Talk:International Lyme and Associated Diseases Society/Archive 1

Archive 1

Edit made to recent edit, 7/3/10

To avoid a revert and possible spat, I amended the most recent edit, made anonymously. I corrected the list and added references for state physician protection bills, and removed the linked reference to a patient advocate site. Hope this satisfies all policies and all people involved. Best wishes, Postpostmod (talk) 16:16, 3 July 2010 (UTC)

proposed content changes

There are some innaccuracies in this article that need to be changed and that are essential for mainitaining NPOV, representing fairly, proportionately, and, as far as possible, without bias, all significant points of view. First, the general description of ILADS as an organization should be changed. ILADS is a professional medical society rather than an advocacy or interest group. The reference currently cited to describe ILADS is from Forbes Magazine, which is not a suitable secondary source. The ILADS website offers a more accurate description of the medical society because the website provides first hand information. I propose that the first paragraph should be quoted from the ILADS website: "ILADS is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases."

Lyme disease is a controversial topic so covering both sides of this polarized and sometimes heated topic is appropriate, but not if it is biased in approach. The point of view held by ILADS is a significant POV that is well supported in medical literature. Bias is most apparent in the last paragraph. As well as many others, there is a very good review article that supports the existence of chronic Lyme disease and persistence of infection after antibiotic therapy. I propose that text be included referencing this paper and possibly others to provide a balanced POV. Berndston K. 2013 Int. J. Gen Med. Apr 23;6:291-306. doi: 10.2147/IJGM.S44114. In accordance with WP:MEDRS it is a secondary source -- a systematic review published in a peer-reviewed medical journal -- and therefore an ideal medical reference. This review describes mechanisms by which Borrelia spp. evade immune defenses and survive antibiotic challenge.

If there are no objections I will make the necessary editorial changes. Shadlands (talk) 15:28, 17 June 2013 (UTC)shadlands

The secoond paragraph of my proposed changes did not come out so here it is again. Sorry. Lyme disease is a controversial topic so covering both sides of this polarized and sometimes heated topic is appropriate, but not if it is biased in approach. The point of view held by ILADS is a significant POV that is well supported in medical literature. Bias is most apparent in the last paragraph. As well as many others, there is a very good review article that supports the existence of chronic Lyme disease and persistence of infection after antibiotic therapy. I propose that text be included referencing this paper and possibly others to provide a balanced POV. Berndston K. 2013 Int. J. Gen Med. Apr 23;6:291-306. doi: 10.2147/IJGM.S44114. In accordance with WP:MEDRS it is a secondary source -- a systematic review published in a peer-reviewed medical journal -- and therefore an ideal medical reference. This review describes mechanisms by which Borrelia spp. evade immune defenses and survive antibiotic challenge. I will make the proposed editorial changes if there are no objections. Shadlands (talk) 15:33, 17 June 2013 (UTC)Shadlands

violation of NPOV

This article is getting to closer to neutral in tone, however, I'd like to point out that the following sentences do not reflect that of a NPOV. The first sentence is not too bad, but the second is clearly a biased statement. It is opinion rather than evidence-based. I propose that the paragraph be modified, added to, or possibly removed.

"As a result of this fundamentally different view of the nature of long-term effects of Borrelia infection, ILADS has produced treatment recommendations which conflict with those of major mainstream medical bodies. A 2004 article in the Pediatric Infectious Disease Journal on the prevalence of inaccurate online information about Lyme disease cited the ILADS website as a source of such inaccurate material."Shadlands (talk) 19:31, 23 June 2013 (UTC)Shadlands

As there appears to be no objections, I will be making appropriate editorial changes to the main article. I will be modifying the text, adding some text and including some new references. These references are review articles and are published in peer-reviewed medical journals and are therefore high quality medical references by MEDRS standards. Shadlands (talk) 18:01, 24 June 2013 (UTC)Shadlands

Turn the Corner Foundation

The Turn the Corner Foundation has changed it's name, and is now known as the "Tick Borne Disease Alliance," or TBDA. I will therefore change the name of this organization. Shadlands (talk) 14:36, 27 June 2013 (UTC)Shadlands

