Dom @domsalisbury.bsky.social · 21/09/2026Many of us still don't have any suitable care. No local clinic in some areas, or clinic not suitable for severe ME/CFS patients, e.g., commissioned for mild/moderate only, or too far to travel. Left to rheumatologists etc. who know very little. 0101
Reposted by DomMiles W. Griffis @mileswgriffis.bsky.social · 20/07/2026"When healthy people become ill, they expect to call a doctor, receive treatment, and recover. When people with myalgic encephalomyelitis (ME) become sicker, they often rely on other sick people for care, in the absence of systemic support." thesicktimes.org/2026/07/20/a...thesicktimes.orgAbandoned by our governments, people with severe ME and Long COVID are supported by severely ill peers - The Sick TimesMari, a Black Canadian woman with severe myalgic encephalomyelitis (ME), is supported by fellow people with ME in the absence of institutional care. 06119
Reposted by DomIt's ME(Jaime) @exceedhergrasp1.bsky.social · 21/11/2025PEM is not a single symptom; it's a pathological state in which response to exertion is shock-like: drops in BP, drops in oxygenation, drops in HR, drops in temp, transient drops in cognitive ability. And doing exercise more, or harder, or more often does not alter the nature of the response. 216928
Reposted by DomTrish Greenhalgh @trishgreenhalgh.bsky.social · 20/11/2025Eat out to Help Out was killing people, but they “kept it out of the news”. 40650407
Reposted by DomRobert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 23/05/2025Jonathan Edwards has announced that he has written a hypothesis paper on "A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma" with Jo Cambridge and Jackie Cliff. The preprint should appear on Qeios later today or on Monday: www.s4me.info/threads/a-pr...s4me.infoPreprint - A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon GammaI am hoping that the paper I have been writing with Jo Cambridge and Jackie Cliff will appear on Qeios tomorrow. If there are glitches it may be... 0113
Dom @domsalisbury.bsky.social · 18/05/2025Hey Paul. You've had a whole career in evidence-based medicine yet seem determined to push hypothesis-driven illness models, which lack robust evidence and are often based on anecodes or, worse, 'vibes' (see McEvedy and Beard, 1970). You say you want dialogue but I don't see it. 060
Dom @domsalisbury.bsky.social · 14/05/2025You are complicit in spreading harmful nonsense — the fact that you've commissioned this tripe should be noted. 1551
Reposted by DomChris Ponting @cgatist.bsky.social · 28/04/2025Want to use UK Biobank data to study ME/CFS? Can't decide which of the 5,354 UKB participants with evidence of ME/CFS to choose as cases? In this preprint, we consider what case/control definitions to apply. openresearch.nihr.ac.uk/articles/5-3... #pwME #mecfsopenresearch.nihr.ac.ukNIHR Open Research Article: Defining a High-Quality Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cohort in UK Biobank.Read the latest article version by Gemma L. Samms, Chris P. Ponting, at NIHR Open Research. 44725
Reposted by DomChris Ponting @cgatist.bsky.social · 22/04/2025NEW: There are 400,000 people diagnosed with ME/CFS in the UK, at least there would be if access to diagnosis was equal. ME/CFS diagnosis however is a postcode lottery. It's much rarer in non-White communities and socioeconomically deprived areas, much worse than for other diseases rdcu.be/eiEeurdcu.beUnequal access to diagnosis of myalgic encephalomyelitis in England 15730
Dom @domsalisbury.bsky.social · 22/04/2025Hello Chris. Lots of articles reporting this 404,000 figure as for England and not UK as a whole. Can you confirm that this estimate is for the UK population? 110
Dom @domsalisbury.bsky.social · 22/04/2025Could you please post this on X, where your reach is far higher. 000
Reposted by DomAction for ME @actionforme.bsky.social · 22/04/2025📢 New campaign: A proposal for an ME/CFS, Long Covid & Post-Infectious Disease research platform Urgent action is needed to ensure a strategic approach for research into ME/CFS & other post-infectious illnesses, incl. Long Covid ✍️ Sign to show your support! organise.network/s/5fe85dfdc26e 154
Reposted by DomAction for ME @actionforme.bsky.social · 16/04/20251/ The UK government is proposing significant changes to welfare benefits. These reforms could profoundly impact individuals with Long Covid and ME/CFS. We've launched a survey to gather your insight 👇 175
Dom @domsalisbury.bsky.social · 13/02/2025clickhole.com/which-team-m...clickhole.comWhich Team Member Of Jo-Ann Fabric & Craft (Jacksonville Branch) Are You? - ClickHoleWhich of these fab fabric peddlers (from the craft store’s Jacksonville, Fla. branch) are you? 100
Reposted by DomJeremy Scahill @jeremyscahill.com · 11/02/2025Nine paragraphs into today's NYT story on the situation with the Gaza ceasefire, readers are informed that Israeli officials and international mediators "said that Hamas’s claims were accurate." 6602229
Reposted by DomTom Kindlon @tomkindlon.bsky.social · 03/02/2025New review by US authors Cerebral Blood Flow in Orthostatic Intolerance www.ahajournals.org/doi/10.1161/... Has subsections on ME/CFS & long Covid #MEcfs #LongCovid 24417
Reposted by DomEric Topol @erictopol.bsky.social · 03/02/2025An update with latest data available for graph of life expectancy vs health care expenditures per capita for 20 countries and one outlier. 31949343
Dom @domsalisbury.bsky.social · 29/01/2025Thank you @georgemonbiot.bsky.social . You might be aware that the person doing the most damage is now Paul Garner, who believes long COVID is social contagion, and is pushing brain retraining for 'fatigue conditions'. 0200
Reposted by DomRobert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 24/01/2025Anyone reading this, please consider signing and sharing the petition calling for Cochrane to withdraw its harmful review of exercise therapy for CFS: www.change.org/p/cochrane-w...change.orgSign the PetitionCochrane: Withdraw the harmful 2019/2024 Exercise therapy for CFS review 13111
Dom @domsalisbury.bsky.social · 24/01/2025No doubt Paul Garner is having an influence, with his lobbying for pseudoscience and constant false information on ME/CFS and long covid. 1180
Dom @domsalisbury.bsky.social · 14/01/2025I don't understand how you can meet ME/CFS criteria (owing to COVID-19 infection) but not long covid criteria — especially given how vague most LC definitions are. 020
Reposted by DomEric Holthaus @ericholthaus.com · 08/01/2025A reminder that Los Angeles had its hottest summer in history last year. Southern California has received just 2% of "normal" rainfall during the current "rainy" season. These fires are a direct result of a warming & drying atmosphere caused by burning fossil fuels. We are in a climate emergency. 17653251921
Dom @domsalisbury.bsky.social · 08/01/2025People would buy these. Could be a good fundraising opportunity. 110
Reposted by DomArthur Gessler @arthurobuntspecht.bsky.social · 22/12/2024Researchers spend approximately 45% of their time on administrative activities related to #grants rather than actual #research. The current #competition in research #funding has significant drawbacks; evidence-based improvements of the funding system are required: www.pnas.org/doi/10.1073/...pnas.orgThe costs of competition in distributing scarce research funds | PNASResearch funding systems fundamentally influence how science operates. This paper aims to analyze the allocation of competitive research funding fr... 17513231
Reposted by DomMaike Osborne @maosbot.bsky.social · 01/01/2025Myalgic Encephalomyelitis: 1. Sufferers have lower quality-of-life than patients with heart failure, MS & end-stage renal disease. 2. Recovery is rare. 3. Treatment is often more harmful than helpful. 4. <1/3 of med schools include it in curriculum. 5. It's the NIH's least funded disease vs burden. 15354125
Reposted by DomAction for ME @actionforme.bsky.social · 16/12/20241/2 🚨 SequenceME A groundbreaking partnership has launched today, bringing together experts from Action for ME, Oxford Nanopore Technologies & the University of Edinburgh. Read more 👇 www.actionforme.org.uk/news/sequenc... #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #MEResearch 23719
Dom @domsalisbury.bsky.social · 09/12/2024Thanks David. You may have seen that there are now two more responses—one from @mecfsskeptic.bsky.social and one from a medical statistician at Oxford. Both excellent. 120
Reposted by DomEric Topol @erictopol.bsky.social · 02/12/2024Strong new evidence for T cell exhaustion in myalgic encephalomyelitis (ME/CFS) reflecting chronic viral infection, relevant to #LongCovid, and possible path to treatment candidates www.pnas.org/doi/epub/10.... @pnas.org 711628475
Reposted by DomAdam @abrokenbattery.bsky.social · 21/11/2024New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment. youtu.be/RiwX9Y0NbiQ?...youtu.beME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)YouTube video by Broken Battery 47473219
Dom @domsalisbury.bsky.social · 20/11/2024youtu.be/08qLpdjhu_g?... Good discussion between @davetuller1.bsky.social and @cgatist.bsky.social about the Ponting group's paper on blood-based biomarkers for ME/CFS — currently in peer-review.youtu.beInterview with Professor Chris PontingYouTube video by David M Tuller 050
Reposted by DomThe Guardian @theguardian.com · 19/11/2024The Mars Volta: ‘The world we were in was very sexist and homophobic’dlvr.itThe Mars Volta: ‘The world we were in was very sexist and homophobic’An intimate new documentary takes us behind the highs and lows of a band who were touched by many tragedies When Omar Rodriguez-Lopez of the Mars Volta moved to the mainland US with his parents from their native Puerto Rico at age 10, he was thrilled… 216724
Reposted by DomYann (ME/LC) @me-cfs.bsky.social · 17/11/2024The We&Me foundation is funding a large healthcare study in people with #MECFS and #PAIS (including #LongCOVID). The larger the sample size, the better, so fill it in if energy permits and share. s2survey.net/pais/index.p... [It’s quite long but it lets you pause; better to open in browser]s2survey.netQuestionnaire | page 1 34625