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My letter to WebMD

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
I responded to this article. I would have said more, but they only allowed up to 1000 characters in my response.

In a Feb. 17, 2011 article, Denise Mann states that exercise is safe and effective for Chronic Fatigue Syndrome (CFS). She describes CFS as severe, debilitating fatigue, pain, difficulty concentrating, and other symptoms that last for six months or longer.

This is not the illness studied in the PACE trial she cites. In the United Kingdom a CFS diagnosis only requires ongoing physical and mental fatigue. Thats idiopathic chronic fatigue (ICF), not CFS. We dont know which subjects had real CFS and whether they improved. Also, the PACE study published no information about dropouts, which is where we find information about bad reactions.

Mann also quotes Nancy Klimas, M.D, an internationally known CFS expert. But Mann fails to mention that Klimas advises against standard types of exercise. Also, Klimas recommends lab testing to establish individualized thresholds. Without this information, readers will assume Klimas endorses exercise as it is generally understood. She does not.

I think your article could cause harm. I suggest you report on what Dr. Klimas actually recommends about exercise, and clarify the questionable relevance of the PACE study
.
 

CBS

Senior Member
Messages
1,522
I responded to this article. I would have said more, but they only allowed up to 1000 characters in my response.

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.
 

Andrew

Senior Member
Messages
2,513
Location
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.
 

Sing

Senior Member
Messages
1,782
Location
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.
 

Andrew

Senior Member
Messages
2,513
Location
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.
 

dannybex

Senior Member
Messages
3,555
Location
Seattle
But, if someone is bedridden, exercise could consist simply of moving a little.

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.
 

dannybex

Senior Member
Messages
3,555
Location
Seattle
I do have my own questions about Dr. Klimas' recommendation on "exercise" for severe ME patients.

Hi CBS,

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

Thanks in advance,

d.
 

CBS

Senior Member
Messages
1,522