Wikipedia and CFS...this is ridiculous!

Discussion in 'Fibromyalgia Main Forum' started by SpiroSpero, Jan 2, 2009.

  1. SpiroSpero

    SpiroSpero New Member

    http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome

    I just read it and what can I say? The most ridiculous article I ever read! They leave out all the new finding all the studies, the millions of papers and conclude: It's all in your head!

    So it doesn't surprise if they recommend the following treatment: CBT and GET of course...

    Sorry to say so (I'm a very calm person) but what idiots are responsible for that?

    I wonder if Mr Psychologist and his friends shape this article to their wishes in an attempt to save their little world?

    Enough. Have a nice day. If anyone has any ideas how to change this please tell us. How long has this been going on anyways? I think I can remember a much more scientific wikipedia article on CFS.
  2. TeaBisqit

    TeaBisqit Member

    The part where it says it's mostly women in their 40s and 50s is absolutely stupid. Many of us got sick in our early twenties or younger.

    This whole part should be removed: "mental and psychosocial factors causing or contributing towards CFS;[24] though some individuals with CFS firmly reject any psychological involvement and believe strongly that their condition has a physical cause." I think it looks to create doubt as to whether we are sick.

    This, too, must be removed as it is complete BS: "Psychological factors

    The success of certain treatments suggests CFS may be perpetuated when patients fixate on a physical cause of illness, their symptoms and when exercise is avoided. Lack of support or reinforcement of illness behavior from social networks can also delay recovery,[37] as can conflict with doctors who insist on psychological causes over a patient's objections. High scores of neuroticism and introversion on psychological tests have also been associated with a predisposition to developing CFS."

    Total garbage. We don't "avoid" exercise. We can't do it! Due to the severity of our symptoms we cannot do it. Whoever wrote this should try having severe pain and severe fatigue every time they try to exercise and see what's it like, particularly the next day when the fatigue is so bad you have to sleep for days. And the pain makes you wish you were dead and all your lymph glands have suddenly swelled up and you have a fever and swollen spleen from it.

    You are right, there's tons that need editing out. I don't know if you can edit if you have an account there. I don't have one. It's not right that they are getting away with it.
  3. Forebearance

    Forebearance Member

    Well, that is ridiculous! I agree.

    A more up to date CFS expert should fix that page. Good grief. I haven't had any "reinforcement of illness behavior" and it didn't make me one speck better.
  4. Rafiki

    Rafiki New Member

    and take part in an ongoing discussion about the particular entry.

    Perhaps we should ask for volunteers from the board to straighten it out and we can all monitor it for accuracy.

    I've looked up CFS on Wiki before and it did not include this info. A Wiki entry will be changed many times as people with different information and opinions make changes.

    I don't think it would do us much good to be all making changes - could be counter productive - but we might nominate one more people to check and change. The Wiki contingent.

    And, we do well to consider that those with vested interest on the other side will be checking and changing right back.

    So, we should not blame Wiki; we should use it to get out accurate information from credible sources! This is one arena where we can actually effect change rather quickly.

    Thanks for setting this in motion forebearance.

    So, we need to get a committee of our best and brightest, not to mention cognitively sound, members together.

    This is an opportunity!

    Peace out,
    Rafiki

  5. SpiroSpero

    SpiroSpero New Member

    Rafiki is completely right in my eyes. It would be great if a few of the brightest members here could work on the wiki article.

    If there is a need for a special scientific study or abstract e.g. brain blood flow and cfs etc. I can search for it. I'd really like to help and change something.


  6. simonedb

    simonedb Member

    because in last couple months i had googled myalgic encephalitis and a really good definition came up at wiki, it seems to be gone now! i just looked. something is going on, the propaganda against forces are at work it seems.
  7. Rafiki

    Rafiki New Member

    thanks for bringing this up, SpiroSpero!

    The one thing we want to avoid is getting the entry locked. We must move carefully which is why I'm keeping my foggy brain away from any place I can do any damage.

