News in Brief - October 2025
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Week beginning 29th September 2025
News, advocacy and articles
Trial by Error by David Tuller My Letter to Cochrane's Chief Executive Officer
David Tuller has written to Karla Soares-Weiser, chief executive officer in Cochrane, concerning their review on exercise as ME/CFS treatment. The lead author of the review, Lillebeth Larun, recently acknowledged that the review may not apply to patients diagnosed with criteria including the hallmark feature of ME/CFS; PEM. Tuller writes that this makes the need for a new review self-evident.
Article l Thread
Australia RACGP Special Interest Group: New network to support ‘often misunderstood’ conditions
"Associate Professor Shiu said the new group was created to address a growing need in primary care. ‘Conditions such as ME/CFS, long COVID, POTS, and fibromyalgia are increasingly presenting in general practice, yet many GPs feel under-resourced and isolated in managing them,’ he said."
Article | Thread
Australia NHMRC Guideline Development Committee
The National Health and Medical Research Council’s (NHMRC) Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Guideline Development Committee (ME/CFS GDC) held its inaugural meeting on Thursday 28 August 2025 to commence development of clinical practice guidelines for ME/CFS and related conditions, including Long COVID, postural orthostatic tachycardia syndrome (POTS) and fibromyalgia.
Article | Thread
The #NotJustFatigue group has posted a recording of their September 25 livestream event.
Website | Thread
..........
Research news
DePaul University Research is conducting an online survey focused on PEM (Post-Exertional Malaise). Patients who experience PEM, as well as members of the general population, are invited to take part. The survey takes about 10-15 minutes to complete.
Announcement (Facebook) | Survey | Thread
Special Issue
The International Journal of Molecular Sciences is organizing a special issue on ME/CFS called "Molecular Pathologies and Treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome—2nd Edition." Guest Editor is Prof. Dr. Elisa Oltra. The deadline for submissions is 31 March 2026
Article | Thread
ME/CFS Science blog DecodeME: the biggest ME/CFS study ever
A clear article explaining how a genome wide association study gives pointers to what may be causing ME/CFS, takes a closer look at some of the DecodeME findings and describes next steps.
Article | Thread
...........
Coming events
Bateman Horne Center - Free Online Support Groups
Tuesday, October 14, 1:00 - 2:00 PM Mountain Time
Topic: Navigating the Complex Healthcare Industry
Tuesday, October 21, 1:00 - 2:00 PM Mountain Time
Topic: Parenting with Chronic Illness
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
Long Covid Web and Memorial University of Newfoundland are hosting the 3rd Canadian Symposium on Long COVID on October 20 - 21. This event will take place in-person in St. John’s and virtually on Whova platform.
Announcement | Thread
...........
Research
ME/CFS research
Specialised care for severely affected ME/CFS patients — Ola Didrik Saugstad et al.
"We have described a specialised care programme for severely and very severely affected ME/CFS patients. Approximately 30% of the patients benefited significantly from their stay, and about half of them showed at least some improvement."
Article | Thread
Understanding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Physical Fatigue Through the Perspective of Immunosenescence — Yingzhe Luo et al.
Article | Thread
Long Covid research
Systemic increase of AMPA receptors associated with cognitive impairment of long COVID — Fujimoto et al.
"Using [11C]K-2 AMPAR PET imaging, our study successfully revealed a systemic increase in brain AMPAR density in patients with Cog-LC" "our study revealed that two key factors, CCL2 and TNFSF12, are significantly correlated with AMPAR expression."
Article | Thread
Muscle Abnormalities in Nonhospitalised Patients With Post–COVID-19 Condition — Andrea Tryfonos et al.
"Taken together, these observations suggest that the PCC-related muscle phenotype consists of a combination of selective fibre atrophy, lower capacity for aerobic metabolism, oxidative stress and reduced vascular support"
Article | Thread
Circulating Microclots Are Structurally Associated With Neutrophil Extracellular Traps and Their Amounts Are Elevated in Long COVID Patients — Alain R. Thierry et al.
"The plasma concentrations of circulating DNA, [myeloperoxidase] and [neutrophil elastase] are statistically much higher in patients with LC than in healthy patients (5.7‐, 3.5‐ and 14.9‐fold)."
Article | Thread
Long COVID associated with SARS-CoV-2 reinfection among children and adolescents in the omicron era (RECOVER-EHR): a retrospective cohort study — Bingyu Zhang et al.
"In this study involving 465 717 individuals, we observed an increased risk of PASC across multiple organ systems after SARS-CoV-2 reinfection, reinforcing concerns about the long-term consequences of reinfection. These findings emphasise the ongoing risk of PASC with reinfection, regardless of severity, and suggest that the risk of PASC might be cumulative with each successive infection."
Article | Thread
Experiences of living with long COVID during childhood and adolescence: a qualitative study from the child’s perspective — Lillieberg et al.
"A striking finding in the analysis were the fatigue experienced by the children and how severely it influenced the children." "The children in our study also reported a life strewn with impaired physical performance, leaving them unable to do what they had done before, and forcing them to face a new reality, namely an everyday life with the limitations that come with fatigue."
Article | Thread
Long COVID After Acquisition of the Omicron Variant of Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) During Pregnancy Compared With Outside of Pregnancy — Metz, Torri D. et al.
"After propensity score matching, the adjusted long COVID prevalence estimates 6 months after index infection were 10.2% (95% CI, 6.2–14.3%) among those pregnant at infection and 10.6% (95% CI, 8.8–12.4%) among those not pregnant at infection."
