Dear Cort,

Quote Originally Posted by Cort View Post
Thanks Marteenz - I think I butchered your name again :) - I appreciate your thoughtful post.

I don't want to be perceived as an exercise advocate for ME/CFS. My guess is that at best it could only help some people in limited ways. I don't even think of it as a treatment for chronic fatigue syndrome. I think of it as a way for some people to manage their illness better - to live within the confines of the illness better. I'm getting older and I should really try to get some muscle tone back.

Lifting even small weights, however, has always brought on muscle stiffness and pain - interestingly across my entire body not just the muscles involved. (This makes me think that it is the pain circuits in the brain that are involved - that they all flare up once I start to exercise, and studies have shown that the pain sensitivity in CFS goes up after we exercise rather than down as it does in normal people. (Another fascinating fact that seems to be largely ignored).

But still I am getting older and I really should try to do a very limited anaerobic weight lifting trial - lifting a five pound weight once a minute or something like that. That's how I envision these 'exercise programs'. I don't think they're the way out of CFS I've tried just about everything I could - but I've never tried to do this really finely tuned, very very slow, chart my symptoms type of program.

OK - then we seen to really agree, apart from the fact that you really are much more of sports and exercise person - in principle - and that I am really also with Mithriel: I really don't see why physical exercise, as such, should be part of any serious and sound medical packet for the treatment of people with ME and - here I am with Kim, very much also - I DO see many good reasons why it should not be part of any serious and sound medical packet for the treatment of people.

Finally, I can assure that while I am no sports and exercise person I was quite fit when I fell ill - skiing, farming, walking looooong walks - having to do for years far more exercise in the sense of simple bodily exercise (there is no help for me in Amsterdam - on the opposite!) it had no influence on my condition except in ME-ways (more problems with more 'exercise', on average, with high probability) and also no gains in muscle tone or such things through more exercise, including lifting far more than I wanted.

So 'programs of physical exercise' in any packet of sensible medical treatments for ME are a very definite NO-NO for me, also because - apart from the other ills they bring - they play in the hands of the Wessely school and, meanwhile, a horde of physical therapists and psychologists for "advice" and "education" hungry for income.

I think Kim and her many apt excerpts by many other members are really right here, wholly regardless of any bias on my part for Kim

Cognitive Behavioral Therapy and Graded Exercise Therapy
and you cannot speak of one without addressing the other

!!! Are Dangerous !!!

There are grave risks that it will worsen symptoms for PWC
There are no means to predict who it will harm
It could be you
It could be me

For a mere 10-20% chance of improvement
You risk 100% decline


and without any knowledge of what may have irritated you in her (posts). Also, I don't believe at all she is against you, Cort - which I don't say you did say, but in case you would think so: she is against some of your defenses of 'physical exercise' and for patients interests and concerns. Which is not to say you are not, but that I think here Kim and the others are more right than you are - or at least were or seemed to be.

Best wishes,

Maarten (also yclept MAARTENSZ )

P.S. Who is a strong proponent of KEET and CYT (Kimmified Exciting Exercising Therapy, if any, for those capable of handling it, personally and Nihil Obstat) and - especially: - large doses of - Creative Yodeling Therapy (<- seem to like that one (and medicalese alphabetsoup) ;) - for then we're talking real science.