganciclovir. Both investigators cautioned that the drug had a significant risk of bone marrow suppression and renal toxicity, and phase 2 placebo control studies are underway."

Note this is a phase 1 trial which is years away from any non-experimental usage. A short summary of this might go under the section Chronic fatigue syndrome treatment#Valacyclovir. It's about at the same point as the Straus acyclovir study was which is included there. Comments? Ward20 (talk) 05:05, 18 April 2010 (UTC)

This Klimas review only has 21 citations itself. And we don't know how much of the recovery in this open-label trial is due to the placebo effect. Anon above mentioned about some patients having "very positive results", but that can also happen simply from the placebo effect (see the acyclovir trial, for example). Also, Lerner seems to be out on his own as far as the virus-affecting-heart theory is concerned, and thus falls under WP:FRINGE. I did read the full-text of his "Valacyclovir Treatment in Epstein-Barr Virus Subset Chronic Fatigue Syndrome: Thirty-six Months Follow-up" article, and although it is in fact a double-blind placebo-controlled trial, the problem is that the active and control groups had very different EBV titers at baseline: 41 for the active treatment group vs 110 for the placebo group. That, combined with the low citations, would make me not want to include it in the article. --sciencewatcher (talk) 15:45, 18 April 2010 (UTC)

My position is that Lerner and Twisk and Maes deserve to be included, I would also like to point out that one of the negative XMRV studies was published in a pay to publish journal with an absolutely tiny almost token peer review time i.e its extremely easy to get published in that particular journal, yet that was allowed on the cfs page Goldstein123 (talk) 10:23, 18 April 2010 (UTC)

And yet I assume you are happy for the original Science article to appear in the article, even though it has been almost universally panned by scientists who are wondering what the heck Science was thinking (see for example here). You can't include articles in wikipedia simply because you like their conclusion. In fact to be a good editor you must do the exact opposite. --sciencewatcher (talk) 15:38, 18 April 2010 (UTC)

@G123. Read MEDRS carefully. Primary research should only be used in specific context for supporting information. You should argue this case in the Chronic fatigue syndrome treatment talk page, and you might gain some support. You won't on this page. I also assume that you are referring to the KCH/Imperial paper in PLoS ONE. PLoS ONE is an open-access journal, and the authors bear the overhead costs for such publication. As someone who makes good use of such open-access content, I applaud this trend.

@SW, I support your general statement, but dissent on your segue into your criticism of the Science paper. My reading list seems to be somewhat different to mine. I tend to follow what the US virologists are saying, and they still take it as a serious contribution, showing a possible yet unconfirmed association of XMRV and CFS. Yes, it has been panned by a cluster of UK physicians and researchers, but this group is far from "universal". I was amused when McClure was discussing this paper and some of her research (ahead of publication -- something that criticised JM for doing) in an interview that she gave on an Australian Health programme. She made that point that they new that they (the Imperial team, and in not a context related to CFS) had found XMRV and not contamination because they had sequenced it and the sequence was XMRV not MLV and slightly different to the Cleveland sequences. She also stated that to her knowledge the XMRV virus had not been isolated in virion form. Hummmnn, I guess that she never bothered to read Science paper nor the supplementary data, because the WPI/NCI team also sequenced their samples (and the sequences were listed in the supplementary data). These were also XMRV not MLV and slightly different to the Cleveland sequences. They also isolated the virion form. So the party is still out on whether the WPI/NCI results are entirely down to procedural and process errors, or whether they have truly found something. It will be the published studies that decide the truth here, not opinion pieces in journals that seems to be adopting partisan stances. -- TerryE (talk) 16:23,

18 April 2010 (UTC)

@SW you have highlighted exactly why Dr lerner and Twisk and Maes SHOULD be included, as editors it is our job to provide unbiased info, I highlighted the XMRV paper becuase it was a pay to publish affair and has actually since been widely criticised (but yet still appears on the wiki page), wheras the original science paper is holding up rather well, anyway XMRV aside, my point was is the negative XMRV studies were allowed then DR Lerner and Twisk and Maes are allowed too, its all about balance, we have to show both sides of the coin. Goldstein123 (talk) 17:24, 18 April 2010 (UTC)

No, I think you need to re-read MEDRS, particularly the sections titled "Assess evidence quality" and "summarize scientific consensus". Lerner is low quality and is ignored by the scientific consensus. And you've got it backwards about XMRV. The original Science article has been highly criticised by experts (including the former editor of the BMJ), whereas the negative studies have not (as far as I'm aware). Certainly lots of patients have criticised the negative reports, but that is irrelevant here. --sciencewatcher (talk) 17:32, 18 April 2010 (UTC)

