These findings are replicated in a 2nd independent study with persistence of the effect of the autoantibodies when transferred even 2 years later sciencedirect.com/science/arti...

Important #LongCovid finding of auto-antibodies in patients directed to neural tissue, and then, by transferring the antibodies, recapitulated the disease symptoms in mice @cellcellpress.bsky.social @virusesimmunity.bsky.social cell.com/cell/abstrac...

Day 27. Post 27. Great thread.

2025 update: Long COVID and ME/CFS cost Germany 64.4bn € a year. More than double the entire federal transport budget (27.9bn €). Costs keep rising even as Long COVID cases fall. Only research leads out of the crisis. Full report: https://t.ly/QeMez

Great to sit down (virtually) for an interview with Carolyn to talk about what the future holds for Forward ME. We’ve been working closely with Forward ME lately and very pleased to see its recent revamp 💪

Fascinating @mecfsscience.org thread. Thanks. Really important (and big) caveats at the end to take into account 👍 But one thing that seems sure: we really need to keep looking in detail at the brainstem/neurons...

17) Simplified, the striatum acts like a gate: it integrates glutamatergic input from the cortex and thalamus with a dopaminergic signal from the midbrain and helps decide which signals are important to follow up on.

#ME/CFS is the neuro-immuno-metabolic illness that takes away your whole body’s ability to function and live. And the more you push through your energy envelope, the more it takes away and disables you. It is also still the most misunderstood, mischaracterized, neglected and underfunded disease.

Pacing is all we have, but in order to be able to pace and try to slow the illness’ progression #pwME need to be promptly diagnosed, cared for and supported. All things that most patients either lack partially or completely. The situation continues to be catastrophic around the world.

“The injustice of it, I couldn’t believe it.” Former Team GB rower @oonaghcousins.bsky.social talking about the #MECFS “scandal” where patients were told they were deconditioned and needed Graded Exercise and CBT. It is the “opposite of what they needed” and that legacy still runs “super deep”.

We asked “what would make school life easier?” Here’s what we heard. www.longcovidkids.org/post/departm... #LongCovidKids #Education #QuestionsAndAnswers

“Very severe ME is quite a unique condition in that there is effectively no NHS specialist services that are available for someone in James’ position.” Our co-founder @karenlhargrave.bsky.social speaks to @theipaper.com about the financial cost of supporting a loved one with very severe ME.

Top resources patients are using right now: • Clinical Care Guide • Communication Cards • ME/CFS Crash Survival Guide • Good Day / Bad Day Questionnaire • State-by-State Resource Directory Built to help understand these illnesses, communicate needs, and navigate care. https://bit.ly/4dJIQ6t

Sounds familiar. #Endometriosis #MyalgicEncephalomyelitis #Fibromyalgia

health is fragile, recovery is not always linear, and human worth cannot be reduced to consistent productivity. No one knows this better than people with ME/CFS. open.substack.com/pub/brittani...

This is the pilot version of our global Medical Education Hub, designed to guide healthcare professionals to reliable, evidence-based resources on ME/CFS MEdical Education Hub on #ME/CFS (several languages) World ME Alliance

Spruchband in der Kurve des 1. FC Kaiserslautern zur @liegenddemo.bsky.social Kaiserslautern 🤍 Wir danken allen beteiligten und besonders der Fanszene für das erneute Aufmerksam machen auf ME/CFS!

Thanks to @biainfection.bsky.social for the kind invitation to present the initial results of the @decodemestudy.bsky.social GWAS. In a quiz, attendees correctly identified PEM as the defining feature of #ME, ☑️ its strong female bias ☑️ and its much higher prevalence cf MS. ☑️ 💪

🤩 Our running total today has breached 900 at 915 signatures! We have 6 days to go - can we make a cool 1000?! 🌊Please share with family & friends to help this over the second wave line. We haven't had a response yet - @rcpsych.bsky.social

These are on top of all the first wave signatures. Thank you all 🙏

Thread since 2024 on the growing number of imaging studies showing structural changes in specific areas of the brainstem/ANS from #pwME/LC (Just for personal safekeeping 🤓, trying to update every 3months chronologically 🧠)

🥂 Long Covid Support 🎋 Long Covid Schweiz Kids 🎁 Supporting Healthcare Heroes UK 🎂 Connecting Minds 🎐 CFS/ME Associazione Italiana odv 😘 Stone Hill Medical Centre 🩵 Lucid Psychotherapy & Counselling 💫 Vox EM 🙌 Misfit Mental Health

🙌 Misfit Mental Health 🎉 Nightingale Continuum 🎀 Breathe Easy Sheffield 🎍 Long Covid Greece 🎑 ME Research Collab Patient Advocacy Group 😀 Creative Writing & Art Kingdom 😍 ME/CFS Association Switzerland 🎆 Long Covid Europe 🎇 PoTs und andere Dysautonomien e.V 🎖️ Cambridge ME & Long Covid Support

🤩 Let's celebrate all 23 second wave orgs who have signed the open letter to @rcpsych.bsky.social to align with current evidence: 😍 ME/CFS San Diego 🎊 Bury & Bolton ME/CFS & Fibro Support Group 🎈 Long Covid Aoteroa (New Zealand) 🪅 Alianca Millions Missing 🎏 Long Covid Schweiz

“They sometimes aren’t supported by their families. They almost always aren’t supported any longer by their friends.” Caroline Kingdon, on the profound isolation experienced by people with severe #MECFS.

