Dom

Preprint - A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma I 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...

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 👇

Which Team Member Of Jo-Ann Fabric & Craft (Jacksonville Branch) Are You? - ClickHole Which of these fab fabric peddlers (from the craft store’s Jacksonville, Fla. branch) are you?

clickhole.com/which-team-m...

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'.

Sign the Petition Cochrane: Withdraw the harmful 2019/2024 Exercise therapy for CFS review

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.

The costs of competition in distributing scarce research funds | PNAS Research funding systems fundamentally influence how science operates. This paper aims to analyze the allocation of competitive research funding fr...

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

YouTube video by Broken Battery ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

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?...

YouTube video by David M Tuller Interview with Professor Chris Ponting

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.

The 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…

The Mars Volta: ‘The world we were in was very sexist and homophobic’

The 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]