1) An overview of positive developments in ME/CFS research 👇 The European Union awarded €7.5 to a ME/CFS consortium that will conduct multi-omics and test biomarkers in hundreds of patients. It will connect and harmonize five biobanks across the continent. bsky.app/profile/mecf...

ME/CFS Science@mecfsscience.org · last mo.

1) 🇪🇺 Good news! The European Union has awarded € 7.5 million for a big ME/CFS consortium that will study biological mechanisms in hundreds of patients. This is a major milestone for ME/CFS research in Europe.

It took me over 2 months to watch this video, a minute or so every couple days. On 0.4 speed. In black and white. No sound, only subtitles. I still probably overdid it. Perhaps that’s a testament to how severe ME/CFS can get. But i just wanted to share it because it’s really really excellent.

Anil van der Zee@anilvanderzee.bsky.social · 3mo ago

‼️ BURIED ALIVE WITH M.E.‼️ For #MEAwarenessMonth I made a severe ME body‑bag “dance” film about death within the ME community. youtu.be/XhrAhGkrGuQ?... I also joined the online expo ME Kills by A Quiet Storm, which goes live on May 12th, 1/ #pwme #myalgicE #millionsmissing

Petition to retract the irresponsible pseudoscientific article about #LongCovid in WIRED: www.change.org/p/wired-maga...

Sign the Petition

WIRED Magazine, Retract "The Painful Truth About Long Covid"

change.org

Landlord won‘t let me install AC in the only way that‘s accessible to me. So this week I‘ve been cooking. Top floor appartment + Urban heat island + massive concrete building heat sink means despite flushing windows night time temps aren‘t dropping below 27 C.

1) 🇳🇿 A survey in New Zealand among 333 ME/CFS and Long Covid patients found that half of the respondents had experienced food insecurity in the past 12 months.

If you think that medical research is expensive, wait until you find out how expensive denial is. Literally paying more for worse outcomes for everyone but if you never see the bill it doesn't feel real. Leeroy Jenkins-ass policy.

ME/CFS Research Foundation@mecfsresearch.bsky.social · 2mo ago

2025 update: 318.8bn € in cumulative costs from Long COVID and ME/CFS in Germany since 2020. More than 60 % of Germany's entire federal budget. Almost three times the defense budget. And the sum grows every year. Only research breaks this. Report: https://t.ly/QeMez

Cw: suicide A post in the long-haulers subreddit reports a woman in Vancouver, Canada died recently of suicide after years of struggling with Long COVID and having her symptoms dismissed & psychologized by all around her ❤️‍🩹 www.reddit.com/r/covidlongh...

From the covidlonghaulers community on Reddit

Explore this post and more from the covidlonghaulers community

reddit.com

1) This video shows a unique care unit in Norway called Røysumtunet for people with #severeME & very severe ME. It is one of the only places where the sickest patients can receive specialised care. We need this everywhere!! #pwme #myalgicE #millionsmissing #severeME

A well-written account of someone with #SevereME and some of the issues she has to deal with. #pwME #MyalgicEncephalomyelitis virology.ws/2026/01/27/t...

1) Interesting blog by Siebe: - "How I learned to doubt a paper" He explains how he gradually became more skeptical of claims on ME/CFS and Long Covid in scientific publications and learned to focus on methodology, replication, statistical analysis etc.

Erinnerung an diese wichtige Petition zum #ME/CFS Aktionsplan. Wenn die Stimmen der Betroffenen bei diesem bisher in Gesundheits- und Sozialsystem jämmerlich gelöstem Problem nicht gehört werden, ist die Gefahr groß, dass aktuelle Missstände perpetuiert werden. www.openpetition.eu/at/petition/...

PAIS-Aktionsplan ohne Betroffene: Diese Mindestanforderungen müssen im Aktionsplan verankert werden - Online-Petition

Wir fordern die Bundesregierung, die Bundesländer und die Sozialversicherungsträger auf, im Aktionsplan zu postakuten Infektionssyndromen (PAIS) zentrale Mindestmaßnahmen rasch und verbindlich zu vera...

openpetition.eu

Ö. Ges. für ME/CFS@mecfs.at · 3mo ago

4 key things about the new £4.7m ME/CFS DNA study DNA uses 4 chemical letters — A, T, G and C — to encode the instructions to build and run a human. The genome contains 3 billion of these letters. 1️⃣ This study uses full genome sequencing to read all of them, while DecodeME…

This is monumental news. Apparently the 6000 whole genome sequencing (WGS) samples funded here is the largest WGS Genetic Study of a single illness to date. This feels very symbolic, ME/CFS Research going from lagging decades behind to being on the cutting edge. Hopefully this is a turning point.

Tom Kindlon@tomkindlon.bsky.social · 3mo ago

"Major funding secured for Sequence ME & Long Covid, a DecodeMe project" (11 May 2026) "...£4.75m from the UK government..." www.actionforme.org.uk/major-fundin... The webpage includes more information on the project #MEcfs #PwME

It's 2026 and sick people still have to resort to protesting against mass negligence from the medical profession. Because absolutely nothing was learned from the AIDS crisis. What these people are doing to millions is violence, and they have the full support of their peers and governments.