Article | Thread
Prevalence and Clinical Impact of Postural Orthostatic Tachycardia Syndrome in Highly Symptomatic Long COVID — Mikael Björnson et al.
"we can confirm, in agreement with previous studies, that roughly one-third of highly symptomatic long COVID patients suffer from POTS, compared with an estimated prevalence of POTS in general population of 0.2% to 1%." "All groups had Frändin-Grimby scores concordant with an active lifestyle before disease onset" "In our cohort, the prevalence of comorbidities and history of psychiatric illness lies well within or below the range of the Swedish population"
Article | Thread
Exploring Alice in Wonderland syndrome in adults with persistent headache after COVID-19: a cross-sectional study in Latin America — Carrión-Nessi et al.
"In this cohort, AIWS was a notable feature in adults with persistent headache after COVID-19, particularly in younger individuals with a history of migraine. Experiencing AIWS symptoms during acute infection increased the odds of post-acute AIWS symptoms nearly tenfold, suggesting SARS-CoV-2 may be a potent trigger."
Article | Thread
Immunological and non-immunological features specific to Long-COVID: multiple overlapping aetiologies and potential biomarkers — Frederique C Ponchel
"Our most important findings however relate to the multiple patterns observed and the overlap (or exclusion) of some features, defining clusters of patients within a syndrome rather than a unique disease (still taken with caution due to small numbers)."
Preprint | Thread
COVID-19-related sickness absence among 4,721 NHS staff in England and its relation with long COVID symptoms: findings from NHS CHECK — Dempsey et al.
"Our study found that prolonged COVID-19 symptoms are associated with increased sickness absence in HCWs in England." "We acknowledge that LC is an episodic condition, and periodic symptom relapses may mean that people with the condition require sickness absence and/or workplace adjustments, even after first returning to work post-infection"
Article | Thread
Preliminary evaluation of a cognitive rehabilitation intervention for post-COVID-19 cognitive impairment: A pilot randomized controlled trial — Jacqueline H. Becker et al.
"The mean change in the intervention group compared to the controls in measures of processing speed, learning, memory, language, and of executive function did not reach the threshold for futility."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
Trial by Error by David Tuller My Letter to Cochrane's Chief Executive Officer
David Tuller has written to Karla Soares-Weiser, chief executive officer in Cochrane, concerning their review on exercise as ME/CFS treatment. The lead author of the review, Lillebeth Larun, recently acknowledged that the review may not apply to patients diagnosed with criteria including the hallmark feature of ME/CFS; PEM. Tuller writes that this makes the need for a new review self-evident.
Article l Thread
Australia RACGP Special Interest Group: New network to support ‘often misunderstood’ conditions
"Associate Professor Shiu said the new group was created to address a growing need in primary care. ‘Conditions such as ME/CFS, long COVID, POTS, and fibromyalgia are increasingly presenting in general practice, yet many GPs feel under-resourced and isolated in managing them,’ he said."
Article | Thread
Australia NHMRC Guideline Development Committee
The National Health and Medical Research Council’s (NHMRC) Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Guideline Development Committee (ME/CFS GDC) held its inaugural meeting on Thursday 28 August 2025 to commence development of clinical practice guidelines for ME/CFS and related conditions, including Long COVID, postural orthostatic tachycardia syndrome (POTS) and fibromyalgia.
Article | Thread
The #NotJustFatigue group has posted a recording of their September 25 livestream event.
Website | Thread
..........
Research news
DePaul University Research is conducting an online survey focused on PEM (Post-Exertional Malaise). Patients who experience PEM, as well as members of the general population, are invited to take part. The survey takes about 10-15 minutes to complete.
Announcement (Facebook) | Survey | Thread
Special Issue
The International Journal of Molecular Sciences is organizing a special issue on ME/CFS called "Molecular Pathologies and Treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome—2nd Edition." Guest Editor is Prof. Dr. Elisa Oltra. The deadline for submissions is 31 March 2026
Article | Thread
ME/CFS Science blog DecodeME: the biggest ME/CFS study ever
A clear article explaining how a genome wide association study gives pointers to what may be causing ME/CFS, takes a closer look at some of the DecodeME findings and describes next steps.
Article | Thread
...........
Coming events
Bateman Horne Center - Free Online Support Groups
Tuesday, October 14, 1:00 - 2:00 PM Mountain Time
Topic: Navigating the Complex Healthcare Industry
Tuesday, October 21, 1:00 - 2:00 PM Mountain Time
Topic: Parenting with Chronic Illness
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
Long Covid Web and Memorial University of Newfoundland are hosting the 3rd Canadian Symposium on Long COVID on October 20 - 21. This event will take place in-person in St. John’s and virtually on Whova platform.
Announcement | Thread
...........
Research
ME/CFS research
Specialised care for severely affected ME/CFS patients — Ola Didrik Saugstad et al.
"We have described a specialised care programme for severely and very severely affected ME/CFS patients. Approximately 30% of the patients benefited significantly from their stay, and about half of them showed at least some improvement."
Article | Thread
Understanding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Physical Fatigue Through the Perspective of Immunosenescence — Yingzhe Luo et al.
Article | Thread
Long Covid research
Systemic increase of AMPA receptors associated with cognitive impairment of long COVID — Fujimoto et al.
"Using [11C]K-2 AMPAR PET imaging, our study successfully revealed a systemic increase in brain AMPAR density in patients with Cog-LC" "our study revealed that two key factors, CCL2 and TNFSF12, are significantly correlated with AMPAR expression."
