Talk:Chronic fatigue syndrome

From Wikipedia, the free encyclopedia
Jump to: navigation, search


Text[edit]

This was added "concluded that ME/CFS is a biologically based illness" but the source actually says "The cause or causes of ME/CFS remain unknown"[1] But also says "is a biologically based illness and proposed a new case definition and name (systemic exertion intolerance)" so will readd. Doc James (talk · contribs · email) 18:17, 26 September 2017 (UTC)

@Doc James: In various places, why did you revert to older versions of text that cite CDC website as of 2011 or 2012? CDC launched an updated website for ME/CFS in July 2017. UsernameSasha (talk) 18:48, 26 September 2017 (UTC)UsernameSasha
We should paraphrase rather than quote large blocks of text. Doc James (talk · contribs · email) 18:55, 26 September 2017 (UTC)
Have updated those well paraphrasing[2] Doc James (talk · contribs · email) 19:04, 26 September 2017 (UTC)

@Doc James: OK, I see you have now made some additional interim edits that addressed at least some of the inaccuracies in the older versions of text citing to CDC (e.g., CDC's current website does not identify depression as a symptom). Will take a closer look at your edits.UsernameSasha (talk) 19:12, 26 September 2017 (UTC)

Yes looking more closely much of it was good and I have added it back. Apologies. Doc James (talk · contribs · email) 19:15, 26 September 2017 (UTC)

There were two substantial additions by UsernameSasha (talk · contribs) [3] and [4] that were reverted by L3X1 and Doc James. Neither edit summary explains what's was wrong with the additions. Could you please explain? Clayoquot (talk | contribs) 07:26, 28 September 2017 (UTC)

As mentioned above the source summarizes things by saying the cause is unknown. I am not sure a workshop represents an official position of the NIH. Also we should be summarizing not using large quotes.
The bit on comparing how much money is spend on different diseases is primary research. The sources are not making that comparison. Doc James (talk · contribs · email) 16:05, 28 September 2017 (UTC)
Thanks Doc James. There is a significant point of view that research on ME/CFS is underfunded. The part about the House Committee being "concerned that the level of funding is still very low considering the burden of disease" is one instance of this point of view. What is wrong with including that? W.r.t. comparisons, to satisfy WP:SYNTH, there needs to be a reliable source in which a comparison is made. Perhaps Sasha could point to such a source. Clayoquot (talk | contribs) 21:12, 28 September 2017 (UTC)
My concern is that the source will it gives numbers does not make the comparison.[5] Not sure if there was another ref? Doc James (talk · contribs · email) 06:10, 29 September 2017 (UTC)
The comparison is made by the Solve ME/CFS Initiative advocacy group here. Would that suffice to demonstrate that the comparison is not original research? Clayoquot (talk | contribs) 05:50, 3 October 2017 (UTC)
We specifically try to avoid those sorts of sources. Doc James (talk · contribs · email) 05:00, 4 October 2017 (UTC)
Doc James, I thought I had referenced a combo of appropriate sources to support the per patient funding comparisons, but maybe that was not clear by my placement of footnotes. By definition, it is not "primary research" to synthesize existing data on aggregate funding for a disease and figures on disease prevalence, in order to calculate a per patient funding estimate. The per patient funding comparisons are just a simple mathematical calculation comparing (1) aggregate funding amounts for specific diseases (ME/CFS, MS and HIV/AIDS), all taken from the same NIH report that sets forth a tabular comparison of such amounts by disease [6] to (2) reputable estimates on prevalence of such diseases. To give another example, if one was given the data that a box of 64 Crayola brand crayons cost $4.49, and a box of 48 off-brand crayons cost a buck at the dollar store, it would not be primary research to calculate cost/unit comparisons. If the footnoting or presentation of the data relating to these comparisons needs more clarity, I would appreciate additional guidance. Thanks! UsernameSasha (talk) 13:06, 15 October 2017 (UTC)
You are correct that doing arithmetic to calculate per-patient funding is not primary research. However, usage of those figures to support a point of view is primary research unless someone else has made that argument first in a reliable source. I did some searching for sources on whether these figures have been used to argue for more research spending, and could not find a source other than the one above that Doc James rejected. I know that advocates for ME/CFS research do make this argument, and if we could source it appropriately I think it would be good to include. If not, we could and should include something along the lines of "The amount of funding allocated to CFS research in 2017 is X in the United States and Y in other countries. Patient advocates and some researchers believe research is significantly underfunded." It's easy to find sources for that. Clayoquot (talk | contribs) 23:08, 16 October 2017 (UTC)
Have you cheked the CDC or NIH websites? There might be some press releases or info on their websites. --sciencewatcher (talk) 01:02, 17 October 2017 (UTC)
I think mainstream news sources would also be fine, as we're talking about politics not biomedical information. Clayoquot (talk | contribs) 18:28, 17 October 2017 (UTC)

ICD-10 code[edit]

I've just gone to add the ICD-10 code to this article, when I saw that it was already there (along with ICD-9-CM codes). However, the parameters are set to iCD instead of ICD. Couldn't see why this might have been done on the last 500 revisions; but thought I'd best check as it seems deliberate? Little pob (talk) 19:56, 29 September 2017 (UTC)

Should this page follow example of "The Lightning Process" Page and reference research with out WP:MEDRS sources?[edit]

I propose this page follows the example of The_Lightning_Process page and no longer require the use of sources meeting WP:MEDRS requirements. Following the example of The_Lightning_Process Press releases, Blogs and Original research papers should be permitted as sources on this page.C7762 (talk) 14:15, 5 October 2017 (UTC)

As discussed on the LP page, the only reason we are doing that is because nothing else is available, and we've put a lot of caveats in. This is how it works in other articles, like the one on liberation therapy/CCSVI, and it doesn't actually fail MEDRS. I'd suggest discussing this on the LP page, where the discussion belongs. --sciencewatcher (talk) 14:42, 5 October 2017 (UTC)

I am simply proposing we follow the example set by the The_Lightning_Process page. Surely the the same logic can be applied to this page: If MEDRS sources are not available we can use whatever is available such as press releases or blogs. As you said sciencewatcher the same logic is applied to other pages such as liberation therapy/CCSVI, why not here? C7762 (talk) 15:44, 5 October 2017 (UTC)

For CFS we do already have many high quality reviews. For CCSVI and LP we don't. We did use an exception here for XMRV, where we included it with just one single study due to its importance, as I'm sure you already know (if not, check the page history). Is there any important treatment for CFS that has just a single trial that you're thinking of including? The only other one I can think of is rituxamib, but we do already include it here on the treatment page. So I'm a bit baffled as to what you're actually proposing. --sciencewatcher (talk) 16:12, 5 October 2017 (UTC)
We use the best avaliable sources. I have trimmed a number of things at Lightning Process.
We sometimes bend things a bit in the research section for primary sources. Doc James (talk · contribs · email) 18:20, 5 October 2017 (UTC)

Thanks for the clarification on MEDRS. C7762 (talk) 11:09, 11 October 2017 (UTC)

Risk factors[edit]

Aspro, can you point out where pmid 12562565 says that physical attributions "do not seem a risk factor for the development of CFS"? The source says " it has been suggested that somatic attributions may be a risk factor for the development of chronic fatigue syndrome " which is almost the opposite of your edit. --sciencewatcher (talk) 19:18, 6 October 2017 (UTC)

Yup and the other bit of that sentence is supported by "Patients' perceptions, attributions, and coping skills, however, may help perpetuate the illness." Doc James (talk · contribs · email) 22:52, 6 October 2017 (UTC)
This was published in 2003 when lacking a good psychological explanations, psychiatric explanations were all the rage. Believe it or not, a few psychiatrists were suggesting people where sick because they thought that they where sick. A decade and a half later, one has to question what value this ref gives? Whether biblical Jesus existed or not, it was well understood that a lame man, could at times roll up his bed and walk ( akin to placebo when delivered by the power of the word), But if his lameness was do to say polio, then all the scriptures in the bible would not make him whole again. There are also some US faith healers that claim, that at their meetings they have brought about miraculous cures (by the power of the word) – but independent follows ups have never been able to support those claims. To make more clear. Wikipedia:What_Wikipedia_is_not#Wikipedia_is_not_a_paper_encyclopediaWP is not a paper encyclopedia and so can be kept up to date with current wisdom. A 14 year old and discredited line of hypotheses ( read the research done since) and has no place on 2017 WP. No more than the hypothesis for bad air (malaria. Italian, contraction of mala aria or bad air ). Nor that all peptic ulcers (as psychiatrist claimed) were caused by stress until Barry Marshall unequivocally demonstrated otherwise. What is of value to a patient is effective treatment, rather than ineffective hyperbole. This is the essence of why doctors go through years of training in order that the can perform in the best way that they know how. In the late 1960's early1970's, what with man landing on the Moon, many editors of this generation after me, are too believing in what is only too obvious to them. Yet , these hypothesis's have not place here anymore. This ref has been linked to in the article 9 times which in 2017 is nine times too many. Aspro (talk) 14:55, 15 October 2017 (UTC)

Removal of text[edit]

We had a RfC here about this text "Evidence suggests that cognitive behavioral therapy and a gradual increase in activity suited to individual capacity can be beneficial in some cases.[1][2] In a systematic review of exercise therapy, no evidence of serious adverse effects was found; however data was insufficient to form a conclusion.[2]"

Despite this User:Broookss continues to remove it which is getting disruptive. Doc James (talk · contribs · email) 05:41, 15 October 2017 (UTC)

This information is out of date. The RfC is from Jan 8, 2017 which predates the removal of GET and CBT from the CDC website and predates the special issue of the PACE trial from the Journal of Health Psychology. [3] This text is not consistent with the current science, which is that GET and CBT are harmful to ME/CFS patients. [4] [5] — Preceding unsigned comment added by Broookss (talkcontribs)
We are not using NPR and Statnews as a source. Please read WP:MEDRS Doc James (talk · contribs · email) 08:57, 17 October 2017 (UTC)
How about the Journal of Health Psychology: "Cognitive behavioural therapy may bring about changes in self-reported fatigue for some patients in the short term, however there is a lack of evidence for long-term benefit or for improving physical function and cognitive behavioural therapy may cause distress if inappropriately prescribed." and Socialmedicinsk tidskrift: "Surveys suggest that the efficacy of CBT is no better than placebo and that GET is harmful. Therefore, cognitive behavioral therapy and graded exercise therapy for ME/CFS are not evidence based.". Gaia Octavia Agrippa Talk 18:53, 17 October 2017 (UTC)
Broookss's makes a good point about the the CDC website being updated. Currently national treatment guidelines for the U.S. (CDC) and the UK (NHS) are quite different. We should mention that there are varying sets of treatment recommendations. And given that the CDC does not mention CBT or GED in its treatment guidelines, I don't think they belong in the infobox. I would rather leave the Treatment parameters of the Infobox blank. To put the CDC's omission of CBT and GED into perspective, their page mentions even acupuncture as being possibly helpful, for heaven's sake. We might want to stop and ask ourselves if Wikipedia should recommend treatments that the CDC considers less recommendation-worthy than acupuncture. Clayoquot (talk | contribs) 19:48, 17 October 2017 (UTC)
Right now the info for clinicians page just says "new info coming end 2017" so I don't think we can conclude much yet. There is a quote from the CDC here saying why they removed that info. They do still support exercise, but many doctors incorrectly interpreted it as "go to the gym", so it sounds like they're just in the process of rewriting it so that it has appropriate cautions. --sciencewatcher (talk) 22:56, 17 October 2017 (UTC)
The fact that page X is due to be updated doesn't mean we can't conclude much yet from page Y. If the CDC doesn't want people to conclude things from reading a page, they don't publish the page at all. That article is interesting though in that it says that the NHS guidelines are going to be reassessed, which should lead us towards giving the NHS guidelines less weight. Clayoquot (talk | contribs) 05:45, 18 October 2017 (UTC)
This discussion is why I edited[7] the lead section to be a general description, and that there are various beneficial symptomatic treatments that can be used as management strategies. CBT and exercise therapy are part of these treatment strategies for symptoms. The reviews state the data for CBT and GET therapies show no benefit for many ME/CFS symptoms. Another reason to change the lead is that housebound or bed bound persons with ME/CFS are not included in CBT or GET studies so benefits or harms in this group are unknown. As I recall, 25% of persons with ME/CFS are housebound or bed bound sometime during their illness. Exposing this group to CBT or GET is reckless. Leave Specific treatment information in the treatment section so complexities and controversies can be better explained there. The lead, the way it presently exists, does not adequately describe there are many supportive symptomatic treatments available for ME/CFS. Ward20 (talk) 01:00, 18 October 2017 (UTC)

We state "Evidence suggests that cognitive behavioral therapy and a gradual increase in activity suited to individual capacity can be beneficial in some cases"

This is based on this 2015 review in the Annals of Internal Medicine[8]. Annals of Internal Medicine has an impact factor of 17.2. Ref says "Counseling therapies and graded exercise therapy compared with no treatment, relaxation, or support improved fatigue, function, global improvement, and work impairment in some trials; counseling therapies also improved quality of life (low to moderate strength of evidence)."

and

This 2016 review by Cochrane [9]. Cochrane has an impact factor of 6.6. It says "Patients with CFS may generally benefit and feel less fatigued following exercise therapy, and no evidence suggests that exercise therapy may worsen outcomes."

"Journal of Health Psychology" has an impact factor of 1.8.

Doc James (talk · contribs · email) 09:39, 18 October 2017 (UTC)

So what does the CDC currently recommend:
a) "Light exercise and stretching earlier in the day, at least four hours before bedtime, might improve sleep."
b) "Talking with a therapist to help find strategies to cope with the illness and its impact on daily life and relationships."
c) "Avoiding ‘push-and-crash’ cycles through carefully managing activity."
None of those statements contradicts the use of either CBT or GET. We have some who appear to be attempting to read more into what the CDC wrote than what is actually their. Doc James (talk · contribs · email) 09:51, 18 October 2017 (UTC)

Classification of ME/CFS as a disease[edit]

The current version of the article lists ME/CFS as a "medical condition." This is not consistent with the science going back over 40 years. While there are many components to CFS, immune, neurological, and endocrine, ME/CFS is a neuroimmune disease and is officially classified as such. [6] ME/CFS has had this classification since 1969. [7] [8] — Preceding unsigned comment added by Broookss (talkcontribs)

This is an editorial [10] and thus not really suitable. Doc James (talk · contribs · email) 06:32, 16 October 2017 (UTC)

Canvassing[edit]

We appear to have a patient advocacy group trying to change the page to their liking with comments including "Perhaps having a team would help." on reddit. Doc James (talk · contribs · email) 09:47, 18 October 2017 (UTC)

  1. ^ Cite error: The named reference Smith2015 was invoked but never defined (see the help page).
  2. ^ a b Cite error: The named reference Lil2016 was invoked but never defined (see the help page).
  3. ^ http://journals.sagepub.com/toc/hpqa/22/9
  4. ^ http://www.npr.org/sections/health-shots/2017/10/02/554369327/for-people-with-chronic-fatigue-syndrome-more-exercise-isnt-better
  5. ^ https://www.statnews.com/2017/09/25/chronic-fatigue-syndrome-cdc/
  6. ^ https://www.ncbi.nlm.nih.gov/pubmed/23480562
  7. ^ International Classification of Diseases. I. World Health Organization. 1969. pp. 158, (vol 2, pp. 173)
  8. ^ http://www.name-us.org/DefintionsPages/DefinitionsArticles/Hoopersdescription.pdf