Talk:Myalgic encephalomyelitis/chronic fatigue syndrome

Proposed addition to Graded Exercise Therapy

Suggesting that the following text and citations be appended to the "Graded exercise therapy" section:-

"Several published studies concur [xx][yy][zz]

[xx] VanNess, J et al (2006) Using Serial Cardiopulmonary Exercise Tests to Support a Diagnosis of Chronic Fatigue Syndrome, Medicine & Science in Sports & Exercise, vol. 38, no. 5.

[yy] Loma, P et al (1999) Demonstration of Delayed Recovery from Fatiguing Exercise in Chronic Fatigue Syndrome, European Journal of Neurology, vol. 6, pp. 63-69.

[zz] Nijs, J et al (2005) Chronic Fatigue Syndrome: Exercise Performance Related to Immune Dysfunction, Medicine and Science in Sports and Exercise.

Tyalgum (talk) 07:05, 15 August 2010 (UTC)

These sources highlight that normal exercise will physiologically exacerbate the symptoms of CFS and is a good reason to be cautious about GET. However, other Wikipedia editors may argue with you over the inclusion of these sources as a reason to avoid GET. Apart from possibly demanding a secondary source, the literature on GET argues that activity in GET is graded and adapted to avoid exacerbations and is not technically the same as normal exercise. However I do think such sources like the ones above need to be included somewhere in this article, evidence for post-exertion symptom exacerbation is crucially important and seems to be unique to CFS. I recently added the following to the GET section, which I think is very conservative and doesn't go far enough but is carefully worded in an attempt to avoid another edit war.

"To avoid detrimental effects on the immune system during GET, care must be taken to avoid the exacerbation of symptoms while catering the program to individual capabilities and the fluctuating nature of symptoms.[1] GET may be contraindicated in some patients due to amplification of pre-existing pathophysiological abnormalities.[2]"

[1] PMID 18382818 - Nijs & Paul & Wallman 2008 - "Chronic fatigue syndrome: an approach combining self-management with graded exercise to avoid exacerbations."

[2] PMID 19855350 - Twisk & Maes 2009 - "A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS."

_Tekaphor (TALK) 04:08, 16 August 2010 (UTC)

I noticed that SW reverted one of these additions stating with the comment "not really appropriate to use this reference for that statement". However, since this is a 2009 secondary MEDRS review and the sentence is a précis of one of the key points of its abstract, I am not sure why Sciencewatcher feels that a "not appropriate" comment merits complete removal. Given that the recent reviews and papers on GET seem to have raised such general flags, I feel that this reference is indeed appropriate. -- TerryE (talk) 15:34, 16 August 2010 (UTC)

This has been discussed before. This "review" is not a high quality review. Since it was published it only has 3 citations. The science doesn't back up the statement that Tekaphor put in regarding 'pathology' and GET. --sciencewatcher (talk) 16:37, 16 August 2010 (UTC)

I have to agree with Tek and Terry, this is one of the key points of the review and is certainly relevant and appropriate for the article. Therefore I think it should stay..StevieNic (talk) 17:18, 16 August 2010 (UTC)

But it fails WP:MEDRS. How can we include it in the article if it is not a reliable source? It actually just has one citation - the other two are just letters to the editor by one of the authors. This has been discussed here before - do we have to go through this again? We can post on the reliable sources noticeboard if you want. --sciencewatcher (talk) 17:54, 16 August 2010 (UTC)

I'm not going to get involved in an edit war over a source that does not rank well on MEDRS for the text in question (GET vs "amplification of pre-existing pathophysiological abnormalities"), I was just being bold. I wouldn't however back down over using it as a reliable source for a brief mention of patient surveys in the main article, but I'm glad to see that using it for this purpose has not been challenged this time. There is a legitimate concern among patients that GET has the potential to cause harm because they have observed an activity ceiling and any further activity yet alone normal exercise is known to be detrimental to many people with "CFS" (the ones who meet criteria for significant post-exertion symptom exacerbation anyway) and anyone who doesn't acknowledge that is grossly out of touch with reality. That patients in the real world commonly report adverse effects from GET is a verifiable fact that no one here presently seems to disagree with.

There is substantial evidence that post-exertional symptoms do correlate with pathophysiology, but it is claimed that GET does not exacerbate symptoms because it is more careful, although the systematic reviews also suggest that adverse effects are poorly reported. It is frustrating that there is such a massive gaping hole in the literature but I understand the onus is on me or someone who agrees to find a better source for the detrimental effects of GET in particular rather than just the detrimental effects of exercise and activity. Again, I'm glad that the Nijs & Paul & Wallman 2008 caveat on being careful not to exacerbate immune-mediated symptoms during GET has not being disputed. - Tekaphor (TALK) 02:49, 17 August 2010 (UTC)

