Important new international #fibromyalgia study: "The genetic architecture of fibromyalgia across 2.5 million individuals" www.medrxiv.org/content/10.1... Someone on an ME/CFS forum has said: "I see some familiar genes from DecodeME*: RABGAP1L, OLFM4, DCC" *Similar ME/CFS study #Fibro #FMS #FM

This is extremely bad. In the past, the Congo would have leaned heavily on USAID. That's no longer possible. "...Just 1,740 people in three health zones of Kasai province have been vaccinated as of Sept. 21. The Bulape zone alone has a population of more than 212,000."

"Never-Words for Patients With Invisible Illnesses – Liza Di Leo Thomas, MD" From: When We Don’t Have All the Answers: #LongCOVID and the Need for Humility in Medicine www.ochsnerjournal.org/content/25/3... #invisibleillness #LongCovid #chronicillness #hiddenillness #ChronicIllnesses

I’m so excited. Someone named “Jennifer Brea” signed my petition. I hope it was the Jennifer Brea. Thank you! If she can do it you can do it too. I’m aiming for 15.000 signatures #MECFS #pwME www.change.org/p/soy-discap...

I have compiled a humble guide with the product suggestions of #MECFS patients. It's the first draft, please feel free to correct, comment and add. #pwME #MillionsMissing #MyalgicEncephalomyelitis #MyalgicE www.canva.com/design/DAGwL...

Which products have been life saving or made your living more comfortable (and please add where are you located to know where you bought them)? If you have links please share them if you have the capacity #MECFS #pwME #MillionsMissing #CanYouSeeMENow #MyalgicEncephalomyelitis #MyalgicE

Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights

This is Isla at age 8. She died at age 18 with severe ME/CFS. Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.

My birthday is in 2 days. Help me celebrate by helping me do the work to advance research and care of MECFS and Long Covid at @renegaderesearch.bsky.social Donate to my birthday fundraiser if you are able. Any amount helps tinyurl.com/Renegage-Res...

What “back to work” looks like for some of us severely disabled from long COVID ❤️

Hi! Looking for an ME specialist for a severe USA patient, someone that does virtual appointments as she can’t move. Any recommendations? #help #MECFS #MillionsMissing #pwME #severeME

Hi! Looking for an ME specialist for a severe USA patient, someone that does virtual appointments as she can’t move. Any recommendations? #help #MECFS #MillionsMissing #pwME #severeME

Physically and emotionally destroyed. #MECFS is reducing me to ashes. Don’t feel able to do anything #pwME #MillionsMissing

Today's action is the single largest mass-illegalization event in US history. 350,000 people woke up this morning with legal status, living and working here with official permission. They'll go to bed as undocumented immigrants facing deportation.

🚨🚨🚨 The Supreme Court has just allowed Trump to strip as many as 350,000 people of legal status, effectively IMMEDIATELY. Every Venezuelan granted TPS through the July 31, 2023 designation has been rendered undocumented as of now, significantly increasing the undocumented population.

The BMJ has published our response to the opinion piece by Miller et al.. “The solution that Miller et al. propose—the interpretation of ME/CFS as "biopsychosocial"—is in fact itself a major burden for ME/CFS sufferers.“ Biopsychosocial approaches to ME/CFS provide neither a cure nor hope. 1/

I am so sorry to say that Walker Storz, a person with severe ME, has passed away. Walker was an essayist, a poet, a musician, and someone I chatted with many times via email. A beautiful essay he wrote in 2022: www.todaysamericancatholic.org/2022/05/mere... May his memory be a blessing.

#MECFSAwarenessMonth – Day 20 2018: Emma Shorter tells the Scottish Parliament how Graded Exercise Therapy left her needing a wheelchair. Prof. Jonathan Edwards submits evidence saying patients were vilified but they were right — the science was poor quality.

It is sad to see @bmj.com platforming quack therapies in 2025 The mind-over-matter approach to #MECFS has been debunked for years, but a cadre of psych devotees in the UK persist in peddling evidence-free miracle cures Pure and utter pseudoscience #pwME #LongCovid @georgemonbiot.bsky.social

Friends, please spread the word that e. is offering to match donations to MEAction, OMF or any c3 org that works on ME/CFS—and then her employer will also match that! The employer match has a limit but hers does not 👀

Hey 👋 @johncusack.bsky.social You’re a Jo(h)n on our radar 👀 thesicktimes.org/2025/03/31/t... Will you look into #GreatestMEdicalScandal & help us bring #MillionsMissing back to safety (and life)?🙏🛟Learn more at johnvsjon.com #JohnVsJonVsME #MyalgicEncephalomyelitis #MEAwarenessMonth

I’m sending out a @johnvsjonvsme.bsky.social #MillionsMissing #DisabilitySOS to health justice leaders #EndTB - doctors, authors, and advocates whose work I appreciate immensely: @joiamukherjee.bsky.social @mariasmilios.bsky.social @johngreensbluesky.bsky.social @vidyakrishnan.bsky.social (1/8)

Quite disheartening to return from 10 days working with some of the most important and relevant #MECFS and #LongCOVID researchers in the world and to read this drivel being allowed through from @bmj_latest. Let's be unambiguous about this: BMJ has www.bmj.com/content/389/... 1/

F*ck the BMJ. Their timing is despicable and cruel. To not only write but commission an opinion piece on ME Awareness week, an emotionally triggering time for most #pwME, featuring someone who promotes pseudoscience and debunked studies. Do no harm? More like do as much harm as possible!

It’s ridiculous that ME can even take language away. I was fluent in German to the point I was able to think in German and comfortably navigate the bureaucracy and living in Wien. But now I’m bedridden in a French speaking place and no energy to maintain my German. So it’s slowly slipping away.

