AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
Discuss the article on the Forums.

My letter to WebMD

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

  1. Andrew

    Andrew Senior Member

    Messages:
    2,016
    Likes:
    1,406
    Los Angeles, USA
    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

    Messages:
    559
    Likes:
    119
    Utah
    Good for you, Andrew.
     
  3. CBS

    CBS Senior Member

    Messages:
    1,484
    Likes:
    735
    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

    Messages:
    2,016
    Likes:
    1,406
    Los Angeles, USA
    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

    Messages:
    3,412
    Likes:
    3,585
    WA, USA
    good catch on the article, andrew; well done for responding
     
  6. madietodd

    madietodd Senior Member

    Messages:
    2,541
    Likes:
    1,929
    East Coast, USA
    Nice job, Andrew!
     
  7. Sing

    Sing Senior Member

    Messages:
    1,504
    Likes:
    966
    New England
    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

    Messages:
    2,016
    Likes:
    1,406
    Los Angeles, USA
    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

    Messages:
    2,378
    Likes:
    649
    Seattle
    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

    Messages:
    2,378
    Likes:
    649
    Seattle
    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

    Messages:
    1,484
    Likes:
    735
    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
     

See more popular forum discussions.

Share This Page