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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Harvard Medical School hosts Howard LeWine, Brigham and Women's Hospital bringing GET

leelaplay

member
Messages
1,576
Chronic Fatigue Syndrome: When Exercise Makes You Feel Worse
http://www.intelihealth.com/IH/ihtP...78080.html?d=dmtHMSContent&hide=t&k=basePrint

Why do none of these "doctors" get that

a) overdoing harms us

b) that many of us are at a fine balance of barely managing to survive & in order to add 1/2 hr of new activity, 1/2 hour of other basic survival activity has to go

c) I'm not sure, but I believe that there are no studies that show deconditioning to be a major factor in ME/CFS - or to show it to be worse than PEM
 

Enid

Senior Member
Messages
3,309
Location
UK
Gosh I do wish they would keep off exercise until they understand the pathologies. Well of course as with any illness or whatever op etc it is better to move about if possible as soon as one can. In the case of ME profound multisystem pathologies make this as shown by numerous studies impossible and/or dangerous.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Better than in years past, but still disgusting misinformation. Harvard Medical School: your trusted source for iatrogenic morbidity.

CAA should have been targeting all of these sources of misinformation over the years instead of putting out their own. We need a concerted organized campaign to do this. If/when I get somewhat better I would really like to do some of that. If anyone can start one up, please go for it!
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
A question to all those people... why did i wake up with a headache today? I only have it after too much physical activity. It happens almost every time after a longer trip or something similar. Never without such a trigger. Why do my eyes hurt today and yesterday they didn't?

I agree that we should do as much as is good for us, but there are certainly a lot of cases where no exercise is tolerated at all. And the idea of increasing it according to a fixed schedule is just insane.

I wish those people could go for a run, bike ride or anything with one of us who has been doing a lot of sports before getting ME/CFS and we could for one day be like we were before. That might shut them up. It's really time this stops.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Find the cause of our illness and develop a treatment that adresses that cause instead of insulting us with that crap already... We don't need to be told how to think or feel about our symptoms and we also don't need to be pushed like lazy or weak people... :headache: