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What is the CDC CFS program doing? Powerpoint presentation to CFSAC meeting useful.

Discussion in 'General ME/CFS News' started by Dolphin, Jan 21, 2012.

  1. Desdinova

    Desdinova Senior Member

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    Why does Fudka have to be revisited, why can't they just suck it up and grow....? They could just as easily say we need to strengthen the criteria we use to define this condition. And then call in the very experts they've contracted with and adopt the CCC or ICC or some agreed upon (by the real experts) variation based upon them . But instead the CDC is giving contracts to the experts. So since it's a contract will these experts be bound to conditions imposed on them by the CDC such as using the very same Fudka criteria they plan on using the data collected to revisit?
     
  2. Dolphin

    Dolphin Senior Member

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    The problem I see with those is that J Jones, N Klimas & L Bateman have all recommended exercise in the past. A. Vincent doesn't sound the best either. So I think there is a good chance they'll recommend an exercise program.
     
  3. Bob

    Bob

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    Yes, I was thinking similar questions...

    But I suppose that they have to start with their own historic Fukuda criteria, as a reference point, considering that all of their historic work and resources have always been based on Fukuda. But should their starting point be Fukuda and the CCC, and the ICC, rather than just Fukuda alone?

    What relevance will a 'revisited' Fukuda have for the ME/CFS patient community, considering that the patient community probably has zero respect for the CDC, and especially now that we have the ICC?

    And what relevance does the CDC have, generally speaking, for the CFS/ME patient community now?
    I suppose the CDC is very relevant, because it does make a lot of difference to our lives. It's a shame that it doesn't have a more positive impact on our lives though.

    I suppose it all boils down to what the honest intentions of the CDC team are, how much they have really changed, and how much they really are interested in doing the right thing for the patient community, and what resources they have.
    If their intention is to do a thorough and honest overhaul of their CFS diagnostic criteria, involving consulting the entire CFS patient community, then I don't suppose it matters that their starting point is Fukuda. What matters is that they do it thoroughly and properly.
     
  4. Bob

    Bob

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    I don't follow Nancy Klimas' work as closely as I should do, but my limited knowledge of her tells me that she is sensible enough, and knowledgeable enough, to avoid any serious references to exercise. I get the feeling that she has been casually involved in projects in the past, that her name is eternally attached to, but that she does not think that ME is either psychological or psychosomatic or based on deconditioning or a fear of exercise. But I don't know enough about her to know this for a fact.

    It would be helpful to know if she ever recommends exercise treatments to any of the patients she deals with.
     
  5. Dolphin

    Dolphin Senior Member

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    Here's an example of Drs. Klimas & Bateman recommending exercise: http://www.cfids.org/sparkcfs/exercise.pdf

    I have read other pieces where she recommended exercise as well as in talks. US doctors can be different to UK doctors: they can be mainly "physical" and still be recommending exercise. I think it may be the Fibromyalgia influence.
     
  6. Bob

    Bob

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    Thanks Dolphin.
    Well, at least she seems to be aware, and talks about, the real potential dangers of exercise, so that's good news.
    But any reference to exercise worries me, for obvious reasons to anyone in the UK, because it easily leads to misinterpretation by doctors who then think that you are ill because you are lazy, and that you should be forced to exercise in order to recover. (But this is in a country where the medical establishment believes that ME doesn't exist and is a personality disorder.)

    I suppose if gentle exercise is encouraged in suitable patients, as part of an overall health management plan, while fully understanding the true nature of ME, then that could be a different matter.
    But it would be an extremelly long time before I had that sort of confidence in the medical establishment, to find any references to exercise acceptable.

    I do seriously disagree with Klimas on some of her points in that PDF document though... In my experience, when I was at my worst (early on in the illness and fluctuating wildly), over-exertion would send me into a sudden and serious relapse that could last for weeks or months, and the relapse was as bad as, or even worse than, my previous relapse. In that document, she speaks as if she only deals with more stable, possibly long-term patients.