@SW if this is the case then the PlosONE XMRV study fails MEDRS too, we cannot cherry pick here, we need balance, Lerners papers have been out way longer than the PlosONE and is wider accepted and respected, lets not cherry pick here, also your comment re BMJ, they actually got a lot of factual errors in their critique and banded around accusations of contamination yet had they read the original paper and supporting material they would have seen contamination had already been ruled out, also we cant just say "ohh BMJ dont like therefore lets throw it out with the bathwater" becuase that would mean you are saying essentially BMJ is better than SCIENCE magazine, whereas SCIENCE magazine is hailed as the best in the world, also you are only mentioning criticism of the SCIENCE paper, wheras you are ignoring all the praise heaped upon it by other doctors and scientists, remember getting in SCIENCE magazine is no easy feat, you also mention that you are unaware of any critiscism of the negative studies, but there is a huge amount of criticism of the negative studies (they didnt even follow the exact same testing methods set out in the original paper, so how the hell they thought they could replicate the study we do not know! also some very serious questions have been raised about the cohort and the qulity of samples), many have said the negative studies were just plain bad science! also lets move on from XMRV for a moment, we are talking about the far longer established papers of Dr Lerner, who himself is an extrmely important figure in the field, and there is nothing wrong with Twisk and Maes either, they meet the wikipedia criteria, one editor suggested I take this up on the treatment page but its rather hard when each time I make an edit SCIENCEWATCHER undoes my edit! I note on the treatment page other editors have mentioned things missing from the page which need adding so can some others chip in here,Goldstein123 (talk) 17:43, 18 April 2010 (UTC)

Discussion continued on the treatment page. --sciencewatcher (talk) 19:34, 18 April 2010 (UTC)

adding Lerner and Maes+Twisk to wikipedia

See here. --sciencewatcher (talk) 22:08, 19 April 2010 (UTC)

Please don't make kneejerk reversions of this addition. If anybody feels they have a good reason why it should not be here, please try to discuss it. Descending into an edit war, with ensuing warnings/bans, will just make people angry on both sides - it won't solve the underlying problem.

If you disagree with it, perhaps you could explain why?

bobrayner (talk) 13:55, 20 April 2010 (UTC)

sciencewatcher is trying to enflame that situation re lerner and twisk and maes, take a look back in the archive, sadly they seem to have a rather negative agenda towards cfs, this is not my words but this is what I have seen often mentioned in the same sentance as "sciencewatcher" it appears they have a long history of inflammatory behaviour, its all there to be seen in the archive, I feel this posting by sciencewatcher was unnecessary and deliberately inflammatory, why does sciencewatcher get to be the arbiter of everything CFS on this page, they have been having disputes like this for YEARS, I find it very much against the ethos of wikipedia. Goldstein123 (talk) 13:59, 20 April 2010 (UTC)

If and when he makes inflammatory posts, you may point them out and discuss the situation, as described in Wikipedia:Dispute resolution. However, posting a link to an offwiki forum where people are encouraged to register an account and take one specific side in this debate is not inflammatory but enlightening, explaining to neutral or casual observers why a sudden influcx of new editors all want the same. If you feel that bringing this forum campaign to light is inflammatroy, then my only conclusion is that you would have preferred it to be secret, hidden from the view of Wikipedia. The problem doesn't lie with this post by Sciencewatcher, but by editors who want to hide what brought them here. Fram (talk) 14:06, 20 April

2010 (UTC)

sciencewather has a long history of this behaviour, so surely that must account for something, plus we have no idea if sciencewater didnt post the posting on the forum to discredit the wiki edit...we have no idea about these things, please lets be open minded here. Goldstein123 (talk) 14:11, 20 April 2010 (UTC)

"this behaviour" = posting correct links to relevant offwiki campaigns? Good for him, I hope he continues like this. As for the chance that he posted it there in the first place... I doubt it. Why would he post to a forum that is bound to bring in brandnew editors like you, opposing his point of view? Only because he likes the drama? It looks to me as if there is enough of that without having to rallye new opponents. Fram (talk) 14:27, 20 April 2010 (UTC)

seems theres a lot of ganging up on this page, its against the whole ethos of wikipedia, if you are unable to read the archives and see how sciencewather has behaved then thats not my problem Goldstein123 (talk) 14:30, 20 April 2010 (UTC)

No, I didn't create the forum posting. I thought it was a bit odd that lots of new people were coming on and trying to add these two things to the article, so I just did a google search for "wikipedia lerner" and found that forum.