report problem with article

I am new to wikipedia and I really do not want to edit or be involved with editing. Having said that, I am a medical practitioner and looking through your aticles I could not help but notice some innaccuracies in both this article and the article on Lyme disease. I have looked on the help page and it recommends reporting an article problem to the talk page on that article. Both articles are biased on the topic of Post Treatment Lyme Disease Syndrome (PTLDS) or Chronic Lyme Disease (CLD) -- it really does not matter to me what name you wish to call it. This is a controversial topic and therefore articles should accurately reflect the controversy -- not just present one point of view. There are peer-reviewed studies representing both sides so why not have your articles reflect this? From 1984 to date there are over 100 peer-reviewed articles that provide evidence that both humans and animals can have persistent infection after antibiotic treatment. It is very irresponsible to not provide up-to-date medical information that reflects the wide range of literature out there. Furthermore, you need to check the CDC's website on this topic as you have misrepresented their point of view. While it does lean towards the point of view that symptoms related to Lyme disease post-antibiotic treatment are not caused by persistent infection it acknowledges that is is currently a grey area that needs further study, and I quote: "some health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. Recent animal studies have given rise to questions that require further research and clinical studies to determine the cause of PTLDS in humans are ongoing." Rogerroger.martin (talk) 22:30, 10 October 2013 (UTC)

I tried to expand the dialog within the medical controversy by presenting both POV as this is the dissenting organization

I had edits reverted based on NR NRMED. Every reference I made included a doctor who authored the current ILDS guideline. How can this be NR or NRMED?

I have reviewed past edits that have been reverted and they seem unfair too: this is a page about a dissenting organization, even the flat earth society gets a page that shows its POV. But even beyond that, this organization is treated as fringe.

If a viewpoint is held by a significant minority, then it should be easy to name prominent adherents; How about Dr. Burgdorfer and Dr. Fallon? One discovered the lyme bacteria, and the other runs a department at Columbia, http://www.ilads.org/files/2008_meeting/Program.pdf <-- Burgdorfer is speaking at ILADS conference http://www.ilads.org/lyme_programs/boston/speakers/bio_fallon.php <-- Fallow is speaking at ILADS conference — Preceding unsigned comment added by Bob the goodwin (talk • contribs) 06:51, 28 December 2013 (UTC)

This organization represents a significant minority view.

from the Columbia university Lyme and Tick Bourne Research center:

http://www.columbia-lyme.org/patients/controversies.html

Both sets of doctors are practicing medicine in a reasonable fashion based on the application of certain diagnostic principles, although the therapeutic approaches differ considerably stemming from the narrow vs broad criteria for diagnosis. This is the essence of the medical controversy surrounding chronic Lyme disease. Until medical doctors have a test that definitively identifies the presence or absence of infection (and such a test does not yet exist), the controversy about the diagnosis and treatment of chronic Lyme Disease will continue.

I am new, if there was anything biased, I can fix it, but immediate reverts on a low priority page seem inconsistent with the policies of Wikipedia. — Preceding unsigned comment added by Bob the goodwin (talk • contribs) 06:36, 28 December 2013 (UTC)

I also undid both revisions, because the Wikipedia policy says that discussions should occur here for 7 days first. I might be wrong, and I might be convinced to slither away, but I think an error was made by jolol in good faith, and I would like to address the concerns in a NPOV way. — Preceding unsigned comment added by Bob the goodwin (talk • contribs) 06:45, 28 December 2013 (UTC)

I have had two reverts with no discussion in talk. I am doing something wrong?

The first time I was just IP because I didn't log in correctly. But the second time I put a lot of information in. I just reverted once and then asked for help. Let me know if I did this wrong.Bob the goodwin (talk) 07:54, 28 December 2013 (UTC)

RfC: Is this article specifically relating to a significant minority viewpoint (as opposed to fringe)?

If a viewpoint is held by a significant minority, then it should be easy to name prominent adherents; I list two very prominent adherents earlier in the talk section. Can we agree this is a significant minority viewpoint, and that this it the organization that represents it?

Thanks. Want to understand the rules and not be making rookie mistakes. Bob the goodwin (talk) 07:54, 28 December 2013 (UTC)

The question is kind of unclear to me. You seem to be clearly acknowledging that ILAD holds a minority view. If you are, then I think it follows pretty clearly (see WP:FRINGE) that the mainstream view must be very clearly stated and must be dominant. Wikipedia is not a platform for spreading minority views on health issues - especially ones that directly contradict mainstream views. If you have not read WP:MEDRS then please do - Wikipedia needs to present reliable, mainstream medical science, whatever that is as of the date you are working. I think the current version of the article does that well.Jytdog (talk) 03:13, 29 December 2013 (UTC)

• I agree with what Jytdog has said and would add this: One of the five pillars of Wikipedia is writing from a neutral point of view. WP:FRINGE and WP:MEDRS are important guidelines to achieving a neutral point of view in medical articles. You might want to take a look at a section of WP:NPOV that sets out the policy for writing about minority viewpoints—WP:WEIGHT —summarized in the first sentence of that section: "Neutrality requires that each article or other page in the mainspace fairly represents all significant viewpoints that have been published by reliable sources, in proportion to the prominence of each viewpoint in the published, reliable sources." Sunray (talk) 06:49, 29 December 2013 (UTC)

