1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

Misinformation in CFS Wikipedia article

Discussion in 'Other Health News and Research' started by LaurelW, Sep 17, 2011.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    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.
     
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    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:
    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?
     
  3. HTree

    HTree

    Messages:
    86
    Likes:
    22
    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 And so many of their arguments are purely and simply outdated.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!
     
  4. leela

    leela Slow But Hopeful

    Messages:
    2,433
    Likes:
    2,948
    Couchland, USA
    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?
     
  5. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,490
    Likes:
    9,576
    Amersfoort, Netherlands
    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
     
  6. toddm1960

    toddm1960 Senior Member

    Messages:
    155
    Likes:
    3
    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.
     
  7. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,140
    Likes:
    1,712
    Somewhere near Glasgow, Scotland
    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.
     
  8. Sean

    Sean Senior Member

    Messages:
    1,262
    Likes:
    2,108
    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.
     
    Waverunner likes this.
  9. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,140
    Likes:
    1,712
    Somewhere near Glasgow, Scotland
    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 :(
     
  10. santi

    santi

    Messages:
    57
    Likes:
    2
    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.
     

See more popular forum discussions.

Share This Page