Hi Leopardtail,
how are you? Looks like u may not have been editing recently, but there’s a really important issue up for discussion- whether to change the title of the CFS article to “ME/CFS.” We could use the perspective of an informed editor like you…
“It has been proposed in this section that Chronic fatigue syndrome be renamed and moved to Myalgic encephalomyelitis/chronic fatigue syndrome.”
Talk:Chronic fatigue syndrome#Requested move 15 April 2023
Thanks for the shout-out. I listened to the audio for the article when it came out but not since, but that rings a bell about a 'tiny minority' of users. Thanks for working on editing the CFS page, it is extremely important and we don't have enough people working on it obviously. I currently don't have time for it as i have been fighting the IoM redefinition and am crashed. Best of luck with your treatment! JustinReilly (talk) 21:00, 25 May 2014 (UTC)[reply]
There appears to be a "tag-team" which means that they can silence any single contributor... may I suggest making a habit of visiting the page and undoing ONE of their changes daily. If we can get more people doing just that --then there is a chance of preventing their dominance of this page with a very bias take on this subject
It's not a "tag-team", it's most of the article editors, regardless of their beliefs about CFS. I would have reverted the edits myself as well. Wikipedia strongly discourages primary sources, all the more so on contentious articles. – RobinHood70talk23:29, 8 March 2014 (UTC)[reply]
I noticed that content supporting the psychological view of CFS had far less rigorous standards applied. I further noticed skewed selections from News Articles and imbalanced selection of sources. These do in fact violate WP rules on Neutral Point of View. Those rules indicate that the rule applied to sources may not be used to violate Neutral Point of View which this page does very strongly. If one looks through the user history a tag team does seem to be operating on this page. That tag team is routinely asking others to discuss before editing while failing to do so itself and aggressively reverting content without discussion.--Leopardtail (talk) 00:32, 9 March 2014 (UTC)[reply]
As Rob says, it's not a 'tag team', we're just following wikipedia rules. You simply CANNOT edit based on your beliefs. I thought that the science has shown that CFS patients had abnormal SPECT scans, but now I see that that is not the case. It looks like the reviews say the opposite. My opinions are irrelevant, however - we simply need to edit based on the sources.
Perusing Wyller and Cleare makes me see that we need to rewrite that section in the pathophysiology article. Now you can either keep disrupting the article like you've been doing (I'm talking mainly to Ken here) and waste everyone's time, or you can help out and actually improve the article and update the existing information we have on SPECT scans.
I'm not sure about both of you, but myself and Rob's interest in the article is to help fellow CFS patients by giving them good information about the science of CFS. Pushing crap science into the article just because it fits your beliefs isn't in the best interest of patients, and is just going to get you banned from wikipedia. --sciencewatcher (talk) 00:33, 9 March 2014 (UTC)[reply]
Using the term "crap science" for PubMed articles indicates a real bias. If there are 3 studies(witnesses!) for the same conclusion and there are none that disagree - then it enters the domain of likely truth by almost all religious criteria. Show me the studies that finds no results in a sample of 30 CFS patients that matches the Criteria (Canadian Criteria) and then we can get progress. There are none -- 9 separate studies confirm it. "Good information" implies filtering information based on some form of values -- that is very unscientific. "the best interest of patients" is when a MD tells a patient that they are going to be fine when he knows they have only a few hours left -- it is willful concealment of facts. It is unethical, I am a Christian and I strongly suspect you are not, as Jesus was clear "the truth shall set man free" which was said when he was in dispute with the Pharisees...
Nope, the reason I said 'crap science' is because you cherry picked primary studies that fit your beliefs and ignored the ones that didn't (and the reviews). So now who is 'willfully concealing facts'. As I said, yesterday I had your viewpoint on SPECT scans, but today (after actually reading the reviews), I see that I (and you) were wrong. The difference between us is that I am willing to update my viewpoint if the facts disagree with it. Whereas you seem to be stuck in your beliefs. Ever heard of cognitive dissonance? Regarding being a christian - what are you views on gay people? --sciencewatcher (talk) 01:31, 9 March 2014 (UTC)[reply]
The whole point here is that science is very far from clear. My interest is also (partly) to provide good information both for CFS patients but also that it be balanced and accessible to the public in general. I have at no point insisted that material but completely removed that does not fit a single viewpoint, rather than material be adapted to provide objectivity, or added that reflects alternative viewpoints. I take the view that this primary page provides a polarised view both of the science and the UK political debate that is profoundly harmful to patient interests. The comment made above re the intent of others is not at all helpful to the debate and I suggest it should be removed. Feel free to email me a copy of Wylling and Cleare and I will gladly contribute positively to both the discussion and the edit.
I would further suggest the unilateral edits by a small handful while there the edits of others are being reverted at with a distinct lack of consensus is equally helpful/unhelpful in all camps involved.
It precisely to produce a positive working relationship that I made my first post on discussing the formation of consensus, and my second post on the use of Role play to generate a common view of what's needed.--Leopardtail (talk) 01:33, 9 March 2014 (UTC)[reply]
See my comment in the CFS talk page for these reviews (if you have any trouble finding them, let me know). The reason for the reverts is the failure to follow wikipedia rules. You simply must follow WP:MEDRS where it is required (for medical claims). If you're unsure, feel free to discuss on the talk page. All of us are concerned with making the article as good and NPOV as possible. Regarding viewpoints: we basically follow the 'scientific viewpoint'. Here is how it works (as I understand it): let's say that 80% of high quality reviews conclude A, and 20% conclude B. In that case the article should discuss viewpoint A in 80% of the article, and viewpoint B in 20%. This is discussed in WP:WEIGHT. I think the weight is currently pretty accurate, but certainly it's always open to discussion. The reason that CBT and GET get prominent space in the article is because - whether you like it or not - they are the only treatments that have proven to be effective. --sciencewatcher (talk) 01:40, 9 March 2014 (UTC)[reply]
I am very happy for my talk page to be use for vigorous discussion of how we proceed forwards it allows us to thrash things out without overwhelming the talk page. I have tried to discipline myself in recent days to focussing on the content. Any messages attacking the conduct of users other than myself will be removed without notice. I want a civil debate here please.
Could we perhaps start by identifying our shared objectives and individual concerns and actually move this forwards?
I disagree about CBT -- because there are THREE treatment approaches that each have 50-80% effectiveness of full remission. Those results have been reported by different MDs. The problem appears to be no review or attempts to replicate them (likely because each is not POLITICALLY CORRECT to attempt to confirm): The Rickettsia Protocol originating in the Pasteur Institute (why: Long term rotating antibiotics is a No No), Hemex Protocol (why: low grade coagulation events is not a concern to hematologists, and MDs are terrified of heparin and warafin), and Fecal Transplants (MDs do not want to get into Shit -literally). What is being re-enforced is what almost killed my father "Ulcers is a psychological condition" that took 40 years from solid evidence (high success rate) until the first review articles. If your intent is to condemn every Cfs patient to the same malpractise -- you are doing excellent work. Remember that in the developed world, the 4th leading cause of death is medical mistakes. Personally, I find it morally abhorrent, almost as nice as newspapers describing how nice the Jewish resettlement camps were in the late 1930's. Lassesen (talk) 15:35, 9 March 2014 (UTC)[reply]
While there is great confidence in the science for some here with regards to CBT/GET, this is by no means a consensus here or in wider science. First this page treats ME and CFS as synonymous - THEY ARE NOT. It is not even widely agreed that ME is a subset of CFS though they are all too often used synonymously, that aspect of the introduction is quite correct. Ellen Goudsmit has givn her expert opinion on this issue in the BMJ along with the distinction between the effect of CBT/GET on patients. She expresses the expert view that for patient's meeting the stricter ME definitions (e.g. Canadian) this combination is more likely to do harm - I have witnessed such harm first hand hence for me this issue is far more than academic. She further expresses the view that for patients meeting the more lax CFS definitions the likelihood of benefit is raised. Surveys of patients show very roughly an even split between no effect, benefit seen, and harm caused.--91.84.93.126 (talk) 15:50, 9 March 2014 (UTC)[reply]
Hi Leopardtail. Just FYI, interspersing answers in someone else's comments isn't very commonly done on Wikipedia. While it does make it clear what you're responding to, it also makes it difficult to read the conversation as it actually progressed, and in many cases, causes a "diff" (difference between revisions) to fail, making it nearly impossible to figure out what you've changed. Interspersed responses are used on rare occasions, usually for a small aside in the context of a larger discussion, or when there are clear delineations of the topic already (like responding to someone else's comments on voting pages where the initial vote is the delineator), but that's about it. Generally speaking, it's preferable to respond as if you were responding to a letter: quote a portion of the original, cite the person's name, or mention the specific subject that you're responding to as part of your response. – RobinHood70talk22:28, 7 March 2014 (UTC)[reply]
Robin, thanks for pointing this out. I had realised it when going back through the discussions though I was unaware of the convention. I am more accustomed to less controversial topics where editors 'just get on with it'. --Leopardtail (talk) 23:45, 8 March 2014 (UTC)[reply]
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