Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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Alternative to 2-day exercise stress test?

Discussion in 'General ME/CFS News' started by Mary, Jun 18, 2016.

  1. Mary

    Mary Senior Member

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    I was thinking about the NIH's request for input on what and how to study ME/CFS and how most (all?) of us consider the 2-day exercise stress test to be crucial for any research. However, because of its nature, it would be possibly quite harmful for many if not most of us to actually do the test. (what a dilemma! :bang-head:)

    It occurred to me last night that the 2nd day part of the test measures what has happened in the body in response to the first day's stress test. So I was wondering if there might be some sort of blood test (or urine? whatever) done on day 2 that could measure the effects of the first day's stress test, and avoid the 2nd day stress test altogether. For me, the 2nd day is what would potentially be most harmful, when my ATP is so low and I can't really function, I can't imagine doing a stress test then.

    When I crash (PEM), it feels like my lactic acid levels rise - I can tell when a crash is abating when the achiness dissipates. So I was thinking perhaps measuring lactic acid levels rising and falling in response to a one-day test might be an indicator of PEM, and thus avoid the 2nd day stress test.

    Or measuring something else, metabolites, I don't know what, I'm not a scientist, but I'm just thinking there have got to be measurable abnormalities present while we are crashed. I never see the doctor when I'm crashed for obvious reasons, so blood's never taken then.

    So many are urging the NIH to include the 2-day exercise stress test, but I think we need a way to achieve the same thing without harming ourselves. Any ideas?
     
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  2. lnester7

    lnester7 Seven

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    Please do not shoot me but I think the ones that are a bit better will have to take one for the team. This is the only way to prove the most important feature of CFS. I am sure one they zero out a bit more the full one will not be necessary. But once they have the prove, we can go back to the type I got done where they prove the aerobic capacity is broken (is not as taxing on us) they stop it before you even feel it (when you reach your AT).

    Another thing is when they calculate AT you will reach the top way before you even stop in your regular live. So I would not shy away from it.
     
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  3. Bob

    Bob

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    The Lights' research comes to mind...

    They carried our certain biomedical tests before and after exercise, and demonstrated cytokine and epigenetic abnormalities after exertion compared to controls.

    It would be great to see it replicated on a large scale.



    White AT, Light AR, Hughen RW, Bateman L, Martins TB, Hill HR, Light KC. (2010) Severity of symptom flare after moderate exercise is linked to cytokine activity in chronic fatigue syndrome. Psychophysiology. 47:615-24.
    http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8986.2010.00978.x/abstract

    Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, Light KC. (2012) Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome. J Intern Med. 271:64-81.
    http://www.ncbi.nlm.nih.gov/pubmed/21615807
    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02405.x/abstract
     
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  4. Mary

    Mary Senior Member

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    Thanks @Bob - that's exactly the sort of thing I was thinking about - I am out of the loop on most ME/CFS research -

    I know the NIH was requesting suggestions about research projects etc. and I think this would be great for them to follow up on, replicate on a large scale as you say :)
     
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  5. Mary

    Mary Senior Member

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    @Inester7 - I was thinking if it were possible to get definitive evidence of PEM without the 2nd day stress test, then the testing could be done on many many more people, even on sicker ones. I know the ones who are healthier could probably tolerate the 2-day test better than the sicker ones, but I don't think we have any way of knowing beforehand who exactly is going to have a horrible relapse and maybe not even get back to pre-test status, and I don't want anyone to have to go through that if there is another way --
     
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  6. halcyon

    halcyon Senior Member

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    If we can't get away from a stress test, then I like the idea of isometric muscle testing, as done in this study. If I understand it correctly, this type of test probably would be difficult to fake because there is a predictable pattern of force decline that shows maximal effort is being produced, and it demonstrates the exact cardinal symptom of Ramsay's ME, which is delayed recovery of muscle strength after exertion. I feel like this kind of test would be much safer than CPET and shows the exact same problem.
     
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  7. Mary

    Mary Senior Member

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    @halcyon - that looks very interesting, and quite possibly a good alternative to the stress test. I took JaimeS's survey which MEAction is submitting to the NIH (which is very good), but I plan to write a brief letter in a day or 2 myself and will include this link plus Bob's suggestion above - both are very good - thank you! :thumbsup:
     
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