Article | Thread
Muscle Abnormalities in Nonhospitalised Patients With Post–COVID-19 Condition — Andrea Tryfonos et al.
"Taken together, these observations suggest that the PCC-related muscle phenotype consists of a combination of selective fibre atrophy, lower capacity for aerobic metabolism, oxidative stress and reduced vascular support"
Article | Thread
Circulating Microclots Are Structurally Associated With Neutrophil Extracellular Traps and Their Amounts Are Elevated in Long COVID Patients — Alain R. Thierry et al.
"The plasma concentrations of circulating DNA, [myeloperoxidase] and [neutrophil elastase] are statistically much higher in patients with LC than in healthy patients (5.7‐, 3.5‐ and 14.9‐fold)."
Article | Thread
Long COVID associated with SARS-CoV-2 reinfection among children and adolescents in the omicron era (RECOVER-EHR): a retrospective cohort study — Bingyu Zhang et al.
"In this study involving 465 717 individuals, we observed an increased risk of PASC across multiple organ systems after SARS-CoV-2 reinfection, reinforcing concerns about the long-term consequences of reinfection. These findings emphasise the ongoing risk of PASC with reinfection, regardless of severity, and suggest that the risk of PASC might be cumulative with each successive infection."
Article | Thread
Experiences of living with long COVID during childhood and adolescence: a qualitative study from the child’s perspective — Lillieberg et al.
"A striking finding in the analysis were the fatigue experienced by the children and how severely it influenced the children." "The children in our study also reported a life strewn with impaired physical performance, leaving them unable to do what they had done before, and forcing them to face a new reality, namely an everyday life with the limitations that come with fatigue."
Article | Thread
Long COVID After Acquisition of the Omicron Variant of Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) During Pregnancy Compared With Outside of Pregnancy — Metz, Torri D. et al.
"After propensity score matching, the adjusted long COVID prevalence estimates 6 months after index infection were 10.2% (95% CI, 6.2–14.3%) among those pregnant at infection and 10.6% (95% CI, 8.8–12.4%) among those not pregnant at infection."
Article | Thread
Prevalence and Clinical Impact of Postural Orthostatic Tachycardia Syndrome in Highly Symptomatic Long COVID — Mikael Björnson et al.
"we can confirm, in agreement with previous studies, that roughly one-third of highly symptomatic long COVID patients suffer from POTS, compared with an estimated prevalence of POTS in general population of 0.2% to 1%." "All groups had Frändin-Grimby scores concordant with an active lifestyle before disease onset" "In our cohort, the prevalence of comorbidities and history of psychiatric illness lies well within or below the range of the Swedish population"
Article | Thread
Exploring Alice in Wonderland syndrome in adults with persistent headache after COVID-19: a cross-sectional study in Latin America — Carrión-Nessi et al.
"In this cohort, AIWS was a notable feature in adults with persistent headache after COVID-19, particularly in younger individuals with a history of migraine. Experiencing AIWS symptoms during acute infection increased the odds of post-acute AIWS symptoms nearly tenfold, suggesting SARS-CoV-2 may be a potent trigger."
Article | Thread
Immunological and non-immunological features specific to Long-COVID: multiple overlapping aetiologies and potential biomarkers — Frederique C Ponchel
"Our most important findings however relate to the multiple patterns observed and the overlap (or exclusion) of some features, defining clusters of patients within a syndrome rather than a unique disease (still taken with caution due to small numbers)."
Preprint | Thread
COVID-19-related sickness absence among 4,721 NHS staff in England and its relation with long COVID symptoms: findings from NHS CHECK — Dempsey et al.
"Our study found that prolonged COVID-19 symptoms are associated with increased sickness absence in HCWs in England." "We acknowledge that LC is an episodic condition, and periodic symptom relapses may mean that people with the condition require sickness absence and/or workplace adjustments, even after first returning to work post-infection"
Article | Thread
Preliminary evaluation of a cognitive rehabilitation intervention for post-COVID-19 cognitive impairment: A pilot randomized controlled trial — Jacqueline H. Becker et al.
"The mean change in the intervention group compared to the controls in measures of processing speed, learning, memory, language, and of executive function did not reach the threshold for futility."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 6th October 2025
News and advocacy
UK Action for ME Big Survey 2025
The 5 yearly survey of people in the UK with ME/CFS will open on Monday 13th October. It has been developed by AfME in collaboration with Dr Katherine Cheston at Durham University.
Details | Thread
UK Action for ME The recording from the 2025 Annual General Meeting (AGM) is now available on YouTube. Duration 1 hour 9 minutes.
The Annual report and accounts for 2024/5 are published on their website.
AGM video | Annual report | Thread
UK ME Association 2024 Annual report has been published. Largely a financial report, it also includes the Trustees report with some information on developments and plans including research funding.
Report listing | Thread
UK MEA Governance Review Stage 1 Announcement Autumn 2025
"In 2025, the board commissioned an independent governance review to understand what is working well, and to identify areas where improvement is needed... "
Areas for development include: "Leadership and role clarity: At the time of the review, the organisation operated without a Chief Executive. Trustees were heavily involved in day-to-day operational matters, which blurred the lines between governance and management."
The report also highlights the need for better strategic planning, staff training and management, and member engagement.
Article | Thread
..............
