Without a proper diagnosis and therapy severe ME CFS can lead to deadly complications and a deadly absence of care! I believe most people with severe ME/CFS can testify that they wouldn't be alive anymore in a developing country and without any proper care. Gates Foundation

Many of the people I knew who got severely ill with ME/CFS around the same time as me are now either dead or too sick to speak. I don’t believe they had to die. Very severe ME develops in an environment of neglect, preventable stressors, and an absence of adequate care. I hope we

In retrospect, becoming a moderate ME/CFS patient feels like it was inevitable for me. But progressing to very severe—that was man-made. Preventable. People don’t grasp how vast the gap is between moderate and very severe ME/CFS. It is the total loss of life as you knew it. And

I'm sick of #MECFS being compared to a never-ending flu. This ain’t no f*ing flu. I feel like *every* system in my body is broken and in pieces. I am mentally and physically 1% as alive as I used to be…But even if you have a very severe flu and are bed bound, the *never-ending*

So there was a lot of talk recently about a paper discussing COVID-19 micro-clotting. I thought I’d break it down in simple language. The paper looked at why tiny blood vessels get blocked in severe COVID-19. They discovered, it is not the usual clots we hear about. 🧵👇🏻

I am not sure why studies keep making the same mistakes. Including mild patients with 3 months onset - high chance of natural recovery also in placebo arm. Exclusion of 24months into disease - exclusion of cases with low chance of recovery and more severe?

Sometimes I feel like I'm in outer space watching earth from far off, floating in a space suit alone. But on better days, I get to come home and be a part of the world and it feels so good to be home. But then I get spit out into the darkness again, trapped and alone and

Story time with #PedroPascal: #GreatestMEdicalScandal and #SevereME Learn about Myalgic Encephalomyelitis (Tap for full screen and music)

Barcelona study with 13 participants found that healthy lab-grown muscle exposed to ME/CFS or Long COVID blood quickly lost strength, briefly boosted metabolism, then entered mitochondrial and structural collapse with prolonged exposure. iopscience.iop.org/article/10.108…

🔬New study shows SARS-CoV-2 causes direct damage to heart cell mitochondria - even months after recovery - helping potentially explain Long COVID heart symptoms like chest pain, palpitations & fatigue. Been waiting to have time to read this paper. Let’s break it down. 🧵