Anyway, if Goldstein123 wants to discuss the edits in a rational manner, me and the other editors here are quite happy to do that. I listed 4 points on the treatment talk page why I don't think the references should be included, but Goldstein123 hasn't responded to any of them and instead just accuses me of various things. --sciencewatcher (talk) 14:34, 20 April 2010 (UTC)

I have infact responded and in my view lerner does meet MEDRS, a sciencewather was the one who called me out on MEDRS it is actually his perogative to explain where lerner fails MEDRS, so please sciencewather explain to us all why in your view lerner doesnt meet MEDRS in detail please, Goldstein123 (talk) 14:39, 20 April 2010 (UTC)

This topic is about a discussion thread on Cort's About ME/CFS forum. I've just had a scan and the OP got some sympathy from other members but I saw little evidence of effective meet-puppetry. If there isn't a breach of WP rules, then I suggest that we draw a line under this one. As sw stated above, we've continued this thread on CFS treatments. -- TerryE (talk) 15:23, 20 April 2010 (UTC)

I agree terry, I think this whole subheading should be removed as it totally detracts from the key issue that we had been discussing previously on the treatment page. Goldstein123 (talk) 15:35, 20 April 2010 (UTC)

G123, I said "draw a line under", not remove. The discussion here is done, not to be censored. Please read WP:TPO as we've suggested; there are very specific rules relating to conduct on talk pages. -- TerryE (talk) 15:58, 20 April 2010 (UTC)

G123 seems to have missed my comments regarding why the additions fail MEDRS, so here it is again:

- www.cfsviraltreatment.com is not a MEDRS (websites are not generally accepted as reliable sources for medical research, unless it is the CDC or similar - and even then a high quality review in a journal is preferred)

- Maes+Twisk only has one citation and is therefore not a reliable secondary source

- Even if you wanted to include an individual paper of Lerner (e.g. PMID 18019402), it only has 16 citations and is a poor quality small trial. You'll see that he splits the 25 patients randomly into 2 groups, but those two groups have very different titers at baseline (the placebo group is DOUBLE the other group!) Admittedly we do include Strauss' small acyclovir trial, but it has 161 citations and is included in a high quality review. I see no benefit of including Lerner's study when we already have Strauss' higher quality, more cited study in the treatment article.

- And even if Lerner's study was high quality, we don't generally include individual studies in wikipedia - we prefer high quality reviews. That means something that is published in a high quality journal (BMJ, Cochrane Collaboration, Lancet, etc.) AND has a good number of citations (you'll see that most of the reviews we use in the article have 200 or 300 citations).

--sciencewatcher (talk) 17:18, 20 April 2010 (UTC)

@SW, perhaps you could move this post to the active thread on CFS treatment talk ;-P

-- TerryE (talk) 10:21, 21 April 2010 (UTC)

Actually it is already there - I just copied that here --sciencewatcher (talk) 13:31, 21 April 2010 (UTC)

Personal attack removed. Ward20 (talk) 22:26, 25 April 2010 (UTC)

Yeah, whatever. --sciencewatcher (talk) 21:42, 23 April 2010 (UTC)

Personal attack removed. Ward20 (talk) 22:26, 25 April 2010 (UTC)

@IP217.39.39.158, what on earth are you talking about? If you are talking about the "About ME/CFS" forums, I don't have an account there, and I would be surprised if SW has. It's found admin Cort is a pretty strong character and even if we did have an account, we would have zero influence with him. -- TerryE (talk) 21:34, 25 April 2010 (UTC)

IP217.39.39.158 and IP86.159.3.27, the purpose of this page is to discuss information here to present accurate infomation that has been published by the highest quality sources on ME/CFS. There is a wide variety of views published on the illness and that is going to be represented in the article and on the talk pages. Unfounded accusations against editors have no place in this process. I am through watching editors be attacked on talk pages so I am removing those posts per Wikipedia:Talk page guidelines and Wikipedia:No personal attacks. Ward20 (talk) 22:26, 25 April 2010 (UTC)

(This post was deleted by Ward20) -- TerryE (talk) 15:07, 26 April 2010 (UTC)

REMOVE comment has nothing to so with improving article and is a WP:PA. Ward20 (talk) 22:53, 25 April 2010 (UTC)

