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Testing for Post-Exertional Malaise

Discussion in 'Latest ME/CFS Research' started by Dolphin, Oct 19, 2012.

  1. Dolphin

    Dolphin Senior Member

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    Moderator Note - this thread was split from http://forums.phoenixrising.me/inde...sical-activity-in-cfs-meeus-et-al-2011.13139/

    mtnbibliophile - perhaps this might be of value in some way:

     
  2. mtnbibliophile

    mtnbibliophile

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    Dolphin, in addition to the Stevens study on post-exertional malaise you cited above, I recommend Dr. Keller's presentation, Exercise Testing to Quantify Effects of Fatigue on Functional Capacity in Patients With CFS by Keller, B.A., Micale, FG, Ithaca College, which I have lost the url for (Sorry!) Furthermore, I STRONGLY recommend that anyone who needs to provide documented evidence of the extent of their CFS fatigue or existence of PEM make their way to Ithaca for Dr. Keller's two-day exercise tolerance test. Unfortunately, Ithaca is not easily accessible from most places, but it was worth the trip for me (9 hrs to get home via bus). It provided terrific evidence for my disability appeal, plus I have never had any other doctor so generous with her time in explaining my test results as Dr. Keller was. She's a PhD physiologist, not an MD, which might explain some of her willingness to devote time to me, but she's also simply a very caring as well as very intelligent person. Her entire staff demonstrated a real concern for her patients.
     
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  3. Dolphin

    Dolphin Senior Member

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    The only time I came across her that I recall was at the IACFS/ME 2011 conference. I hope she publishes.

    http://www.iacfsme.org/LinkClick.aspx?fileticket=+G6GTkbP33I=&tabid=499

     
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  4. mtnbibliophile

    mtnbibliophile

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    Thank you - that's exactly the study I meant. Her sample was unfortunately very small, so I hope she republishes when she has more data. Also she's starting a new (related) study which I will post more about next Tuesday after she comes by my house to do the testing for it.
     
  5. peggy-sue

    peggy-sue

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    And still the psychs say there are no tests for ME!:mad:

    Dolphin, I'd really like to thank you too, for posting and analysing this paper. I was sitting here reading your work, and thinking to myself; "Dolphin's doing a better job on this than the authors did!" THANK-YOU!
     
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  6. mtnbibliophile

    mtnbibliophile

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    Unfortunately, there still is not a single definitive test, because post-exertional malaise can be caused by other things. But the number of tests that can be done to show symptoms that have a high correlation with CFS/ME is mounting, and that is making it easier to prove we're sick. Even more unfortunately, it's not just the psychs who say there are no tests for ME. The Social Security Administration, disability insurance companies, most non-CFS-ers who write about it, and most doctors and researchers still take the position that there are no tests for CFS/ME.
     
  7. peggy-sue

    peggy-sue

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    Exercise tolerance (with full physiological and metabolic profile) would be a very good test for ME.
     
  8. mtnbibliophile

    mtnbibliophile

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    Incidentally, when I did Keller's PEM test, it also showed that my performance on the first day of the test was way below normal, that is, my energy level was significantly below normal even before exercise. I got dynamite results from this test for my disability insurance case. If you take it, though, be prepared for a total crash for at least a couple days (I was totally bedridden for a couple weeks, didn't dare drive a car for another week after that).
     
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  9. Sea

    Sea Senior Member

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    Postexertional malaise in women with chronic fatigue syndrome.

    @Dolphin do you have access to the full text for this paper?
     
  10. Dolphin

    Dolphin Senior Member

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    Sea likes this.
  11. anciendaze

    anciendaze Senior Member

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    When I just repeated a search for this study, I also turned up a paper from 1995.

    Apparently they have been very successful in getting ignored since 1989!

    You might think this work has never been replicated, but that would be wrong.
    Physiological responses to incremental exercise in patients with chronic fatigue syndrome.

    Patients with chronic fatigue syndrome performed worse than controls in a controlled repeated exercise study despite a normal oxidative phosphorylation …


    So when does serious consideration of CPET reach CDC attention? 2014.

    Keller turns up in two other papers,
    A diagnostic test for the identification of metabolic dysfunction

    Snell, Christopher R., J. Mark VanNess, Staci R. Stevens, Lucinda Bateman, and Betsy Keller. "Intravenous Saline Administration Improves Physical Functioning in a Patient with Chronic Fatigue Syndrome: 2064: Board# 1 2: 00 PM–3: 00 PM." Medicine & Science in Sports & Exercise 38, no. 5 (2006): S359.

    What I find most curious here is that the effect of a liter of IV saline on patients, and the vulnerability to episodic dehydration and hypovolemia, are part of the folklore of this disease, but virtually never taken seriously.

    (A friend of mine just spent some thousands of dollars on an ambulance ride to get 1 liter of IV saline, after which nobody could find anything wrong.)


    Since everyone "important" seems to know in advance that we are all wimps, it is interesting to read of a case involving an "ultra-endurance" cyclist. The problem with this paper is that, because a muscle biopsy showed no defect, the problem was assumed to be merely a matter of perception, though possibly neurological. Can anyone explain how perceptual defects are able to lower anaerobic threshold?

    Forget that last, there are people with advanced degrees who can explain any result. This should be a prime indication that they are no longer connected with science.
     
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  12. Sea

    Sea Senior Member

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  13. Bob

    Bob

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  14. Sean

    Sean Senior Member

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    Ta, Bob. :thumbsup:
     
    Bob likes this.
  15. Dolphin

    Dolphin Senior Member

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    Yes, I'm on researchgate but I signed out before and was able to get downloads when somebody said they had difficulty. I think the trick, for want of a better word, was to click "download" when one got the preview of the paper. But Bob has shown how to do it above in this case.
     

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