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