Dom
@domsalisbury.bsky.social
Energetically compromised #pwME and patient advocate (when able) · Research scientist by trade · Interested in how we live · Open-minded but generally sceptical
https://domsalisbury.github.io
https://domsalisbury.github.io
Reposted by Dom
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.
And doing exercise more, or harder, or more often does not alter the nature of the response.
November 21, 2025 at 3:56 PM
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.
And doing exercise more, or harder, or more often does not alter the nature of the response.
Reposted by Dom
Eat out to Help Out was killing people, but they “kept it out of the news”.
November 20, 2025 at 6:53 AM
Eat out to Help Out was killing people, but they “kept it out of the news”.
Reposted by Dom
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...
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...
www.s4me.info
May 22, 2025 at 11:28 PM
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...
Reposted by Dom
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
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.
openresearch.nihr.ac.uk
April 28, 2025 at 9:52 AM
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
Reposted by Dom
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
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
Unequal access to diagnosis of myalgic encephalomyelitis in England
rdcu.be
April 22, 2025 at 7:01 AM
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
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
Reposted by Dom
📢 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
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
April 22, 2025 at 12:03 PM
📢 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
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
Reposted by Dom
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 👇
These reforms could profoundly impact individuals with Long Covid and ME/CFS.
We've launched a survey to gather your insight 👇
April 16, 2025 at 11:00 AM
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 👇
These reforms could profoundly impact individuals with Long Covid and ME/CFS.
We've launched a survey to gather your insight 👇
Reposted by Dom
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."
February 11, 2025 at 1:36 PM
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."
Reposted by Dom
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
Cerebral Blood Flow in Orthostatic Intolerance
www.ahajournals.org/doi/10.1161/...
Has subsections on ME/CFS & long Covid
#MEcfs #LongCovid
February 3, 2025 at 6:03 PM
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
Cerebral Blood Flow in Orthostatic Intolerance
www.ahajournals.org/doi/10.1161/...
Has subsections on ME/CFS & long Covid
#MEcfs #LongCovid
Reposted by Dom
An update with latest data available for graph of life expectancy vs health care expenditures per capita for 20 countries and one outlier.
February 3, 2025 at 3:19 PM
An update with latest data available for graph of life expectancy vs health care expenditures per capita for 20 countries and one outlier.
Reposted by Dom
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...
Sign the Petition
Cochrane: Withdraw the harmful 2019/2024 Exercise therapy for CFS review
www.change.org
January 24, 2025 at 11:33 AM
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...
Reposted by Dom
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.
These fires are a direct result of a warming & drying atmosphere caused by burning fossil fuels.
We are in a climate emergency.
January 8, 2025 at 6:08 PM
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.
These fires are a direct result of a warming & drying atmosphere caused by burning fossil fuels.
We are in a climate emergency.
Reposted by Dom
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/...
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...
www.pnas.org
December 22, 2024 at 7:05 PM
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/...
Reposted by Dom
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.
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.
January 1, 2025 at 7:11 PM
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.
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.
Reposted by Dom
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
🚨 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
December 16, 2024 at 9:30 AM
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
🚨 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
Reposted by Dom
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
www.pnas.org/doi/epub/10.... @pnas.org
December 2, 2024 at 8:46 PM
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
www.pnas.org/doi/epub/10.... @pnas.org
Reposted by Dom
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/RiwX9Y0NbiQ?...
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
youtu.be
November 21, 2024 at 12:42 PM
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/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.
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.
Interview with Professor Chris Ponting
YouTube video by David M Tuller
youtu.be
November 20, 2024 at 12:41 PM
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.
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.
Reposted by Dom
The Mars Volta: ‘The world we were in was very sexist and homophobic’
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…
dlvr.it
November 19, 2024 at 10:16 AM
The Mars Volta: ‘The world we were in was very sexist and homophobic’
Reposted by Dom
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/pais/index.p...
[It’s quite long but it lets you pause; better to open in browser]
Questionnaire | page 1
s2survey.net
November 17, 2024 at 4:29 PM
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/pais/index.p...
[It’s quite long but it lets you pause; better to open in browser]