Invest in ME Conference 12: First Class in Every Way
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The Great NIH Exercise Initiative: A Boon for Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia?

Discussion in 'Other Health News and Research' started by GodGenghis, Jan 4, 2017.

  1. GodGenghis

    GodGenghis

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    JaimeS, L'engle, *GG* and 11 others like this.
  2. Sasha

    Sasha Fine, thank you

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    Very interesting, and worth a read - thanks for posting, @GodGenghis.
     
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  3. Denise

    Denise Senior Member

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    To maximize the value of this work NIH needs to compare the changes in different illness groups, as well as across different activity levels and see whether any/all of the changes differ over time/age....

    In order to be most useful for us, I think it needs to be run concurrently with other studies done on us - especially ones involving 2-day exercise tests.

    This initiative was announced in 2015 and is still getting underway.
     
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  4. Gemini

    Gemini Senior Member

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  5. duncan

    duncan Senior Member

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    How does Cort justify singling out exercise as the "most problematic activity of all in ME/CFS"? Does he mean exertion? Even so, there are plenty who may weigh in with cognitive issues, or pain, or...

    Either way, expecting this study to help us any time soon is an exercise in optimism.
     
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  6. Gemini

    Gemini Senior Member

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    Thanks for posting this information @Denise.

    It includes key contact names/addresses for the various components of the initiative, quite helpful.
     
    actup likes this.
  7. mfairma

    mfairma Senior Member

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    Lol, isn't that Cort's bread and butter?

    This seems interesting, but five years and not being included directly as a focus of study are ridiculous. Having been sick for seven years now, the prospect of it being good news that we might have a very useful reference in five more just makes me laugh. Maybe if I were sick for fifteen years or twenty years that would seem like great news. If I were sick for only one, perhaps I would be devastated.
     
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  8. Denise

    Denise Senior Member

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    As you say @mfairma results from this initiative are 5 (or more) years away. Results from the NIH clinical study for us are probably at least 5 years away. In geological time this is nothing, but for patients, no matter how long they have been sick, 5 years is a big chunk of time with many lost opportunities.

    Yes, we need these studies but is it wrong to think that we need more (of appropriately characterized patients), running simultaneously, in order to reduce the waiting and give us our lives back?
     
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  9. duncan

    duncan Senior Member

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    Good studies are desirable, simultaneous or otherwise. Assessing studies - particularly those whose direct relevance is debatable - through rose-colored glasses is not.

    We need clarity and purpose and realism. We need a window into what is happening with ME/CFS research, not the window dressing of a study that may not even tie back to us.

    There is no more reason to think this "exercise" study will directly benefit the ME/CFS community, than the broad brain research initiative announced a few years back would directly help us with our "cognitive" deficits. Lest we forget, the NIH has a history of forgetting the ME/CFS community.

    And what's with the emphasis on exercise? Exercise? Isn't this just feeding a problem? Exercise is just a manifestation of the exertion problem, and yes, we better well be able to distinguish the one from the other.

    Reducing the ME/CFS symptom cluster to problems with exercising does little to help. Our problem is not so much with exercising; that is just another downstream effect, and a specific and socially damning one at that. If the effort were drilled down, and parsed specifically to ME/CFS like the 2-day CPET efforts, cool - but shot gun approaches, I fear, once again will leave us out looking in.
     
    Last edited: Jan 4, 2017
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  10. Denise

    Denise Senior Member

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    Warning - very tongue in cheek --- I finally understand the intense push on the brain initiative. NIH feels badly that their cognitive deficits mean they keep forgetting about us. The brain initiative will help them remember better (and remember us), and then (maybe) they'll get around to helping us....
     
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  11. GodGenghis

    GodGenghis

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    @duncan reducing ME/CFS to a condition of exercise intolerance sort of irks me. Yes, exercise intolerance is the primary symptom that distinguishes ME from other fatiguing conditions, however it sort of implies that we're more or less fine as long as we dont exercise, which couldn't be further from the truth. Exercise is a luxury I could find a way to live without. It's the PRE-exertional malaise that is killing me.

    That said, I understand why Cort is defining exercise loosely in this context, and I very much appreciate his optimism.

    Edit: @duncan I now see your comment where you expressed much of my same sentiments in regard to exercise.
     
    Last edited: Jan 5, 2017
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  12. Murph

    Murph :)

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    I'm generally positive about this. Part of the problem with studying CFS is we have to start with fishing expeditions like Naviaux's metabolite study. It's not apparent which systems might be most fruitful to study so we look at them all. That's slow.

    A huge study of what metabolic molecules do when we move will help provide grounding for future CFS work. It won't be fast, but research isn't. Some papers will presumably start emanating before the five years is up.

    I'm hopeful about CFS. The prospects for speedy science get better each year, as more basic research is done in any number of fields (gut, brain, nerves, metabolism) and as more tools are developed to understand the human body: "Omics" of every kind are racing ahead.

    I suspect the key to a cure for CFS is as likely to come from outside the field (the sign on Fluge and Mella's door, for example, reads Oncology) as within.
     
    Last edited: Jan 4, 2017
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  13. *GG*

    *GG* Senior Member

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    Is any of this going on in the New England area?

    GG
     
  14. GodGenghis

    GodGenghis

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