1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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My letter to WebMD

Discussion in 'Action Alerts and Advocacy' started by Andrew, Jul 27, 2011.

  1. Andrew

    Andrew Senior Member

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    I responded to this article. I would have said more, but they only allowed up to 1000 characters in my response.

    .
  2. LaurelW

    LaurelW Senior Member

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    Good for you, Andrew.
  3. CBS

    CBS Senior Member

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    Andrew,

    Nice job. Very well put.

    I do have my own questions about Dr. Klimas' recommendation on "exercise" for severe ME patients. I think she should be talking about "activity" not "exercise;" that it is likely most patients are more doing too much, rather than needing to do more (unanticipated demands often necessitate we exceed out so called "energy envelopes" - we ought to keep a little in reserve just in case we need to attend to life's unexpected demands); and that recommending exercise for ME patients seems like recommending that farmer's need to go jogging and lift weights after a day on the farm.

    That said, I have a lot of respect for all the Dr. Klimas has done for ME patients, I just can't agree with her on this particular subject.
  4. Andrew

    Andrew Senior Member

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    I don't think "activity' is a good term. Activity can mean a lot of things. As I see it, the exercise for with CFS patients is supposed to: 1. require movement in specific muscle groups that are not being utilized enough while 2. not pushing the patient into post exertion symptom exascerbation (PESE). Both are required. So obviously, if someone is working full time and any exercise will put them into PESE, then they should not do any. And if the exercise does not leave enough reserve, then it is not fulfilling number two. But, if someone is bedridden, exercise could consist simply of moving a little.
  5. WillowJ

    WillowJ Senior Member

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    good catch on the article, andrew; well done for responding
  6. madietodd

    madietodd Senior Member

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    Nice job, Andrew!
  7. Sing

    Sing Senior Member

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    Thank you, Andrew! Very helpful discriminations you made, adding to this article writer's understanding and that of those who read it, plus responses. It is such a key point about PEM, which is such a distinguishing feature of ME/CFS.
  8. Andrew

    Andrew Senior Member

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    Thanks for the words of support. I didn't think of it before, but maybe they will post this. If anyone happens to run into it, please let me know.
  9. dannybex

    dannybex Senior Member

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    Exactly. I know a woman who at one point was bedridden for two years...and she said that for quite a bit of that time, the only 'exercise' she could do was taking a series of deep breaths.

    She was sick for 16 years, but very slowly got better and went back to school about 3 years ago. She relapsed a bit last year, and is down to 70-75% functionality, but doing so much better than before.

    BTW, great letter Andrew.
  10. dannybex

    dannybex Senior Member

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    Hi CBS,

    I'm curious...do you have a link quoting Klimas recommending exercise for severe ME patients?

    Thanks in advance,

    d.
  11. CBS

    CBS Senior Member

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    Hi Danny,

    I don't want to distract from the main issue on this thread (Andrew's well written letter) so I've responded to your question on a thread that is more directly focused on the first Klimas exercise video. Here's the link: http://phoenixrising.me/forums/show...ty-Center-Pt-I&p=195678&viewfull=1#post195678

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