News in Brief - September 2026
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Week beginning 31st August 2026
News, advocacy and articles
Scotland The Scottish Parliament’s Health, Care and Support Committee meeting on 2nd September included Long Covid and ME/CFS. BrokenBattery has posted highlights on YouTube. "It includes the lack of specialist services, difficulties accessing appropriate care, harmful exercise advice, NICE guidelines, and calls for action rather than further strategy."
Video (35 minutes) | Thread
UK BACME ME/CFS Tube Feeding Survey Report by the British Association of Clinicians in ME/CFS.
A detailed report including quotes from clinicians, carers and people with ME/CFS. The report concludes with a list of recommendations including nutritional screening; development of standardised clinical guidance; and individualised ME/CFS-informed implementation.
Report | Thread
Smithsonian magazine For Many Americans, Covid Is Still a Chronic, Disabling Disease. These Scientists Are Working Tirelessly to Bring Them Relief - by Mike Mariani
Feature article on research into Long Covid.
Article l Thread
Trial by Error by David Tuller Patient Advocate Anil van der Zee Receives Dutch Royal Distinction
Anil van der Zee received the award Knight in the Order of Orange-Nassau for his outstanding patient advocacy work (see last week's news brief).
David Tuller shares a letter of recommendation he wrote beforehand:
"I am delighted to recommend Anil van der Zee for a royal distinction in recognition of his heroic efforts to highlight the situation of people with ME and related illnesses."
Article l Thread
Mother Jones The Relentless Work of Being Sick
Julia Métraux interviews cultural anthropologist Emily Lim Rogers on her new book "Sick Work: Exhaustion, Labor, and Invisible Illness".
The book examines the labor it takes in being sick, through the lens of ME/CFS.
Article l Thread
Sweden The union news site Arbetsvärlden writes about the hardship patients with ME face when assessed for being fit to work in a system with little understanding of ME and fluctuating illnesses. Johan Helander tells his story of being deemed fit to work despite his doctor saying he may never be able to work again. After six years of sick pay, all financial support has now stopped.
In a follow up article the Swedish Social Insurance Agency say that they make a broad consideration in these cases.
Article (Swedish) l Article (Swedish) l Thread
Germany
A German petition states that people with ME/CFS should not be obliged to undergo rehabilitation against their will. Refusal or non-participation in rehabilitation must not lead to disadvantages under social law. It has been signed more than 3000 times and has 30.000 signatures as target.
Petition | Thread
........
Coming events
September
Solve ME Webinar A Safe, Accessible Treatment for ME/CFS? The Mitochondrial Stabilizer IVO-21 Study
Tuesday, September 8, 3:00 pm - 4:00 pm PDT
Dr. Jay H. Chung from the NIH (National Institutes of Health) will discuss his research.
Announcement | Registration | Thread
USA Stanford Community Symposium on the Molecular Basis of ME/CFS
"On behalf of Dr. Ronald Davis, the Stanford Genome Technology Center is pleased to host a virtual Community Symposium on Friday, September 11, at 8:00 AM. (UK 4pm)
The symposium will feature a series of presentations from distinguished speakers, who will share the latest ME/CFS research updates and insights."
Zoom registration | Thread
NIH RECOVER Webinar Growing up with Long COVID—Risk factors and school impacts
Tuesday, September 15 at noon EDT
Researchers will share recent findings from the RECOVER pediatric observational study.
Announcement | Thread
Bateman Horne Center Free Online Support Group
Tuesday, September 15, 1 - 2 pm MDT
Topic: When Our Bodies, Life and/or Others Don’t Cooperate
Advance registration required, registration link shows time in your time zone.
Registration | Thread
USA - CDC Stakeholder Engagement and Communication (SEC) Call
Friday, September 18, 3:00 - 4:30 pm Eastern Time
Agenda items include "Updates from the CDC" (Joanna Regan) and “How Progress in Long COVID is helping us understand ME/CFS” (Nancy Klimas). There will be a Q&A session at the end.
Announcement | Thread
NIH webinar From Mechanisms to Medicine: Rethinking the Discovery-to-Care Continuum in Multi-System Disorders
September 23-24, in person and virtual
Announcement | Registration | Thread
PRIME International Symposium a two-day hybrid event exploring the latest developments in ME/CFS research.
9 am on 28 September to 2 pm on 29 September at the John McIntyre Conference Centre in Edinburgh, with online attendance also available.
