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Misinformation in CFS Wikipedia article

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

  1. LaurelW

    LaurelW Senior Member

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    In addition, it seems that a lot of the other information is out of date, including too-favorable reviews of CBT and GET.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

    RustyJ Contaminated Cell Line 'RustyJ'

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    The CFS Wikepedia article is very much under the control of the pro-contamination and CBT factions. Attempts by patients to change content is continually thwarted. It appears to be a lost cause. My advice is to ignore it completely. The degree of inaccuracy and bias is really quite profound. There are threads on mecfsforums about this. And if they couldn't get anywhere...:rolleyes:
  3. Sean

    Sean Senior Member

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    As I have said before on other threads, that article would be a lot worse if it was not for the outstanding efforts of a handful of editors who have fought a long and difficult (and often unrecognised) battle against the more rabid and tenacious psychophiles. Tekaphor in particular deserves a gold medal.
  4. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Didn't mean to denigrate the efforts of those who are fighting on. I think everyone involved is deserving of praise. I hope you can find the energy to continue.
  5. eric_s

    eric_s Senior Member

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    But how can this group control what's written there? I don't know how Wikipedia works. If it's too complicated don't bother to explain...
  6. Sean

    Sean Senior Member

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    No problem. Didn't take your comments as denigration. I was really only pointing out that the article could be a lot worse.

    I am not involved in editing any Wikipedia article. No thanks. Too much heart ache. Just been keeping an long-term eye on the CFS article and its, er, robust discussions page.
  7. Dainty

    Dainty Senior Member

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    Another thing is the "treatment" section of the page lists CBT and GET as treatments and then states: "Other treatments of CFS have been proposed but their effectiveness has not been confirmed." Yikes! Is there any way to get a group together to have another go at editing the article with those handly little things called facts?
  8. alex3619

    alex3619 Senior Member

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    Some years ago I posted a long critique of the wikipedia page to co-cure. Malcolm Hooper made note of it in Magical Medicine. Shortly after I did that several advocates emailed me to tell me they had been trying to change it for years. I am strongly considering writing a new article about this. Bye, Alex
    Lou, HTree and WillowJ like this.
  9. olliec

    olliec

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    I wonder if any of the charities or researchers could get involved in the wikipedia page? It's such a critical source of information, and yet quite biased and unhelpful. Charities and researchers are in a stronger position to provide evidence to support changes.

    I'd certainly like to see a separate ME page created, as distinct from the CFS page.
  10. Enid

    Enid Senior Member

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    They definately need educating - even a balance of current research findings might make them more accurate - I assume that is what Wikipedia fly their flag and base their reputation on.
  11. WillowJ

    WillowJ Senior Member

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    just an FYI: currently the Wikipedia article on CFS is locked to edits by new members. You can only edit that article if you have a pre-existing Wiki account. Evidently they don't like hearing about biomedical research, get the hives when M Hooper or J CFS is mentioned, and are generally uninterested in learning new things or looking at problems from different angles. (Actually I think a close associate of SW's is maintaining a very close watch on all things related).

    Yes, I agree that the way this is handled probably doesn't conform to the spirit of Wikipedia.

    On the other hand, we don't have enough quality review articles in highly-rated journals (Wiki's favorite source). The high-quality journals like to publish trash, on the topic of ME/CFS. So we are a bit limited, on what we can do within Wiki guidelines.

    For me personally, my energy is better spent influencing the science and politics. Wiki will follow the science and politics. Wikipedia does not lead. Wikipedia does not challenge zombie science. (rant directed externally, by the bye, not directed internally at anyone here at PR or in the ME community)

    Still, there is good information out there, and I commend anyone who has the emotional fortitude to take on the (bio)psychosocial school in the Wiki editing community.
    ixchelkali likes this.
  12. Esther12