• Since the article specifically describes an organisation that holds this particular fringe view, it's quite acceptable to describe that view in some depth in the article, who its prominent proponents might be, and any arguments they may make in its favour. However, as Sunray and Jytdog have pointed, this must be done within the context of the mainstream view. An expanded version of this article should (as the current version does) make it clear in the lede that this is a minority view, and there should also be a "controversy" section or the like that explains why most experts regard the views of the organisation as incorrect. The relevant section of WP:NPOV here is "the majority view should be explained in sufficient detail that the reader can understand how the minority view differs from it, and controversies regarding aspects of the minority view should be clearly identified and explained." So long as you do that, and follow the guidelines in reliable sourcing mentioned above, you should be all right. One might, however, question how much further there is to say on the matter beyond what's already at Chronic Lyme disease#CHRONIC and try to avoid duplicating too much information. If there isn't much to add on that topic, then this article might more profitably focus on the history, supporters, etc. of the organisation (which seems to be what you're suggesting), while still making it clear that their view is a fringe one. Anaxial (talk) 08:43, 29 December 2013 (UTC)

I agree that the organization page should not overlap anymore than necessary with the chronic Lyme section. The chronic Lyme section excludes several issues that are on the Wikipedia.de site, where there is an established acceptance of chronic Lyme. For example Herxheimer reactions are serious consequences of antibiotic treatment of chronic Lyme disease. But if chronic Lyme disease is fringe in Wikipedia.us, then so is Herxheimer (except in chronic syphilis). With hundreds (or maybe a thousand) doctors now trained by ILADS, a Herxheimer discussion is relevant (in the Lyme section, but not in ILADS). — Preceding unsigned comment added by Bob the goodwin (talk • contribs) 10:10, 30 December 2013 (UTC)

• this article is about the ORGANIZATION - the focus of the article must be on the organization and not promotion of their fringe views. -- TRPoD aka The Red Pen of Doom 13:13, 29 December 2013 (UTC)

These are great responses, but I think they missed my core point. There are three classifications in the guidance, not two. (WP:UNDUE) Mainstream, significant minority, and fringe. I agree with all of the above statements for fringe groups (such as debunking the use of vaccines). I do not think the evidence supports that this group is fringe, since it has two very prominent adherents in the USA (one who may be the most cited author in the field, but I won't do original research), and because it is only mainstream in the USA. It seems that any of the following may be legitimate points of view from each of you:

1. That there is no such thing as significant minority viewpoints in medicine, only mainstream and fringe. I can see that as a rational outcome, and would be willing to help support a rule change to Wikipedia to that effect.

2. That this case has not risen to the level of significant minority viewpoint, in which case I would like to present data and citations to the 3 of you, and will agree in advance to honor your consensus. I submit in advance that the main US medical society involved has an opinion that disagrees with this organization, but that goes back to question #1. Maybe there is an implicit high bar in medicine for this classification that I have not learned.

3. That it is not the place of a newbie to raise this kind of question, and I should first gain credibility elsewhere before raising these kinds of questions, which also seems reasonable, and I would be willing to help put such a rule (or guidance) in place.

4. That I poorly framed the question, or I started on the wrong foot. Clearly I started with misconceptions about Wikipedia. I have read through a lot of edits from some of you three and I agreed with every one. But that doesn't mean I can't bring new perspective.

5. That medical articles should not be written by non-experts.

I don't mind being wrong, and am grateful for the chance to debate. No matter what is decided I will work honestly with anyone to get the tone and data correct. I do not want fringes to be elevated, and I want to work within the system to get the correct classification, and do not believe my question has yet been answered to give me the right guidance. To each of you especially: THANKS SO MUCH for taking time I may be wasting, I promise I will fold quickly if I am misguided.

Also I would love robol to be in the conversation. He is a very effective anti-fringe editor, so would be a likely collaborator if I were able to be effective at adding value to some of the medical articles and started small.

