CFS definition and CDC

Discussion in 'Fibromyalgia Main Forum' started by Andrew111, Jun 22, 2009.

  1. Andrew111

    Andrew111 Member

    This is getting nuts. Years ago this illness many of us suffer from was named "Chronic Fatigue Syndrome" by the CDC. At the time, the CDC declined to acknowledge ME in any way as being at least part of our population. So the CFS name was given, and the CDC was given money to study it and help us.

    But now it looks like we are being subjected to a switcharoo. Instead of the CDC admitting this is a bad name and not inclusive enough, they are kicking all of us out of studies who don't simply have fatigue. IOW, instead of changing the name to fit the pattern of illness, they are changing the illness to fit their incorrect name.

    They are also saying that those of us with neurological, etc. symptoms don't have CFS, we have ME. Well, this is all fine, but are they now going to use that money to study and help people with CFS and people with ME? Sure doesn't look that way to me? And from what I understand, they don't even officially recognize ME as an illness, even though they say we have it.

    Anyway, I hope I'm not correct with this, but I'm beginning to worry that it is true.

    Anyone know about this?
  2. skeptik2

    skeptik2 Member

    Andrew you really must go to oslersweb dot com: there you will find all you need to know about the CDC.

    Start with the blog about the London Speech given by the famous author of "Osler's Web", Hillary Johnson.

    Read next the blog "Numeroloy", in May or June 2009; it posted under one of those dates.

    It's great you are getting so informed and outraged. Good for you! Now keep on reading and learning and help us out with any advocacy we post about getting Reeves fired, ok?

    Best to you,
  3. Andrew111

    Andrew111 Member

    Hi Skeptik2.

    I don't see anything on oslersweb dot com about the latest definition.

    Anyway, I'm never sure what to do with all of this. Becoming outraged stresses me and makes me sicker. So I keep trying to balance between activism and keeping my health. I'm not very good at it. I'm just grateful that there are people who can do something to help us. I do what little I can.
  4. AuntTammie

    AuntTammie New Member

    The London Speech (the speech given at the Invest in ME conference) does go into the name very thoroughly, and includes a lot more about the background of what the CDC has done to promote their agenda since the clusters of ME/CFS in Incline Village in the 80's (which is when the CDC was brought into the whole thing and asked to help) is a lengthy blog, but it does a great job of explaining

    basically, the CDC messed up and then began to try to cover their butts by completely reinventing the name and the definition of the illness, then doing a tremendous marketing job so that the general public and many, many Drs would buy into their (as Hillary calls it, "brand" of CFS) the process, they ignored all real science and invented their own, tried to discredit prominent researchers (and even tried to get one fired), and also spent a ton of money that was supposed to go to valid ME/CFS research on other research and on their own personal desires that had nothing to do with research (some of the financial part of this has been proven thru federal oversight committees)....anyway, their actions have been nothing short of criminal, have harmed the ME/CFS population, and have hampered real research....and they are not held accountable and are trying to cause a lot more damage....if they get their way, the guidelines that are currently in place in the UK will wind up being adopted in the US and that would be disastrous (the only possible treatments then would be CBT and GET, which have already been shown to not help, and sometimes cause a lot of harm)
  5. Andrew111

    Andrew111 Member

    Hi AuntTammie,

    Thanks. I read Osler's Web a couple years ago. It took a long time, but it was worth it. It helped me quite a bit. Not just the info on the politics. After reading about all that was found early on, my symptoms began to make sense. I also think it's the only book that gives a picture of how frustrating ME/CFS can be.

    Anyway, I was trying to learn about the "empirical definition." I think this might be what you are referring to as the UK thing. But with the added twist I described.
  6. jasminetee

    jasminetee Member

    Osler's Web is a great resource that shows the history of CFS. But now that the CDC is excluding us from the label of CFS, I guess we should all start saying we have ME.

    Funny, wasn't it just last year that the name was officially changed to ME/CFS?

    Way to go CDC!
  7. QuayMan

    QuayMan Member

    Andrew111 and anybody else interested,

    If you go to the petition on the definition
    you can find links to articles on the issues.
    It's a bit complicated unfortunately - if it was simpler, I think there'd be a bigger uproar about what the rubbishy empirical/Reeves definition the CDC is using for its research now.
  8. bjsmit1

    bjsmit1 New Member

    The CFIDS Association sent a letter to the CDC about their proposed 5 year research plan, and the subject of using the flawed empirical is addressed in the letter (#3 in their summary of concerns).

    Please help in addressing this issue, as well as all the other reprehensible actions of the CDC with regard to CFS.

    The CDC has victimized millions of Americans over the last 20+ years, and their most recent 5 year outline will only continue to harm patients, families, and our collective cause to achieve better diagnostic measures, improved treatment options, and ultimately a cure.

    If you are able to, please contact the CDC CFS Research Program, via several avenues, including facebook,, the Grassroots Action Center, or by emailing the CDC, and endorsing the letter that the CFIDS Association sent. Please let them know that we will not accept such a deplorable plan. The following url's can point you in the right direction.

    CFIDS Association's letter to the CDC:

    Email address to endorse the letter sent by the CFIDS Association:

    Gassroots Action Center:

    CFIDS Association's facebook page:

    I can not describe how important this is, and I plead with everyone to tell the CDC that we will no longer stand for the status quo.

    Please act soon, as the deadline is Tuesday, June 30th. Thanks in advance for any and all support.

    Brian Smith
  9. AuntTammie

    AuntTammie New Member

    thanks Brian for posting this all over the place.....we really need to take action on this
  10. AuntTammie

    AuntTammie New Member

    I was not quite clear in my last post, sorry....when I said osler's web, I meant the web site - the book is excellent, but the website has a shorter explanation in its blog that does explain how the empirical definition came about

    the empirical definition is the US CDC's most recent definition - what i meant about the UK is their guidelines for treatment (which are based on saying that CFS/ME is psychological)....the empirical def unfortunately plays rt into the CDC's push to get those treatment guidelines adopted in the US
  11. mezombie

    mezombie Member

  12. LonelyHearts

    LonelyHearts New Member

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