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crashed after U.S. doc recommended exercise?

medfeb

Senior Member
Messages
491
Hi

I am looking for a few U.S. patients who were given a treatment recommendation of exercise by a U.S. doctor for a diagnosis of CFS or ME and as a result of that therapy, became worse for more than just a few days.

I know some patients were told to exercise before they received a CFS or ME diagnosis. But in this case, I am looking for patients who already had a CFS or ME diagnosis for which the doctor then recommended exercise. Especially interested if the recommendation came from a major center like Mayo Clinic or the Cleveland Clinic but not required.

If this happened to you, please either PM me or email medimmock@gmail.com. I will do my best to reply to all emails.

Thank you for your help.
Mary Dimmock
 
Messages
15,786
Thank you for the post, Inester7. Do you mean this group?
MECFS SAFE EXERCISE PREP? Its the only group that I see for "ME/CFS exercise group" on FB
I'd stay away from that one. Actually, I do stay away from that one :p It's run by a control freak who has strict rules for everyone else regarding exercise, but brags about flaunting those rules herself. Very annoying. There's also a lot of rules about who can post, and how long they have to be in the group before they post, and no one can ask any questions unless they've read every document.

Basically there are various sets of rules depending on whether you're the leader, the inner circle, or a newbie. I'm not sure staying on long term is a viable option without divulging personal information to the leader - she insists on being added as your "friend" at some point, meaning she can see everything on your personal facebook page.
 

u&iraok

Senior Member
Messages
427
Location
U.S.
I'd stay away from that one. Actually, I do stay away from that one :p It's run by a control freak who has strict rules for everyone else regarding exercise, but brags about flaunting those rules herself. Very annoying. There's also a lot of rules about who can post, and how long they have to be in the group before they post, and no one can ask any questions unless they've read every document.

Basically there are various sets of rules depending on whether you're the leader, the inner circle, or a newbie. I'm not sure staying on long term is a viable option without divulging personal information to the leader - she insists on being added as your "friend" at some point, meaning she can see everything on your personal facebook page.

I'd like to see what the outcome was with anyone that exercises with ME/CFS.
 
Messages
15,786
I'd like to see what the outcome was with anyone that exercises with ME/CFS.
Based on my limited experience, the ones who were exercising were also crashing a lot, even with whatever rules they had in place. And the one exercising and crashing the most (the administrator of the group), was hiring household help so she could exercise instead of cleaning and such.

Some of the more scientific information was good and interesting, but I think exercise programs are almost always a futile endeavor for ME patients.