Fantastic news as a phase 2 trial of a new non-invasive approach to detect endometriosis looks to be successful-if phase 3 trial mirrors the initial data, this could revolutionise diagnosis enabling speedy and non surgical diagnoses for women suffering this debilitating & under-recognised condition

Many congratulations to Hollie Byrne, Sarah Knight and the team at Murdoch Children's Research Institute, whose research paper on hypothalamus connectivity in adolescent ME/CFS was recognised as a top viewed article for 2025 in the Journal of Neuroscience Research. bit.ly/4erLnPk

⤵️⤵️⤵️⤵️ Also some of the recent most striking studies also pointing there: brainstem MRI imaging, 'broken bridge' study last year from Germany, autopsy study showing specific neural depletion, etc... Imaging - "seeing" the problem - is going to play a massive role, like it is for MS.

13) One is called “ the eccentric medium spiny neuron (eMSN) in the claustrum.” These have only recently been discovered and have been associated with educational attainment, intelligence, and neuropsychiatric disorders.

14) Another cell type that came up was the glutamatergic neuron in cerebellar white matter. Paolo notes that glutamatergic dysregulation might explain the unusual prevalence of alcohol intolerance in ME/CFS.

16) Nonetheless, I think this is currently the most important and valuable lead in ME/CFS research. Perhaps the best one we ever had. It suggests that much more research needs to focus on the brain and neural tissue in ME/CFS.

12) I think tissue results were largely similar to those from DecodeME, highlighting various brain regions such as the hypothalamus, hippocampus and cerebellum. But using gene expression databases, Paolo also found significant hits for particular brain cell types.

1) Independent researcher Paolo Maccalini published an impressive paper implicating synaptic function in specific brain regions in the pathology of ME/CFS. It’s based on three major genetic studies, including DecodeME. The most replicated signal was for glutamatergic synapses.

From the office of the Surgeon General and in the IDSA Making Invisible Illnesses Visible: Recognizing and Responding to Infection-Associated Chronic Conditions John K Iskander , Stephanie Haridopolos #LongCOVID #ME/CFS #PTLD #PAIS

Infection-associated chronic conditions: why long COVID is our best chance to untangle Osler’s Web @michaelpelusomd.bsky.social UCSF Maureen Hanson @cornellmecfs.bsky.social Steven Deeks UCSF pmc.ncbi.nlm.nih.gov/articles/PMC...

It was a pleasure to meet with Tracey Williams at the Welsh Government offices in Cardiff to discuss the possibility of all-Wales service for ME. With her background in nursing, Tracey truly ‘gets it’ and the conversation was refreshingly honest.

Reposting this after @cgatist.bsky.social prez in Berlin showing similar genetic footprints btw ME and fibro. That (very underlooked) study about how master cells mediate damage in fibro was one of the most interesting papers in months for me...

The Sick Times: 'Breaking the vicious cycle: How two German scientists seek to solve ME' Written by Martin Rücker 'A “unifying” hypothesis of the mechanisms, triggers, and risk factors for myalgic encephalomyelitis (ME), is gaining support.' thesicktimes.org/2026/05/14/b...

Hallo ihr Lieben, 💖 die #LiegendDemos haben dieses Jahr schon über 150 Berichterstattungen erreicht! 🚀 Wir haben den gesamten ÖRR (ARD, ZDF, fast alle dritten Programme, Radiosender), SZ, FAZ, DIE ZEIT, SPIEGEL, STERN, WELT, Influencer, uvm erreicht.

Incredible, devastating posts yesterday for M.E Awareness Day. I got upset & crashed. So much loss. We are through with being polite & patient as our lives erode. We are through with being made to prove our experiences again & again. We are through with being this ill with no respect or belief.

Big thank you to @davidtuller.bsky.social for covering our open letter and our statement in full. 🧮 Count update: 526 signatures & 16 orgs have signed 🙌 There's still time to sign! 👇🖇️

“What Is Myalgic Encephalomyelitis Like? Patient & Caregiver Perspectives” shares 80 firsthand accounts from people living with and caring for those with ME worldwide. BHC was honored to write the book foreword and chapter forewords for this important project by WIMEL writers. Available on Amazon.

I’m so aware that #WorldMEDay is painful for many, bringing home how tough it is to have #ME, and the seeming lack of progress. Please be reassured that many of us in Parliament do care, and are working at bringing about meaningful change. Change is inevitably slow, but I’m really encouraged.

Quelques photos du rassemblement à Grenoble pour réclamer droits, soins adaptés et recherche pour les personnes atteintes de l'encéphalomyélite myalgique. En attendant un post plus détaillé ! #voxEM #EncéphalomyéliteMyalgique #emsfc #mecfs #MEAwarnessDay

I wasn’t planning to write anything for #MEAwarenessDay this year but I’m at my Mom’s & she pulled out a bunch of old photos for me & I’m just so angry for this little one. She deserved better than to have her fate sealed by misogyny & ableism before she reached 8 years old. #GreatestMEdicalScandal

The Sick Times: 'Thousands “lie in” for German ME protests' Written by Heather Hogan thesicktimes.org/2026/05/12/t...

France needs this more than ever. The country falls so behind... It deserves advocacy voices that follow top updated international science, do not fear to include the name of our illness despite the historical stigma, and build international synergies. BIENVENU(E)S! Merci! 🙏 #ME #LongCovid

Dans le journal d’ARTE, à partir de 3min10, un aperçu des manifestations allemandes ayant lieu en mai pour une meilleure prise en charge de l’EM/SFC et du covid long. www.arte.tv/fr/videos/12... Quelques commentaires ⬇️

As always, I will repost this today #MEawarenessday #MECFS #millionsmissing The irony is, that in comparison to now, I was well when I wrote this. And yet in comparison to healthy, I was so so far from being ‘well.’ inews.co.uk/news/health/...

It's Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) day of awareness. For the last 8 years, my wife has been bedbound. She can't bathe, can't watch TV, can't get herself to the bathroom, often can't speak. There are MILLIONS of people with her condition—but you never hear about it.