The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Occupy CFS: Comparing Exercise Advice

Discussion in 'General ME/CFS News' started by akrasia, Jan 18, 2013.

  1. akrasia

    akrasia Senior Member

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    Very well done comparison and contrast between the approaches of Staci Stevens and Christopher Snell with the Klimas/Rey/Sol approach.

    http://www.occupycfs.com

    And a good interrogation of a couple of the claims made by Klimas. In her defense, over the years I've seen Klimas err on the side of optimism, perhaps to a fault sometimes. As patient accounts here show, the gains the methods of her clinics are asserting are modest, a toning of aerobic capacity, an increase in general fitness, and perhaps a better quality of life. For whatever reason, this was not conveyed very well during her talk.
     
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  2. Valentijn

    Valentijn WE ARE KINA

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    Haven't read it all yet, but it looks like a very good comparison and explanation so far. Very clearly stating that the primary focus is to not cause any ME symptom flare-up, and that daily activities count as activity.
     
  3. Sasha

    Sasha Fine, thank you

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    That's an interesting blog generally, akrasia - thanks for posting the link.
     
  4. SOC

    SOC

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    I'm very surprised at the report of Dr Klimas making extraordinary claims that exercise is curative. While I do believe that she can have patients who, because of the multiple treatments she ordinarily uses, have returned to work or athletics, I've never heard of one being "cured" by exercise alone. I don't know for certain, but I doubt she has any patients who are getting only exercise therapy.

    There may be long-term patients who have dealt with all their infections and improved their immune function, but still have energy issues. I can see in that case that rehabilitation might be in order to work on deconditioning caused by the necessary physical limitations of the illness. (Please note that I'm not saying deconditioning causes the illness, but the contrary -- that patients may become deconditioned after years of physical limitations due to the illness.)

    In my experience, activity management is critical to managing this illness. Knowing your personal AT is necessary to that management. I am happy to say that Dr Sol did not exercise me to exhaustion. She stopped me at my AT, which is substantially below the maximum effort level. I did not need data for disability paperwork, which (I think) requires maximum effort information to assess disability.

    An interesting note, my AT a year ago was no different than it was 5 years previously at a different clinic. So, even with all the changes in my condition over those years, my AT was absolutely the same. Not sure if that means anything, but it's kinda surprising. It would be interesting to see how it would change in a second day test.

    All that said, pacing and activity management has not, to my knowledge, improved my health. I believe that it stopped me from getting worse and that it helped me not defeat my other treatments by ensuring I didn't overdo. I think activity management improved my quality of life by eliminating crashes. I know what I can do routinely, so life is not always the chaotic puzzle it was when I was still push-crashing. The only things that improved my health have been medications and OI management.
     
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  5. Sushi

    Sushi Senior Member Albuquerque

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    I am one of those patients who has become stable enough with treatment to be able to do certain types of exercise--for me a pilates class done lying down with machines--reformers, cadillacs, etc. I wear a heart rate monitor and the (very good) teacher always points it out if we are about to do an exercise that is likely to raise the heart rate.

    So I manage a once a week class pretty well with no PEM. But I don't feel "better" (except sometimes a headache will ease after a class), I just know that I am preventing deconditioning and some of the problems that can go with it. So yes, it is surprising to hear Dr. Klimas say that exercise has been curative for some.

    Sushi
     
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  6. MishMash

    MishMash

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    I have said some not so complementary things about Dr. Klimas. Mainly because there is style and no substance. She does excellent, high-quality lab testing; but her treatments (Immunovir, LDN, co-Q10, etc) do not address even moderately ill patients. But she is not unique in being another self-delusional overly-optimistic CFS guru doc.

    However, I must defend her against spurious allegations that she has said exercise can cure us. She has a pamphlet she gives all her patients, basically showing you how to do mild pilates, taking breaks so as not to foment a crash. I saw her twice and she never talked about exercise being a panacea. It was simply a supplemental activity to promote overall health. She was evidently mis-quoted.
     
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  7. *GG*

    *GG* Senior Member

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    Had your condition improved over the 5 years that you got older, therefore the AT was the same?

    GG
     
  8. SOC

    SOC

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    Could be. :) Let's see, we'd expect my AT to drop, what.... 3-4 points in 5 years? So maybe I got 3-4 points better in that time. That's a nice way to look at it, anyway. :D
     
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  9. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    fwiw, Klimas specifically said it was dysautonomia which exercise could potentially fix, not ME/CFS.

    Still, she said they had found that dysautonomia and deconditioning were strongly correlated. Sorry, but correlation still doesn't demonstrate causation. Even from the good guys. Especially not since most have sudden onset. Go back to START, do not pass GO, and do not collect $200. Much more likely that dysautonomia causes those patients to be less able to keep up with minimal activity and therefore they become more deconditioned.

    Be that as it may, Klimas has a good heart and is trying hard to find biomarkers and such for us.
     
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  10. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    and no, Klimas' program bears no resemblance to GET. She specifically talked about considering what a patient was doing and breaking it up into smaller pieces, and resting up in order to be able to do certain things, to keep within anaerobic. This didn't sound at all to me like pushing people to achieve more than they can do.
     

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