Phenomenal. In my 10 year update of A Brief History, I make the point that in the first edition, not one disease had been successfully treated using gene therapy. Today that number is at least 7.

30% of a sample of the general population in Germany said they had this PEM symptom: Do you experience worsening of your fatigue/energy-related illness after minimal physical or mental effort?

Full segment (3 mins) ITV News reports on the rise in POTS since COVID. youtu.be/WeWuzLkE75w?...

Clip from ITV Border News (19 Sept) about the powerful upcoming exhibition Lives We Cannot Live by Jeremy Jeffs (@jeremy-jeffs.bsky.social), shining a light on life with #MECFS. Highly recommended if you’re in London - Oxo Tower Gallery, 24–28 Sept

Switzerland is putting in place one of Europe’s first national strategies specifically dedicated to improving care and research for ME/CFS and Long Covid www.europeanmealliance.org/news-Q32025-... #mecfs #Longcovid #EuropeanMEalliance

From @emergeaustralia.bsky.social : "The AusME Registry is making a real impact! The AusME Registry is now supporting 25 research projects across Australia - helping scientists unlock the biology behind ME/CFS & long COVID" Get involved here: emerge.org.au/get-involved... #MEcfs #LongCovid

5) The authors call for better standardized diagnostic criteria for Long-COVID and identifying Long-COVID patients who meet ME/CFS diagnostic criteria to allow for better comparisons.

UK PwME Advocacy Alert: meassociation.org.uk/2025/09/ask-...

Very disappointing to hear the US ME/CFS GWAS (think DecodeME) is not going ahead for funding reasons. More info on the study that is not going ahead here reporter.nih.gov/search/yRt6x... #MEcfs #CFS #PwME

Participants sought for @scripps.edu remote long covid trial to evaluate repurposed drug across US www.contagionlive.com/view/remote-... mydatahelps.org/e/LOCITT/Wai... Image is screenshot from Massachusetts ME/CFS & FM Association September e-newsletter #LongCovid #PASC

Trial By Error: [David Tuller @davetuller1.bsky.social ] Interview with Columbia’s Ian Lipkin on Heightened Immune Response in ME/CFS, Funding Challenges, and Current Research virology.ws/2025/09/10/t... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

1) Interesting interview of Prof. Ian Lipkin by David Tuller (@davidtuller1). They not only talk about Lipkin's recent study showing heightened innate immunity in ME/CFS but also about past and future studies. A brief summary 🧵

This year's Lasker Awards went to scientists who studied the wiring diagram of life, a new state of biological matter, and a potent treatment for cystic fibrosis. Here's my story with Gina Kolata. Gift link: nyti.ms/4mZlH1F

ME Research UK and the ME Association are excited to announce funding to Dr Fatima Labeed and Dr Jackie Cliff to develop a diagnostic test for ME/CFS, expanding on their initial study showing electrical differences in blood cells from people with ME/CFS.  https://meassociation.org.uk/wohx #MECFS

"Have you listened to the podcast where-" NO! I HAVE NO TIME! THERE ARE 8,000 BOOKS TO READ, I''M STILL NOT FINISHED WITH BREAKING BAD, AND I HAVE A JOB! DO YOU PEOPLE NEVER SLEEP! ARE YOU ON COCAINE?! IF I WANTED TO LISTEN TO PEOPLE TALKING I'D HAVE MORE FRIENDS!

Big science, explained simply: the DecodeME paper in 12 minutes, through the voices of AI This 12-minute podcast was created by a post-viral fatigue sufferer and AI expert, Peter Brookes-Smith dt-squad, to help explain the recent DecodeME paper. https://tinyurl.com/3jwn39am #MECFS #DecodeME

More fear and the stoking up of prejudice causing fear and danger in Nuneaton as American footballers are targeted as asylum seekers www.coventrytelegraph.net/news/local-n...

1) 🇳🇴 A new Norwegian study reports that ME/CFS patients have different DNA variants of killer cell immunoglobulin-like receptors (KIR) compared to controls. According to the authors, this points to the involvement of natural killer cells in ME/CFS.

MP John Milne writes to Wes Streeting, questioning “the absence of strategic approach to biomedical research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as part of the Final Delivery Plan”. Read more: https://meassociation.org.uk/ehm8 #MECFS #pwME #MyalgicE #DeliveryPlan

This is some of the best use of funding in the post-viral field. If you have money to spare, this is very much worth donating to. This team has some of the best experience in running trials, and one of the most promising drugs.

2/ agsjournals.onlinelibrary.wiley.com/doi/10.1111/...

1) There's a new German study on the short-term effects of Mestinon (Pyridostigmine). They found that it improved hand grip strength and reduced heart rate increases upon standing in 20 ME/CFS patients.

3rd NHS ME/CFS e-learning module, this time on severe ME/CFS, was released on September 4 learninghub.nhs.uk/Resource/712... Somewhat reassuring that Prof Strain authored it but it would be interesting to know more about the details #SevereME #MyalgicEncephalomyelitis #MEcfs #CFS #PwME

First up Joshua Dibble from U of Edinburgh, talking about the DecodeME Study, a genome-wide associations study and the largest #MECFS study to date. Mentions that Ponting gave earlier talk during closed meeting, they're trading off. 🧪🧵

Huge congrats to Chris Ponting and the whole Decode ME team on their preprint on #genetics of people with #MECFS! Pre-print plus li'l video before we get into a deeper dive. Vid: www.youtube.com/watch?v=0S5u... Preprint: www.pure.ed.ac.uk/ws/portalfil... 🧪 🧵

Wenzhong Xiao discussing the treatments survey that I have literally already cited twice 😂 Hey, it's great work! 🧪 The paper is here: pubmed.ncbi.nlm.nih.gov/40627388/

Just one of two big @nature.com papers from @intlbrainlab.bsky.social out today. This companion article illustrates the value of large-scale brain-wide recordings from mice performing a standardized task, giving new insights at cellular resolution into neural representations of prior information. 🧠🧪

1) A research team from Arizona university used Invasive cardiopulmonary exercise testing (iCPET) in ME/CFS and Long Covid patients. They found that muscle oxygen diffusion was the most impaired parameter.