Thanks, I'm fine with that. The Nijs+Paul ref is useful because a well designed GET therapy session should not be so vigorous as to make the symptoms worse. I understand your frustration about the lack of research on this. We have patients saying one thing and researchers another. Perhaps it is just some badly managed versions of GET that are too strenuous? Perhaps patients don't like the theories behind CBT/GET and they exaggerate the negative effects? Anyway, I think it is pretty much agreed that patients should not try to do too much - this fits in with pacing, energy envelope, etc. --sciencewatcher (talk) 13:55, 17 August 2010 (UTC)

Oh, and just one point about Nijs+Paul: they assume that the immune system causes the other CFS symptoms, which has not been proven. --sciencewatcher (talk) 13:59, 17 August 2010 (UTC)

Yes, poorly managed GET could explain some detrimental reports, respecting the patients' limitations should hypothetically minimise problems. But I think it goes beyond that, the wrong sort of patients are doing GET, who are not studied or are the non-improvers in research trials while adverse effects are poorly reported. As for patients "not liking theories behind CBT/GET", the theoretical basis for them is flawed and the research results are weak, so it's no surprise they're associated with controversy. Many patients experience substantial post-exertional symptoms, an activity ceiling, and are operating close to their capacity, all of which are relegated as deconditioning and the nocebo effect.

Regarding your comment and tweak, CFS research is such a mess that nearly everything has not been proven beyond a doubt, it is not a reason for removal, we wouldn't have an article otherwise. There are multiple recent reviews in PubMed which discuss the research supporting the possible association between CFS symptoms in general and the immune system, some of which are co-authored by Nijs. You may also want to read the correspondence between Nijs et al and a comment from Clark & White, where the former group justify their statement. That was simply a discussion among GET supporters over 2 years ago, more research has come out since then which further supports an inappropriate biological response to exercise including an immune component, we may not know yet the underlying cause but it is occurring in many patients. Some of the newer research is covered by the CFIDS Association of America's recent article series on "post-exertional malaise" (Part 1 / Part 2 / Part 3) and I know how much you love patient organisations. ;-) _Tekaphor (TALK) 03:53, 18 August 2010 (UTC)

I've just reverted some edits of deleted relevant material.. I cannot see how this can possibly fail WP:MEDRS, therefore I've readded it.StevieNic (talk) 08:56, 18 August 2010 (UTC)

It fails because it only has one citation. According to WP:RS: "The scholarly acceptance of a source can be verified by confirming that the source has entered mainstream academic discourse, for example by checking the scholarly citations it has received in citation indexes". It is really just an opinion piece and isn't suitable for quoting the medical info. --sciencewatcher (talk) 14:25, 18 August 2010 (UTC)

Regarding GET and the immune system: I am not disputing the fact that GET will influence the immune system (even in perfectly healthy people it will do that!) What I am disputing is the fact that it will make symptoms worse because of that change in the immune system. That does not fit with existing research which suggests that it is a system-wide issue and the HPA axis or similar systems are responsible for the symptoms - therefore the immune changes would simply be another symptom, not the 'cause'. We can't simply put the info in because it appears in a study. According to MEDRS we should only be using primary sources if there are no secondary sources and only if they are important. I agree we should be including the info that GET could make symptoms worse, but we shouldn't be putting in an unproven and unlikely theory about why GET makes symptoms worse. --sciencewatcher (talk) 14:35, 18 August 2010 (UTC)

I've just reverted your edit to reflect the text in the source used..I suggest you re-read it.StevieNic (talk) 16:51, 19 August 2010 (UTC)

Yes, I have read both sources. However the problem is that the sources are not reliable secondary sources - please read WP:MEDRS and WP:RS and address my concerns (above). --sciencewatcher (talk) 17:05, 19 August 2010 (UTC)

I am well aware of the two articles above. If, as you say, they are not reliable sources then why are we quoting from them in the first place?StevieNic (talk) 17:09, 19 August 2010 (UTC)

Also as my typing ability is limited, I refer you to the above entry by Tekaphor to read. There is nothing wrong with his entries and edits.StevieNic (talk) 17:17, 19 August 2010 (UTC)

Regarding the review: it only has one citation. I would prefer not to use it at all if possible. However if people want to use it to quote patient surveys I won't object. But it shouldn't be used to give medical info. Regarding the Nijs article: it is a reliable source, but it is a primary source so we need to be careful how it is used. It is saying that symptoms are caused by immune dysfunction, which is by no means proven and goes against more reliable sources. All we can say is that care must be taken to avoid making symptoms worse. --sciencewatcher (talk) 17:19, 19 August 2010 (UTC)

Claiming that immune changes (which you agree can occur) cannot contribute to symptoms, is illogical. Evidence keeps rolling in that a large proportion of ME/CFS patients have a biologically abnormal response to exercise, including immune changes. Regardless of the underlying cause, immune changes after exercise can plausibly contribute to symptoms even if not the sole contributor or the underlying cause of the condition itself. Why couldn't they??? The reasons you gave aren't convincing at all, akin to claiming that cytokines couldn't possibly contribute to malaise during influenza or emotional distress because they are only a "symptom" and not the "cause".