+1: I support this removal under WP:TPO. If someone with the same username did something on another forum, then address that issue on the other forum, or with the individual concerned through that forum. As far as I can see, this has nothing to do with Wikipedia. -- TerryE (talk) 00:18, 26 April 2010 (UTC)

I propose this section is removed as there is no evidence why it needs to exist...the link provided above as "evidence" doesnt exist, so this whole section is nothing more than speculation. -- 86.146.176.206

It existed, evryone participating in this discussion saw it, even those opposing SW. The section is now deleted or renamed or otherwise hidden, but still available in Google Cache[42], but even when this no longer is available, this section can still stay. It contains discussion about other things as well, the off-wiki discussion was just a starting point. Fram (talk) 13:03, 26 April 2010 (UTC)

if that is the case then this thread shouldnt be called a "campaign" this section should just be about twisk and maes and dr lerner, not written in such a slanderous way that the word "campaign" suggests, I suspect the originator of this section used the word "campaign" to slander the attempt to get lerner and twisk and maes added, and it seems to have worked doesnt it. if we want to be adult about this then remove the section about a "campaign" -- 86.146.176.206

I don't think namingan internet forum discussion to do something a "campaign" can really be called "slanderous". This section started as a short notice about the campaign, and then evolved in a section where a number of new or recent accounts tried to include Twisk and Maes, mainly by attacking Sciencewatcher (plus one or two new editors very insistent on removing the notice about the campaign, just like you seem to be). I believe it would bemore fruitful to try to discuss rationally why you believe Twisk and Maes should be added, then to antagonize people by going on and on about secondary aspects like the existence of the campaign, or the labelling of it. Fram (talk) 13:31, 26 April 2010 (UTC)

lets rename the section then, calling it a campaign IS inflammatory when no such campaign exists, a campaign would entail some sort of coordinated cohesive venture and I see no evidence of that, seeing as though the link doesnt even exist anymore it seems folly to continue calling this section a campaign -- 86.146.176.206

Fram, IP 86.146.176.206, the above posts by Ward20/myself about the removal of talk page content related to this post by 217.39.39.158 which contained an attack on sciencewatcher and I think that you will agree was removable under WP:TPO guidelines if you read the content and as explained by Ward20 in his subsequent post. IP 86.146.176.206 deletions did not comply with WP:TPO and were therefore unjustified and against WP policies.

I am not sure why sign-bot isn't running but IP 86.146.176.206's posts aren 't being autosigned. @IP 86, please follow the instruction at the top of the edit page when posting to a talk page and "Please respect the talk page guidelines, and remember to sign your posts by typing four tildes (~~~~)".

Pov edits and large deletion of reliably sourced material[43]

I reverted these because there was no talk page discussion and consensus for these POV changes and deletions of reliably sourced information. Ward20 (talk) 08:09, 27 April 2010 (UTC)

Discussion of recent edits

After the recent flurry of edits there are a few sections that have major changes or deletions and a few that have minor changes. Discussion on some of the major changes might be appropriate first. diff of changes

The Canadian_2003_criteria has been removed. My preference would be to re-add. The Wyller review presently used to support the inclusion of the Fukada and Oxford criteria states that it is one of the other criteria in use: "Other case-deinitions in current use are the so-called Oxford-definition (4), the Australian definition (5) and the Canadian definition (6). Neither of these deviate strongly from the CDC-definition, but there are important nuances." Google Scholar shows 128 citions to the Canadian definition. The Australian definition should probably be investigated for addition also.

The XMRV section is essentially gone. I believe Sciencewatcher summed it up well above. I agree and think it should be put back the way it was per previous consensus.

The Pacing section has been removed. I believe a pacing section is beneficial to the article. The removed material seemed to be decently put together. Some new secondary sources may be available to improve it.

Discussion please. Ward20 (talk) 01:21, 9 May 2010 (UTC)

I've just re added the deleted Pacing section. I cannot see why it was removed in the first place..StevieNic (talk) 14:02, 9 May 2010 (UTC)

The pacing section should be retained - I know it is controversial and a lot of patients hate the idea that simply slowing down is a "treatment", but that doesn't matter. Pacing is one of the strategies that have been tested and found successful; since there is no one single treatment that unequivocally works, but there are multiple peer-reviewed evidence to support it, it should be retained.

Regards the XMRV, I also agree that a brief summary, with context, would be useful. I would suggest in addition to the current pathophysiology section, perhaps a mention in history - something brief and neutral that speaks to the perception that CFS is believed by many to be biologically-based.

