"described for the first time widespread abnormalities in the function of unmyelinated C fibers, both somatosensory and sympathetic, that could represent a common pathophysiological mechanism explaining the multiplicity of symptoms in #longCOVID" #MECFS onlinelibrary.wiley.com/doi/10.1002/...

WatchME for iPhone and Apple Watch v2.8 now available To help #pwME with daily pacing iOS 17 | watchOS 10 Free. No data collected. apps.apple.com/app/watchme/...

The Irish health service has initiated a process to develop a clinical guideline for ME (#MyalgicEncephalomyelitis). I am honoured to be part of its Steering Group The process so far has been extremely progressive I am hugely optimistic that a world-leading guideline will be produced #pwME #MECFS

“DecodeME shows the incredible level of support that the ME/CFS patient community can give to research that involves them on a deep and meaningful level. Without the community, we could not have achieved all that we have.” Andy Devereux-Cooke (PPI Member and Co-Investigator)

"DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research.” - Prof Chris Ponting (DecodeME Investigator). We encourage researchers to explore and build on our findings. Apply for access to our rich dataset now shorturl.at/F8aOM

My piece for The RCP Commentary Magazine for #SouthAsianHeritageMonth. This is my lovely Mum and Dad in 1969. Immigrants helped build the NHS www.rcp.ac.uk/78702?utm_so...

"we identified significant differences in cfRNA contributions from multiple immune cell types. Notably, we observed a decrease in platelet-derived cfRNA and an increase in pDCs, monocytes, and certain T cell subset-derived cfRNA" #MECFS www.pnas.org/doi/10.1073/...

"includes seven Tier 1 genes, with BTN2A2 and TRIM38 eQTLs colocalised with ME/CFS risk […] Complexes involving butyrophilin3 and -2 homologues […] allow innate-like Vγ9Vδ2 T cells to distinguish self-derived from non-self-derived pyrophosphate antigens" #gdTcells #MECFS @forum-gd.bsky.social

"The project is part of a “notable increase” in ME/CFS research in recent years, Bosch says—a trend he attributes to a mix of patient advocacy, the failure of psychological and behavioral explanations for the condition, and increasing awareness of #MECFS thanks to its similarities to #LongCovid."

Proud to be on the Science Advisory Board for DecodeME, a peripheral role but a fantastic vantage point from which to witness such outstanding work by Chris Ponting @cgatist.bsky.social and colleagues #MECFS #pwME www.theguardian.com/society/2025...

With clear evidence of a genetic predisposition linked to relevant biological pathways, these findings need to mark a turning point away from medicine's historic failure to correctly research this disease and meet its duty of patient care. #MECFS #DecodeME

DECODE ME has published its results. Massive congratulations to @cgatist.bsky.social and team in Edinburgh. Let’s hope this is the start of a paradigm shift in how we view, research and treat this dreadful illness. www.decodeme.org.uk/initial-dna-...

Thank you Professor Chris Ponting @cgatist.bsky.social and the team at @decodemestudy.bsky.social #MECFS #genomics

#MECFS and #LongCovid pilot study 👀 (Small numbers: 4 ME, 5 LC and 4 healthy sedentary controls) Metabolic adaptation and fragility in healthy 3-D in vitro skeletal muscle tissues exposed to Chronic Fatigue Syndrome and Long COVID-19 sera iopscience.iop.org/article/10.1...

On the outdated, flawed and harmful 'current' review on exercise in #MECFS. From one of Cochrane's founder members: "Given the Cochrane Collaboration’s reliance on their exceptional status and members, that is untenable. Not retiring influential out-of-date reviews is a ticking time bomb."

WatchME for iPhone and Apple Watch v2.7 now available To help #pwME with daily pacing for #MECFS iOS 17 | watchOS 10 Free. No data collected. apps.apple.com/app/watchme/... Phone - Adds more widget options - Adds heart and HRV gauges to status tab - Adds O2 sat gauge to status tab if available

"UK Biobank analyses show that cancer survivors had increased cancer mortality after SARS-CoV-2 infection. This risk peaked in the months after infection, paralleling mouse models showing greater than 100-fold DCC expansion into metastatic lesions within two weeks" #BreastCancer #Cancer #Covid

My rapid response at BMJ is online now. I joined the chorus of protest about an opinion piece claiming people with severe ME/CFS can recover by "reframing their beliefs" &c. People with ME/CFS deserve so much better than that: www.bmj.com/content/389/... #MECFS

"work presented here and by these two independent research teams provides strong support for investing in research focused on dissecting innate immunity in ME/CFS" "mechanistic dissection of its pathobiology is revealing subtype-specific biomarkers" #MECFS #LongCovid

Incredibly powerful watch about the government plan on ME from @binitakane.bsky.social and Sarah, whose daughter Maeve died from ME. NHS urgently needs to commission specialist services for the 100,000s people living with this debilitating condition. watch here youtu.be/GZbSrdtiA9k?...

Given the huge clinical need, we look to the ME policy reboot with interest…yet weary and battle-scarred by decades of disingenuous policy proposals that always left an orphan specialty of under-funded, under-researched post infectious sequelae

This looks promising from the Netherlands: all governments should be putting in this much and more to understanding and treating #LongCovid

📹 Recording available! The recording from our last Genetics Centre of Excellence webinar (06 June) is now available to view on our YouTube channel 👇 youtu.be/zhNtqp2gP84 @precisionlife.bsky.social #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #longcovid #MEResearch

"A hospital may still deliver surgeries, but patients feel unseen." An interesting article to reflect on. open.substack.com/pub/freshthi...