Fundraising
David Tuller's Trial by Error Fall 2025
New fundraising to secure David Tuller's important work reporting on ME, Long Covid, MUS and much more, via his position at Berkeley University till June 2026. The aim is to raise $68 000 US by November 7th.
Fundraising l Thread
............
Coming events
Solve ME Webinar: The Unified Platform: Advancing Research Across ME/CFS, Long Covid, and Other Chronic Conditions
Tuesday, October 14, 3 PM Pacific / 6 PM Eastern
Webinar panelists will discuss the unhide® Solve Together Unified Platform
Announcement | Registration | Thread
Long Covid Web and Memorial University of Newfoundland are hosting the 3rd Canadian Symposium on Long COVID on October 20 - 21. This event will take place in-person in St. John’s and virtually on Whova platform.
Announcement | Thread
...........
Research
ME/CFS research
Development and validation of blood-based diagnostic biomarkers for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) using EpiSwitch® 3-dimensional genomic regulatory immuno-genetic profiling — Hunter et al.
"The top 200 probes identified through feature importance analysis were found to be distributed across multiple chromosomal regions, suggesting a polygenic signature of ME/CFS"
Article | Thread
Relationships between fatigue, cognitive function, and upright activity in a randomized trial of oxaloacetate for myalgic encephalomyelitis/chronic fatigue syndrome — Vernon et al.
"fatigue was only marginally predictive of UP Time, and no clear interaction by treatment group emerged, indicating that UP Time may be influenced by additional factors such as orthostatic intolerance, post-exertional malaise, or pacing"
Article | Thread
Pacing with a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a feasibility study — N. Clague-Baker et al.
"Measuring the effect of pacing with an HRM requires a combination of physical and questionnaire-based measures, as well as interview methods to ensure a comprehensive understanding of any effect. People with ME/CFS and LC continue to use an HRM after the end of the study, which suggests they find it beneficial."
Article | Thread
Wearable technology in the management of complex chronic illness: preliminary survey results on self-reported outcomes — Sawyer et al.
"Home-monitoring based mobile applications are feasible and acceptable for a motivated subgroup of people with energy-limiting complex chronic illnesses, and are associated with self-reported benefits in energy management and participation in daily activities."
Article | Thread
Comparative risk of post-acute sequelae among adults following SARS-CoV-2 or influenza virus infection: A retrospective cohort study among United States adults — Joseph A. Lewnard et al.
"Whereas PAS are widely known to occur after COVID-19, our results suggest that the risk of PAS associated with influenza may be under-appreciated and worthy of further study."
Article | Thread
The association of fatigue and pain with cognitive test performance in patients with myalgic encephalomyelitis/chronic fatigue syndrome — Oosterman et al.
Article | Thread
Psychometric evaluation of the PROMIS® physical function short form 12a for use by adults with myalgic encephalomyelitis/chronic fatigue syndrome — Yang et al.
Article | Thread
Systematic review: digital biomarkers of fatigue in chronic diseases — Aboagye et al.
"The results highlight several consistent patterns by which fatigue manifests and how digital biomarkers can offer objective insights into this subjective and often debilitating symptom."
Article | Thread
Long Covid research
Discovery of molecular signature of long-term psychiatric sequelae in COVID-19 through proteome profiling of dried blood spots — Baik et al.
"findings suggest that alterations in immune, glucose, and lipid metabolism pathways, along with neuroinflammation and neurodegeneration, contribute to the psychiatric PASC phenotype"
Article | Thread
VEGFA sex-specific signature is associated to long COVID symptom persistence — Farré et al.
"VEGFA emerged as a central node associated with symptom persistence and showed distinct expression patterns across sexes. These findings suggest hormonal regulation may influence long COVID"
Article | Thread
Prevalence and Clinical Impact of Postural Orthostatic Tachycardia Syndrome in Highly Symptomatic Long COVID — Mikael Björnson et al.
"one-third of highly symptomatic patients with long COVID were diagnosed with POTS. The group diagnosed with POTS had significantly lower physical capacity and higher heart rate during physical capacity tests compared with non-POTS patients. The similarities in symptom prevalence and types of symptoms among long COVID patients with and without POTS pose clinical challenges in the clinical work-up"
Article | Thread
The effect of uninterrupted and interrupted sitting] on vascular function in adults with long COVID — Nick Hudson et al.
"The findings suggest that individuals with long COVID are not disproportionately vulnerable to the acute vascular effects of prolonged sitting compared to controls."
Article | Thread
Post Covid-19 Condition as a Diagnosis: A Qualitative Study on Epistemological Tensions Among Experts in Sweden — Anna Bredström and Sofia Morberg Jämterud
"The key conflict among experts concerns the extent to which post Covid should be considered a unique illness requiring specialist care or whether it has more in common with other long‐term illnesses."
Article | Thread
Enduring Outcomes of COVID-19 Work Absences on the US Labor Market — Julia M. Dennett et al.
"Ongoing SARS-CoV-2 circulation has continued to negatively affect the US labor force through 2024 by increasing health-related absences and subsequent exits from the labor market" "Labor force exits after a health-related absence also continued to be elevated, with 13.1% more exits in the postpandemic period compared with before the pandemic (13 500 monthly exits)."
Article | Thread
Return to work with long COVID: a rapid review of support and challenges — Sarah Daniels et al.
"Barriers to the provision of support at organisational level included lack of understanding of LC symptoms, insufficient workplace guidance and educational gaps among managers. Individual barriers included threat of income loss, remote working and disconnection from the workplace."
