I never met Alice Wong in person, but like so many great writers I felt like I knew her - and unlike many, when I emailed she emailed right back. ❤️ Peds neurologist @dianacejasmd.bsky.social has a beautiful essay in Wong's Disability Visibility collection - I recommend it to physicians. #neurosky

After some hardcore protesting in Germany!! Well done‼️‼️🇩🇪🇩🇪 "The coalition plans to invest 500 million euros by 2036 in the fight against #LongCovid and chronic fatigue syndrome (#MECFS)." www.spiegel.de/politik/karl...

From Daniel Missailidis, PhD @danielmissailidis.bsky.social (Victoria, Australia) People with ME/CFS, Long Covid, and healthy volunteers sought drive.google.com/drive/folder... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid

WTAF. This is an absolute travesty. Teen Vogue has consistently been a light in the dark and once again the corporate overlords just end it all.

Long Covid Is Real — And It’s Changing an Entire Generation Hundreds of thousands of kids in America are struggling with an illness that many doctors and schools refuse to recognize.e Feature: www.rollingstone.com/culture/cult...

"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 🇳🇿