"The PRIME Symposium will see the launch of the new International Genetic Epidemiology of ME/CFS Consortium, as well as provide a platform for Early Career Researchers and the Patient and Public Involvement Research Involvement Hub to present exciting new research and supporting activities."
Article | Preliminary programme | Registration | Thread
October
Young EMERG International Workshop in Valencia, Spain
The second Young EMERG International Workshop will take place in Valencia from 7-8 October. It focuses on scientific & personal development of young ME/CFS researchers, exploring leading collaborations and PI Speed Dating.
Announcement | Bluesky | Thread
.........
Research news and commentary
Nature When do infections lead to long COVID? Scientists close in on triggers and treatments for post-viral syndromes - by Simon Makin
News feature article on current hypothesis and research projects into ME/CFS and Long Covid. First part of the article is open to all.
Article l Thread
The Sick Times
A new U.S. clinical trials program called PROBE-PASC was announced at the conference in Amsterdam. The program received initial funding of $8 million from a Department of Defense (DOD) grant. The first clinical trial in the series will test the monoclonal antibody Pemgarda, along with the immune-modulating drug hydroxychloroquine.
Article | Thread
ME/CFS Science
In a new article, ME/CFS Science Blog highlights how the hormone prolactin rises much higher in ME/CFS patients after taking buspirone than in controls. Forum member forestglip has written a more detailed scientific overview of these findings.
Article | Thread
RECOVER - a NIH funded Long Covid research initiative
RECOVER-VITAL clinical trial finds no benefit of extended duration of PAXLOVID for Long COVID
An summary of a recent negative study on a prolonged course with the antiviral treatment PAXLOVID for Long Covid.
Article l Thread
Research update: September 2026
A short presentation of recent publications from RECOVER.
Article l Thread
.........
Research
ME/CFS research
Comprehensive review of myalgic encephalomyelitis/chronic fatigue syndrome — Jeyaraman et al
Opinion. "To address the challenges of the unique features, complexity and heterogeneity of ME/CFS, strong partnerships with patients are crucial for the design and implementation of research."
Article | Thread
Long Covid research
Nirmatrelvir–ritonavir targeting viral persistence in post-COVID-19 condition (long COVID) in the USA (RECOVER-VITAL): a randomised, double-blind, placebo-controlled, phase 2 trial — Baden et al
"Nirmatrelvir–ritonavir for 15 days or 25 days showed no evidence of benefit in long COVID" "Across all three phenotypes, substantial percentages of participants showed improvement over time by PROMs and less so by performance measures."
Article | Thread
Impaired Auditory Sensory Gating as a Neurophysiological Correlate of Cognitive Fatigue in Long COVID — Mischke and Zaehle
"The results showed that auditory sensory gating accounted for unique variance in cognitive fatigue beyond the effects of depressive symptoms and demographic factors."
Article | Thread
Registered interventional trials fail to cover patient-prioritised treatments in Post-COVID condition (PCC) — Gabriel et al
"The most pronounced discrepancy between research activity and patient priorities, however, concerns neither pharmacological interventions nor a specific treatment modality, but a highly relevant patient-centred outcome: PEM."
Preprint | Thread
Disabling Dynamics: Long Covid and the Challenges of Securitizing Slow-Onset Health Threats — Finkelstein
"Empirical analysis has shown that acute Covid-19’s spatiotemporal compression and spectacular mortality enabled leaders to frame it as a national emergency to a receptive audience and mobilize resources accordingly, while Long Covid’s slow-onset trajectory and nearly invisible harm profile among discountable populations make it far less amendable to such a framing, despite its mounting socioeconomic consequences."
Article | Thread
Using hyperpolarised xenon magnetic resonance imaging to explore breathlessness in long COVID: results from the EXPLAIN study — Ng et al
"Our results show that in the majority of never-hospitalised LC participants, gas transfer measurements using 129Xe-MRI were similar to those of fully recovered controls."
Article | Thread
Persistent fibroblast-related tissue activity in long COVID after moderate-to-severe acute COVID-19 assessed by [⁶⁸Ga]Ga-FAPI PET/CT — Hasan et al
"The paravertebral muscle [⁶⁸Ga]Ga-FAPI SUVmax was significantly higher in PASC patients compared to controls (median: 6.35 vs. 3.65; p < 0.001)."
