Just observing that parties who consistently say they back vulnerable communities now have an opportunity to actually back that up in practice by loudly committing to policy to support those impacted by Long Covid, if elected - this is what aligning to the values you say you have actually means 💡🤔
The immune system going rogue and attacking healthy tissue seems to behind some cases of long covid, a discovery that could open doors towards treatments
People really memory holed-covid, due to a huge far right propaganda effort. That's why all you hear about is lockdowns, and not:
- hospitals out of capacity
- Skype calls with family members in quarantine as they died
- bodies stored in freezer trailors
- mass graves in NYC
My old sleep neurologist said the same thing when I told him I was taking it. I didn’t really see an impact positively or negatively, so stopped taking it when the bottle ran out 🤷♀️
Some #LongCovid news—Rep. Valerie Foushee has introduced a resolution to recognize Long Covid Awareness Month!
🧵 on how you can support this resolution—and help pave the way for further action!
I introduced a resolution to recognize March as Long COVID Awareness Month to raise awareness about the millions of people living with persisting symptoms after a COVID-19 infection.
www.congress.gov/bill/119th-c...
This makes me want to cry. Thank you so much, Congresswoman.
Friends with ME/CFS who have had an upper scope & colonoscopy - did it (including the prep) set off PEM for you, and how badly?
Please donate & share to help a #pwME who has been involuntarily committed to psychiatric ward - #MECFS is not psychological! whydonate.com/fundraising/...
I’ve been so curious about that!
Important piece of the article -
I sometimes wonder if people think we’re exaggerating when we say ‘there’s no medical help for ME/cfs’ but there’s genuinely almost nothing. One fairly useless course (exercises, condescending ‘advice' and CBT) and maybe some low dose amitriptyline, which did fuck all for me.
Hate that we still need to prove this, but so glad someone is doing the work!
Loooove her
Desperately needed this little sliver of hope today
Ghana's President John Dramani Mahama, speaking in New York on Tuesday, criticised the U.S. administration for what he described as normalising the erasure of Black history, warning such policies could have ripple effects elsewhere. www.reuters.com/world/africa...
The irony of me being in a PEM flare from the mental exertion of trying to find answers about PEM… 😞
Yeah, I’m so befuddled 🤷♀️
That’s what’s so frustrating, like instead of thinking, “hmm, I think I have PEM, therefore I may possibly have ME/LC” they’re insisting they have xyz completely separate illnesses and those illnesses give them PEM
It’s so hard to navigate, like I don’t want to argue with people, but I also don’t want to let misinformation slide. Lately I’ve seen people with MS, muscular dystrophy, fibro, general chronic pain, etc. claiming it lately and I just don’t understand 😵💫
Announcement for ME/CFS Advocacy Week 2026 starting March 23-27 with a virtual kickoff call on March 23 at 12 pm PT/3 pm ET. Register at tinyurl.com/MEActionAdvo2026. Text-based graphic with a megaphone in top corner, text in center, and logos in bottom corners.
ME/CFS Advocacy Week 2026 starts today and it's not too late to join! Solve M.E. & #MEAction Network are building the case to make ME/CFS part of standardized medical education.
Register: https://tinyurl.com/MEActionAdvo2026
Virtual kickoff call today at 12 pm PT/ 3 pm ET!
#MECFS #pwME #MedEd
I’m seeing more and more people claiming to have PEM but not ME/CFS. Is there some new study or something I missed? Is it not pathognomonic?
"there is no cure for long Covid"
Also no supports while you recover - financial, physical, mental health
The “long covid is going away on its own“ myth was started by an influencer named “Health Nerd” who is an Australian epidemiologist who thinks US kids shouldn’t be vaccinated against COVID-19 (cuz AUS/UK don’t) and that NYC should have ran unethical RCTs on hospital visitation in 2020. Not science.
You cannot optimize yourself enough that you will not die.
The journalist who coined the phrase “the #GreatestMEdicalScandal of the 21st century” got interested in ME after this same psych lobby accused him of spreading Long Covid by writing about it. He was so taken aback by their absurdity that he investigated further:
www.theguardian.com/commentisfre...
For those lucky enough to live outside the nightmare world of Myalgic Encephalomyelitis, the man discussed here (Simon Wessely) leads a powerful psych lobby w/ a long history of gaslighting sick people—from Gulf War vets to 9/11 first responders to poisoned Iranian school girls to ME & Long Covid
A young person lies in bed in a dark room, with an eye mask over their face and earplugs in. The text reads, "The Sick Times. Severe people may hold answers to Long COVID. They must be included in research. By Sevda Sarıkaya."
"The most severely affected are not on the margins of Long COVID; they represent its truest and most revealing form. The future of Long COVID research will be measured not by how many trials are launched, but by how many lives they truly represent." - Sevda Sarıkaya, Severe people may hold answers to Long COVID. They must be included in research.
People with the most severe #LongCOVID symptoms represent the most clinically urgent population, yet they remain absent from the evidence base that guides care. They are not beyond the reach of science; they are where real progress begins.
Read more from @neurologistmom.bsky.social: bit.ly/49TMXdz