1) A randomized crossover trial found that both ivabradine and the beta-blocker propranolol were effective at lowering heart rate in patients with POTS. There wasn't a clear effect, though, on symptoms or functional capacity.

1) With genetic evidence pointing to the brain, there is renewed interest on the S4ME forum for the buspirone tests done in the 1990s. A couple of small studies found an increased prolactin response in ME/CFS patients but these findings were never studied further.

Thanks to my mum for getting everything ready for our family #TeaPartyForME2026 on #BlueSunday2026 (on Sun) We’re doing it in aid of @irishmecfsassoc.bsky.social www.idonate.ie/fundraiser/B... but other worthy charities are available (see the-slow-lane.com/donation-pages ) #MEcfs #CFS #BlueSunday

1) 🇪🇸 A new Spanish study measured autoantibodies against adrenergic and muscarinic receptors in 59 patients with ME/CFS, 96 Long Covid and 36 healthy controls. The results show a large overlap, questioning whether these antibodies are involved in ME/CFS pathology.

Good news!

1) 🇳🇱 The Dutch research agency ZonMw announced € 1.5 million in funding for 4 new Long Covid studies. It includes a project by Dr. Rob Wüst that will investigate physical changes (muscle, blood, autonomic function) in people with severe Long Covid who are homebound.

the number of people disabled by ME and LC is massive. It is a crisis. We need more money than this invested. When we say #MillionsMissing we mean it. #MEAwarenessDay

1) 🇬🇧 Good news from the UK: the government is investing 4.75 million pounds in the study "Sequence ME & Long Covid" It will allow the sequencing of 6000 ME/CFS samples previously collected through DecodeME. The project is led by the University of Edinburgh and Action for ME.

ME/CFS and Long Covid affect millions worldwide, yet have been underfunded for years. It’s great to see the DecodeME project secure new funding to analyse thousands of genomes, helping to uncover genetic drivers and improve diagnosis and treatment. https://bit.ly/3PdjtA4

🧬Join our Sequence ME & Long Covid Webinar Following the announcement of major funding (£4.75 million) from the UK Government, join our webinar to find out more about what this means for the study, and what happens next. 📅 26 May, 14:30-15:30pm GMT 📍 Register here: us02web.zoom.us/webinar/regi...

The science behind this ground-breaking #MEcfs study - congratulation sand thanks to @actionforme.bsky.social @cgatist.bsky.social Andy Devreeux-Cooke @nanoporetech.com and others mecfsresearchreview.me/2026/05/12/d...

1) There was an issue that some data/screenshots from the presentations of the Berlin conference could not be made public yet. We have therefore deleted all our posts about it. Apologies for the error.

Ty! My takeaways: -no clear HLA breakthrough (shame), but to be seen with sequenceME... -focus shifts more and more to T-cells over B-cells? (also in line with the mixed results from trials and genetics) -Fibro 🫂 ME Most of all: what an INCREDIBLE conference...! 👏🤩👏🙏 So looking fwd the videos.

Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of May 4 - 10: Topics: News, advocacy, articles Coming events Research news & commentary Published research www.s4me.info/threads/news... #MEcfs #LongCovid

Still doing home visits for research into: -platelet activation -miRNAs -cellular metabolism -immune function in pw/ ME/CFS or w/ Long COVID🩸🔬 If you're a woman with ME/CFS or Long COVID in VIC, Aus + want to be contacted, please fill in this form: redcap.latrobe.edu.au/redcap/surve... 1/2

Let's hope there will be more good science like this for David Tuller to report in the near future. #ME/CFS #BetterScience

1) For researchers: only a week left to submit abstracts for the ISLC-PAIS Conference. The conference is organised by the International Society for Long COVID and Post-Acute Infection Syndromes (ISLC-PAIS) in Amsterdam from 26 to 29 August. Deadline for abstracts is 15 May.

Am watching this right now 😸 Excellent conference and tons of poster presentations. #InternationalME/CFSConference2026

This conference starts tomorrow at 10:00 CEST 👇

Audrey will also analyse data from the Action for ME big survey which included questions on trigger types, whether onset was sudden or gradual, and explore in more detail whether or not people have relatives with the ill illness.

1) 1) Interesting interview of Dr. Audrey Ryback by David Tuller. Her recent study showed that there are likely two age peaks for when people get ME/CFS. It helps to characterise ME/CFS as a unique clinical entity.

Here's the paper where Dr. Kohlgruber explains the technique (TCR-MAP) she uses to study the receptors of T-cells. Complex but looks interesting. nature.com/articles/s41...

1) The Selin lab has received Solve ME/CFS grant to continue its work on T-cell receptors in ME/CFS. They have formed a collaboration with Harvard immunologist Ayano Kohigruber to study what the T-cells are responding to.

One of the best chances we have at confirming this finding is SequenceME. Here’s a fundraising link for those interested: bsky.app/profile/tomk...

Seeing that research is finding genetic differences with people who have ME/CFS gives me hope. Even if its only a little.

1) An analysis of rare DNA variants by AstraZeneca using the UK Biobank showed that people who self-reported having ME/CFS, had more rare DNA variants that disrupted the gene BTN2A1. This gene also came up in the common DNA variants analysed by DecodeME.

Advert documents attached as images!

"You mourn yourself while stile alive. And others move on as if you have already died." Beautiful film on severe ME/CFS by Anil Van Der Zee. It's part of an art exhibition by ME/CFS patients in Amsterdam. http://youtube.com/w...

Wichtige Punkte zur Einordnung von PEM: bsky.app/profile/mecf...

Have a feeling of being followed by a lot of (seemingly) fake accounts recently here on Bluesky. Anyone else has a similar experience or a potential explanation for it?

Of course it is the other way around. A bit dissapointing to read this... :( the bits I read from this paper were good. Thanks @mecfsscience.org

1) There's a new review on Long Covid by Mark Faghy and (many familiar) co-authors. I wanted to zoom in on their section on post-exertional malaise (PEM). I'm a bit skeptical, for example, about their statement that 50-80% of Long Covid patients experience PEM.

‼️ 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

1) This graph shows medications that ME/CFS patients tried before seeing a specialist at the Mayo clinic. 68% had at least 1 medication potentially prescribed for ME/CFS. Most common were serotonin-norepinephrine reuptake inhibitors, gabapentin, and tricyclic antidepressants.

Studies like this are so exhausting (literally). It makes doctors believe a multi-system neuroimmune disorder is ‘all on our heads.’ Last ER trip I had—for a completely unrelated spinal cord injury (MRI diagnosed and all!)—the doc blamed my urgent symptoms on mental health + ME/CFS. Bc of this shit

If you want to know more after you’ve seen #LongCovid patients protesting at a conference in Paris last week, read this.

1) 🇪🇺 The controversial European project on Long Covid includes a randomized trial on amygdala retraining and online CBT. In a preliminary analysis, both fared no better than usual care.

1) 🇳🇿 A study from New Zealand shows that ME/CFS patients had slightly lower health service use, such as emergency department visits, hospital admissions, and medication use, than patients receiving benefits without ME/CFS.

Incredibly excited to announce that our proposal to create Emergency Department guidance for #MECFS & #LongCOVID has received a generous grant from the Whittemore Peterson Institute! I'm working with longtime colleague @grachstephanie.bsky.social, plus Dhairya Jarsania and Kimberly Rogers at Mayo.

1) The International ME/CFS conference will take place on 7-8 May in Berlin. The event will be in English and broadcast online. Speakers include Chris Ponting, Carmen Scheibenbogen, Karl Tronstad, Oystein Fluge, Christopher Armstrong and many others.

A couple of years ago we wrote a blog article analyzing why ME/CFS is getting so little research funding. It includes more info about these metrics such as DALY and disability weights. mecfsscience.org/why-is-me-cf...

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...

1) This review on exercise for Long Covid now has a corrigendum, following a letter by David Tuller that points out multiple flaws.

1) An older paper from 2004: Tony Komaroff's team in Boston investigated the effect of pregnancy on ME/CFS in 86 female patients. The questionnaire results showed that pregnancy had no clear effect on symptoms.

1) Looks like the journal 'Psychosomatic medicine' has changed its name to 'Biopsychosocial Science and Medicine' since 2025. The journal has published a lot of problematic articles on ME/CFS in the past.

"dismissal by doctors" I suspect this is a significant cause of suicides for many chronic diseases

From: Commentary: Internal medicine at the crossroads of long COVID diagnosis and management www.frontiersin.org/journals/med... #LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome

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.

Fast alle hatten Fatigue, aber nur 25% wirklich #PEM - ach wie schön wäre es, wenn #LongCovid Studien diese Differenzierung standardmäßig machen würden. Das würde viel für Menschen mit PEM gefährliche Verallgemeinerung vermeiden...