🔥Telegram İfşa

🛑I wrote about what “fatigue” really means for people with long COVID and ME/CFS, and why this profoundly debilitating symptom is so often misunderstood and trivialized. (This piece also covers PEM.) 1/ theatlantic.com/health/archive…

From my experience, trying to stay just below the #PEM threshold is nearly impossible - the factors that make it so unpredictable are its fluctuations and delayed onset.

We still know precious little about PEM, but one thing's for certain--it represents an impaired recovery response to exertion. How do we know this? We had data from systems to molecules, replicated across myalgic encephalomyelitis cohorts originating regardless of patho-etiology.

There is no threshold for exertion under which a patient with PEM experiences normal exercise physiology. It is a lie rooted in ableism and toxic workout culture. The science is clear - any amount of exertion causes muscle, mitochondrial, and neurological dysfunction.

feeling that there is no place for me in the world

I can’t believe that people with ME or Long Covid have to hear or read people talking about exercise when we can’t walk or get up of bed and if we do we have to pay it afterwards all the time? Doing exercise again is a dream for most of us, but the biggest dream is just to LIVE

(1/2) We have been blown away by the public response to our initial DNA results. We’ve been delighted to be featured in a range of news outlets, radio programs & articles. A huge thanks to those who helped spread the word & have helped us put ME/CFS research into the public eye.

New research provides further proof that ME/CFS is a biological condition. Researchers from the University of Edinburgh found anomalies in 8 different genomic regions in more than 15,000 people diagnosed with the condition. Here are the details...🧵

Still hard to comprehend there is a disease that causes exertion to be detrimental to someone’s quality of life. Like wtaf

🔬Most people think mast cells are only involved in allergies or rare conditions like MCAS or mastocytosis. That’s incorrect. Research shows mast cells are active in many diseases, including neurodegenerative, autoimmune, infectious, heart, gut, and mental health conditions🧵