Bob the goodwin (talk) 01:42, 30 December 2013 (UTC)

I still do not understand what you are driving at. Things tend to be more efficient if we work on concrete things rather than abstract principles. Perhaps you could propose content and supporting sources here on the Talk page, that you would like to add to the article.Jytdog (talk) 02:15, 30 December 2013 (UTC)

Also, I have checked out Brian Fallon (his Columbia website is here. From what I can tell he generally studies psychosomatic disorders and seems to have taken up "chronic Lyme" as something that fits within that. It is clear that there are a subset of people who have had Lyme who go on to have chronic problems; that is a population that is interesting to study and to try to help. I don't see Fallon as coming even close to saying that Lyme causes chronic symptoms in those patients. This kind of nuance gets thrown to the wind when people start to argue. But in any case, I don't think it is reasonable to put him in the camp that says "Lyme causes chronic symptoms in some people", if that is where you are going. Jytdog (talk) 02:30, 30 December 2013 (UTC)

Sorry I was not clear. Simply look at the last change that was undone by robol to this article. (I see now many mistakes I made, but the wording I used is the POV I am proposing. Reporting on the Lyme wars is not my priority, and I think that part of the story is too inflammatory, and it may ultimately be hard to find an objective reference.) Robol's objection (he is not here to speak for himself) is that it is not NPOV because WP doesn't give equal weight to fringe groups. I agree with robol, that my wording is improper for a fringe group. I would not want to see a vaccine denialist group be treated the way I proposed for IDSA. Since Wikipedia has three categories, I was trying to write it as a significant minority group. Given that this was an article ABOUT the organization I also felt less need (as is true of the article about the flat earth society) to strictly avoid giving equal weight, but am learning the risk of coat hanging. I would prefer delaying a full rewrite as long as it seems the consensus is moving towards this group being considered a fringe group. Is that ok? Bob the goodwin (talk) 04:37, 30 December 2013 (UTC)

Regarding Fallon, He runs the Columbia University Lyme Center, which has a page about chronic Lyme called "controversies" [1]. He participates and speaks at the ILADS conferences [2]. He has a recent review article on chronic Lyme [3] that openly references ILADS and the chronic Lyme controversy. I don't think there is any question he is in this camp, and I can probably find references from IDSA leaders that imply as much.Bob the goodwin (talk) 04:37, 30 December 2013 (UTC)

You raise a good question I had not thought through. How would one define this minority opinion? I was simply using the "Chronic Lyme" words to describe the minority opinion to explain why people remain sick after IDSA treatment, vs. "Post Lyme Syndrome" which is used by IDSA adherents. There are two other ways (I think) to define the minority camp, and either works for me but I am reluctant to have an opinion. One is that there is disagreement with the IDSA guidelines on the use of long term use of antibiotics in treating Lyme disease. Even after reading everything I am not sure which camp I would be in, but luckily all I have to do is summarize. The broader definition which is obviously identifiable in the research is whether the post-treatment symptoms are due to the persistence of the bacteria in the body or whether it is due to an autoimmune response. The words 'chronic Lyme' have been used by one camp, and the words 'post Lyme syndrome' by the other, but now it appears that both (ex. Wormser, Fallon) are starting to use 'post-treatment Lyme' as a compromise. By all three standards Fallon would be identified in the ILADS group, but his active participation is also a pretty strong signal.Bob the goodwin (talk) 04:37, 30 December 2013 (UTC)

I don't think Fallon's involvement (one luminary) is sufficient to make the case strongly that ILADS is not a fringe group, or that the belief in chronic Lyme is not a fringe camp. Burgdorfer discovered the bacteria, just as Steele discovered the disease, so has been involved with the research from the beginning and is very well known and well respected in the field. He is retired, but has been very active in both the science and the politics of the issue.Bob the goodwin (talk) 04:37, 30 December 2013 (UTC)

Also there has been a slow peeling off of the Europeans on this issue. They have different strains of bacteria, but neither side is asserting that the Europeans have a different disease. However their strains have a higher incidence of neurological symptoms, and their studies (sorry: my observation) are more likely to be in the chronic lyme camp. Here is an example of Germany, for example, having moved over to the ILADS side [4] I think there are two other countries. I need to research this a lot more carefully as I do not fully understand the European story, but I think the gist is correct.Bob the goodwin (talk) 04:37, 30 December 2013 (UTC)

— Preceding unsigned comment added by Bob the goodwin (talk • contribs) 04:10, 30 December 2013 (UTC)

If you check out the German page on Lyme disease (https://de.wikipedia.org/wiki/Lyme-Borreliose) you will see that the Deutsche Borreliose-Gesellschaft, whose site you link to above, appears to be parallel to ILADS and that they do not represent the mainstream German medical establishment. Bob, it remains very unclear to me what you are trying to accomplish. I looked at the last version of the article before User:Yobol reverted, and to be honest it is a mess. The last paragraph, for example, said "Several doctors involved with ILADS were subject to license review proceedings for not following ILAD guidelines, due to complaints by ILAD members, including Joseph Jemsek MD, Joseph J. Burrascano, Jr., MD and Charles Jones MD. The message of the show trials is clear. Doctors who prescribe longer courses of antibiotic treatment, or take other aggressive measures required for cure, may be subject to the same treatment as Burrascano, Jemsek, Jones, and 50 other physicians who have been investi-gated or sanctioned by state medical boards. Ironically, long courses of doxycycline, the most commonly used antibiotic in Lyme treatment, are routinely prescribed for acne.[10]" Much of this paragraph is copy-pasted from the source provided which is a violation of copyright and therefore subject to immediate deletion as per WP:COPYVIO. And in any case the source is noncompliant with WP:MEDRS and shouldn't be used to at all; I am not sure it even meets the standards for regular reliable sources (WP:RS). And I think you refer to ILAD in two places where you mean to refer to IDSA? This is what I mean - it is a mess. The penultimate paragraph is the same: "ILADS has also accused the IDSA of inflammatory and Misleading Statements, such as "Occasionally, these patients are treated with unconventional and highly dangerous methods such as bismuth injections or deliberate inoculation of plasmodia to cause malaria."[2] ILADS does not recommend these therapies, the malaria incident was over 17 years ago, and the bismuth incident was one physician." The first sentence there is sourced to a NEJM article that was not authored by IDSA, so it is bizarre that you would use a quotation from that article as a statement by IDSA. The Germanic capitalization of nouns is bizarre ("Misleading Statements"). The last sentence is unsourced, and is argumentative. This paragraph too is a mess. I also would have deleted both of them, and most of your other additions as well. But even if I look past all this and really try to see what your contributions add up to, I cannot see a theme. What is your goal with this article, concretely? Jytdog (talk) 10:09, 30 December 2013 (UTC)

Thanks for your honest comments jytdog! Yes that first version sucked. I was drawn in too fast. Clearly some of the inflammatory points being made on each side did not add to the story. I was frustrated to not see both sides of the story represented. I was confused on how to mix RSMED, and RS stories in the context of a encyclopedia. Bob the goodwin (talk) 12:25, 30 December 2013 (UTC)

Concretely I want this article to be accurate and useful to future patients who are confused by what is going on. Concretely I want to say that ILADS represents a different standard of care then IDSA, and I want to see the minority view fairly described but still a minority view.Bob the goodwin (talk) 12:25, 30 December 2013 (UTC)

Regardless of what the IDSA says, doctors are going to refer patients to ILADS trained doctors. ILADS guidance is specifically written as voluntary and doctors are only legally required to follow scientific evidence, not ILADS evidence. The prosecutions have ended because doctors were mostly able to demonstrate their use of scientific evidence. If Wikipedia thinks ILADS is still fringe, I can respect that. It is a reasonable answer.Bob the goodwin (talk) 12:25, 30 December 2013 (UTC)

The same attribution style I used was copied from the [Lyme Disease] article. The NEJM article is authored predominantly by the team of doctors that are on the IDSA guidelines committee and some from the neurology guidelines committee (they had overlapping members and overlapping release time). It is unambiguously aligned to the IDSA. I was using the same voice as is used on the [Lyme disease] article a couple of days ago that discusses the same article and groups. (clipped below)Bob the goodwin (talk) 12:25, 30 December 2013 (UTC)

"Major US medical authorities, including the Infectious Diseases Society of America, the American Academy of Neurology, and the National Institutes of Health, have stated there is no convincing evidence that Borrelia is involved in the various symptoms classed as chronic Lyme disease, and advise against long-term antibiotic treatment as ineffective and possibly harmful"Bob the goodwin (talk) 12:25, 30 December 2013 (UTC)

As it stands today all of Wikipedia on chronic Lyme does not reflect the best research, it represents the IDSA guidance. I am not saying that ILADS is right, I have serious doubts. But a reading of the published research shows an unambiguous presence of a parallel set of research. I have no interest in why this has happened, I only have an interest in getting RSMED into Wikipedia. If you tell me chronic Lyme is fringe, then of course it does not belong here. Otherwise I will learn to express the facts as a minority view that does not undermine the majority view. Beyond Lyme, there is very solid research in areas that also deal with chronic inflammations that are underrepresented in Wikipedia, and some important things missing from MTHFR genetic defects which patients are starting to hear about. But I have to walk before I can crawl.Bob the goodwin (talk) 12:25, 30 December 2013 (UTC)

The prosecution of the Lyme doctors is probably too inflammatory for this article now that I understand Wikipedia, but it is public record. 50 doctors were prosecuted for prescribing long term antibiotics to patients with a Lyme diagnosis, and the IDSA guideline authors were the primary witnesses at the trials. This is horrifying to patients who are told they have latent Lyme bacteria. The antitrust lawsuit was a very conspicuous story that everyone with Lyme will eventually see on the internet. I don't think either are relevant anymore, except that it bred distrust which still exists and is very toxic. I can get quotes from the European press, but again I think it is too inflammatory. I think the way the antitrust suit is portrayed on Lyme Disease now is fair. But it did happen, and it does effect anyone with the disease. Am I missing the purpose of Wikipedia? Bob the goodwin (talk) 12:25, 30 December 2013 (UTC)