Winslow Santé Publique@winslowsp.bsky.social · 3mo ago

La psychologisation des #CovidLong, ça suffit. Action non-violente de patient·es CL de Winslow et @actioncovidlong.bsky.social lors d’une conférence européenne sur le COVID long organisée par les Pr Lemogne/ Ranque, de l'unité Casper 👇

No, when severe, you exist even without that, without your soul. It goes beyond suffering, we are deprived of not only bodily functions, our identity, or the things that give 'meaning' to our life... we are also deprived of what makes us a thinking person - while still awake to witness it. 2/2 #ME

I don’t think even most advocates and pwME understand how profoundly limited in options you are at extremely severe. All coping mechanisms make your situation worse in the long term. All you can do is lay completely still in the dark all alone with all senses blocked, not thinking anything. 1/3

@sgme.bsky.social Haben Sie einige ME/CFS Wahlempfehlungen dafür? www.proinfirmis.ch/inklusion/po...

New Medicaid work requirements will take effect at the end of 2026 - it will FAIL sick people and cut off their care. Tell HHS to recognize people with #MECFS and #LongCOVID as “medically frail” so our access to Medicaid is protected. Sign TODAY: actionnetwork.org/petitions/fr...

Protect Medicaid for People with ME/CFS and Long COVID

New Medicaid work rules will take effect at the end of 2026. Our care and support systems have long been rigged against disabled people, and these new paperwork rules will push even more sick people o...

actionnetwork.org

Victoria Australia, volunteer women with LC and ME/CFS (+ Healthy controls) needed for a bio study into the illnesses. #MEAus

Tom Kindlon@tomkindlon.bsky.social · 3mo ago

This was posted today by @danielmissailidis.bsky.social . redcap.latrobe.edu.au/redcap/surve... He has added in other posts: - it just requires one blood draw and a short survey - We need ~25 more women with LC and ~5 more women with ME/CFS - Healthy women also needed. #MEcfs #LongCovid

There was a great man called Dave Who was #pwME ‘s fave He stood up for them When they had PEM Please donate in memory of Maeve #GreatestMEdicalScandal #SevereME #MaeveInquest

Tom Kindlon@tomkindlon.bsky.social · 4mo ago

Please Help David Tuller @davetuller1.bsky.social , Our Champion! crowdfund.berkeley.edu/project/49720 Image is from the AMMES April 2026 newsletter #MEcfs #PwME #LongCovid

1) A new study estimated the disability and prevalence of Long Covid and compared it to NIH research funding. Long Covid should receive $740 million per year, but it only gets 14%-50% of that amount, depending on how you count. ME/CFS only gets 1% of its proportional funding...

With 10 days left, closing in on 300 donations. I think I've provided a good return on investment over the years. I'm looking to do that for another six months: crowdfund.berkeley.edu/project/49720

Trial By Error: Reporting on ME and ME/CFS, Long COVID, etc

Help UC Berkeley raise $75,000 for the project: Trial By Error: Reporting on ME and ME/CFS, Long COVID, etc. Your gift will make a difference!

crowdfund.berkeley.edu

1) Trigger warning: suicide This paper analyzed 505 entries on the National CFIDS Foundation memorial list. These were people with ME/CFS who passed away. The messages summarize their life, illness and struggles. The researchers grouped these into several recurring themes.

Initial results from the Big Survey of >5000 pwME are deeply disturbing… disbelief by NHS healthcare professionals, made to feel their ME was their fault, traumatic encounters with clinicians. This can not continue. More on 11 May👇🏽. Thanks @kacheston.bsky.social and @actionforme.bsky.social.

TRAILER: Buried Alive with M.E. I’ve spent the last months making a film for M.E. Kills, an online exhibition by A Quiet Storm. People with ME die every week. Many more are left to rot in dark rooms without care, disbelieved and dismissed. It’s a living death. #pwme #millionsmissing #severeME 1/

📰 Publié dans ICI Picardie, il apporte un éclairage essentiel sur l’encéphalomyélite myalgique (EM), en abordant plusieurs aspects majeurs de la maladie : le malaise post-effort, le sommeil non réparateur, l’errance médicale, ainsi que les risques liés à la réadaptation à l’effort pour les patients.

Imagine you couldn’t watch television because the sound and colours were too exhausting or needed help just to eat, wash or go to the toilet. This can be a reality for people with a severe form of #LongCovid and #MECFS. Clip from German TV.

An estimated that 2.1M Canadians are living with #LongCOVID and 600k are missing work or school as a result. Most have no access to trials. Only 38 are enrolling in Canada with less than 4.5k total participants. For #LongCOVIDAwarenessDay, I looked at funding and trials.

1) 🔬🦠New article: we've made a comprehensive overview of the immune system in ME/CFS, analyzing major studies of the past 40 years. A longread with separate chapters on: - viral persistence - cytokines - neuroinflammation - antibodies - immune cells such as NK, B, and T cells

Same old story from psychosocial researchers. An unblinded CBT trial found modest gains in the subjective outcome of fatigue. Which is almost likely bias. They measured physical activity with wearables, but failed to publish the results, later acknowledging no gains. So no evidence CBT works.

Richard Vallée@richardvallee.bsky.social · 5mo ago

"Here is how bullshit replicates itself in today’s medical world: Conduct a flawed trial, declare success despite serious questions, then develop health policy based on these hyped-up claims." Why even do studies if their results don't even matter?