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Unraveling Post-Exertional Malaise by Jennifer Spotila JD

Discussion in 'Latest ME/CFS Research' started by Cort, Aug 6, 2010.

  1. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    [​IMG](Post-exertional malaise (PEM) is most likely the key symptom in ME/CFS. The realization that PEM (or a marked exacerbation of symptoms after exertion) may be unique to ME/CFS and needs to be closely examined finally hit home after the repeat exercise studies by the Pacific Fatigue Lab at the University of the Pacific (funded by the CAA) showed strange metabolic abnormalities after exercise. Now many research studies push ME/CFS patients into a PEM-like state in order to better understand the processes at play in ME/CFS. This is a topic we vitally need to know more and this should be a very interesting series of articles. Thanks to Jenny and the CFIDS Association for allowing us to repost it here. You can find the original article here. Cort)

  2. PoetInSF

    PoetInSF Senior Member

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    SF
    This is contradictory. If the safety zone is a moving target, you can't figure it out, or navigate, by trial and error or otherwise.

    This could be true for severely ill patient whose safety zone is so narrow, or non-existent, that it's as if PEM strikes at random. That's how I felt in 2008. Once stabilized however, I could tell what activity and how much of it will bring on PEM through TRIAL AND ERROR. It was the difference between walking in one direction vs. the other, or 4 reps vs. 6 reps. Now that I have progressed into mild territory, it's difference between biking a small hill twice vs. 3 times. Twice, I recover fine. Thrice, I suffer from discomfort and huge reduction in activity next day. It's as precise as it gets. (This is the brick wall of disability that I often talk about).

    Let's not define CFS just for the serverely ill. Though some remain severely ill for years, we do know that the majority improves to stabilize. We need to figure out how to best move patients from severely ill to stabilized/moderate to mild and then eventually to recovered. Obsessing about just the severely ill will not get us there.
  3. parvofighter

    parvofighter Senior Member

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    Canada
    Serious or humor?

    Poet, with all due respect, this forum wouldn't exist if "the majority improves to stabilize".
    I would submit that perhaps you need to qualify whether you're talking about:

    • CFS = out-of-shape, depressed, and intentionally sedentary patients who improve with CBT/GET
    • CFS = ME/CFS = patients with retroviral-induced/exacerbated immunological compromise with neurological, cardiac... multisystem sequelae, including death. Who improve with neither of the above - in fact face cytokine storms and permanent immunological damage and cardiomyopathic changes from CBT/GET. And who very likely are in dire need of antiretroviral therapy, a la AIDS.
    • other subgroups...
    Blanket statements that, "we do know that the majority improves to stabilize" are - to put it lightly - bereft of science, or an appreciation of history IMO. This kind of statement does little to inform thoughtful intervention, targeted to each unique etiology, and much to goad the most seriously ill patients. After all, what you are proposing is EXACTLY what has been happening for the last 3 decades and more. Patients are all lumped together, the most seriously ill ignored, and "Prix Fixe" menu of CBT/GET administered indiscriminately to all.

    The refusal to take a nuanced approach to both diagnosis (Canadian criteria vs Oxford) and treatment of "CFS" (CBT/GET for all) is exactly what got us in this mess, with ambiguous definitions of "CFS", rote treatments regardless of pathology, and clinical confusion at both ends of the spectrum....

    It is in your best interests to take a nuanced approach. After all, you might wish to consider that proponents of CBT/GET will end up with a much more robust treatment model, with a far more favorable p value, when the neuro-immune patients are intelligently removed from the equation, thanks to a diagnosis of XMRV and/or other viral/retroviral etiology, and the prospect of some honest-to-goodness infectious disease/immunological therapy.

    Somewhere in your comments above, I'm missing the win/win.
  4. OverTheHills

    OverTheHills

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    I would like to congratulate Poet on the predictability and stability of his PEM. Others alas are not so fortunate.

    While I am not severely affected my threshold for PEM varies wildly from season to season (multiple alllergies no doubt affecting it) and also with my menstrual cycle. I am very much housebound each summer (staggering from bed to sofa to bathroom) and yet in spring some years I am capable of a 2 hour country stroll without PEM consequence.

    Any idea of a GET programme for me would be laughable. I do what I can when I can trying to avoid PEM. I think the physicians Jenny quotes are describing things exactly right for my ME.

    OTH

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