Exciting to read about some of the expensive ME/CFS & long Covid research planned in Germany (using some of€500 million budget) including that using long-term samples which allow comparisons of samples before and after developing the conditions www.helmholtz.de/en/newsroom/... #LongCovid #MEcfs

"… revealing widespread transcriptional remodeling across both innate and adaptive immune compartments." "Mechanistically, we identify Galectin-9–TIM-3 interaction as a potential pathway driving ɣ𝛿 and MAIT cell depletion in LC." #MECFS #LongCovid #GDTcells www.frontiersin.org/journals/imm...

To understand the catastrophic turn in U.S. health policy, follow the money paulkrugman.substack.com/p/how-the-ka...

Huh. It's almost as if betting the world on a game of "let's pretend" between a bunch of pseudoscientific cosplayers wasn't a great public health strategy for dealing with COVID after all. 🤔 It must be nothing though. I'm sure we could trust management-class MDs to tell us if they got it wrong...

"We found that plasma concentrations of MASP-2/C1Inh were significantly higher in patients with long COVID relative to healthy convalescent individuals, indicating sustained activation of the lectin complement pathway." #LongCovid onlinelibrary.wiley.com/doi/10.1111/...

Eminence-based medicine ;-)

Multi-omics identifies lipid accumulation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cell lines: a case-control study @danielmissailidis.bsky.social et al. #MECFS link.springer.com/article/10.1...

“This year, renewables surpassed coal as a source of electricity worldwide, and solar and wind energy grew fast enough to cover the entire increase in global electricity use from January to June according to energy think tank Ember“ @science.org’s Breakthrough of the Year is the growth of renewables

More evidence-based disease mechanisms = less #stigma for Long COVID patients! 👇👇👇👇 Human #genetics implicate thromboembolism in the pathogenesis of #LongCOVID in individuals of European ancestry. www.nature.com/articles/s44...

fMRI signals “up,” but neural metabolism might be going “down.” In our @natneuro.nature.com paper, we demonstrate that about 40% of voxels with robust BOLD responses exhibit opposite oxygen metabolism, revealing two distinct hemodynamic modes. rdcu.be/eUPO8 funds @erc.europa.eu #neuroskyence 🧵:

Well done & thanks to these healthcare professionals (PTs)/similar ( @sunsopeningband.bsky.social @profmarkfaghy.bsky.social et al) for this new e-letter 👏 "In the Long Run, Misleading Participants Will Harm More Than Help in Long COVID Research" bmjopen.bmj.com/content/15/1... #LongCOVID #PEM

I’m excited to share my latest work, “The Small Life.” It explores the little things that still bring me joy as I navigate #LongCovid and #MECFS. #ChronicIllness substack.com/home/post/p-...

This blog post is a very accurate characterisation of the experience of living with #PostExertionalMalaise #PEM. Recommended reading for healthcare professionals who want to understand #MECFS and #LongCovid. You generally only see these patients when they're at their best — not in the aftermath.

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