Article | Thread
Related Research
Tired minds, normal scores: rethinking cognitive fatigue in multiple sclerosis — Spinetti and Zarbo
"One of the most frustrating experiences reported by people with MS is the mismatch between how they feel and how they are clinically assessed." "This dissonance is often interpreted, mistakenly, as exaggeration or emotional overlay. In reality, it reflects a fundamental failure of current testing paradigms to capture the temporal dynamics and ecological reality of cognitive fatigue."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
News and advocacy
UK Action for ME Big Survey 2025
The 5 yearly survey of people in the UK with ME/CFS will open on Monday 13th October. It has been developed by AfME in collaboration with Dr Katherine Cheston at Durham University.
Details | Thread
UK Action for ME The recording from the 2025 Annual General Meeting (AGM) is now available on YouTube. Duration 1 hour 9 minutes.
The Annual report and accounts for 2024/5 are published on their website.
AGM video | Annual report | Thread
UK ME Association 2024 Annual report has been published. Largely a financial report, it also includes the Trustees report with some information on developments and plans including research funding.
Report listing | Thread
UK MEA Governance Review Stage 1 Announcement Autumn 2025
"In 2025, the board commissioned an independent governance review to understand what is working well, and to identify areas where improvement is needed... "
Areas for development include: "Leadership and role clarity: At the time of the review, the organisation operated without a Chief Executive. Trustees were heavily involved in day-to-day operational matters, which blurred the lines between governance and management."
The report also highlights the need for better strategic planning, staff training and management, and member engagement.
Article | Thread
..............
Fundraising
David Tuller's Trial by Error Fall 2025
New fundraising to secure David Tuller's important work reporting on ME, Long Covid, MUS and much more, via his position at Berkeley University till June 2026. The aim is to raise $68 000 US by November 7th.
Fundraising l Thread
............
Coming events
Solve ME Webinar: The Unified Platform: Advancing Research Across ME/CFS, Long Covid, and Other Chronic Conditions
Tuesday, October 14, 3 PM Pacific / 6 PM Eastern
Webinar panelists will discuss the unhide® Solve Together Unified Platform
Announcement | Registration | Thread
Long Covid Web and Memorial University of Newfoundland are hosting the 3rd Canadian Symposium on Long COVID on October 20 - 21. This event will take place in-person in St. John’s and virtually on Whova platform.
Announcement | Thread
...........
Research
ME/CFS research
Development and validation of blood-based diagnostic biomarkers for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) using EpiSwitch® 3-dimensional genomic regulatory immuno-genetic profiling — Hunter et al.
"The top 200 probes identified through feature importance analysis were found to be distributed across multiple chromosomal regions, suggesting a polygenic signature of ME/CFS"
Article | Thread
Relationships between fatigue, cognitive function, and upright activity in a randomized trial of oxaloacetate for myalgic encephalomyelitis/chronic fatigue syndrome — Vernon et al.
"fatigue was only marginally predictive of UP Time, and no clear interaction by treatment group emerged, indicating that UP Time may be influenced by additional factors such as orthostatic intolerance, post-exertional malaise, or pacing"
Article | Thread
Pacing with a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a feasibility study — N. Clague-Baker et al.
"Measuring the effect of pacing with an HRM requires a combination of physical and questionnaire-based measures, as well as interview methods to ensure a comprehensive understanding of any effect. People with ME/CFS and LC continue to use an HRM after the end of the study, which suggests they find it beneficial."
Article | Thread
Wearable technology in the management of complex chronic illness: preliminary survey results on self-reported outcomes — Sawyer et al.
"Home-monitoring based mobile applications are feasible and acceptable for a motivated subgroup of people with energy-limiting complex chronic illnesses, and are associated with self-reported benefits in energy management and participation in daily activities."
Article | Thread
Comparative risk of post-acute sequelae among adults following SARS-CoV-2 or influenza virus infection: A retrospective cohort study among United States adults — Joseph A. Lewnard et al.
"Whereas PAS are widely known to occur after COVID-19, our results suggest that the risk of PAS associated with influenza may be under-appreciated and worthy of further study."
Article | Thread
The association of fatigue and pain with cognitive test performance in patients with myalgic encephalomyelitis/chronic fatigue syndrome — Oosterman et al.
Article | Thread
Psychometric evaluation of the PROMIS® physical function short form 12a for use by adults with myalgic encephalomyelitis/chronic fatigue syndrome — Yang et al.
Article | Thread
Systematic review: digital biomarkers of fatigue in chronic diseases — Aboagye et al.
"The results highlight several consistent patterns by which fatigue manifests and how digital biomarkers can offer objective insights into this subjective and often debilitating symptom."
Article | Thread
Long Covid research
Discovery of molecular signature of long-term psychiatric sequelae in COVID-19 through proteome profiling of dried blood spots — Baik et al.
"findings suggest that alterations in immune, glucose, and lipid metabolism pathways, along with neuroinflammation and neurodegeneration, contribute to the psychiatric PASC phenotype"
Article | Thread
VEGFA sex-specific signature is associated to long COVID symptom persistence — Farré et al.
"VEGFA emerged as a central node associated with symptom persistence and showed distinct expression patterns across sexes. These findings suggest hormonal regulation may influence long COVID"
Article | Thread
Prevalence and Clinical Impact of Postural Orthostatic Tachycardia Syndrome in Highly Symptomatic Long COVID — Mikael Björnson et al.