Article | Thread
Microbiome dysbiosis in long COVID: a scoping review of mechanistic insights, symptom associations, and therapeutic targets — Cano-Cevallos et al
"These findings have been described in association with systemic inflammation, immune dysregulation, and disruptions in gut–lung and gut–brain axis signaling; however, these relationships are largely based on observational data and conceptual interpretations rather than confirmed causal mechanisms."
Article | Thread
Measurement properties of the 30-second sit-to-stand test in post COVID-19 condition: Results from the PYCNOVID randomised controlled trial — Braun et al
"Consistent with our hypothesis, boxplots of STS performance across the four PEM grades suggested that individuals with very severe PEM completed fewer 30s-STS repetitions, whereas the other three PEM groups displayed comparable values."
Article | Thread
Case Report: Post-Mortem Analysis of Long-Term Inflammation After Mild COVID-19 — Wu et al
"Notably, in contrast to early epidemiological studies which established PACS as a multisystem disorder, our findings extend these observations by providing tissue-level evidence that persistent viral antigen and spatially organized immune activation can remain detectable in specific organs, more than 250 days after mild acute disease."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
Scotland The Scottish Parliament’s Health, Care and Support Committee meeting on 2nd September included Long Covid and ME/CFS. BrokenBattery has posted highlights on YouTube. "It includes the lack of specialist services, difficulties accessing appropriate care, harmful exercise advice, NICE guidelines, and calls for action rather than further strategy."
Video (35 minutes) | Thread
UK BACME ME/CFS Tube Feeding Survey Report by the British Association of Clinicians in ME/CFS.
A detailed report including quotes from clinicians, carers and people with ME/CFS. The report concludes with a list of recommendations including nutritional screening; development of standardised clinical guidance; and individualised ME/CFS-informed implementation.
Report | Thread
Smithsonian magazine For Many Americans, Covid Is Still a Chronic, Disabling Disease. These Scientists Are Working Tirelessly to Bring Them Relief - by Mike Mariani
Feature article on research into Long Covid.
Article l Thread
Trial by Error by David Tuller Patient Advocate Anil van der Zee Receives Dutch Royal Distinction
Anil van der Zee received the award Knight in the Order of Orange-Nassau for his outstanding patient advocacy work (see last week's news brief).
David Tuller shares a letter of recommendation he wrote beforehand:
"I am delighted to recommend Anil van der Zee for a royal distinction in recognition of his heroic efforts to highlight the situation of people with ME and related illnesses."
Article l Thread
Mother Jones The Relentless Work of Being Sick
Julia Métraux interviews cultural anthropologist Emily Lim Rogers on her new book "Sick Work: Exhaustion, Labor, and Invisible Illness".
The book examines the labor it takes in being sick, through the lens of ME/CFS.
Article l Thread
Sweden The union news site Arbetsvärlden writes about the hardship patients with ME face when assessed for being fit to work in a system with little understanding of ME and fluctuating illnesses. Johan Helander tells his story of being deemed fit to work despite his doctor saying he may never be able to work again. After six years of sick pay, all financial support has now stopped.
In a follow up article the Swedish Social Insurance Agency say that they make a broad consideration in these cases.
Article (Swedish) l Article (Swedish) l Thread
Germany
A German petition states that people with ME/CFS should not be obliged to undergo rehabilitation against their will. Refusal or non-participation in rehabilitation must not lead to disadvantages under social law. It has been signed more than 3000 times and has 30.000 signatures as target.
Petition | Thread
........
Coming events
September
Solve ME Webinar A Safe, Accessible Treatment for ME/CFS? The Mitochondrial Stabilizer IVO-21 Study
Tuesday, September 8, 3:00 pm - 4:00 pm PDT
Dr. Jay H. Chung from the NIH (National Institutes of Health) will discuss his research.
Announcement | Registration | Thread
USA Stanford Community Symposium on the Molecular Basis of ME/CFS
"On behalf of Dr. Ronald Davis, the Stanford Genome Technology Center is pleased to host a virtual Community Symposium on Friday, September 11, at 8:00 AM. (UK 4pm)
The symposium will feature a series of presentations from distinguished speakers, who will share the latest ME/CFS research updates and insights."
Zoom registration | Thread
NIH RECOVER Webinar Growing up with Long COVID—Risk factors and school impacts
Tuesday, September 15 at noon EDT
Researchers will share recent findings from the RECOVER pediatric observational study.