I would also support a mention of the Canada criteria, even in sentence prose (i.e. "Other definitions exist, including the Canada criteria (which differs by..." etc.). Unfortunately for wikipedia and patients, virtually nothing about CFS is set, absolute or universal, and I would expect nearly every section in the page to reflect that. WLU (t) (c) Wikipedia's rules:^simple/_complex 14:41, 9 May 2010 (UTC)

I've just re added the Canadian criteria piece, it certainly should feature with the rest.StevieNic (talk) 14:59, 9 May 2010 (UTC)

Just as a point of reference (since I'm "mostly retired" and intend to remain that way), here is a diff of changes from immediately before the more controversial edits began up until now. I didn't go through it in detail, but most of the changes look okay. It may be beneficial to review and change some of the wording that remains...in particular, the "patient activist" bit jumped out at me. —RobinHood70 ^{(talk • contribs)} 17:20, 9 May 2010 (UTC)

To RobinHood70's comment, the previous wording, "but widespread approval of a name is lacking." was sourced from the presently cited source which stated:

"Now a new report has been published, and we hope that it will mark a turning point in the history of the illness. A working group on Chronic Fatigue Syndrome and Myalgic Encephalomyelitis or Encephalopathy, the name preferred by patient advocate groups in the UK, was set up in 1998 to report to the Chief Medical Officer of England and Wales.4.

The fact that both names for the illness were used symbolises respect for different viewpoints whilst acknowledging the continuing lack of consensus on a universally acceptable name."

Similar wording to the present version, but many patient groups disagree with this name. (leaving out what I consider unsupported words) could be supported by, a different source pgs 158-160.

IMO the previous material is more neutral, more applicable in its scope, and the source is authored by major researchers across both sides the issue. I like the previous version, but i'm open to other suggestions.

Concerning WLU's reqest for a brief summary on the XMRV material. A new XMRV review article sources,"reconciliation of these differences is necessary to investigate XMRV pathophysiology and treatment in CFS, and other possible XMRV-related illnesses, if they exist."[44] Is that what you had in mind, or something different? Ward20 (talk) 21:08, 9 May 2010 (UTC)

I would suggest not using that wording since. "Reconciliation of these differences is necessary" pushes an opinion that reads as if it comes from wikipedia. It either needs to be attributed to an individual, or reworded - "XMRV has been posited as a cause of CFS, but its role in the pathophysiology and treatment of CFS or other XMRV-related illnesses is not yet established." As I've said before - people think X, Y and Z might be causes, they don't know that any is a cause. People need to keep WP:RECENTISM in mind - eventually the community of scientists and patients will probably converge on a set of principles - but we're not there yet, and each new theory doesn't deserve a new section, or even a new sentence, until it has been replicated, adopted, and there are review articles that indicate mainstream acceptance. WP:MEDRS urges caution regarding primary sources for a reason, and it's from secondary sources that the relative prominence of each opinion is determined. WLU (t) (c) Wikipedia's rules:^simple/_complex 16:33, 10 May 2010 (UTC)

POV edits from SPA COI editors

Ward20 and ME mafia editors control this article, it is not acceptable. When you are a patient activist or you get money from CFS patients, causes pls declare your interest and STOP messing w Wiki. CBT is the only treatment w evidnece in controlled trials, XMRV is total BS and nonMEDRS, pls stop and go write your blogs people, WP is a serious encyclopedia. RetroS1mone talk 05:15, 5 May 2010 (UTC)

Please refrain from repeating baseless accusations that have already been addressed, and editing against consensus. - Tekaphor (TALK) 10:24, 5 May 2010 (UTC)

This mass revert is concerning:[45]. Tried reverting but there was some version conflict, and I don't have the time right now to manually change it. - Tekaphor (TALK) 10:44, 5 May 2010 (UTC)

Retro, even though I have the same viewpoint as you, I recommend that your edits be reverted. You can't edit based on your opinion, it has to be based on the evidence and not the "truth". Didn't we have this discussion a while ago? And you also can't start accusing editors of bias and other such stuff - always ASSUME GOOD FAITH. And some of your edits of my changes would appear to make the article worse: 'associated diseases' is a more ambiguous term than 'differential diagnoses' in my opinion (both are alternatively under MEDRS), and psychiatric disorders is a better term than the 'mental disorders' you have put in. Also you haven't proven that MUPS is commonly used to describe CFS. --sciencewatcher (talk) 14:37, 5 May 2010 (UTC)

I have reverted this mass revert. I will try to go through your edits and see if any are supportable, but as far as I can see, the bulk if not all are simply disruptive editing, e.g. the wholesale deletion of the references to XMRV. This behaviour is entirely consistent with the points raised in your previous RfCU. -- TerryE (talk) 17:51, 5 May 2010 (UTC)