"one-third of highly symptomatic patients with long COVID were diagnosed with POTS. The group diagnosed with POTS had significantly lower physical capacity and higher heart rate during physical capacity tests compared with non-POTS patients. The similarities in symptom prevalence and types of symptoms among long COVID patients with and without POTS pose clinical challenges in the clinical work-up"
Article | Thread
The effect of uninterrupted and interrupted sitting] on vascular function in adults with long COVID — Nick Hudson et al.
"The findings suggest that individuals with long COVID are not disproportionately vulnerable to the acute vascular effects of prolonged sitting compared to controls."
Article | Thread
Post Covid-19 Condition as a Diagnosis: A Qualitative Study on Epistemological Tensions Among Experts in Sweden — Anna Bredström and Sofia Morberg Jämterud
"The key conflict among experts concerns the extent to which post Covid should be considered a unique illness requiring specialist care or whether it has more in common with other long‐term illnesses."
Article | Thread
Enduring Outcomes of COVID-19 Work Absences on the US Labor Market — Julia M. Dennett et al.
"Ongoing SARS-CoV-2 circulation has continued to negatively affect the US labor force through 2024 by increasing health-related absences and subsequent exits from the labor market" "Labor force exits after a health-related absence also continued to be elevated, with 13.1% more exits in the postpandemic period compared with before the pandemic (13 500 monthly exits)."
Article | Thread
Return to work with long COVID: a rapid review of support and challenges — Sarah Daniels et al.
"Barriers to the provision of support at organisational level included lack of understanding of LC symptoms, insufficient workplace guidance and educational gaps among managers. Individual barriers included threat of income loss, remote working and disconnection from the workplace."
Article | Thread
Related Research
Tired minds, normal scores: rethinking cognitive fatigue in multiple sclerosis — Spinetti and Zarbo
"One of the most frustrating experiences reported by people with MS is the mismatch between how they feel and how they are clinically assessed." "This dissonance is often interpreted, mistakenly, as exaggeration or emotional overlay. In reality, it reflects a fundamental failure of current testing paradigms to capture the temporal dynamics and ecological reality of cognitive fatigue."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Last edited by a moderator:
Week beginning 13th October 2025
News and articles
Austria
The rollout of Austria's national action plan for post-acute infection syndromes (PAIS), including ME/CFS, faces further delays. Although the plan was publicly presented in late 2024, it has not yet been approved by the Federal Target Steering Commission. A new approval is now expected only by mid-2026.
Article | Thread
Germany
The Deutsche Gesellschaft für ME/CFS, in collaboration with the Charité Fatigue Center, has developed a clinical practice guide for ME/CFS and Long COVID. It includes essential information about the condition, practical guidance for procedures and questions in everyday practice, as well as evidence-based information on treatment.
Article | Thread
UK Welsh Parliament A Senned debate on severe and very severe ME/CFS planned for this week has been postponed to 26th November. The proposal asks the government to "respond to the concerns raised in the Coroner in England’s Prevention of Future Deaths Report, and explain what practical steps they will take to ensure that no patient in Wales will ever be placed in such tragic circumstances as those described in the report".
Proposal |Thread
Canada The Museum of Vancouver has an exhibition called Living with Long COVID which runs from October 4, 2025 to March 22, 2026. This exhibition "invites visitors into the often-invisible world of those living with the life-altering effects of a COVID-19 infection."
Website | Thread
Rolling Stone Long Covid is Real - And It's Changing an Entire Generation
An in depth article about Long Covid which focuses on its impact on children. Quote: "When you have a disability people can’t see you don’t get as much empathy."
Article | Thread
.............
Fundraising
David Tuller's Trial by Error Fall 2025
New fundraising to secure David Tuller's important work reporting on ME, Long Covid, MUS and much more, via his position at Berkeley University till June 2026. The aim is to raise $68 000 US by November 7th.
Fundraising l Thread
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Advocacy
Petition in Sweden Withdraw national guidelines for post-infectious conditions now!
Patient advocate "the ME Inquiry Report" has initiated a petition for the removal of the guidelines for post-Covid and other post-infectious conditions (including ME/CFS). The guidelines have received a lot of criticism for putting patients at risk. The petition also asks for the National Audit Office to review the authorities' work.
Petition l Thread
UK Action for ME Big Survey 2025
Open to UK residents. Closing date 27th January 2026
"Every 5 years, we develop our Big Survey. It enables us to gather large amounts of data which can then be analysed and used to support our wider work and illustrate the impact of ME."
Adult's survey | Young people's survey | Thread
...............
Research news
David Tuller Interview with Chris Ponting about PRIME, a project to increase infrastructure for ME/CFS research
PRIME is a partnership between Action for ME and the University of Edinburgh to develop an infrastructure for research into ME/CFS. Tuller speaks with professor Christ Ponting, who is one of the overseers of PRIME. Duration: 15 minutes.
Youtube l Thread
Genes pointing to the brain: DecodeME part II
ME/CFS Science blog delves deeper into the DecodeME results and the genes associated with ME/CFS, concluding that "The clearest signals point to genes such as CA10, SHISA6, SOX6, LRRC7, and DCC, which are involved in neuronal development and communication in the brain."
Article | Thread
...............
Coming events
ICanCME Canadian Collaborative Conference on ME: Nothing About Us Without US
Three half day sessions, November 4-6, from 1 to 5 PM Eastern Time.
Announcement | Registration | Thread
................
Research
ME/CFS research
Altered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndrome — Davenport et al.