Announcement | Thread
Bateman Horne Center Free Online Support Group
Tuesday, September 15, 1 - 2 pm MDT
Topic: When Our Bodies, Life and/or Others Don’t Cooperate
Advance registration required, registration link shows time in your time zone.
Registration | Thread
USA - CDC Stakeholder Engagement and Communication (SEC) Call
Friday, September 18, 3:00 - 4:30 pm Eastern Time
Agenda items include "Updates from the CDC" (Joanna Regan) and “How Progress in Long COVID is helping us understand ME/CFS” (Nancy Klimas). There will be a Q&A session at the end.
Announcement | Thread
NIH webinar From Mechanisms to Medicine: Rethinking the Discovery-to-Care Continuum in Multi-System Disorders
September 23-24, in person and virtual
Announcement | Registration | Thread
PRIME International Symposium a two-day hybrid event exploring the latest developments in ME/CFS research.
9 am on 28 September to 2 pm on 29 September at the John McIntyre Conference Centre in Edinburgh, with online attendance also available.
"The PRIME Symposium will see the launch of the new International Genetic Epidemiology of ME/CFS Consortium, as well as provide a platform for Early Career Researchers and the Patient and Public Involvement Research Involvement Hub to present exciting new research and supporting activities."
Article | Preliminary programme | Registration | Thread
October
Young EMERG International Workshop in Valencia, Spain
The second Young EMERG International Workshop will take place in Valencia from 7-8 October. It focuses on scientific & personal development of young ME/CFS researchers, exploring leading collaborations and PI Speed Dating.
Announcement | Bluesky | Thread
.........
Research news and commentary
Nature When do infections lead to long COVID? Scientists close in on triggers and treatments for post-viral syndromes - by Simon Makin
News feature article on current hypothesis and research projects into ME/CFS and Long Covid. First part of the article is open to all.
Article l Thread
The Sick Times
A new U.S. clinical trials program called PROBE-PASC was announced at the conference in Amsterdam. The program received initial funding of $8 million from a Department of Defense (DOD) grant. The first clinical trial in the series will test the monoclonal antibody Pemgarda, along with the immune-modulating drug hydroxychloroquine.
Article | Thread
ME/CFS Science
In a new article, ME/CFS Science Blog highlights how the hormone prolactin rises much higher in ME/CFS patients after taking buspirone than in controls. Forum member forestglip has written a more detailed scientific overview of these findings.
Article | Thread
RECOVER - a NIH funded Long Covid research initiative
RECOVER-VITAL clinical trial finds no benefit of extended duration of PAXLOVID for Long COVID
An summary of a recent negative study on a prolonged course with the antiviral treatment PAXLOVID for Long Covid.
Article l Thread
Research update: September 2026
A short presentation of recent publications from RECOVER.
Article l Thread
.........
Research
ME/CFS research
Comprehensive review of myalgic encephalomyelitis/chronic fatigue syndrome — Jeyaraman et al
Opinion. "To address the challenges of the unique features, complexity and heterogeneity of ME/CFS, strong partnerships with patients are crucial for the design and implementation of research."
Article | Thread
Long Covid research
Nirmatrelvir–ritonavir targeting viral persistence in post-COVID-19 condition (long COVID) in the USA (RECOVER-VITAL): a randomised, double-blind, placebo-controlled, phase 2 trial — Baden et al
"Nirmatrelvir–ritonavir for 15 days or 25 days showed no evidence of benefit in long COVID" "Across all three phenotypes, substantial percentages of participants showed improvement over time by PROMs and less so by performance measures."
Article | Thread
Impaired Auditory Sensory Gating as a Neurophysiological Correlate of Cognitive Fatigue in Long COVID — Mischke and Zaehle
"The results showed that auditory sensory gating accounted for unique variance in cognitive fatigue beyond the effects of depressive symptoms and demographic factors."
Article | Thread
Registered interventional trials fail to cover patient-prioritised treatments in Post-COVID condition (PCC) — Gabriel et al
"The most pronounced discrepancy between research activity and patient priorities, however, concerns neither pharmacological interventions nor a specific treatment modality, but a highly relevant patient-centred outcome: PEM."
