Definition of M.E./Myalgic Encephalomyelitis

Discussion in 'Fibromyalgia Main Forum' started by mezombie, Jun 24, 2009.

  1. mezombie

    mezombie Member

    M.E. is not the same as CDC-defined CFS. Here is a summary of the Canadian Definition, the one I suspect is most likely to be adopted by the U.S. (should it ever acknowledge M.E.):
    [This Message was Edited on 06/24/2009]
  2. Rafiki

    Rafiki New Member

    I'd love to see the Canadian Definition reflected on the ProHealth page giving the basics about ME. I'd love to see more precision here regarding the NECESSITY of more SPECIFIC symptoms than fatigue for 6 months. So many things can cause fatigue, even crushing fatigue, for 6 months.

    Thanks again,

    [This Message was Edited on 06/24/2009]
  3. karinaxx

    karinaxx New Member

    how are you?

    I wanted to respond to the post from Humming Bird and some disputeable facts.

    I dont think that Humming Bird is a good website which should be endorsed.
    Many of the statements made by Humming Bird contradict eachother and are disputable.

    It is disputable if ME is not the same as CFS/cfids!
    (While i agree with the fact that cfs as a name is a damaging name, it should not be confused with a discussion of the many different subgroups of ME/CFs, which is another disputable topic by itself)

    For example: One of the arguments that ME onset is always sudden, is false.
    There are many who are affected by a gradual onset.
    I am one of them and i have been tested and diagnosed by Dr. Meirleier .

    Another example is the fact they they discredit Dr. Meirleier work in their website with a very dubious article, written by some body who claims to be trained medically and at the same assumes a lot and does not know the facts correctly.

    At the same time Dr. Meirleir has been the driving force for the Canadian Consensus Document and has been one of the specialist on the panel drafting it.

    This are just a few of the contradictions.

    Regards Karina
  4. mezombie

    mezombie Member

    Hi Karina,

    I don't understand why you're upset by this post.

    This is not from Hummingbird/Jodi Bassett. As a matter of fact, Jodi would be horrified to see the Canadian ME/CFS Definition promoted!

    I posted this because some of us feel there is little understanding of CFS and ME on this board. If you read some posts, it's quite clear that there are people here who think "fatigue" is the same as CFS.

    Some suggested linking to ProHealth's description of ME/CFS, but that is very much in line with the CDC definition.

    You have not posted of late. Perhaps you are not aware of the recent CDC and CFSAC public meetings, where a number of people publicly criticized Dr. Reeves and his 2005 empirical definition of CFS. I don't think there has been such a backlash against the CDC in a long time. The CFSAC recommended Reeves be replaced, and his CFS definition be abandoned.

    During this process, a number of advocates reminded the U.S. government that "CFS" was the name given to an outbreak of M.E., Myalgic Encephalomyelitis, in Incline Village, NV in the mid-80s.

    Hillary Johnson gave an excellent speech to the recent Invest in M.E. conference which summarized the redefining of this illness to the point where anybody who is unwell for over a month fits the current CDC CFS definition.
    She posted it on her blog at

    I am not by any means in total agreement with Hummingbird's views. I don't think we can ignore the 25 year historical development of CFS. So I don't "endorse" the site. At the same time, there is some valuable information on it.

    Perhaps it would be best if you took your concerns about the Hummingbird website up with its owner instead of me.

    [This Message was Edited on 06/24/2009]
  5. karinaxx

    karinaxx New Member

    i am not upset at all, but i think you are, sorry.

    I thought i voice a legitimate critic to some information posted on the site you posted the link to; just information regarding the topic ME and CFS and the fact that it is highly disputed topic.

    Thanks for the update. I have been on the board the last few weeks and know about all the developements.
    I was very happy about Hillaries speach; thought she "hat den Nagel auf den Kopf getroffen" when she said we all have to change the way we advocate. All this years nothing has changed. We need to adress this problems on the political level.

    Sorry, cannot write anymore. I have an eye infection and every now and than every thing goes
    merky in front of me.

    take care and it was not meant to upset you

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