Nijs & Paul & Wallman, all who apparently support a pacing form of CBT/GET, state that "there is evidence that exercise can exacerbate symptoms in chronic fatigue syndrome, if too-vigorous exercise/activity promotes immune dysfunction, which in turn increases symptoms". Promote simply means "contribute to the progress or growth of", that's all they are saying, and where's the alleged evidence and sources which contradicts this possibility? The components involved are not mutually exclusive, the brain-immune link is somewhat bidirectional and interdependent. Not being "proven" beyond a doubt and not being consistent with your POV is no reason to completely omit it from the article.

On HPA-axis functional abnormalities, these aren't consistent or present in the majority of patients and appear to be relatively mild. Reviews on PubMed generally regard them as mostly an epiphenomenon that occurs later in the course of the illness and the function of the HPA-axis is not granted the special role of "puppet master" like you do. Even so, it's possible they contribute to some symptoms to some degree in some patients, but the presence of such abnormalities does not actually negate a role for the immune system in the exacerbation of symptoms, in fact it would probably encourage it. - Tekaphor (TALK) 04:08, 20 August 2010 (UTC)

Where on earth did I say they 'cannot' contribute to symptoms? Of course they can! All I was objecting to was the notion that all the symptoms are caused by the immune system, which is implied by the wording. As you know the immune system is thought to be even less central to the symptoms of CFS than the HPA axis, but there are doubts about both. All I am saying is that we don't know what system is important in causing symptoms, so we shouldn't be saying anything about the mechanism. --sciencewatcher (talk) 14:34, 20 August 2010 (UTC)

OK, I apologise if I misunderstood your previous statement: "What I am disputing is the fact that [GET's influence on the immune system] will make symptoms worse because of that change in the immune system." etc. I understand your objections. I don't know if the immune system is thought to be even less central to the symptoms of CFS than the HPA axis, but we don't know enough yet. I have saved a bunch of reviews and study abstracts on this issue but in practical terms it's going to take me quite a while to have a look at them properly and judge their appropriate weight according to MEDRS. - Tekaphor (TALK) 02:15, 21 August 2010 (UTC)

Do none of the reviews discuss the issue of GET possibly exacerbating symptoms? --sciencewatcher (talk) 02:21, 21 August 2010 (UTC)

Not really sure yet. - Tekaphor (TALK) 03:29, 24 August 2010 (UTC)

twisk and maes papers discuss exacerbation of symptoms when using GET as does numerous patient surveys, and NO twisk and maes DO NOT FAIL MEDRS. —Preceding unsigned comment added by 86.130.60.185 (talk) 19:12, 14 September 2010 (UTC)

I thought this at first, "how could this possibly fail WP:MEDRS "?. However, SW is correct in pointing out that it only has one citation, it has not yet entered the mainstream academic discourse..ref WP:RS: "The scholarly acceptance of a source can be verified by confirming that the source has entered mainstream academic discourse, for example by checking the scholarly citations it has received in citation indexes". I think there needs to be more citations and scholarly backing before we use the text and main points covered in this particular article.StevieNic (talk) 13:58, 15 September 2010 (UTC)

Yes, but what's the cutoff point for "scholarly acceptance"? I've noticed the biological research has been targeted based on a low number of citations according to "Google Scholar". So can editors therefore start removing sources for psychosocial speculations which fail this arbitrary threshold without triggering another edit war? - Tekaphor (TALK) 01:50, 16 September 2010 (UTC)

That's a good point. I have had a quick look and there does seem to be quite a few with only one citation. I have removed a couple of sources at present. I will go through and try to remove them all in time. StevieNic (talk) 08:38, 16 September 2010 (UTC)

How are you checking the citations? I just had to revert 2 of your reverts because you said '1 citation' and when I checked one had 80 and one over 100 citations! I did notice that for one of them, google scholar listed the article twice - once as a pdf with over 100 citations, and a second time with a link to the journal itself with only 2 citations - so you just need to be careful when checking. --sciencewatcher (talk) 15:44, 16 September 2010 (UTC)

Basically I'm clicking on the citation listed in the references section at the bottom of the article, then checking the number of citations listed on the right hand side of the pmid page. I take it I'm probably getting this wrong then..StevieNic (talk) 15:50, 16 September 2010 (UTC)

I was typing the article title into google scholar, and that returns very different results. Anyone have an explanation? --sciencewatcher (talk) 15:54, 16 September 2010 (UTC)

It's my mistake I believe, the figure quoted on the right hand side of the PMed page is the number of citations in the PubMed Central Database only, and doesn't take into consideration citations in other databases ie. rsmjournals.com, oxfordjournals.org etc, etc.. which is what Google Scholar does. I think this might explain it..?? Hopefully...StevieNic (talk) 16:43, 16 September 2010 (UTC)

Could be, although considering those databases are all included in pubmed searches it seems odd for them not to include them in the number of citations. There are a few articles comparing google scholar to pubmed (and others) and the conclusion seems to be that google scholar picks up more citations, but can sometimes overinflate the results. See for example here --sciencewatcher (talk) 17:08, 16 September 2010 (UTC)