Preprint | Thread
Disabling Dynamics: Long Covid and the Challenges of Securitizing Slow-Onset Health Threats — Finkelstein
"Empirical analysis has shown that acute Covid-19’s spatiotemporal compression and spectacular mortality enabled leaders to frame it as a national emergency to a receptive audience and mobilize resources accordingly, while Long Covid’s slow-onset trajectory and nearly invisible harm profile among discountable populations make it far less amendable to such a framing, despite its mounting socioeconomic consequences."
Article | Thread
Using hyperpolarised xenon magnetic resonance imaging to explore breathlessness in long COVID: results from the EXPLAIN study — Ng et al
"Our results show that in the majority of never-hospitalised LC participants, gas transfer measurements using 129Xe-MRI were similar to those of fully recovered controls."
Article | Thread
Persistent fibroblast-related tissue activity in long COVID after moderate-to-severe acute COVID-19 assessed by [⁶⁸Ga]Ga-FAPI PET/CT — Hasan et al
"The paravertebral muscle [⁶⁸Ga]Ga-FAPI SUVmax was significantly higher in PASC patients compared to controls (median: 6.35 vs. 3.65; p < 0.001)."
Article | Thread
Microbiome dysbiosis in long COVID: a scoping review of mechanistic insights, symptom associations, and therapeutic targets — Cano-Cevallos et al
"These findings have been described in association with systemic inflammation, immune dysregulation, and disruptions in gut–lung and gut–brain axis signaling; however, these relationships are largely based on observational data and conceptual interpretations rather than confirmed causal mechanisms."
Article | Thread
Measurement properties of the 30-second sit-to-stand test in post COVID-19 condition: Results from the PYCNOVID randomised controlled trial — Braun et al
"Consistent with our hypothesis, boxplots of STS performance across the four PEM grades suggested that individuals with very severe PEM completed fewer 30s-STS repetitions, whereas the other three PEM groups displayed comparable values."
Article | Thread
Case Report: Post-Mortem Analysis of Long-Term Inflammation After Mild COVID-19 — Wu et al
"Notably, in contrast to early epidemiological studies which established PACS as a multisystem disorder, our findings extend these observations by providing tissue-level evidence that persistent viral antigen and spatially organized immune activation can remain detectable in specific organs, more than 250 days after mild acute disease."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 7th September 2026
News, advocacy and articles
UK Long Covid Kids have developed resources for children and parents including an Individual Healthcare Plan (IHCP) template, available for download as Word or PDF. It is intended to be filled in for each child with long Covid or related conditions to provide schools with information about the child's needs for adjustments and support at school.
Website with links | Thread
Podcast Conspirituality 325: Long COVID Profiteers
The second half of this podcast episode discusses Long Covid, ME/CFS, "neuro-bollocks"-treatments such as the Lightning Process, the weak scientific methods behind trials as FALCON, SMILE and PACE and more.
Podcast l Thread
Canada - #MEAction Launches Research Program for Young Scholars
"#MEAction has received funding to launch the NextGen IACC Scholars Program, supporting up to four graduate researchers at Canadian universities to lead studies using #MEAction’s Symptom Cluster Characterization in Complex Chronic Disease (SC4D) dataset."
Article | Thread
Australia Living with ME/CFS or long COVID in Australia: A National Burden of Disease Study
Emerge Australia and Edith Cowan University invite Australians living with ME/CFS or long COVID to take part in a confidential online survey about their experiences.
Announcement | Survey | Thread
........
Coming events
NINDS & MECFSnet - ME/CFS Exchange Webinar Series
Webinar 1: Persistence of Post-Acute Infection Symptoms: What Causes Them and Why Do They Persist?
Thursday, Oct. 8, 1 - 3 pm ET
Announcement | Thread
........
Research news and commentary
Solve ME A Safe, Accessible Treatment for ME/CFS? The IVO-21 Study
A recording of this webinar is now available on YouTube. Duration about one hour.
Article | Video | Thread
Germany
The advocacy group NichtGenesen has written a 11-page rebuttal of a book chapter published in Psychotherapie. The chapter recommends cognitive behavioral therapy and states that some ME/CFS patients have a reproachful attitude toward healthcare providers who do not share their views.
Article | Thread
.......
Research
ME/CFS research
Total blood volume and red blood cell volume are not associated with orthostatic intolerance in adults with myalgic encephalomyelitis/chronic fatigue syndrome — Yamazaki et al
"Seventeen participants (35%) were classified as hypovolemic, 21 (43%) as normovolemic, and 11 (22%) as hypervolemic." "findings suggest that static blood volume deficits alone are unlikely to be the principal determinant of OI in ME/CFS."