In 2023 I unsuccessful nominated Tom for an honorary degree at Trinity College Dublin with the support of numerous scientists, organisations and others. (Details here: www.s4me.info/threads/tom-...) Delighted that Tom has now been honoured by the Belvedere Union. Hugely well-deserved 💪 🥳

🧵 I'm honoured to be recognised in this way by the Belvedere Union 😊 Screenshot of their full announcement in the next post. [In recent years, I’ve cut back a bit from a fairly hectic level of activity but still plenty to do, so no plans to retire any time soon] #MEcfs #CFS #PwME 1/

The body of evidence showing that when centrist parties adopt the priorities and talking points of the far right, they torpedo themselves is vast and powerful. Yet Keir Starmer's Labour Party seems determined to ignore it. A few examples in 🧵: theconversation.com/how-should-l...

Seeking a Project Manager for the PRIME project: "Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Closing date for applications is 15 September 2025. #pwME #MEcfs elxw.fa.em3.oraclecloud.com/hcmUI/Candid...

1) 🇨🇦 In a new ME/CFS study, the research team of Alain Moreau reports that haptoglobin (Hp) might be a potential biomarker of PEM severity and cognitive impairment. Its main function is to bind free hemoglobin that is released after the breakdown of red blood cells.

The ME Association are pleased to announce that we have awarded Decode ME the Howes-Goudsmit Award 2025 for their extensive work and commitment to their genome-wide association study. Find out more: https://meassociation.org.uk/ir3e #MECFS #pwME #SevereME #MyalgicE #DecodeME #HowesGoudsmitAward

On the new acting CDC director. www.theguardian.com/us-news/2025...

BBC: 'Is the DNA of people with ME different?' 'We meet the scientist behind the research – Professor Chris Ponting – and Laura Boyles who has been living with the condition for 15 years.' www.bbc.com/audio/play/p...

1) 🇦🇺 The Australian research group of Christopher Armstrong just published a review on cerebral blood flow (CBF) in ME/CFS and orthostatic intolerance. About half of the ME/CFS studies reported a significant CBF decrease.

@paulgarnerwoof.bsky.social argues that his case (n=1) shows that positive thinking and exercise will cure #MECFS. Here are some more comprehensive statistics from a recent survey. Graded exercise therapy (GET) is the worst intervention by far (n=299), and pacing is the best (n=803).

Decode ME hosted a webinar with Prof Chris Ponting and the Decode ME management team explaining the results of the study, what they mean going forward, and answering audience questions.  They have now made this available to watch online - see more: https://meassociation.org.uk/cdgk #MECFS

This is v interesting as MEcfs is associated with more severe infections e.g. mono/glandular fever, Covid (long Covid), Q-fever & Ross River virus. Also Dubbo study found initial illness severity was a predictor of later CFS. PD White's mono study the found same for initial days of best rest.

Mount Sinai’s new manual for the treatment of infection-associated chronic diseases is an important step: not a cure-all, sure, but an important instance of a medical institution taking IACD seriously—including Lyme & TBDs—and introducing frameworks for care. Thx @putrinolab.bsky.social & CORE!

Just changed profile: now 31 years housebound with #severeME (more than half my life) (ill 36.5 years)☹️ Hope research progress is made soon🙏 Links: - A list of research funds: phoenixrising.me/resources-2/... - My story: independent.ie/life/health-... #MyalgicEncephalomyelitis #MEcfs #PwME #CFS

1) Interesting presentation by Anouk Slaghekke at the 2025 Berlin conference. This Dutch team found that small blood vessels of patients with ME/CFS and Long Covid are clocked up with Collagen IV.

1) In a new genetics project supported by @MEResearchUK, Dr Alkisti Manousaki from the University of Leicester will study X chromosome inactivation in ME/CFS. This could help clarify why females are approximately 4 times more likely to develop ME/CFS than males.

From Ronald W. Davis, PhD: Community Symposium on the Molecular Basis of ME/CFS returns! 👉 Register for the Community Symposium: ow.ly/vm1S50WIbO2. #pwME #MECFS

Almost two years ago, our beloved, brilliant #bethmazur ended her life while visiting me. The grief has softened with time, but the impact has reshaped me. I've written about it here: jrehmeyer.substack.com/p/holding-wh...

I use Siri to set a Reminders, and it doesn't always work that well. Today it's reminded me to: Get some giraffes It's going to be a busy day

Anti-vaccine myths surged on social media ahead of the CDC shooting. “On X, for example, verified accounts with hundreds of thousands of followers openly claimed in recent weeks that Covid vaccines act like ‘chemical lobotomies,’ which is false.” www.nbcnews.com/tech/interne...

1) 🩸 New paper by the team of Ronald Davis. They found that red blood cells from ME/CFS patients are slower and less responsive to low oxygen levels in a lab device that mimics small blood vessels.

Interesting study using several techniques to show that fatigability occurs in the muscle before it is detected in the brain. (I think this is a study of healthy people). Note it comes from the Brian Wallit group