Regarding XMRV, that was discussed extensively both here and at the XMRV talk page. Although it is mostly based on primary sources, we have included it because of the huge publicity the whole thing generated. The WPI study is balanced by the 3 negative studies, so there is no question of a POV problem. --sciencewatcher (talk) 18:03, 5 May 2010 (UTC)

I have stated on my talk page in more detail that the accusations must stop. I concur that the mass revert was disruptive and based on opinion and not discussion of content and sources. It removed improvements that Sciencewatcher, myself and several others have edited and often discussed on the talk pages. I have included a book by Sharpe in the further reading section for balance of different views. IMO there should be more information available for the readers not less. Concerning the unreliable source tag that was added; I would think there is a higher quality source that states prevalence in the UK. If so, I think it should be used, but if not, I think the UK should be represented. Ward20 (talk) 20:30, 5 May 2010 (UTC)

OK i do not mass revert any more, i make edits and explain them.

• Pateint surveys are nonmedrs. Pls do not use 10 patent surveys, it is nonmedrs.
• Pls do not think UK is main country, it is a world wide problem.
• Canadian criteria is not used.
• CBT is only effective treatment, i do not like when editors do every thing to degrade it, the literature is not supporting. Pls do not degrade w only negative quotes you find.
• Pacing is not supported from major studies.
• XMRV is discredited one study to three, it is like old studies w HTLV. Also it is from patient activist institute. There does not need a paragraph about it so i put with viruses.
• major study does not find mortality change w CFS. Pls do not say major study and small study from CFS patient activist researcher are same level, they are not.

Pls do not mass revert my edits w/o explaination why. RetroS1mone talk 06:20, 6 May 2010 (UTC)

RetroS1mone, contrary to your frequent false claims and conspiracy theories about the "ME mafia" bogeymen, none of the alleged members editing at Wikipedia have moved towards censoring the reported benefits of CBT, or all mention of psychological cofactors, or appropriate caveats from biological research. You merely create strawmen to discredit other editors in a dishonest fashion. Ward20 just added Sharpe's book as balance, not really something a "ME mobster" would do.

Preliminary findings suggest that CBT has mild/moderate and temporary effect for some patients on the self-reports of a single symptom ("fatigue") out of many symptoms. Like some biological research, CBT also has important weaknesses which are highlighted by reliable secondary sources. MEDRS says "Make readers aware of any uncertainty or controversy." It is uncertain that CBT actually increases physical activity, physical functioning, ability to work, long term benefit, works for the more severely affected, or is universally applicable. These are all important aspects to claims about "effective treatments" for a debilitating condition.

The fact that you actively work towards censoring all these caveats for CBT while presenting yourself as the crusader for "MEDRS" and "NPOV" is highly suspicious, transparent, and hypocritical. Especially when you claim to have no opinion on CFS, despite hundreds of edits to the CFS articles. After all your incessant ranting about the agenda and POV of other editors, I think it is finally time that the light shone on your agenda and POV. Why the attitude problem and underhanded tactics? Even Sciencewatcher who despises patient groups and gets angry at biomedical researchers does not come close to your apparent obsession with "activists".

As for XMRV, I have no opinion on that yet, waiting for the science to sort it out, but you say "1 vs 3 studies" as if it's some kind of vote. A trillion negative studies are meaningless if the methodology is not sorted out first.

_Tekaphor (TALK) 02:59, 7 May 2010 (UTC)

Correction: I don't despise patient groups and biomedical researchers. Only the ones who use bad science. --sciencewatcher (talk) 14:53, 7 May 2010 (UTC)

Tekaphor, please try to assume good faith and please try to stop putting words in other peoples' mouths - it won't help build a better article.

In particular, comments like "After all your incessant ranting about the agenda and POV of other editors, I think it is finally time that the light shone on your agenda and POV. Why the attitude problem and underhanded tactics? Even Sciencewatcher who despises patient groups and gets angry at biomedical researchers does not come close to your apparent obsession with "activists" will only undermine your own credibility whilst angering other editors - that's a Bad Thing, not a Good thing.

Can't we all try to play nicely? (Yes, this applies to other editors, too).

bobrayner (talk) 15:57, 7 May 2010 (UTC)

OK, thanks. My comments would have no doubt appeared harsh, especially without the necessary historical context. - Tekaphor (TALK) 00:48, 12 May 2010 (UTC)