Article | Thread
Postural orthostatic tachycardia syndrome in adolescents with ME/CFS — a case control study — Leone et al
Pilot. "The threshold for PoTS in the ME/CFS group was consistent, with the relative limit (at least 40 bpm increase above the supine mean HR) and the absolute limit (120 bpm) aligning." "For HC, the relative limit was 106 bpm."
Article | Thread
Myalgic encephalomyelitis/chronic fatigue syndrome and overlapping post-acute infection syndromes: international expert consensus framework for diagnostic standardization — Kujawski et al
"The proposed tools quantify functional impairment and symptom severity rather than disease-specific pathophysiology. All cut-offs are provisional expert estimates requiring prospective validation."
Article | Thread
Long Covid research
Microvascular Dysfunction and Redox Imbalance in Long COVID — Lewandowska et al
"We observed a reduced erythrocyte NAD+/NADH ratio and lower NADP concentrations" "At the circulating level, this metabolic pattern was characterized by reduced availability of NAD+ precursors and metabolites (NA, MNA, NR) together with accumulation of downstream degradation products, including 4PYR and Met2PY."
Article | Thread
A brief report: absence of elevated circulating NETosis markers in long-term long COVID — Humer et al
"Plasma levels of MPO-DNA, histone-DNA and citrullinated histone H3 (H3) did not differ significantly between LC and HC." "No significant associations were observed between NETosis marker concentrations and symptom severity measures and core LC symptoms."
Article | Thread
Comparison of new and recurring post-acute infection syndrome – results from a German population-based cohort — Frost et al
"participants who had not recovered before the subsequent infection consistently showed the greatest impairment, highest symptom counts, and lowest estimated recovery."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
UK Long Covid Kids have developed resources for children and parents including an Individual Healthcare Plan (IHCP) template, available for download as Word or PDF. It is intended to be filled in for each child with long Covid or related conditions to provide schools with information about the child's needs for adjustments and support at school.
Website with links | Thread
Podcast Conspirituality 325: Long COVID Profiteers
The second half of this podcast episode discusses Long Covid, ME/CFS, "neuro-bollocks"-treatments such as the Lightning Process, the weak scientific methods behind trials as FALCON, SMILE and PACE and more.
Podcast l Thread
Canada - #MEAction Launches Research Program for Young Scholars
"#MEAction has received funding to launch the NextGen IACC Scholars Program, supporting up to four graduate researchers at Canadian universities to lead studies using #MEAction’s Symptom Cluster Characterization in Complex Chronic Disease (SC4D) dataset."
Article | Thread
Australia Living with ME/CFS or long COVID in Australia: A National Burden of Disease Study
Emerge Australia and Edith Cowan University invite Australians living with ME/CFS or long COVID to take part in a confidential online survey about their experiences.
Announcement | Survey | Thread
........
Coming events
NINDS & MECFSnet - ME/CFS Exchange Webinar Series
Webinar 1: Persistence of Post-Acute Infection Symptoms: What Causes Them and Why Do They Persist?
Thursday, Oct. 8, 1 - 3 pm ET
Announcement | Thread
........
Research news and commentary
Solve ME A Safe, Accessible Treatment for ME/CFS? The IVO-21 Study
A recording of this webinar is now available on YouTube. Duration about one hour.
Article | Video | Thread
Germany
The advocacy group NichtGenesen has written a 11-page rebuttal of a book chapter published in Psychotherapie. The chapter recommends cognitive behavioral therapy and states that some ME/CFS patients have a reproachful attitude toward healthcare providers who do not share their views.
Article | Thread
.......
Research
ME/CFS research
Total blood volume and red blood cell volume are not associated with orthostatic intolerance in adults with myalgic encephalomyelitis/chronic fatigue syndrome — Yamazaki et al
"Seventeen participants (35%) were classified as hypovolemic, 21 (43%) as normovolemic, and 11 (22%) as hypervolemic." "findings suggest that static blood volume deficits alone are unlikely to be the principal determinant of OI in ME/CFS."
Article | Thread
Postural orthostatic tachycardia syndrome in adolescents with ME/CFS — a case control study — Leone et al
Pilot. "The threshold for PoTS in the ME/CFS group was consistent, with the relative limit (at least 40 bpm increase above the supine mean HR) and the absolute limit (120 bpm) aligning." "For HC, the relative limit was 106 bpm."