I see what you mean. It all seems very confusing,,I think I shall leave things as they are at present.StevieNic (talk) 21:45, 16 September 2010 (UTC)

sciecewatcher seems to have invented his own rule over what can and cant go in the article, NO WHERE in the wiki rules does it says how many citations are the be all and end all of what gets included and neither is MEDRS the be all and end all of whats allowed, I have looked in the archive and its interesting to see that whenever twisk and maes gets raised or any paper that contradicts Sciencewatchers POV then they fight tooth and nail to block it, surely thats not on is it, can someone step in here please this is madness —Preceding unsigned comment added by 86.156.145.7 (talk) 22:01, 17 September 2010 (UTC)

No true replications yet of Lombardi et al 2009

Regarding this edit [1], where IP:132.185.240.120 uses the recent FDA/NIH paper to add the statement, "None of the follow up studies have attempted to fully replicate the Lombardi et al. study." This was reverted by StevieNic with the edit summary "it doesn't actually say that in this source".[2] The same edit was added to the XMRV article by IP:132.185.240.120 [3] but was then reverted by Arthur Rubin without any explanation in the edit summary.[4]

Yet the paper itself states: "However, in the study of Lombardi et al. (3) and studies reviewed subsequently by Silverman et al. (22) the evidence for XMRV infection in humans not only involved detection of viral nucleic acids using PCR, but also reported the detection of viral antigens, detection of anti-viral antibodies, the ability to culture the virus in a prostate cancer cell line, the detection of gamma retrovirus particles by electron microscopy, and transmission of infection to macaques. In sum, none of the four studies that have failed to confirm the PCR evidence reported by Lombardi et al. (3), nor our own study, has attempted to fully replicate that study."[5] So what's the problem exactly? Alter also describes elsewhere (I don't remember the source right now) the Lombardi study as more advanced than his own. People have been saying for several months that none of the negative followup studies were true replications, but it was rejected because there was allegedly no "reliable source" for this statement, and now a landmark paper from highly respected virologists that was published in PNAS supports this statement, yet it still can't go in the article?

_Tekaphor (TALK) 01:53, 27 August 2010 (UTC)

OK, I missed Arthur Rubin's explanation earlier on the XMRV talkpage.[6] I still don't see why it can't go into the article, it's important to note that the 4 negative "followup studies" which are used in the article to simply refute the original positive WPI study did not use all the same methods and avenues to detect XMRV. At most the wording may need changing, but to completely omit this pivotal point from the article is inappropriate and encourages the illusion that all these 4 negative studies have equal weight against Lombardi et al 2009. - Tekaphor (TALK) 04:15, 27 August 2010 (UTC)

I agree with tekaphor —Preceding unsigned comment added by 86.143.164.181 (talk) 20:00, 3 September 2010 (UTC)

Thanks, I hope this edit sufficed. - Tekaphor (TALK) 07:42, 8 September 2010 (UTC)

Dundee University study

New study in the news today "found abnormalities in the white blood cells of children with ME/CFS, suggesting they had been fighting off infection."91.109.131.149 (talk) 09:47, 7 September 2010 (UTC)

Also, the link to journal article: http://archpedi.ama-assn.org/cgi/content/short/164/9/817 - Conclusion from abstract: "Biomedical anomalies seen in adults with CFS/ME—increased oxidative stress and increased white blood cell apoptosis—can also be observed in children with clinically diagnosed CFS/ME compared with matched controls. Unlike in their adult counterparts, however, arterial stiffness remained within the reference range in these pediatric patients." - Tekaphor (TALK) 07:39, 8 September 2010 (UTC)

Now listed in PubMed as PMID 20819963 - Tekaphor (TALK) 01:37, 16 September 2010 (UTC)

Proposed addition to "Complementary and Alternative Treatments"

Two methods that are not listed but which are in use are Immunoprovocative Therapy and D-Ribose. Immunoprovocative Therapy as the Marshall Protocol has shown clinical efficacy in a phase 2 clinical trial:

From http://www.marshallprotocol.com/phase1.pdf The Phase II clinical trial conducted from 2002-2008 by the Autoimmunity Research Foundation has demonstrated applicability of this antibacterial therapy to a wide range of chronic Th1 immune illnesses [2]. Direct link to reference 2: http://AutoimmunityResearch.org/transcripts/ICA2008_Transcript_TomPerez.pdf

D-Ribose has been shown to be a palliative treatment to reduce the symptom severity of chronic fatigue syndrome and is being prescribed by some MDs. http://www.ncbi.nlm.nih.gov/pubmed/17109576 J Altern Complement Med. 2006 Nov;12(9):857-62. The use of D-ribose in chronic fatigue syndrome and fibromyalgia: a pilot study. Teitelbaum JE, Johnson C, St Cyr J.

Both of these treatments need to be added to the section.

First Marshall Protocol: the articles you quote above are not reliable sources, as they are self-published. Also, they are in no way even close to being 'clinical trials' - there are no controls for a start.

Second, D-ribose: again, this is an uncontrolled study. The results are in the range you would expect from the placebo effect in CFS. In order to determine if the treatment has any effect you would need to have a proper placebo-controlled trial. --sciencewatcher (talk) 14:07, 10 September 2010 (UTC)

Agreed on your Ribose comment. Regarding Marshall Protocol is it a requirement that all research be up to that standard? Clinical trials take upwards of 8 years to prove. I think a phase 2 clinical trial is noteworthy enough to include if it has a citation. If this is true then patients will have no information on the development of new treatments in progress and CFS has no effective treatments so anyone interested an in experimental approach would be out of luck. 24.211.144.163 (talk) 14:33, 10 September 2010 (UTC)

First of all, where does it mention the clinical trial? I don't see anything in the document about a clinical trial (although it's kind of hard to be sure because it seems to be a powerpoint or something and there is no search). Also, wikipedia isn't primarily a patient information store (although it hopefully is useful to patients - that is my primary motivation for editing). It is an encyclopedia, and everything needs to be properly referenced. All medical information needs to follow WP:MEDRS. The Marshall protocol is a very dubious treatment with pretty appalling science behind it - it reeks of quackery to me. So even if we did allow some non-WP:MEDRS medical info (and sometimes we do, depending on circumstances), I still wouldn't want to include the Marshall protocol! --sciencewatcher (talk) 15:34, 10 September 2010 (UTC)

I checked that reference and it wasn't correct. However I did find this article published on Pubmed regarding the treatment. Despite some questions I have about the treatment, I think the idea that bacterial infection may be involved in CFS and autoimmune disorders deserves mention. (Waterhouse JC. Reversing bacteria-induced vitamin D receptor dysfunction is key to autoimmune disease. Ann N Y Acad Sci. 2009 Sep;1173:757-65. PMID: 19758226.Abotnick (talk) 14:49, 12 September 2010 (UTC)

That ref doesn't mention CFS at all (even in the full-text). --sciencewatcher (talk) 22:38, 10 September 2010 (UTC)

This one does. "Our results reveal that in CFS, like other autoimmune diseases, different genetic features are related to age at CFS onset and symptoms." (Ortega-Hernandez OD. Autoantibodies, polymorphisms in the serotonin pathway, and human leukocyte antigen class II alleles in chronic fatigue syndrome: are they associated with age at onset and specific symptoms? Ann N Y Acad Sci. 2009 Sep;1173:589-99. Abotnick (talk) 06:14, 11 September 2010 (UTC)

You've lost me now. That seems to be talking about something completely different. And it concludes with "CFS, like other autoimmune diseases", which raises a red flag because CFS certainly hasn't been shown to be autoimmune. --sciencewatcher (talk) 14:52, 11 September 2010 (UTC)

This is a better reference. It's recent. "Certain neuroendocrine-immune abnormalities have also been described, and autoantibodies commonly described in some autoimmune diseases have been found in CFS patients as well. An increasing number of autoantibodies, mainly directed against other nuclear cell components, have been illustrated. Likewise, an association between some infectious agents, antibody production, and later CFS onset has been reported." (Ortega-Hernandez OD. Infection, vaccination, and autoantibodies in chronic fatigue syndrome, cause or coincidence? Ann N Y Acad Sci. 2009 Sep;1173:600-9.)Abotnick (talk) 14:50, 12 September 2010 (UTC)

It says "However, it is still unclear if CFS represents a kind of autoimmune process rather than a mixture of several common fea- tures overlapping.24 There is conflicting infor- mation about the role of autoantibodies, infec- tions, and vaccine in the pathogenesis of CFS." --sciencewatcher (talk) 21:04, 12 September 2010 (UTC)

I see. So the rationale for listing the medical treatments on the page is to reflect mainstream medicine's ineffective theories and treatments which happen to be popular only out of desperation and to give the impression to patients that their MDs have some kind of treatment to use but the theories of alternative groups with the same level of evidence (and more promising chances) are excluded. This conflicts with the NPOV. Given the evidence suggesting it could work it should be included. I protest this poor editorial judgement and request that this be escalated to a higher level editor for a determination. Abotnick (talk) 10:10, 13 September 2010 (UTC)

I never said anything about not including anything :)

Where does it mention a treatment anywhere? It's probably easier for you to just add whatever you want to add and we can just change/remove it afterwards if it fails wikipedia policies. I'm currently just baffled as to what you are actually suggesting.

