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Dom

@domsalisbury.bsky.social
247 followers 105 following 13 posts

Energetically compromised #pwME and patient advocate (when able) · Research scientist by trade · Interested in how we live · Open-minded but generally sceptical domsalisbury.github.io

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Reposted by Dom
Miles 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.org
Abandoned by our governments, people with severe ME and Long COVID are supported by severely ill peers - The Sick Times
Mari, a Black Canadian woman with severe myalgic encephalomyelitis (ME), is supported by fellow people with ME in the absence of institutional care.
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 21/11/2025
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.
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Trish Greenhalgh @trishgreenhalgh.bsky.social · 20/11/2025
Eat out to Help Out was killing people, but they “kept it out of the news”.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 23/05/2025
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...
s4me.info
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...
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Chris Ponting @cgatist.bsky.social · 28/04/2025
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
openresearch.nihr.ac.uk
NIHR 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.
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Chris Ponting @cgatist.bsky.social · 22/04/2025
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
rdcu.be
Unequal access to diagnosis of myalgic encephalomyelitis in England
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Action 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
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.
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Action for ME @actionforme.bsky.social · 16/04/2025
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 👇
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.
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Jeremy Scahill @jeremyscahill.com · 11/02/2025
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."
NYT: "The current standoff stems in part from Hamas’s accusation that Israel has failed to uphold its promises for the first phase of the cease-fire — a six-week period that started on Jan. 19. Under the terms of the deal, Israel was required to send hundreds of thousands of tents into Gaza, among other humanitarian supplies, a promise that Hamas says Israel has not kept.

"Speaking on the condition of anonymity to discuss a sensitive matter, three Israeli officials and two mediators said that Hamas’s claims were accurate."
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Tom Kindlon @tomkindlon.bsky.social · 03/02/2025
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
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.
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Eric Topol @erictopol.bsky.social · 03/02/2025
An update with latest data available for graph of life expectancy vs health care expenditures per capita for 20 countries and one outlier.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 24/01/2025
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...
change.org
Sign the Petition
Cochrane: Withdraw the harmful 2019/2024 Exercise therapy for CFS review
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Eric Holthaus @ericholthaus.com · 08/01/2025
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.
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Arthur Gessler @arthurobuntspecht.bsky.social · 22/12/2024
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/...
pnas.org
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...
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Maike Osborne @maosbot.bsky.social · 01/01/2025
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.
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Action for ME @actionforme.bsky.social · 16/12/2024
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
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.
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Eric Topol @erictopol.bsky.social · 02/12/2024
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
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Adam @abrokenbattery.bsky.social · 21/11/2024
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
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
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Dom @domsalisbury.bsky.social · 20/11/2024
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.
youtu.be
Interview with Professor Chris Ponting
YouTube video by David M Tuller
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The Guardian @theguardian.com · 19/11/2024
The Mars Volta: ‘The world we were in was very sexist and homophobic’
dlvr.it
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…
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Yann (ME/LC) @me-cfs.bsky.social · 17/11/2024
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]
s2survey.net
Questionnaire | page 1
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