Everyone from my former life is traveling Europe and getting promoted, while I’m rotting in my childhood bedroom and saying goodbye to the last of my twenties.

Me, no I’m not resting.  This is an extended power nap phase. #mecfs #pwME #Disability

"There is what appears to be a massive scandal happening in our country right now, which hardly anyone is talking about because it's victims are rendered, through their circumstances, largely silent." Thank you Natasha Devon LBC #ExposeMENow #GreatestMEdicalScandal #ThereforME

Having to buy clothes for sleep is so lame I wanna wear day clothes

I’m 42 today. And today there are exactly the same number of treatments for the devastating condition M.E as there were in 1982: NONE. Decades of #MECFS outbreaks, millions of sufferers, countless opportunities to study immune insult mediated chronic disease -squandered. Why…?

Whitney Dafoe My feed shows me such a contrast today.. Matthew Hodson who lives a full life with HIV due to the (eventual after much stigma) investment in research for treatments, followed by Whitney Dafoe who like many lives with severe #ME awaiting the much needed research

Thank you all so much for the kindness and support ❤️ But I feel I need to clarify that I didn't post this because I feel hurt by this comment, I could care less if some random person on X across the world thinks I "don't have ME". The only reason these voices are as loud as

Tracey Burgess Sam Liccardo NIH The biggest slap in the face is that Ron has gotten million$$$ of NIH-funded grants over his lifelong career in genetics...until he asked for money to find answers for ME/CFS. Those were denied. Never a good reason why.

This LACK of protocol in our NHMESS hospitals for SEVERE M.E. is a murderous disgrace & I will NOT mince my words. Let’s get ME Foggy Dog letter ✉️ trending #meawarenesshour #MURDERinME SIGN ✍️ 🔻🔻🔻 organise.network/actions/petiti… #pwME

Can the ME Community help ME Foggy Dog get more signatures on this petition and get it trending during ME Awareness hour this evening? ow.ly/3yKp50TfbNS #MyalgicEncephalomyelitis #VerySevereME #SevereME

Sometimes just being conscious is too much energy expenditure when #MECFS patients are in a crash and often too much for #SevereMECFS patients period. This is why severe patients sometimes cant get better, because simply being alive uses more energy than they can sustain and

I made this short (90 sec) video of me out of breath without physical activity or mental exertion. Something I believe a lot of #MECFS and #LongCovid patients experience. I hope to make more videos about everyday life experiences with #SevereMECFS. ❤️ youtu.be/wIjAXhNnbnk?si…

Any ladies out there use female urinals in bed? Any recommendations? Tips?

Ron putting tangible progress for ME/CFS patients ahead of any personal benefit. This is a beautiful thing.