As for just presenting 'ineffective theories and treatments', well that certainly would fail wikipedia policies. We mainly present the mainstream scientific opinion, which by definition consists of things that have been proven or have the most evidence of effectiveness (hence the reason by the CBT section is longer than any other section). If you think the balance should be changed, feel free to discuss it here. --sciencewatcher (talk) 14:16, 13 September 2010 (UTC)

I already made an addition and it was quickly deleted. I don't want that to happen again and waste my time. Mainly presenting mainstream whatever isn't NPOV. I will write some additional text if there is discussion before modification and if you are willing to be NPOV with comparable alternative treatments (vs. Pacing etc.) Abotnick (talk) 16:12, 13 September 2010 (UTC)

Not sure what you mean - we already have pacing in the article (it was me who added it). Also I looked through all your edits and I didn't see a single one in this article. Please point out exactly what edit was 'quickly deleted'. Thanks. --sciencewatcher (talk) 17:12, 13 September 2010 (UTC)

I couldn't find it either. I'll put something together when I can.Abotnick (talk) 13:42, 14 September 2010 (UTC)

Controversies

I just noticed that there is nothing in the Controversies section - it just links to the Controversies related to chronic fatigue syndrome article. Perhaps there should be a summary here, as it is such an important aspect of the article. --sciencewatcher (talk) 21:02, 16 September 2010 (UTC)

sounds like your trying to spin gossip and intrigue to me, dont see any point in this section unless its constructive and points out that patients need antiviral therapy or immune modulation or that graded exercise and CBT dont cure people, that is the controversy, but all that is blocked from this page for some reason —Preceding unsigned comment added by 86.148.133.147 (talk) 18:51, 19 September 2010 (UTC)

I've added a couple of lines to try and sum up the main controversies page.. I didn't get far but it's a start and better that an empty template..Please feel free to add, delete, tweak or whatever...StevieNic (talk) 11:17, 20 September 2010 (UTC)

Cultural references

Should this be merged back in? It's hardly a standalone article, it's more like "Passing references to CFS/ME in TV shows". If the material isn't wanted here then I'm going to nominate it for deletion. Fences&Windows 19:44, 25 August 2010 (UTC)

I personally don't think it should be merged into the main article, there isn't anything in there worth mentioning. If anything, I would recommend it for deletion.StevieNic (talk) 21:45, 25 August 2010 (UTC)

I agree. It seems a bit pointless at the moment. --sciencewatcher (talk) 21:49, 25 August 2010 (UTC)

While it's always nice to know that there's exposure out there, I have to agree with everyone else...it's not enough for an article of its own, and I don't really see any reason to cite TV show references in a medical article. Get rid of it. —RobinHood70 ^{(talk • contribs)} 20:41, 28 August 2010 (UTC)

+1 TerryE (talk) 20:11, 29 August 2010 (UTC)

Delete. Ward20 (talk) 07:46, 15 September 2010 (UTC)

An old episode of the Golden Girls? I think that's scraping the barrel somewhat... perhaps more significant mentions could appear in a section down the bottom of this article, but otherwise I'd say delete. bobrayner (talk) 08:21, 15 September 2010 (UTC)

User:Tatterfly deprodded the article and thinks it should be merged with the main article. Tatterfly posted on Talk:Cultural references to chronic fatigue syndrome. Ward20 (talk) 01:03, 16 September 2010 (UTC)

It has just been merged so I've deleted it entirely. I really can't see anything there that should be in a medical encyclopaedia article..StevieNic (talk) 21:47, 16 September 2010 (UTC)

Yesterday, I merged the section on "cultural references" that was previously found in its own article. It had been prodded, but I deprodded it. I feel that a deeper discussion is needed prior to the total purging of this information per Wikipedia:Content removal guidelines. The prodder said that a discussion had been held, but I looked at it, and I did not feel it was enough for a consensus. Had it been an AfD, there is no guarantee it would have been closed as delete. Tatterfly (talk) 20:11, 17 September 2010 (UTC)

We have 6 people all saying delete the entire thing (see above). How is that not enough?! You generally don't even see that much consensus for an AfD! --sciencewatcher (talk) 20:15, 17 September 2010 (UTC)

I make that 7 people all saying delete..and only one against, for me that is consensus enough. Therefore I shall delete it again..StevieNic (talk) 21:45, 17 September 2010 (UTC)

Tatterfly, you are clearly going against consensus. StevieNic, if any more reverting needs to be done, please allow somebody else to do it. Two editors reverting back and forth usually leads to a page being protected -- one editor who keeps reverting against numerous others gets blocked for violating 3RR if he keeps it up. Looie496 (talk) 21:52, 17 September 2010 (UTC)

Looie496, thanks, I will let someone else delete it next time. StevieNic (talk) 21:59, 17 September 2010 (UTC)

Now the Cultural References page is just blank. Can someone delete it? --sciencewatcher (talk) 14:57, 18 September 2010 (UTC)

The section was absolutely awful and merited deletion for WP:TRIVIA. Good riddance. JFW | T@lk 21:28, 18 September 2010 (UTC)

I've just added a proposed deletion tag to the page, so it will be automatically deleted in 7 days. --sciencewatcher (talk) 03:15, 19 September 2010 (UTC)

Just for everyone to know. It is not me versus everyone else. Someone actually reverted the Cultural References page following the merge, so at least 2 people are in favor of keeping this content. I am bringing up this matter at dispute resolution, where I am willing to accept the agreement made. You can find it here. Tatterfly (talk) 23:32, 19 September 2010 (UTC)

Nobody except you has argued for having the material here. I have reverted your re-addition. Continuing to re-add material that all other editors agree does not belong constitutes disruption. Please don't re-add it unless you can get agreement from other editors. Looie496 (talk) 01:55, 20 September 2010 (UTC)