"Failure to use 2-day CPET prevented the authors from adequately testing their conclusion that PEM is related to participants’ effort preference, as they did not evaluate physiological performance under conditions involving objective, standardized criteria for maximal exertion." "study samples were not adequately matched using deconditioned control participants, which would be necessary to differentiate the effects of PI-ME/CFS from deconditioning."
Article | Authors' Reply | Thread
Autonomic phenotyping, brain blood flow control, and cognitive-motor-integration in Long COVID and myalgic encephalomyelitis/chronic fatigue syndrome: A pilot study — Badhwar et al.
"in ME/CFS we observed a greater reduction of cerebrovascular resistance (p = 0.041) and impaired autoregulation (p = 0.042) during hypercapnia alongside impaired cognitive-motor integration (p < 0.02), and in Long COVID we observed reduced peripheral and end-tidal oxygen (p < 0.04) and less vagal withdrawal during tilt (p = 0.028)."
Article | Thread
Understanding concussion in myalgic encephalomyelitis/chronic fatigue syndrome: Findings from the 2023 National Health Interview study — Zoe Sirotiak et al.
"In a nationally representative sample, individuals with ME/CFS appear to have over 4.5 times the odds of a concussion in the past year compared to individuals without ME/CFS after accounting for sociodemographic factors."
Article | Thread
Seeing is Believing: Identifying the “Ideal Manifestation of Hidden Disability” in Ontario’s and Quebec’s Social Benefits Tribunals — Pascale Malenfant
"Akin to the ideal victim, the ideal claimant of hidden disability must navigate a system built by (and from the perspective of) those with specific preconceived notions of what it means to be a person with a disability and to present as one."
Article | Thread
Analysis of Potential Subgroups in Vaes ME/CFS Patient Clusters — Erik Squires
"Our secondary analysis suggests that the 13 clusters identified by Vaes can be organized into two broader structures defined by overall symptom intensity relative to PEM severity."
Preprint | Thread
Long Covid research
Transcriptomic Profiling of Endothelial Progenitor Cells in Post-COVID-19 Patients: Insights at 3 and 6-Months Post-Infection — Poyatos et al.
"Transcriptomic profiling identified differentially expressed genes (DEGs) associated with endothelial homeostasis, inflammation, oxidative stress, and thrombosis. Post-COVID [Endothelial Progenitor Cells] showed downregulation of NOS3, KLF2, ANGPT1, PIK3R3, GBX2, GDF6, SMAD6, SRC, and TGFB1, and upregulation of CASP1, CXCL5, IL12A, SOD2, TIMP3, and TLR2."
Article | Thread
Mechanisms of sex differences in acute and long COVID sequelae in mice — Jennifer A. Liu et al.
"female mice exhibited persistent neurocognitive and behavioral impairments, along with greater frequencies of inflammatory myeloid subsets, neuroinflammation, and dysregulated T cell subsets" "XX animals independent of chromosome Y presented with neuroinflammation and PASC along with infection-induced upregulation of the X-linked genes Xist and Tlr7 that regulate inflammation and chronic disease outcomes."
Preprint | Thread
Inflammatory predictors of Post-COVID fatigue — Nuber-Champier et al.
"Our study highlights the complex interplay between acute immune markers and post-COVID fatigue. Key inflammatory markers, particularly TNFα, IL-1RA, and IFNγ, appear to influence different dimensions of fatigue and cognitive fatigue awareness months after infection."
Article | Thread
Alterations of the amygdala in post-COVID olfactory dysfunction — Thaploo et al.
"Our results add to the growing body of evidence that links post COVID-19 condition with cerebral changes, particularly in olfactory processing regions, and suggests that these alterations may be drivers of persistent symptoms."
Article | Thread
Cardiopulmonary crosstalk in Long COVID: a systematic review of emerging evidence — Arab et al.
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
News and articles
Austria
The rollout of Austria's national action plan for post-acute infection syndromes (PAIS), including ME/CFS, faces further delays. Although the plan was publicly presented in late 2024, it has not yet been approved by the Federal Target Steering Commission. A new approval is now expected only by mid-2026.
Article | Thread
Germany
The Deutsche Gesellschaft für ME/CFS, in collaboration with the Charité Fatigue Center, has developed a clinical practice guide for ME/CFS and Long COVID. It includes essential information about the condition, practical guidance for procedures and questions in everyday practice, as well as evidence-based information on treatment.
Article | Thread
UK Welsh Parliament A Senned debate on severe and very severe ME/CFS planned for this week has been postponed to 26th November. The proposal asks the government to "respond to the concerns raised in the Coroner in England’s Prevention of Future Deaths Report, and explain what practical steps they will take to ensure that no patient in Wales will ever be placed in such tragic circumstances as those described in the report".
Proposal |Thread
Canada The Museum of Vancouver has an exhibition called Living with Long COVID which runs from October 4, 2025 to March 22, 2026. This exhibition "invites visitors into the often-invisible world of those living with the life-altering effects of a COVID-19 infection."
Website | Thread
Rolling Stone Long Covid is Real - And It's Changing an Entire Generation
An in depth article about Long Covid which focuses on its impact on children. Quote: "When you have a disability people can’t see you don’t get as much empathy."
Article | Thread
.............
Fundraising
David Tuller's Trial by Error Fall 2025
New fundraising to secure David Tuller's important work reporting on ME, Long Covid, MUS and much more, via his position at Berkeley University till June 2026. The aim is to raise $68 000 US by November 7th.
