People with ME often need to advocate for ourselves to skeptical doctors, family members, social care professionals, employers, schools, or insurance providers, who demand that we perform unsafe or impossible levels of activity.
I think some of the misunderstanding comes from recent criteria (IOM/NAM & NICE) ignoring some of the most serious aspects of ME. When we talk about "exacerbation of symptoms" doctors are ill informed about what those symptoms are. We need the neurological, immune, endocrine, CNS, cardiac, etc symptoms recognized.
TRPM channelopathies causing widespread cellular dysfunction (including immune dysfunction) exacerbated by activity may be at the core of why overdoing leads to severe ME. Or red blood cell deformability causing oxygen deprivation to tissues, or any of the other findings explained in the 2012 ME IC primer.
If Drs don't know about the many biological abnormalities they will never take us seriously.
I think some of the misunderstanding comes from recent criteria (IOM/NAM & NICE) ignoring some of the most serious aspects of ME. When we talk about "exacerbation of symptoms" doctors are ill informed about what those symptoms are. We need the neurological, immune, endocrine, CNS, cardiac, etc symptoms recognized.
TRPM channelopathies causing widespread cellular dysfunction (including immune dysfunction) exacerbated by activity may be at the core of why overdoing leads to severe ME. Or red blood cell deformability causing oxygen deprivation to tissues, or any of the other findings explained in the 2012 ME IC primer.
If Drs don't know about the many biological abnormalities they will never take us seriously.
Some more about dangers of exercise here https://me-international.org/en/exercise-dangers/
I needed to hear this right now thank you very much as always for your insightful articles