The German document I said that I did not have the full information on, but you can also look at the Wikipedia.de translation and easily see that there is a different opinion on chronic Lyme, and they reference chronic Lyme research. I am not saying they are right. I observe a lot more research on chronic Lyme in Europe, and will look for the sources I had seen on different regulatory stances and prevalence of treatments if necessary.Bob the goodwin (talk) 12:25, 30 December 2013 (UTC)

I was asking simply if ILADS/chronic-Lyme is a significant minority opinion, or if it is fringe. If it is fringe I can't help expand important and medically necessary discussions like Herxheimer. There is terrific research on genetics and enzymes and supplements and inflammations that are non-controversial, but absent. I started with ILADS because I thought it was a safe place to start. And now I am typing in circles to find out how Wikipedia wants to represent this to patients.Bob the goodwin (talk) 12:25, 30 December 2013 (UTC)

I think that whether it's "fringe" or a "significant minority" is a bit of a red herring, to be honest. Either way, you need to put the beliefs of the organisation in context of the mainstream view, ensure that everything is properly sourced (for example, if something's "non-controversial", that shouldn't be a problem), and focus - in this article - on the organisation, rather than the condition. Anaxial (talk) 01:46, 1 January 2014 (UTC)

in the medical world, things can go from "fringe" to "standard of care" VERY quickly with the publication of a few quality clinical studies. Things can stay "fringe" and become even more fringey when study after study reports no support for the idea (and yet that does not stop a few "true believers"/quacks from promoting the idea for decades).

For this article, we need to stay focused on what the mainstream academic view of the organization is, what they have done that has had impact /coverage -positive or negative. But it is NOT here to proselytize their position.-- TRPoD aka The Red Pen of Doom 02:25, 1 January 2014 (UTC)

I am going to politely fold. I believe that everyone has worked with me in good faith, and I certainly hope the same is said in return. I do honestly believe that there are solid clinical studies: hundreds and hundreds of primary papers, more than a few secondary ones. I think if there was less skepticism I could have proven that the IDSAs decision early to consider post-lyme syndrome an autoimmune disease before they had proof was a serious strategic error and that triggered a very bad chain of events. The catch 22 is that the IDSA disputes all chronic Lyme evidence. If all a mainstream organization needs to do is dispute evidence, then it is impossible for anyone else to ever be a substantial minority opinion. Even with notable adherents. Let me know if you are ever curious. But I am done here.

I do respect that people listened to me, and I also have watched each of you work across Wikipedia while a lot of people are running around pushing agenda's at Wikipedia, so I am glad you each have great skepticism. I did not want to proselytize either, and know that to proselytize is a common ad-hominem. I have no idea if chronic Lyme exists, but I am almost certain that it is not cured with 30 days of antibiotics. I may have it, I may not. But the war is costing lives. 300,000 people get the disease each year, and only 10% are treated (CDC numbers) Some will live horrible lives. It was my intent to expose the truth of the Lyme wars, warts and all. But fringe groups at Wikipedia should not be given a platform, and the process that Wikipedia used to decide that Chronic Lyme is a fringe was an honest process. I respect that. And I thank the time that each of you spend to make Wikipedia be what it is.

I don't think I should rewrite the article as a fringe group article, which I think I could, because I do not want to tax anybody any further. Maybe my next attempt to help will be less controversial... :)

Thanks again for giving me a chance. I learned a LOT. Bob the goodwin (talk) 09:00, 1 January 2014 (UTC)

• Comment: I am only here for the RFC and have nothing to add to the main point of the discussion. I have not even read the article. Still, as there seems to be a move towards some degree of convergence or at least mutual toleration, I am not inclined to get involved. However, I am disturbed by the report of reversion of text without at least giving a reason, even if it is only "POV; check the pillars" or "rvv" or "see talk page" or something. Otherwise the reversion is discourteous (which I freely accept does not concern some sources, so maybe I am being too fastidious) and unconstructive or uninformative (which really should concern everyone). JonRichfield (talk) 09:02, 15 January 2014 (UTC)

Apologies for the lack of a comment on the talk page. I am new and had assumed that was the normal mode of operation because I have never gotten a comment on any reversions I have ever gotten to many of my edits, and I had actually reached out to jytog on number of occasions, and have never seen him comment on this page or ever reply to me. So I will be more cautious. It seems I was going to great efforts to bring resolution, and yet there seem to still be some remaining aggression.

My reversion had to do with his use of scare quotes on a term that is common in RSMED after already saying it was controversial.Bob the goodwin (talk) 19:54, 15 January 2014 (UTC)

RFC without a well-stated question

This RFC doesn't appear to have a well-stated question, and so may be difficult to summarize for closure. Since this RFC is close to 30 days and will be closed shortly as "no consensus", and I only saw it when notified by the bot, the two possibilities that I see would be to agree to extend it, or to restate it with a new RFC with a Support and an Oppose. The question appears to have to do with how to present the article about a society that has a view that is fringe science about a well-known disease. I can't provide a !vote for Support or Oppose without knowing what the exact question is, but there is obviously a question, or an RFC wouldn't have been posted. Robert McClenon (talk) 15:15, 19 January 2014 (UTC) I asked the question of whether a group with significant adherent could be a fringe group (per WP definition of significant minority). The notable adherents are a professor of medicine at Columbia, and another is the man who discovered the bacteria. I was told that as long as the CDC disagrees with this group they are fringe. So I stopped debating. I still am looking for any other evidence the group is fringe, (I mean I am actually trying to find real citable evidence - I cross referenced every anti-chronic-lyme article written by the IDSA) but that is not Wikipedia's issue if the rules are applied properly. Bob the goodwin (talk) 09:20, 22 January 2014 (UTC)

Agree that this RFA isn't clear. Regarding the question of fringe, I think the process that played out establishes the ILADS perspective as fringe (not based on best scientific evidence). To summarize that sequence of events: pressure from ILADS (PMID 19434013) forced the IDSA to sign (with the Attorney General of the US state of Connecticut) to an independent review by a separate panel of experts vetted by an ombudsman charged with ensuring panel members were appropriately balanced. That panel concluded that the 2006 IDSA guidelines were based on the best available evidence: PMID 20504239. Thus, the scientific consensus is that the IDSA guidelines were evidence-based, and the ILADS complaints were not. -- Scray (talk) 11:48, 22 January 2014 (UTC)

I am not pro-ILADS, or anti IDSA. I do not see how an anti-trust suit by Connecticut has anything to do with whether ILADS does evidenced based science. I spent days looking for evidence that ILADS was involved in that investigation and found none, although it is obvious that they approved of it. There is a war. War does not equal fringe. The ombudsman did not review the report, he reviewed whether anyone had a conflict of interest. I agree that IDSA decided that IDSA was right and ILADS was wrong, and there is no question of whether ILADS is a minority opinion. I believe you have your facts wrong in your example (please bring references), and you are not properly using Wikipedia definition of significant minority opinion. I have no problem with what you are deciding, and respect your opinion. But I think you should use facts. I have investigated this quite a bit, and have tried to figure out what is going on. I have had email correspondence with people at IDSA to see if I could get any sense of why a medical society of MD's and professors is lumped together with homeopathy and chiropractic. I can't find any evidence beyond the fact that IDSA disagrees with them. I have crossed referenced every paper written by the IDSA against this group and cannot substantiate the allegations. Again, do what you want with Wikipedia, one editor with references cannot overrule many editors with pre-existing opinions. But I really see no evidence of fringe, and it bothers me to see any medical dissent viewed as fringe, even when notable and important people are involved. Lyme disease has attracted scammers and psycho activists. But none of them are involved with ILADS or the science. I don't know which side is right, but I think its a coin toss looking at the high quality science coming out of both sides. Bob the goodwin (talk) 10:06, 23 January 2014 (UTC)

reference to Center for Science in the Public Interest

I've found several statements that say that CSPI supports ILADS or the existence of chronic lyme. I searched their website and they have issued no statement on Lyme. It appears that these statements arise from the appearance of Merrill Goozner in the film Under Our Skin. The film is available here and I found Goozner at ~38:00 in, where he is credited as "Michael Goozner, Director of Center for Science in the Public Interest", and where he criticizes the Bayh-Dole Act and doesn't mention Lyme at all. At 54 minutes in the IDSA guidelines are discussed and neither CSPI nor Goozner are referenced in that part. At about 1:10, the antitrust investigation by Blumenthal is discussed. At about 1:11 Goozner says that scientists on the IDSA guidelines committee have connections to drug companies and that this is outrageous, and IDSA should ban scientists with conflicts of interest from the guideline committees. That's all I found. At no point does he or the CSPI per se, say that "chronic lyme exists" or that the ILADS guidelines are correct. I found no other source where either he or the CSPI per se says that. So I deleted reference to CSPI from this article. I also note that Goozner was, for a while (not currently), director of a project within CSPI called "Integrity in Science" - he was never on the Board of Directors of CSPI and the description given to him in the movie is pretty misleading.Jytdog (talk) 11:05, 30 December 2013 (UTC)

Under our skin is full of huge errors. It says Dr. MacDonald is either dead or has severe Alzheimer's and yet he is still publishing papers. It also inaccurately portrays the neurological symptoms through editing in a few places. I have not gone through it in detail but think it is unreliable.Bob the goodwin (talk) 12:29, 30 December 2013 (UTC)

Nature of the Organization

Hello Yobol you reverted my edit immediately with no explanation. Please provide your justification.