Fundraising l Thread
..............
Advocacy
Petition in Sweden Withdraw national guidelines for post-infectious conditions now!
Patient advocate "the ME Inquiry Report" has initiated a petition for the removal of the guidelines for post-Covid and other post-infectious conditions (including ME/CFS). The guidelines have received a lot of criticism for putting patients at risk. The petition also asks for the National Audit Office to review the authorities' work.
Petition l Thread
UK Action for ME Big Survey 2025
Open to UK residents. Closing date 27th January 2026
"Every 5 years, we develop our Big Survey. It enables us to gather large amounts of data which can then be analysed and used to support our wider work and illustrate the impact of ME."
Adult's survey | Young people's survey | Thread
...............
Research news
David Tuller Interview with Chris Ponting about PRIME, a project to increase infrastructure for ME/CFS research
PRIME is a partnership between Action for ME and the University of Edinburgh to develop an infrastructure for research into ME/CFS. Tuller speaks with professor Christ Ponting, who is one of the overseers of PRIME. Duration: 15 minutes.
Youtube l Thread
Genes pointing to the brain: DecodeME part II
ME/CFS Science blog delves deeper into the DecodeME results and the genes associated with ME/CFS, concluding that "The clearest signals point to genes such as CA10, SHISA6, SOX6, LRRC7, and DCC, which are involved in neuronal development and communication in the brain."
Article | Thread
...............
Coming events
ICanCME Canadian Collaborative Conference on ME: Nothing About Us Without US
Three half day sessions, November 4-6, from 1 to 5 PM Eastern Time.
Announcement | Registration | Thread
................
Research
ME/CFS research
Altered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndrome — Davenport et al.
"Failure to use 2-day CPET prevented the authors from adequately testing their conclusion that PEM is related to participants’ effort preference, as they did not evaluate physiological performance under conditions involving objective, standardized criteria for maximal exertion." "study samples were not adequately matched using deconditioned control participants, which would be necessary to differentiate the effects of PI-ME/CFS from deconditioning."
Article | Authors' Reply | Thread
Autonomic phenotyping, brain blood flow control, and cognitive-motor-integration in Long COVID and myalgic encephalomyelitis/chronic fatigue syndrome: A pilot study — Badhwar et al.
"in ME/CFS we observed a greater reduction of cerebrovascular resistance (p = 0.041) and impaired autoregulation (p = 0.042) during hypercapnia alongside impaired cognitive-motor integration (p < 0.02), and in Long COVID we observed reduced peripheral and end-tidal oxygen (p < 0.04) and less vagal withdrawal during tilt (p = 0.028)."
Article | Thread
Understanding concussion in myalgic encephalomyelitis/chronic fatigue syndrome: Findings from the 2023 National Health Interview study — Zoe Sirotiak et al.
"In a nationally representative sample, individuals with ME/CFS appear to have over 4.5 times the odds of a concussion in the past year compared to individuals without ME/CFS after accounting for sociodemographic factors."
Article | Thread
Seeing is Believing: Identifying the “Ideal Manifestation of Hidden Disability” in Ontario’s and Quebec’s Social Benefits Tribunals — Pascale Malenfant
"Akin to the ideal victim, the ideal claimant of hidden disability must navigate a system built by (and from the perspective of) those with specific preconceived notions of what it means to be a person with a disability and to present as one."
Article | Thread
Analysis of Potential Subgroups in Vaes ME/CFS Patient Clusters — Erik Squires
"Our secondary analysis suggests that the 13 clusters identified by Vaes can be organized into two broader structures defined by overall symptom intensity relative to PEM severity."
Preprint | Thread
Long Covid research
Transcriptomic Profiling of Endothelial Progenitor Cells in Post-COVID-19 Patients: Insights at 3 and 6-Months Post-Infection — Poyatos et al.
"Transcriptomic profiling identified differentially expressed genes (DEGs) associated with endothelial homeostasis, inflammation, oxidative stress, and thrombosis. Post-COVID [Endothelial Progenitor Cells] showed downregulation of NOS3, KLF2, ANGPT1, PIK3R3, GBX2, GDF6, SMAD6, SRC, and TGFB1, and upregulation of CASP1, CXCL5, IL12A, SOD2, TIMP3, and TLR2."
Article | Thread
Mechanisms of sex differences in acute and long COVID sequelae in mice — Jennifer A. Liu et al.
"female mice exhibited persistent neurocognitive and behavioral impairments, along with greater frequencies of inflammatory myeloid subsets, neuroinflammation, and dysregulated T cell subsets" "XX animals independent of chromosome Y presented with neuroinflammation and PASC along with infection-induced upregulation of the X-linked genes Xist and Tlr7 that regulate inflammation and chronic disease outcomes."
Preprint | Thread
Inflammatory predictors of Post-COVID fatigue — Nuber-Champier et al.
"Our study highlights the complex interplay between acute immune markers and post-COVID fatigue. Key inflammatory markers, particularly TNFα, IL-1RA, and IFNγ, appear to influence different dimensions of fatigue and cognitive fatigue awareness months after infection."
Article | Thread
Alterations of the amygdala in post-COVID olfactory dysfunction — Thaploo et al.
"Our results add to the growing body of evidence that links post COVID-19 condition with cerebral changes, particularly in olfactory processing regions, and suggests that these alterations may be drivers of persistent symptoms."
Article | Thread
Cardiopulmonary crosstalk in Long COVID: a systematic review of emerging evidence — Arab et al.
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky