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Misinformation in CFS Wikipedia article

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
The current CEO of wikipedia is keen on getting underrepresented views up on the site (at least she says) so at some point we need to contact her to plead our case.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
"Although classified by the World Health Organization under Diseases of the nervous system, the etiology (cause or origin) of CFS is unknown, and multiple psychological and physiological factors may contribute to the development and maintenance of symptoms. There is no diagnostic laboratory test or biomarker for CFS."

This is in the first paragraph of the Wikipedia article found by using the search words "Chronic Fatigue Syndrome." I don't know about you, but I really take issue with "psychological factors may contribute to the development.....yada yada."

Does anybody know how we can get this taken out? It's inaccurate at best and serves to perpetuate the myth that somehow this is our fault at worst.

In addition, it seems that a lot of the other information is out of date, including too-favorable reviews of CBT and GET.

I suggested an edit to take out the offending parts of this sentence and any other cites to Oxford definition "CFS." I was met with total resistance by people claiming Oxford definition is totally valid. This sentence was cited to a wessely book on "CFS" from i believe 1998.

I do agree getting this sentence out is job #1 on wikipedia.

here is the 'justification' for including this Wessely cite:
The unfortunate fact is that there is as yet no proven cause of CFS and there are no consensus biomarkers of the condition(s) currently known by this name. There are many proposed causes, and many proposed biomarkers, from circulating blood volume to immune cell reactivities, but nothing close to consensus has emerged. There is a perceived divide between those who feel CFS is a purely "mental" disorder and those who feel it is a purely "physical" discorder. In my view, Wessely and colleagues straddle this divide in a reflection of the uncertainties and a desire not to rule out potentially fruitful avenues of research. That is, their multi-faceted approach and unwillingness to reject theories out-of-hand seems to give a good overview of the state of knowledge today; it's why I added their work as a citation. Keepcalmandcarryon (talk) 16:23, 29 April 2011 (UTC)

Pls help out and go to this page to join that discussion:
http://en.wikipedia.org/wiki/Talk:Chronic_fatigue_syndrome/Archive_15

scroll down to (near bottom of page):
"Multiple Psychological and Physiological Factors may Contribute" to CFS?
 
Messages
86
Location
northeast
ALL:

I actually think this is VERY important. I am 30, and maybe under the average age of ME/CFS/FMS folks -- So I'd say my age Cohort, and certainly younger (twenties etc) DEFINITELY check Wikepedia-- sometimes first! I had never read the page however on "CFS". IT IS TRAGIC! And so many of their arguments are purely and simply outdated. This reminds me of their page on "the theory of global warming" not long ago. Tragically slow to be updated to scientific consensus.

I do not know the history of work on these CFS pages (Bless all of you who have been at it in the past! Seriously.)- But I do feel a flurry of things happening in the last few years may help.
I surely do not have much energy, but if there is a "team" working on this, maybe I can contribute a little bit of time. (I have a Masters in the sciences from one of the Ivies--not in medicine, but I certainly know how to research in the sciences...) Maybe, especially this Spring I could help take this on.

ALEX--- I have not "met" you but have seen some of your posts. Are you a scientist as well? In any case, if you're thinking of renewed writing of an article, I think that would be AMAZING! :thumbsup: And so important for the next generation. I know even friends finishing up medschool check wikipedia sometimes just to get a sense of "what people think"-- So, yeah, I DO think it's important, and worth the effort, if if if (!) some folks can find energy/time.

Take care all,
Htree

P.S. I wonder if Komaroff/Klimas/Montoya/Lerner/Peterson etc would be willing to send along a compilation of research articles (their literature reviews--just the titles). They must have somewhere a compilation for their research purposes, no? Komaroff is famous for being the Harvard guy saying CFS is not psych, that's old and dead and unproven theory, it's clearly physiological. They must have a list of references (including their own work). Can someone ask perhaps at an appointment? this would be useful as well to have on-hand to give to family, friends, colleagues etc who may have outdated notions... Yes such an up-to-date literature review of physiological- focused references would be most useful!
 

leela

Senior Member
Messages
3,290
And why does ME redirect to CFS on wikipedia? Isn't ME classified as a neurological disease by the WHO?
WHat's up with that?
 
Messages
15,786
The Dutch page for CFS (Chronischevermoeidheidssyndroom) is quite good. It primarily talks of CFS as a physical disease, and counters the CBT and GET theories with studies from Belgium and elsewhere showing they do more harm than good.

Maybe those sources could be used in the English CFS page, if they aren't already.

# ? RIZIV, "Referentiecentra voor het Chronisch vermoeidheidssyndroom (CVS), evaluatierapport 2002-2004"
# ? B. van Houdenhove, "What is the aim of cognitive behaviour therapy in patients with chronic fatigue syndrome?", Journal of Psychotherapy and Psychosomatics, 2006;75(6):396-7.
# ? O'Dowd H., Gladwell P., Rogers C. A., Hollinghurst S., Gregory A. (2006) Cognitive behavioural therapy in chronic fatigue syndrome: a randomised controlled trial of an outpatient group programme. Health Technol Assess. 2006 Oct;10(37):iii-iv, ix-x, 1-121.
# ? 2005 Song, S., Jason, L. A., "A population based study of CFS experienced in differing patient groups. An effort to replicate Vercoulen et al.'s model of CFS", Journal of Mental Health, 14, 3, 277-289
 

toddm1960

Senior Member
Messages
155
Location
Rochester, New York
I can't believe people use wiki for information?!?! If you think this is the only totaly false information there I have a bridge to sell you. If you site wiki as a source for any information on a reseach paper you'll be laughed out onto the street. Stop getting on the site and giving them any kind of traffic, IT'S A HUGE JOKE FROM TOP TO BOTTOM.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
I can't believe people use wiki for information?!?! If you think this is the only totaly false information there I have a bridge to sell you. If you site wiki as a source for any information on a reseach paper you'll be laughed out onto the street. Stop getting on the site and giving them any kind of traffic, IT'S A HUGE JOKE FROM TOP TO BOTTOM.

1) Only a genuine CRETIN would use Wiki pages themselves on a research paper, so your point is...moot?
Though, hey, there's a lot of bloody idiots with PHds, lol :p

2) However, WIki has been shown to be a better and more accurate source of information, in general, than ANY other source, such as Encyclopedia Britannica
WIki, like it or not is the best starting point for any general investigation of a topic.
Specific and detailed though, is another matter entirely!

and anyone who does not question or try to validate vital pillars of their bailiwick *every day, every time they can, every time new info comes out* is a damn fool, anyway!

The huge silent caveat under all science: "These are the facts as best we know them, TODAY"
understanding that, is the difference between being an honest researcher, or a bloody "Weasel" ;)


anyway, long been suspicion the wiki pages on ME/Wessely has been edited by pro Wessly folks, and when you realize it's all about public perception, PR, spin, money, power...and understand how the scum in the Tobacco industry behaved and how oil/coal companies have behaved on Global Warming...
ie, they use hacks, pundits and zealots to push their agenda and swamp facts with propaganda.
Worked well for Goebbels, it works well for 'em today.
 

Sean

Senior Member
Messages
7,378
I can't believe people use wiki for information?!?!

Got news for you, buddy. The WP article is undoubtedly among the most influential sources for the general public's understanding of our health issues.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Got news for you, buddy. The WP article is undoubtedly among the most influential sources for the general public's understanding of our health issues.

Exactly
Those who control the "truth", control the world.
Hence our nemesis, Wessely, mechanisms for PR by Big Business like the Science Media Centre, and making sure the public never see the damn awful bits of reality, manipulation, evil, robbery and mass murder around them, be it ME or wars over lies.
So, WIki gets the "official" view and things get "put in certain tones" to make it seem like the "other views are covered" but they are NOT, they are sidelined, smeared or made to look like only a "fool would would believe them": classic PR tactics.

Sigh :(
 
Messages
69
The CFS and CFS Treatment wikipedia pages really need to be edited to include the rituximab study results. I wish I had the energy but hopefully one of us has. Mentioning the apology by the Norway Directorate of Health could also be part of the controversy section and page.

I understand that a lot of people get upset with the maybe-outdated content on the Wikipedia CFS page, but, actually and sadly, there is no proof that the Rituximab is as effective as it seems; why, although some people dramatically improved, the others didn't, how much time will the effect last, why it did happen, or even what the norwegian scientists are doing about it. Actually, it is not a official method, just a preliminary trial on few people.

Furthermore, the Wikipedia is not a primary source of information so sometimes and due to lack of quality editors it takes time for articles to get updated.

I understand as well that you wish that it only mentioned the CFS was due to physical factors in order to raise awareness into society, but actually that's not under Wikipedia's scope; maybe in some and minor cases the CFS is due to psychological factors, so it is included by default.