• Welcome to Phoenix Rising!

    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Post exertional relapses

Alesh

Senior Member
Messages
191
Location
Czech Republic, EU
I am almost sure ME is some kind of chronic brain infection. If anyone has a flu or any other infectious disease and he is made to do some physical exercise his condition always deteriorates. Why is the same effect so "puzzling" for the "scientists" dealing with ME?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,104
Location
australia (brisbane)
I am almost sure ME is some kind of chronic brain infection. If anyone has a flu or any other infectious disease and he is made to do some physical exercise his condition always deteriorates. Why is the same effect so "puzzling" for the "scientists" dealing with ME?

i think it because there too much of a stigma to cfs, even for docs and scientists as those who look to entre this field are sometimes told that this is the end of their career, especially scientists as they are studying a make believe illness. We have to wait until they can nail down the exact cause like a retrovirus i guess. Admitting to PEM would be admitting cfs is real and not a psych condition.
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
I've thought the same thing. When someone has the flu, the doctors don't say "push on and ignore it," or "keep on working but pace yourself." They say "rest in bed, drink plenty of fluids, and take something for the pain."

What's more, when you go to the doctor and say "Doc, I feel awful. I ache all over and I feel sick. I think I've got the flu," they don't say "Prove it." To me, this feels like a flu that never goes away. Why do I think there's probably a virus or other pathogen causing it? Because that's what it feels like. How do I feel? I feel SICK, just like other people who feel sick. Is that so hard to grasp?

Well, whether the docs get it or not, this disease has taught me what it will and won't allow. When I try to push through it, it kicks me in the butt. The docs can call that "post exertional malaise"; I call it being sick.