For anyone who would like the clip (including George).
06.03.2026 08:21
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For anyone who would like the clip (including George).
PEM 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.
Eat out to Help Out was killing people, but they “kept it out of the news”.
Jonathan 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...
Hey 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.
You are complicit in spreading harmful nonsense — the fact that you've commissioned this tripe should be noted.
Want 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 #mecfs
NEW: 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/eiEeu
Hello 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?
Could you please post this on X, where your reach is far higher.
A researcher looks into a microscope in a lab. A box with text says “Show your support!” next to a QR code. Below, text reads: “New collaborative campaign launched, calling for an ME/CFS, Long Covid, and Post-Infectious Disease research platform.” Logos for Action for ME, ME Research UK, and the ME Association are shown at the bottom.
📢 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
Blue poster with white text reading “Survey: Have your say on welfare benefits reform. Calling people with Long Covid and ME/CFS.” Logos at the bottom: Long Covid Support, Action for ME, ME Local Groups Network, and #ThereForME.
1/ 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 👇
Nine 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."
Figure 4. Methods for CBF measurement. Ultrasound is used to assess blood flow velocity to the head either at the middle cerebral artery using TCD ultrasound or at the external carotid artery via extracranial ultrasound. NIRS supplies an index of oxygen saturation of the frontal lobe with oximetry by shining near‐infrared light at the forehead. In‐ear pulse‐wave analysis is an emerging technique to remotely measure blood flow to the head using infrared light to the posterior auricular branch of the external carotid artery. CBF indicates cerebral blood flow; NIRS, near‐infrared spectroscopy; and TCD, transcranial Doppler.
New 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
An update with latest data available for graph of life expectancy vs health care expenditures per capita for 20 countries and one outlier.
Thank 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'.
Anyone 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...
No doubt Paul Garner is having an influence, with his lobbying for pseudoscience and constant false information on ME/CFS and long covid.
I 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.
A 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.
People would buy these. Could be a good fundraising opportunity.
Researchers 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/...
Myalgic 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.
News announcement image with a DNA strand in the background. Text reads: ‘First of a kind study to uncover genetic causes of ME.’ Includes logos for Action for ME, The University of Edinburgh, Edinburgh Innovations, and Oxford Nanopore Technologies. Bottom corner has a QR code with labels ‘Our news’ and ‘Research.’
A quote from Sonya Chowdhury, CEO of Action for ME, emphasises that the collaboration centres people with lived experience of ME. The initial study phase focuses on severe cases, ensuring those most affected play a key role in advancing understanding and driving meaningful change.
A quote from Dr Gordon Sanghera, CEO of Oxford Nanopore Technologies, highlights DecodeME as the largest ME/CFS study. He states the next step, SequenceME, uses Oxford Nanopore’s sequencing technology to uncover genetic insights, improving care and enabling personalised medicine for people with ME.
A quote from Professor Chris Ponting of the University of Edinburgh, emphasising the opportunity of SequenceME to utilise world-class technology to address the medical puzzle that is ME, building on the work of DecodeME.
1/2
🚨 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
Thanks 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.
Physios4ME Karen?
Strong 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
New 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.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.