"Evidence that there is a large number of replicated and diverse blood biomarkers that differentiate between ME/CFS cases and controls should now dispel any lingering perception that ME/CFS is caused by deconditioning and exercise intolerance" #MECFS #LongCovid www.embopress.org/doi/full/10....

Congratulations to Dr. Maureen Hanson, OMF Scientific Advisory Board Member, on receiving the 2024–25 SUNY Chancellor’s Award for Excellence for her unique scientific contributions, including ME/CFS research. Learn more: news.cornell.edu/stories/2025...

"these results failed to demonstrate an effect of ME serum on increased [oxygen consumption rate] in cultured myoblasts." #MECFS

"revealed profound dysregulation in EV proteomic cargo before and after exercise in male #MECFS patients compared with sedentary male controls." "Among the most significant pathways, the complement and coagulation cascades consistently stood out" onlinelibrary.wiley.com/doi/10.1002/...

Nice poster from Rob Wust and colleagues showing micro vascular dysfunction & basal membrane changes in skeletal muscle in ME and Long Covid. Reduction in oxygen & nutrients to muscle tissue contributing to fatigue and PEM.

"…identified comprehensive differences in circulatory protein concentrations" "…found to be unrelated to physical function argue against deconditioning as a driving factor" "…converge on a mechanism involving coordinated immune, vascular, and metabolic disturbances" #MECFS #LongCovid

Efforts are urgently needed to intentionally address inequity in long COVID research to include children early in clinical trial design. bit.ly/3RMGmYz #LongCovid @buonsenso.bsky.social @resiapretorius.bsky.social @longcovidkids.bsky.social @petterbrodin.bsky.social @putrinolab.bsky.social

Our evidence-based rebuttal to *that* BMJ opinion piece published last week. This has been authored by a coalition of 19 doctors, scientists and patient advocates from around the world, with now 80+ signatures of support from the scientific community. www.bmj.com/content/389/...

If Violet Affleck, first year Yale student, is planning a career in medicine or public health, she is off to a flying start. Her essay in Yale Global Health Review is outstanding. Yes, her parents are celebrities, but she is forging her own path yaleglobalhealthreview.com/2025/05/18/a...

We will share and discuss the latest ME/CFS & Long COVID genetic findings in a free webinar on 6 June, hosted by @actionforme.bsky.social. Speakers include Steve Gardner, Audrey Ryback, and Sonya Chowdhury. 🎟️ Register: precisionlife.com/webinar-upda... #MECFS #LongCOVID #precisionmedicine

Did you wake up with a craving for a new ME/CFS book with dozens of chapters about research methods? Well, it’s your lucky day link.springer.com/book/10.1007...

It is sad to see @bmj.com platforming quack therapies in 2025 The mind-over-matter approach to #MECFS has been debunked for years, but a cadre of psych devotees in the UK persist in peddling evidence-free miracle cures Pure and utter pseudoscience #pwME #LongCovid @georgemonbiot.bsky.social

Fifth, poster prize winner and young talent Anouck Slaghekke (team Rob Wust), showing microvascular dysfunction and basal membrane thickening in skeletal muscle, in both ME/CFS and Long-COVID. 6/7

Today is #InternationalMEawarenessDay recognising the #MillionsMissing with #MECFS. One story from NZ documenting how families have to create their own health system. www.youtube.com/watch?v=DsOA...

PolyBio’s Spring Symposium is approaching fast—on May 16, watch exciting project updates on clinical trials, tissue pipelines, immune & metabolism findings on infection-associated chronic illnesses. Sign up now: us02web.zoom.us/webinar/regi...

I can attest to this 💯 I was on bedrest for 16 weeks while pregnant. Eight weeks after delivery via c-section, I was back to running three 10-minute miles. I had “mild” covid (not hospitalized) and four plus years later, I still cannot run 3 miles. #LongCovid is a different beast.

Important new research from the Netherlands: Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest www.medrxiv.org/content/10.1... #LongCovid #MEcfs

I think a lot about what Carl Sagan said in one of his final interviews.

New media piece on #LongCovidKids 5 years on and things feel like they are going backwards ⬇️

"This week marks International Day of #Immunology, with this year’s theme focusing on the connection between the brain and the immune system – a relationship crucial to understanding the impacts of post-acute infection syndromes like #LongCovid" [email protected] newsroom.co.nz/2025/04/29/n...

"Both #LongCovid and #MECFS are under-recognised, not because they are rare, but because clinicians lack the tools and training to adequately detect the systemic dysfunction they reflect" @drannanz.bsky.social on how New Zealand’s Long Covid blind spot has now reached crisis levels #pwME 🇳🇿

Our campaign kicks off today! We have sent an open letter to the Ministers of Education and Health, urging them to adopt seven measures which would combat the spread of airborne illnesses in our ECE and schools. We invite all members of the public to sign the matching petition on Action Station.

Honoured to represent Aotearoa NZ 🇳🇿 on the 🌏 stage as part of the lead authorship team behind this global #LongCovid consensus 28 countries, 179 experts representing clinicians, researchers & lived experience. An important step toward better care, research & recognition doi.org/10.1186/s129...

Dissecting the genetic complexity of myalgic encephalomyelitis/chronic fatigue syndrome via deep learning-powered genome analysis https://www.medrxiv.org/content/10.1101/2025.04.15.25325899v1

12 -13 May 2025: The conference will bring together world leading experts to present the latest research on ME/CFS. The event will be an online livestream broadcast. Participation requires a registration and is free of charge. events.mecfs-research.org/en/events/co...

#LongCovid #NotPsychosomatic bjgplife.com/suzanne-osul...