“Most of my work has originally been in heart and skeletal muscle, but I became interested in the brain because I knew that this channel was also in the brain,” said Marks. Pair with New research confirms people with #ME/CFS have a consistent faulty cellular www.eurekalert.org/news-release...

The highest-burden cluster showed persistent multisystem symptoms (median 6 symptoms at 6–9 months) with frequent fatigue, concentration difficulty, post-exertional malaise, myalgia, sleep disturbance, gastrointestinal symptoms, headache, irritability, and mobility limitations. Sounds like ME to me

“If there's disturbance in the vascular system, disturbance in the immune system, disturbance in the cell energy function, that would explain why people [with #ME/CFS] have hundreds of symptoms," "Because every tissue and organ in the body is impacted by this illness." www.cell.com/cell-reports...

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

Good news for those who got a/o still have access to Nuvaxovid/Novavax Validation of a Mucosal IgA Assay for SARS-CoV-2 🏷️ @sailorrooscout.bsky.social @virusesimmunity.bsky.social

This is exactly what needs to happen for #SevereME. ~25% of us are at REAL risk of abuse and death if needing hospital care. yet none of our charities have any structural support. the 25% group "do not do medical advocacy" AfME says "we are not resourced for this", had to be called out publicly

I Crash: Texts from M.E. This post uses my own text messages to give a first-person documentary account of an experience of Long Covid and ME/CFS. humanisticsystems.com/2026/05/17/i...

Both #PEM frequency and PEM severity substantially impair HRQoL in individuals with Long COVID. These findings underscore the clinical relevance of PEM as a key symptom and highlight the need for targeted management strategies to mitigate its impact on daily life. #ME/CFS #LongCOVID

On #PEM in #LongCovid ‚greater fatigue and higher PEM frequency independently predicted poorer HRQoL, even after adjustment for sociodemographic factors‘ Yes - the horror of PEM cannot be offset by anything, during PEM your whole life IS PEM, and at other times PEM dictates how you live.

Okay, so maybe that’s NOT the only post. Vaccination remains THE key intervention against severe disease, hospitalization, and death. Make sure you are protected and WEAR A MASK. 🧪🧵⬇️

Vaccines save lives. That’s it. That’s the post.

Join us for a webinar with panelists from DecodeME and ActionForME to discuss their Catalyst Award-winning study on Sequence ME and Long Covid and how it could impact the search for biomarkers and subtypes. https://ow.ly/x0fJ50YZ86w #MEAwarenessHour

Six years ago today the term #LongCovid was first used as a Twitter hashtag. A single tweet by a patient linked together a growing grassroots movement of people, who weren't recovering from covid. Across the world, we're still fighting for research and treatment of our disease

A quote from my new piece, The Inventory of Loss. “The grief is ongoing because the illness is ongoing, and new losses arrive as old ones calcify into something you have learned to carry.” darthfoo.substack.com/p/the-invent... #LongCOVID #MECFS #PwME

A “unifying” hypothesis of the mechanisms, triggers, and risk factors for myalgic encephalomyelitis (ME), is gaining support. Further evaluation and development of a potential drug depend on funding. bit.ly/4dsrTLN

#MEAwarenessWeek takes place every May during the week of May 12th, which marks International ME Awareness Day. The aim is to raise awareness about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #ME/CFS – a complex and debilitating disease that extends far beyond fatigue and significantly

Professor Chris Ponting, of the @decodemestudy.bsky.social #GWAS study and researchers at the University of Edinburgh, said deep sequencing the complete genomes of 6,000 DecodeME participants using advanced long-read technology, will enable the team to pinpoint individual genes disrupted in #ME/CFS

#LongCOVID is practically politically erased by the Dutch Health Council Measured in loss of quality of life, post-covid is the biggest medical consequence of the covid pandemic. But politicians in The Hague don't even seem to do their best to hide their disinterest anymore. @molbaas.bsky.social

Almost five years after COVID-19 emerged, multiple scientific uncertainties remain about why some people experience ongoing symptoms long after being infected with SARS-CoV-2 (Long COVID). The pathophysiology underlying Long COVID and its potential to represent several endotypes are still under

An excellent blog by @simonmcg.bsky.social which explains what the £4.75 million that the UK government has given to Sequence ME and Long Covid will be used to do: mecfsresearchreview.me/2026/05/12/d... You can donate to the study here: www.actionforme.org.uk/research-cam...

#PEM and "energy coins" - a short video explanation of #PEM (the core and defining symptom of #ME/CFS) From the Norwegian ME Association @meforeningen.bsky.social Thank you @tschei.bsky.social

Cort Johnson speaks to PrecisionLife CEO Steve Gardner whose latest study used genetic data from DecodeME vs UK Biobank. Their goal is to identify core genes driving the illness & then reduce their expression, and in finding drugs that will work in both ME/CFS & long COVID. tinyurl.com/3v59k3dy

Having #ME/CFS and being in #PEM, which actually happens to be triggered by the most simple and taken for granted activities of daily life, means that your day starts and ends in a matter of minutes. Your body is trapped in an invisible vise and the more you fight through it the worse you end up.

… 4️⃣ These rare variants are especially likely to appear in families where ME/CFS runs across generations. DecodeME could only look for common variants, which usually have much smaller effects – and so are weaker clues. Read the blog post at mecfsresearchreview.me/2026/05/12/d...

4️⃣ Full sequencing plus a large sample size (6,000 people) means researchers can detect RARE gene variants that create faulty proteins — some of the strongest clues to disease biology…

3️⃣ This will probably be the largest full-genome sequencing study using nanopore technology for any single disease. ME/CFS is setting the standards here, extraordinary for an illness that has been surviving on the dregs of research funding.

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…

📢 Join the PRIME ME/CFS Research Involvement Hub! Today, PRIME have launched their new ME/CFS Research Involvement Hub which aims to build a virtual network of people with lived experience of ME and match them with research projects to help shape the delivery of those projects.

17) Link to the preprint: Maccallini P. 2026. Biological Insights from Genome-Wide Association Studies and Whole Genome Sequencing of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome www.researchsquare.com/article/rs-9...

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.

#pwME and carer in the UK you can now Join PRIME Research Involvement Hub PRIME’s full name is 'Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome'. It's an initiative aimed at enhancing and accelerating research on #ME/CFS.

@cgatist.bsky.social leads DecodeME at IGC: “By deeply sequencing the complete genomes of 6,000 DecodeME participants using advanced long-read technology, this project will allow us to pinpoint individual genes disrupted in ME/CFS, moving beyond broader chromosomal signals identified to date."

“These patients deserve more than a physician who fits them into the margins of an already full week. They deserve a field.” 👏🏻🎯🙏🏻 Dr. Buonsenso is head of the Unit of Pediatric Infectious Diseases at Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome @buonsenso.bsky.social #LongCOVID #ME/CFS

This was published back in May 2020! #pwME sounded the ALARM about ignoring the grave & disabling consequences of post COVID-19 sequelae. #ME/CFS being the most serious and impactful one: www.washingtonpost.com/health/could... @brianvastag.mas.to.ap.brid.gy & our late Beth Mazur #LongCOVID #IACCs

Congrats to all involved in securing this critical funding! However, I understand that it is only sufficient for the next phase with a further £15m needed for all that is envisaged. SequenceME is reliant on charities and personal donations to fundraise for this. Sonya Chowdhury called it well…

Published in The New England Journal of Medicine. Peer-reviewed. Large sample size. Sound methodology. An antiviral pill has, for the first time, been shown to prevent COVID-19 in individuals exposed to SARS-CoV-2. Ensitrelvir blocks the enzyme coronaviruses need to make new copies of themselves.

What she did not expect was endometriosis—a condition in which tissue similar to the lining of the uterus grows outside the uterus, causing heavy and especially painful menstruation. The endometriosis was so extensive that my abdomen was drowning in lesions, scar tissue, and adhesions. Everything

Setbacks and new approaches for therapy research At the international #ME/CFS conference in Berlin, scientists presented the first data from clinical studies – the results are sobering. At the same time, there are new ideas that are being tested in clinical trials. @martinruecker.bsky.social

More than 7,300 people attended the 2026 #ME/CFS conference. 💙🙏💙 The videos and summaries of the lectures will follow soon! One request: Do NOT post videos or screenshots of the presentations until official publication, so that ongoing research is not jeopardized. @mecfsresearch.bsky.social

The 1944–1945 Hongerwinter (Hunger Winter) in Holland during World War II was brutal. A German blockade had cut off food and fuel, and the result was widespread starvation among the population. But out of this horror came an inadvertent experiment in epigenetics, as well as a

Okay, last last post on this thread: It’s worth noting that public support for mitigation measures was significantly higher than the Biden administration would acknowledge as it was barreling toward reopening. Public concern for safety/fear of the virus was higher. …into 2022, as I reported.

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...

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 UCFS, Maureen Hanson @cornellmecfs.bsky.social, Steven Deeks UCFS #LongCOVID #ME/CFS #PAIS

In ME/CFS, M1, M3, and M4 AAb titers positively correlated with verbal and working memory performance. Distinct AAb profiles in PCC and ME/CFS suggest potential differences in immunological mechanisms. β2 adrenergic receptor AAbs were associated with measures of autonomic dysfunction in PCC patients

New preprint from Paolo Maccallini Biological Insights from Genome-Wide Association Studies and Whole Genome Sequencing of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #ME/CFS #GWAS #WGS #Genetics #pwME Tissue enrichment analysis implicated multiple brain regions and the pituitary, with

"Why doesn't the US have national health insurance?" Fascinating new paper from Alsan and Neberai out in QJE @qjeharvard.bsky.social finds: rise of private health insurance in the US was enabled by 'strategic, interest group-financed effort to shape citizen views and influence policy' #EconSky

After the great news from the UK about #SequenceME (a continuation and deeper dive of the first GWAS study @decodemestudy.bsky.social into the genetic factors involved in #ME/CFS). This recent paper by Prof. @lizworthey.bsky.social et al. is a must read Uncovering the genetic architecture of ME

6) Link to the study: Birch et al. Uncovering the genetic architecture of ME/ CFS: a precision approach reveals impact of rare monogenic variation. link.springer.com/ar... Discussion on S4ME: www.s4me.info/thread...

1) Elizabeth Worthey's group published their findings on rare gene mutations in ME/CFS patients. Unfortunately, the evidence seems a bit underwhelming. Only 31 individuals were screened and it's unclear if the mutations found are truly pathogenic.