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Testimony by Mary Schweitzer to (US) CFSAC (May 2013)

Discussion in 'General ME/CFS News' started by Dolphin, May 27, 2013.

  1. Dolphin

    Dolphin Senior Member

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    ahimsa, Sasha and Ember like this.
  2. Ember

    Ember Senior Member

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    To read Mary's testimony and the comments, you'd think that the ME-ICC had never been written: "I want to differentiate PEM from post-exertional relapse.... Post-exertional collapse, post-exertional dysfunction, post-exertional crash, post-exertional relapse – whatever you call it....?" Mary cites Maes and Twisk who suggest that PEM be used to differentiate CFS from M.E.:thumbdown: Her points would have been so much better supported through reference to the ICC.
  3. JT1024

    JT1024 Senior Member

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    Massachusetts
    I thought Mary's testimony was powerful. Guess I have a totally different perspective than you do Ember. I think her frustration and exasperation come from years of suffering and the ineffectiveness of the CSFAC. Yes, perhaps her references are old but that is exactly the point. The CSFAC has not been effective despite valid information, research, and clinical findings. This stuff is not new. So what is the problem with CSFAC???

    From Mary's testimony:

    A bedridden patient is a very, very sick patient. Simple exercise that you think is easy can in fact be dangerous for us. It could very well be that what is happening with bedridden patients is that every activity sends them into over-exertion, into crash mode. They are that sick. Quit trying to figure out what exercise to give them and find out what's wrong with them.

    As Irish patient and advocate Tom Kindlon puts it, “If graded exercise therapy were a drug instead of a treatment protocol, it would have long ago been banned by FDA.” There are too many adverse responses, and (frankly) not much evidence of success.

    Post-exertional collapse, post-exertional dysfunction, post-exertional crash, post-exertional relapse – whatever you call it, is there really any debate any more over whether it exists?
    Shouldn't that be the first thing you tell doctors?

    Old CFSAC meetings have already seen the findings regarding PEM. Mary is expressing frustration... not ignorance.
    ahimsa, Valentijn, Ember and 2 others like this.
  4. Ember

    Ember Senior Member

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    Thank you for your timely corrective.:thumbsup: Mary's references aren't old, and Mary is obviously an intelligent woman who's had an impressive academic career. She speaks passionately and well. But I believe that her excellent points would have been so much more powerfully supported through reference to the ICC. So my frustration should have been solely directed at the fact that the ICC is being largely ignored in advocacy. I'm genuinely perplexed (and alarmed) by that.

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