    I also wouldn't agree that "Exercise can put patients at a much higher level of functioning." That's a rather worrying statement. I would only agree that regular gentle exercise is generally healthy for anyone who can safely carry it out, but not that it leads to "a much higher level of functioning".

    Anyway, I stand corrected on my earlier comments, thanks Dolphin.
     
  7. Snow Leopard

    Snow Leopard Senior Member

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    If they do consider the definitions to be the same, they are going to have to come up with a good explanation for the 10-fold increase in prevalence from Wichita to Georgia. I mean there are swamps in both Kansas and Georgia, so that alone can't be it.
     
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  8. Ember

    Ember Senior Member

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    By modifying NHS Scotland's approach, the CDC could keep using Fukuda to diagnose CFS while adopting the ICC for ME. That would be tantamount to admitting that the world isn't flat though, and so far the Scots have been ahead of the curve in this regard ("These people clearly dont know where Im from:" http://www.dailycal.org/2011/10/06/the-world-is-flat-except-in-scotland/:Retro wink:).

    Health Canada, by the way, established the 'Terms of Reference' and the selection of the Expert Consensus Panel for the CCC, while the initiative for and development of the ICC for ME was done outside any organization without any financial or other assistance or sponsorship.
     
  9. WillowJ

    WillowJ Senior Member

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    uff. that's an uncomfortable thought.

    I know Dolphin answered the main part of your question, but I wanted to answer the minor part.

    She has a background in psychoneuroimmunology and has stated that one reason she became intrigued with ME is that she knew that particular field couldn't explain the disease, even though some others thought it could. In other words, yes, she thinks it's physical. :) I'm sorry I don't have a link for you on this; I can't recall where or when she said this, and I really should be abed so won't search for it now.

    but ya the exercise focus doesn't seem best, particularly not when couched in terms of driving improvement. fix the disease, then you won't be able to stop us from exercising, working, traveling, writing, speaking, and generally living life to the fullest!

    but James Jones doesn't even think it's a true disease...

    SL, thanks for the lulz
     
    Bob likes this.
  10. Dolphin

    Dolphin Senior Member

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    James Jones said somewhere in the last couple of years (I think it was when he was peer reviewer for an open access journal reviewing Twisk/Maes), people with CFS couldn't get worse from an exercise program - if people did get worse from an exercise program they must have another condition instead (I think thyroid disease was the example he gave)!
     
  11. Bob

    Bob

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    Thanks for info Willow.
     
  12. WillowJ

    WillowJ Senior Member

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    thanks for the info, Dophin.

    it's a bit curious that he signed Bristol Sorensen's follow-up study (this second one under the auspices of CDC, which is where Jones comes in) insisting PEM is a "consistently observed case-defining symptom" of CFS which is "one of the key symptoms in the Centers for Disease Control (CDC) symptom inventory list that differentiated subjects with CFS from those without the syndrome (7 [Jones signed ref 7 also; Beth Unger signed ref 7 as well)." he's a contradiction for sure :Retro smile: , but it doesn't seem CDC is big on consistency when it comes to biomedical aspects of ME/CFS (or differentiating ME or CFS from CF, depression, or "chronic unwellness"!)

    (I had to look up thyroid disease and exercise, but it seems rapid heart rate can stress the heart and cause exercise intolerance. funny example, since rapid heart rate is such a significant risk with ME/CFS as well! lol)

    btw, SL, in case my comment yesterday was ambiguous ("lulz" can be used with other connotation), I just meant I appreciated your humor (swamps for a disease they think is largely behavioral, lol)
     
  13. Dolphin

    Dolphin Senior Member

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    Here are the exact quotes I had in mind regarding James Jones - didn't remember them 100% correctly:
    Some other information is in this thread:
    http://forums.phoenixrising.me/show...(now-the-real-head-of-the-CDC-s-CFS-program-)
     
  14. WillowJ

    WillowJ Senior Member

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    thanks :Retro smile:
     

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