    Esther12 Senior Member

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    I guess it could be worth signing up, and gradually improving some of the less controversial and related articles. If more people were involved in doing so, it could help turn the tide.
    justinreilly and WillowJ like this.
  13. eric_s

    eric_s Senior Member

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    I guess at least this could be proven wrong. In one of the Stanford videos that are available on YouTube Dr. Montoya talks about their clinical trial where they tested antiviral drugs and he says that in this randomized, double-blinded, placebo-controlled trial there was a statistically significant difference between cases and controls in how they improved. That would be confirmation of the effectiveness of this treatment, wouldn't it?
  14. eric_s

    eric_s Senior Member

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    I agree. I hope a number of people will try to do that.
  15. Carrigon

    Carrigon Senior Member

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    I fought with the monsters running it a few years back, got nowhere. I am convinced Wikipedia is run by a group of sociopaths. They didn't care how much info I threw at them, they still insisted CFS is a purely psychological condition.

    I've had run ins with Wikipedia staff before when I've seen other unrelated topics up that have completely FALSE info in them. And no amount of my giving real proof the info was false ever changed their minds. They just locked down anything I had a problem with and left the false info up. It's unfortunate that Wikipedia is not a credible info source. It's more like the National Inquirer. There are some facts, but they are all mixed in with half truths and full on lies.
  16. Doogle

    Doogle Senior Member

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    WillowJ, I don't believe that the article is presently locked to edits by new members. On the other hand, most edits by anonymous accounts are scrutinized very carefully.

    Wikipedia's sourcing conventions for these types of articles are fairly rigid. Medical information is normally restricted to items from reviews that are published in major medical journals that have many other publications citing them.

    Unfortunately, Wessely's group is prolific in this area so the article reflects that point of view. It takes a lot of work to read the good reviews about the biomedical research to have the references that back up the edits. Without doing this, as WillowJ says, it is just a waste of energy because Wikipedia does not lead or challenge. If people try to change the article without sources that conform to WIkipedia's conventions they will be soundly rejected and the opponents of the biomedical theories will claim that there is a group effort to "bias" the article.

    Please, if people try to edit the article, research for good pubmed published review articles that can back up the edits that are being made, don't go ballistic when things are challenged, discuss items logically on the talk pages, and edit other unrelated articles since that is considered a plus when an editor's contributions are scrutinized. It's a large commitment, but otherwise it's an exercise in futility and might even set the article backwards when the pro-physiological crowd gets involved in recent changes.


    Dolphin and WillowJ like this.
  17. Sean

    Sean Senior Member

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    This is a general problem with Wikipedia. I have seen it happen on other articles, completely unrelated to ME/CFS, including articles on subjects (or individual facts within articles) that I thought were not even remotely controversial. Which is why I don't get involved in editing there.
  18. WillowJ

    WillowJ Senior Member

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    hmm, it was last time I looked, but perhaps it has been changed since then.

    Good information in your post!
  19. fla

    fla Senior Member

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    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.
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    This is a good example of the strictures of Wikipedia they use against us. If you try to cite this, they will come back with a Wessely review article that says that we're crazy and only CBT and GET work. In the wikipedia universe, the wessely article trumps the Montoya presentation, because it was published in a journal available on PubMed.

    So, it is definitely a fight, but one I really think is worth fighting. This wikipedia article (like everything wikipedia) is , i am sure, the number one most accessed source for "CFS" info, so it is key to keep fighting it.

    we need more people on this article. if you are just starting out, you can just go on the discussion pages and just state that agree with specific edits that improve the accuracy of the article. in order to edit, i recommend reading some of the 'guidelines' they have on the site for editing. There are some ways, in theory, to get around these bad rules. The most important one i've found is the overarching rule that the guidelines are only guidelines and if they aren't right in a particular circumstance, they should NOT be followed.

    There have lately (in the past year or so) been some newspaper articles with factual info on ME. I have been making a bookmark file of some for use later. If you see an article in a prominent paper that has good facts, pls go over to wikipedia and find a place to enter the info on the article with a cite to the article. keep track of it because some wessely-lover will come along and delete it and you can go back and argue with them with the support of all of us.

    I really hope some people will become regulars on the "CFS" wikipedia article. This is really important and YOU can make a real difference! I have done some and plan to go back when i get some time. See you there!
    Dolphin likes this.

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