When I first got #MyalgicEncephalomyelitis in 1991, the CDC estimated that 200,000 Americans had it. Now they put that figure at 3.35 million & most researchers think it's far higher. The CDC & NIH each committed institutionalized malpractice re post-infectious illness. #MillionsMissing Day

🟦La #EncefalomielitisMiálgica es una ENFERMEDAD NEURO-INMUNO-ENDOCRINO-METABÓLICA.

@monicagarciag.bsky.social hoy es el día mundial de la #encefalomielitismialgica. Cientos de miles de pacientes son mal tratados por la sanidad por falta de conocimiento. Usted no ha hecho hoy ni una mención. Escúchenos, nos morimos en vida. Esto no es vivir, es solo sufrir #EMSFC

Nothing new to say this #MEAwarenessDay. My brain’s wrecked, my body’s broken, and after 27 years, nothing has changed: no progress, no treatments, no cure. It's #StillTheSaME and the fury burns. Sending love & solidarity to you all. #LeftToRot

The lesson is that yes, kids can get infection-associated chronic diseases like #MECFS. Predisposing factors include hypermobility or orthostatic intolerance. Learn so kids in your life don't have to go through what I did. The Pediatric Primer: pubmed.ncbi.nlm.nih.gov/28674681/ (14/14) #MedSky 🧪

Anyway, that's what I was thinking as I was gasping for air for hours today, along with: I have to find another way to address autonomic symptoms. And hoping that this doesn't precipitate such a bad crash that I can't make #MillionsMissing this year. (13/14) 🧵

And what I think is: I could have had a diagnosis of #MECFS at age 11 and known what to watch for when I started getting sick as an adult. When I think of how differently my life could have gone if any of the adults around me had really listened, I'm angry on behalf of child-me. (12/13) 🧵

This is part of why I find the two spikes in diagnosis so relevant and interesting. But what a lot of people may not know is that many folks experience symptoms as kids and then remit before experiencing much worse symptoms the second time around, as adults. (11/14) 🧵 bsky.app/profile/did:...

Since my mom isn't normally out of her mind, I can only imagine what the doctor must've said to her. I had long since forgotten this to the point that #MECFS didn't even occur to me as a potential diagnosis when I was in my late 20s/early 30s when I was much, much sicker. (10/14) 🧵

I went from a plump, happy kid at the top of the 'norm' BMI down to the lower middle of the 'norm' BMI. To the point that when I returned home, people did double-takes and told me my face looked different. We ate McDonald's salads and Carnation Instant Breakfasts all summer. (9/14) 🧵

A kind of terror flashed across the doctor's face. "No, children don't get that, and I think this conversation is over." Never been hustled out of a doctor's office so fast. He told my mother that she'd let her kids get too fat & to put us all on a strict diet that summer. Which she did (8/14) 🧵

Like off-and-on low-grade fever. It was weird for me to go 2-3 days in a row without feeling fluey and having a 99.0 temperature. And then in the office I got a sudden suspicion. I looked up and said, "do you think I might have what my mother has?" (that would be #MECFS ) (7/14) 🧵

"I'm also tired," I said. "I noticed I get tired a lot more easily than my friends. I like to go biking but then I get wiped out." "You're out of shape," he said, despite that I had just described doing a physical activity I enjoyed. I went on to describe a handful of other ME symptoms... (6/14) 🧵

"It's not just that," I said. "That part was just weird. It's happened a few times. I should be able to breathe, right?" "You were being too active. You must be out of shape. You gained a few pounds." Folks, I was a) 11, and b) within the normal BMI. Moving on. (5/14) 🧵

"This summer I noticed I had trouble breathing." I described air hunger. "When you exerted, you got out of breath," my doctor reframed. "No, it wasn't when I was being active..." "When, then?" "Well, once I was on the stairs--" "You were walking up the stairs. You were being active." (4/14) 🧵

After sifting through my health issues, my guess is that I contracted very mild #MECFS at age 11. I remember I went to my pediatrician, and during the time they ask you if anything new has happened, and you're supposed to say, "no, doc! I'm a child & therefore invulnerable!", I said, (3/14) 🧵

This is also my longest-running symptom. Long before I would have been diagnosed with #MECFS, I was experiencing air hunger, particularly during the summer on days before it would storm. (2/14) 🧵

The scariest symptom for me is air hunger. I experience this when the air pressure drops precipitously, because when air pressure is lower, there is less oxygen in each breath. When you already struggle with oxygenation, the result of getting a little less O2 in each breath can be dramatic. 🧵

Danke Berlin 💙 @liegenddemo.bsky.social Fotos: @mariahwa.bsky.social #MECFS

Jena und ganz Deutschland legt sich hin - und setzt bei der #LiegendDemo2025 ein Zeichen für mehr Pflege, Forschung und Engagement für ME/CFS. #MECFS, #LongCovid und #PostVac sind keine Randthemen. Sie betreffen Hunderttausende – und werden oft noch übersehen. (1/3)

#ME #MECFS #MECFSAwarenessday #Liegenddemo @liegenddemo.bsky.social LiegendDemos in Berlin, Fulda, Jena, Augsburg heute am 10.5.2025 #MEAwareness Demonstrations in Germany on 10th May 2025

Severe #MECFS patient from #Ukraine is looking for help. His parents don’t believe in the illness. Anyone with information in Ukrainian or that could speak Ukrainian to help him? #pwME #SevereME #MillionsMissing #NEISvoid #help #Ukraine

Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome Links in image: www.cochranelibrary.com/cdsr/doi/10.... retractionwatch.com/2025/01/23/t... Screenshot from the AMMES May email newsletter #MEcfs #CFS