Could I persuade Sciencewatcher (and anyone else) to use AFD rather than PROD after the first PROD is contested? I have little doubt that the content violates WP:TRIVIA several times over, and that it does not belong in an encyclopedia. Unless someone has made an academic study of cultural depictions of CFS/ME, this is unlikely to ever reach the inclusion horizon. JFW | T@lk 10:36, 20 September 2010 (UTC)

Uncle G has banged a few heads together, and I've nominated it for deletion. Stop squabbling. Fences&Windows 13:47, 20 September 2010 (UTC)

POV pushing?

justification for section header renaming, previously reverted

from WP:Talk: Section headings: Because threads are shared by multiple editors (regardless how many have posted so far), no one, including the original poster, "owns" a talk page discussion or its heading. It is generally acceptable to change headings when a better header is appropriate, e.g. one more descriptive of the content of the discussion or the issue discussed, less one-sided, more appropriate for accessibility reasons, etc. To avoid disputes it is best to discuss a heading change with the editor who started the thread, if possible, when a change is likely to be controversial. It can also sometimes be appropriate to merge entire sections under one heading (often preserving the later one as a subheading) if their discussions are redundant. In order to ensure links to the previous section heading (including automatically generated links in watchlists and histories) continue to work, one should use one of the following templates to anchor the old title: {{formerly}}, {{anchord}}, {{anchor}}. I hope this helps the editor who started this section understand why section header was renamed. -- Scray (talk) 21:02, 2 October 2010 (UTC)

I would like to complain that sciencewatcher keeps automatically undoing totally reasonable edits, someone removed the word "although" from a scentance to make it clearer and actually portray reality as laid down by the world health organisation that M.e is neurological. Sciencewatcher seems to try and underplay that FACT and keeps undoing it whenever anyone removes the weasel word of "although" becuase the current sentance implies that the neurological status is under question...last time I checked sciencewatcher doesnt get to write W.H.O policies....must we fight tooth and nail for EVERY SINGLE DAMN EDIT...someone needs to step in here and put an end to this bias on these pages. —Preceding unsigned comment added by 86.130.62.20 (talk) 15:58, 24 September 2010 (UTC)

scienwatcher has claimed on the edit history pages that the neurological status is under dispute which he has no status to claim that at all, the world health organisation has not claimed that either, lets stick to facts. Also when I put the 3 definitions into chronological order of date with the most recnt on top sciencewatcher undid it and claimed that he thinks chronological order is not logical....I know hard logic to follow...any encyclopedia in the world would put the most recent on top, but sciencewatcher seems to think he has carte blanche to decide what definition is most important, this is not how editors are supposed to behave, please can people help here, this is borderline meglomania —Preceding unsigned comment added by 86.130.62.20 (talk) 17:08, 24 September 2010 (UTC)

Please self revert, Mr IP, or you will be blocked and/or the page locked because of the three revert rule. - MrOllie (talk) 17:13, 24 September 2010 (UTC)

look at the accusations first, my edits were in total goodfaith, the same scenario happens as usually happens...sciencewatcher undoes it then gets his usual crew to come help out, look at my edits READ them and tell me WHY they are speedy deleted with NO PROOF —Preceding unsigned comment added by 86.130.62.20 (talk) 17:17, 24 September 2010 (UTC)

The criteria were originally presented according to WP:WEIGHT. Google scholar gives a clear indication of ranking of the use of the criteria:

The CDC definition is cited by 2207 on Google scholar as well as being stated as the most commonly used by several reviews.

The Oxford criteria is cited by 560 on Google scholar.

The 2003 Canadian Clinical working definition is cited by 148 on Google scholar. Ward20 (talk) 17:56, 24 September 2010 (UTC)

I may have been the one who added the word "although" in a series of related edits as a compromise to help resolve some dispute on the talkpage. Basically I reworked the following text: "The disease process in CFS displays a range of neurological, immunological, and endocrine system abnormalities. Although classified by the World Health Organization under Diseases of the nervous system,[3] the etiology (cause or origin) of CFS is currently unknown and there is no diagnostic laboratory test or biomarker.[2]" I also made the following argument which may be relevant here too: "It is obvious that CFS is not 'universally agreed' to be a neurological, but the questions are (1) is there a reliable source for that, (2) how relevant are those who disagree with WHO's current classification of ME/CFS? And besides a letter authored by two psychiatrists, how many other doctors and scientists have openly rejected the WHO's ICD and authority?" I have no problem whatsoever with removing the word "although". As for the priority of CFS definitions, I prefer the Canadian 2003 definition but the CDC definition is the most frequently used and is therefore given priority by Wikipedia (yes, it's a popularity contest). 86.130.62.20 also asks "must we fight tooth and nail for every single damn edit"? I've been around Wikipedia long enough to know that the answer is "much of the time, yes". - Tekaphor (TALK) 02:19, 25 September 2010 (UTC)

Honestly, I think the word "although" portrays the situation quite accurately in this instance. To date, we don't know what causes CFS, but the symptoms do seem to be primarily neurological. I have to assume that that's why the WHO classified it as it did. I would be surprised in the extreme if they intended in any way to portray it as a certainty. To remove the word "although", however, makes the sentence read much closer to it being a certainty, which is simply not justified in this case. I feel it is the IP who's pushing his POV here, not Sciencewatcher.

Also, the IP needs to understand that while Sciencewatcher leans more towards a pscyhological explanation (at least, I think that's a fair statement...no offense intended if it's not), every other editor who frequents this article tends more towards a biological explanation for CFS. Characterizing these pages as biased solely because of him—when there are so many of us who are, if anything, biased in the other direction—seems ludicrous to my mind. —RobinHood70 ^{(talk • contribs)} 23:46, 25 September 2010 (UTC)

it seems a lecture in english language is in order here, the word although is terribly misleading becuase it is a POV, it is suggesting that the classification is able to be over ruled by a mere wiki editor, this is an encyclopedia and requires FACTS, WHO classify it as neurological, therefore the sentance should read "it is classified as a neurological disorder by W.H.O"....the word although is just totally and uterly wrong, no matter what your person POV of the classification is, so therefore I agree with the IP editor —Preceding unsigned comment added by 86.143.166.35 (talk) 19:52, 29 September 2010 (UTC)

Since all the IP editors advocating for the removal of the word "although" are from the same ISP in the UK, this seems to be a highly-localized interpretation of the word. Personally, I see it as a "compare & contrast" wording. It's not dismissing the classification, just presenting it with appropriate weight and in the appropriate context. —RobinHood70 ^{(talk • contribs)} 21:16, 1 October 2010 (UTC)

let me give some background info about computers and the uk here, I guess you are aware that the UK is a very small place? ok so you got that right? so you should probably also know that British Telecom is probably the largest provider in the uk, so the fact that a few IP's are based in uk and on BT isnt exactly that unusual, plus the IP's are all different so STOP trying to slander IP's just cos they aint in a little clique of editors, and IP editor is JUST AS VALID as one of the other. so get over it and stop sidetracking the issue —Preceding unsigned comment added by 86.143.166.28 (talk) 11:54, 2 October 2010 (UTC)

Readers are NOT being served by this article

People who come to this article because they find themselves suffering from most of the symptoms listed therein generally find that the established medical community have been of no help whatsoever in even defining their disorder, much less treating it. As of now there is no consensus amongst these experts as to how to define, quantify, identify, or treat CFS. The facts are that patients who go to their general practitioners and then are eventually referred to various specialist rarely if ever get any relief from these symptoms. Instead they find themselves marginalized and their veracity questioned.

This seems to me to be reason enough to NOT allow people who seems to have polarizing opinions favoring the POV of the established medical community to control this article. The summary deletion of any mention of the theories of those who practice "alternative medicine" is pure arrogance. Face it, established medicine does *not* have the answer to this and don't seem to be close to providing a workable treatment. Again, why are those in that corner controlling this article?

I decided to look at the history of another item which used to be ridiculed by these same people, that of St John's Wort. This is a typical undo edit by these same types of person: http://en.wikipedia.org/w/index.php?title=St_John's_wort&diff=388203266&oldid=6648735

If you look at the history of any of the former "alternative treatments" that are now acknowledged by the medical community as valid, you will see the same pattern of abusive and bullying edits from people who hide their POV behind the shield of "lack of conclusive studies".

Wikipedia is allowing these assholes to diminish the value that a reader might potentially find here by their POV edits. If every kernel of information in wikipedia had to stand up to the ridiculous standards that these people selectively apply to this article, then both the amounts of words and usefulness of wikipedia as a resource would be reduced by a fact of 1000.

Letting raging assholes control this article is like allowing Bernard Madoff to handle your company's 401k. Zilla1126 (talk) 02:38, 5 October 2010 (UTC)

This fiery rhetoric isn't serving you at all, but I'll try to look past it. The question is, what's the alternative? Should statements go into the article just because somebody somewhere thinks they ought to be true? There has to be some criterion for what goes into the article, doesn't there? What do you think it should be? Looie496 (talk) 04:14, 5 October 2010 (UTC)

So are you saying we should put in lots of info about things that are obviously ridiculous quackery that don't work and say these can be used as treatments? Do you think that is helpful to patients? The whole point of the wikipedia policies is so that that doesn't happen! I had a quick look at the St John's Wort article and it seems pretty balanced with no current edit wars. That would seem to be a good example of what wikipedia is all about!

Also, if you look at the recent history, most of the 'raging ****s' (as you put it) appear to be on the patient side (I thought that was what you were talking about at first). But as Looie pointed out, that attitude isn't really helpful. --sciencewatcher (talk) 10:41, 5 October 2010 (UTC)

+1 to zilla, I entirely agree with the sentiments of zilla, someone had to said it and Zilla made some very excellent points, sciencewatcher please stop being so condescending to new editors, there are many of us who agree with people like zilla and are glad when they speak up, dont try and shoot them down