    I'm sure we're not the only ones concerned about this.
    Rafiki
  8. simonedb

    simonedb Member

    what causes it to get locked?
    maybe jodi bassett from hummingbird could help.
  9. TeaBisqit

    TeaBisqit Member

    NOT Hummingbird. Her site is the one where my cousin deliberately misread it and told me I have a fake, made up disease. And she said, I always knew it was fake. And all this was said with alot of evil joy. If Jodi does anything, she needs to be VERY CLEAR that CFS/CFIDS is NOT a fake disease, only the name of it was made up to cause deliberate confusion and horror.
  10. jasminetee

    jasminetee Member

    This is very disconcerting. I'm really angry about this. The old article was excellent. We need to do something about this asap and then stay on top of it because I can see a war coming over this. Did you read this? "Researchers question the accuracy of the term "myalgic encephalomyelitis" since there is "no recognized pathology in muscles and in the central nervous system."[1][110] For this reason, in 1999 the Royal Colleges of Physicians, Psychiatrists, and General Practitioners in the United Kingdom called for doctors to stop using the diagnosis.[1] The Royal Colleges later bowed to protests by patient groups and endorsed using ME along with CFS."

    Oh yeah, they're pissed. I just don't get it... they got to keep their precious "CFS" name too. Interestingly, at the bottom it says: "This page was last modified on 3 January 2009, at 10:51"

    All one has to do is Register in Wiki and then they can Edit it. I'm willing to help Edit it if I'm needed. I'll continue to check this thread and see what we all come up with. The main thing I think we need to do is to take out a lot of the information but I've only glanced over it so far.

    tee

  11. gapsych

    gapsych New Member


    This is absolutely astounding. Please someone with a functioning brain help.

    One thing I have noticed with Wiki, is there will be embedded words that will take you to another site.

    Because this article could be very long, we might want to put something like "studies in bold" and you could link directly to them. On the other side, would people do that? I'm just brainstorming here.

    I do not know the ins and outs of wiki but had no idea you could change it. However didn't someone write that someone famous had died, even before the public knew. It might have been the person's website.

    Does someone actually own the site? Why would anyone put any credence to something like this. Obviously, I was clueless about this issue and would look things up. You live and learn.

    Great idea Rafiki and SpiroSpero, thanks so much for bringing this up.

    Take care.
    gap
    [This Message was Edited on 01/03/2009]
  12. simonedb

    simonedb Member

    I knew wiki could be modified but I have never engaged in any of that there but I sure have read a lot there and relied on it.
    if its easy to do why not just delete all that crap until have time to put in better stuff.
    someone deleted the myalgic encephalitis one it seems, it was very good.
  13. jasminetee

    jasminetee Member

    Apparently there has been an ongoing war regarding ME/CFS at Wiki since September. Go to the "Discussion" tab on the page and you'll see what I mean. It starts out with arguing about the name but then gets into the psychiatric stuff further down. If you scroll to the bottom you'll see that this fight has been going on up to today and will probably continue.


    Somebody named Sciencewatcher seems to be from the Wessely camp:
    "Guido removed neuropsychiatric from the nomenclature. I think it should be re-added, as it is an important factor. --Sciencewatcher (talk) 14:11, 12 September 2008 (UTC)"

    I read at the bottom that Guido got banned from Wiki.

    This is a lot for my foggy brain to try to take in but I think it's important we try to do something about it.

    tee
  14. Rafiki

    Rafiki New Member

    Wiki has become the first hit one gets when searching almost anything. It has been studied and found to be very accurate because it is edited by everyone. It is a very useful tool and a fascinating phenomenon.

    All of that said, it matters very much that the Wiki entry not be abandoned to the psychologizers. Each one of us will feel the negative impact of an inaccurate and biased Wiki article. Wiki, as it represents the zeitgeist, is ground zero for ME/CFIDS(CFS) awareness.

    However, I feel sure that no-one will benefit from ill considered or highly emotional contributions to the effort. Right now I could make a really ill considered and emotional contribution but I won't. (I joined Wiki long ago and have edited articles about other issues.) I really don't want to be the evidence the psychologizers are after -- the irrational, unreasonable, emotional, hysterical patient.

    Cool heads with highly functioning brains are needed. It's going to be a long hard slog.

    Ah well...

    Rafiki

    ETA I reread this and worry that it may seem to imply that some here are not cool headed. I don't mean that at all. Everyone seems very chill.

    Except me. I'm not.

    I'm so not!

    :eek:)


    [This Message was Edited on 01/03/2009]
  15. Rafiki

    Rafiki New Member

    Those who are editing Wiki may well be reading this site as it is one of the largest if not the largest -- or, used to be the largest. (Tangent, sorry.)

    Anyway, what we say here is public and is one facet of the public face of ME. Everything we write we are publishing about ME.

    I would like to ask those who do not have ME (CFIDS/CFS and/or FM) but who have found their way here from other boards to please not diagnose themselves. We will like and support you just as much if you do not have a diagnosis of ME...

    I know that there are people who start out posting as a person with a very clear diagnosis of depression, or something else, but who begin, over time, to drop CFS or even ME into their posts.

    I understand that it can seem to be a woolly and unclear diagnosis but it isn't. I understand that it may seem to not matter very much whether one is exhausted because of depression, an auto-immune problem, ME or whatever... but it matters very much. All of us, no matter our diagnosis, benefit from clarity and accuracy.

    It isn't easier to have ME than it is to be exhausted and ill and not have an ME label. Having ME is a bit like Cassandra's curse. It's far from the worst illness a person can have but we are all a little bit ahead of the curve so we take a lot of abuse and face a lot of misunderstanding. We need to keep everything as scrupulously accurate as we possibly can.

    I know how hard it is to get a diagnosis, believe me. I got sick when I was 27 and I'm 56 now. I've experienced most of the trials and tribulations inherent in having this illness over all these years.

    In the past I was diaguessed with MS and belonged to some MS sites. The issue of diagnosis is almost as complicated for PWMS and people posted with their diagnostic status, among them: Probable MS, Possible MS or undiagnosed. We might benefit from a similar system.

    I hope no-one takes offense.

    Peace out,
    Rafiki


    [This Message was Edited on 01/03/2009]
  16. jasminetee

    jasminetee Member

    Long hard slog is right.

    I just registered to Wiki. I went into their Chat to see if I could get some help on how to at least delete some of the lies. Well, we cannot delete anything with Citations. I didn't get very far as those helping me had no clue about CFS but they did tell me that the first sentences I wanted to Delete were cited from the CDC and neither or them believe the CDC would ever lie.


    These were the sentences brought up by tea that were as far as I got: "The part where it says it's mostly women in their 40s and 50s is absolutely stupid. Many of us got sick in our early twenties or younger.

    This whole part should be removed: "mental and psychosocial factors causing or contributing towards CFS;[24] though some individuals with CFS firmly reject any psychological involvement and believe strongly that their condition has a physical cause." I think it looks to create doubt as to whether we are sick.

    This, too, must be removed as it is complete BS: "Psychological factors

    The success of certain treatments suggests CFS may be perpetuated when patients fixate on a physical cause of illness, their symptoms and when exercise is avoided. Lack of support or reinforcement of illness behavior from social networks can also delay recovery,[37] as can conflict with doctors who insist on psychological causes over a patient's objections. High scores of neuroticism and introversion on psychological tests have also been associated with a predisposition to developing CFS."

    I was asked to please not cause a war in Wiki.
    [This Message was Edited on 01/03/2009]
  17. Rafiki

    Rafiki New Member

    I've seen entries get locked down, often in a bad state, because of wars on Wiki. We need to be very cool customers. Which is why I'm not editing.

    This may be what "CFS" is becoming as per the intentions of the CDC. It's hard to quarrel with their statistics since they cast the net so wide as to include everyone who is weary for a prolonged time.

    As the economy worsens and we become an increasing burden, things will not get better. We are often expensive and almost always inconvenient.

    We must the coolest of the cool.

    Peace out,
    Rafiki

  18. TeaBisqit

    TeaBisqit Member

    give them citations. There are plenty of people on this forum who can quote up a storm of true facts on this disease. If that's what the Wiki people want, get our most knowledgeable members to go over there and post a million facts with links to all the scientific studies and data that backs it all up and blow these people out of the water. You all know what a filibuster is right? Give them one long endless filibuster. There are alot more facts on the disease than there are anything these crazy shrink psychos can ever come up with.
  19. Rafiki

    Rafiki New Member

    A filibuster won't work. They will just lock it up for a period of time in the dreadful state it's in and no-one will be able to make any changes.

    Wiki is a world unto itself with its own rules of conduct and behaviour and its own agenda. Its agenda is not to represent the cutting edge science or to have an opinion. (Of course, it's impossible to avoid bias and opinion.) The agenda is to represent current understanding of an issue as accurately as they can. The agenda of the editors is, of course, biased as is ours.

    But, please believe me when I say there is absolutely nothing to be gained and much to be lost by storming Wiki and waging a Wiki war. It will change nothing.

    Which is, of course, why I sit here now biting my tongue.

    :eek:)



    [This Message was Edited on 01/03/2009]
  20. jasminetee

    jasminetee Member

    Tea and Rafiki and all else here who have contributed to this thread. I got in quite a bad state over this earlier. What you say makes sense Rafiki from what i just experienced. I guess there are Regulars there that hold more clout?