A medical society is defined by Wikipedia as follows: "A health association is a professional organization for health professionals. They are often based on specialty and are usually national, often with subnational or regional affiliates. Health associations usually offer conferences and continuing education. They often serve in capacities similar to trade unions, and often take public policy stances on medical issues." ILADS meets all of these criteria.

An interest group is defined by Wikipedia as follows: "Advocacy groups (also known as pressure groups, lobby groups, campaign groups, interest groups, or special interest groups) use various forms of advocacy to influence public opinion and/or policy; they have played and continue to play an important part in the development of political and social systems." ILADS does not exist to influence public policy, they exist to educate doctors. It is completely inappropriate to classify ILADS as an interest group. SealCove20 (talk) 13:11, 6 September 2015 (UTC)

ILADS is a group that exists specifically to push the fringe theory that there is "chronic lyme" and that it needs to be treated with extended antibiotics. Put another way, it is a group that exists to advocate a specific position, rather than other medical groups which are grouped by location or specialty. It is therefore more of an advocacy group than a true neutral medical association (though it has elements of both). Yobol (talk) 13:31, 6 September 2015 (UTC)

Thank you for expressing your point of view. According to its public statements and information, ILADS exists to help doctors treat Lyme patients. They are set up for health professionals, not for the public. They are focused on one speciality, the treatment of Lyme and other tick-borne diseases. The exact treatment modalities they teach at the conferences vary widely, from antibiotic use to herbals to dietary changes. They are constantly trying to obtain (or promote) good scientific research on which antibiotics to use, when, and for how long, including whether to use them at all. They seek new effective treatments for patients with Lyme. They support the search fo good tests to improve diagnosis. The fact that the IDSA does not recognize chronic Lyme disease does not mean that no one else recognizes it, and that patients who have been failed by the IDSA Lyme treatment protocols are simply out of luck. These patients do have options, and ILADS is designed to prepare doctors to offer them the BEST options based on good science and information sharing about a very serious disease. It is quite misleading to our readers to characterize ILADS as an interest group. An interest group by definition promotes the interests of someone or something -- and ILADS is not promoting anything other than good patient care based on good science around a specific disease. ILADS is not working to influence public opinion or government policy; ILADS is working to educate doctors. They are a medical society. This page is supposed to be about the organization, not about the Lyme controversy, and this page should reflect what the organization is truly about.2605:A000:ED80:4200:90D7:F228:3536:CEBD (talk) 14:19, 6 September 2015 (UTC)

Let's go by what reliable sources say, not what our personal opinion is, because we can go on arguing for days without any effect. Independent reliable sources like this and this call it an "advocacy group", and we follow what reliable sources say. I will be adding the sources to the text shortly. Yobol (talk) 17:59, 6 September 2015 (UTC)

Thanks for that explanation. I will search for reliable sources that can back up what I think should be added.SealCove20 (talk) 20:19, 7 September 2015 (UTC)

ILADS Lyme Guidelines

I think we need to include the new ILADS Lyme guidelines reference on this page. Here is a quote about the new guidelines:

"The National Guidelines Clearinghouse (NGC) is an initiative of the Agency for Healthcare Research and Quality (AHRQ), under the umbrella of the U.S. Department of Health and Human Services. The NGC recently adopted the Institute of Medicine (IOM) standards for developing trustworthy guidelines, which define the highest level of excellence that a guideline can achieve. Guidelines posted on the NGC website must now satisfy these standards. Thus, the inclusion of ILADS’s peer reviewed guidelines on the NGC website demonstrates that they meet the level of excellence called for by the IOM.

ILADS is the first organization to issue guidelines on Lyme disease that were developed in accordance with the IOM standards. The document provides a detailed review of the pertinent medical literature and contains the first set recommendations for Lyme disease based on the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) process. This rigorous review format is also used by many other well-respected medical organizations including the World Health Organization (WHO), the American College of Physicians, and the National Institute for Health and Clinical Excellence (NICE) in the UK. ILADS guidelines are the only Lyme disease guidelines that included a patient from the Lyme community as an author or as a member of the guidelines development panel."

SealCove20 (talk) 18:26, 21 September 2015 (UTC)