Article | Thread
Myalgic encephalomyelitis/chronic fatigue syndrome and overlapping post-acute infection syndromes: international expert consensus framework for diagnostic standardization — Kujawski et al
"The proposed tools quantify functional impairment and symptom severity rather than disease-specific pathophysiology. All cut-offs are provisional expert estimates requiring prospective validation."
Article | Thread
Long Covid research
Microvascular Dysfunction and Redox Imbalance in Long COVID — Lewandowska et al
"We observed a reduced erythrocyte NAD+/NADH ratio and lower NADP concentrations" "At the circulating level, this metabolic pattern was characterized by reduced availability of NAD+ precursors and metabolites (NA, MNA, NR) together with accumulation of downstream degradation products, including 4PYR and Met2PY."
Article | Thread
A brief report: absence of elevated circulating NETosis markers in long-term long COVID — Humer et al
"Plasma levels of MPO-DNA, histone-DNA and citrullinated histone H3 (H3) did not differ significantly between LC and HC." "No significant associations were observed between NETosis marker concentrations and symptom severity measures and core LC symptoms."
Article | Thread
Comparison of new and recurring post-acute infection syndrome – results from a German population-based cohort — Frost et al
"participants who had not recovered before the subsequent infection consistently showed the greatest impairment, highest symptom counts, and lowest estimated recovery."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 14th September 2026
News, advocacy and articles
Germany
The patient organization NichtGenesen has submitted an 11-page letter in German to Springer Nature. It criticises a new book chapter on 'Chronic Fatigue Syndrome' that includes stigmatizing language.
Article | Thread
UK "I would be here if I could" travelling art installation by artist Alison Larkman.
"The Mirrorbox is on a nationwide journey carrying messages from people living with ME and Long Covid to the places they love but can no longer reach. Inside is a message from the person who has chosen that place. Enter and listen, you are invited to write them a postcard back."
Website | MEA article | Thread
Denmark The health news site "Sundhedspolitisk Tidsskrift" has an article about the short film; "Best Practice" on severe ME and conflicts with the authorities. It includes an interview with one of the actors, Hjalte Ilsøe Gustavusson who has a family member with ME. He says: .."the film depicts a situation where the authorities follow a procedure blindly and put human responsibility on the shelf". The film is written and directed by Oscar winner Martin Strange-Hansen.
Article (Danish) l Thread
ME Research UK are producing a series of article on symptoms of ME/CFS, looking at research and patients' experiences. The latest on is Sleep Dysfunction in ME/CFS. They are also running a short survey inviting people with ME/CFS to share their experiences with sleep.
Article | Survey | Thread
........
Coming events
Aotearoa New Zealand Webinar Thu 24th Sept at 7PM NZST
ME Support NZ hosts a webinar by DecodeME lead researcher Professor Chris Ponting. What genetics reveals about disease‑relevant genes, cells and systems. Latest updates on Sequence ME & Long COVID.
Thread
NIH webinar From Mechanisms to Medicine: Rethinking the Discovery-to-Care Continuum in Multi-System Disorders
September 23-24, in person and virtual
Announcement | Registration | Thread
PRIME International Symposium a two-day hybrid event exploring the latest developments in ME/CFS research.
9 am on 28 September to 2 pm on 29 September at the John McIntyre Conference Centre in Edinburgh, with online attendance also available.
"The PRIME Symposium will see the launch of the new International Genetic Epidemiology of ME/CFS Consortium, as well as provide a platform for Early Career Researchers and the Patient and Public Involvement Research Involvement Hub to present exciting new research and supporting activities."
Article | Preliminary programme | Registration | Thread
.......
Research
ME/CFS research
Seven replicated genomic associations: of myalgic encephalomyelitis/chronic fatigue syndrome a biobank study — Slaughter et al
"Using TarGene, we identified 176 SNPs associated with ME/CFS risk (FDR < 0.05) in the UKB1 discovery cohort, of which 15 reached genome-wide significance ( < 5 × 10−8). In the follow-up replication analysis, two associations replicated in the UKB2 cohort with a further five in the AoU cohort."
Preprint | Thread
FreeSurfer-based amygdala subfield volumetry: in long COVID and ME/CFS: clinical and immunological correlations — Kimura et al
"No group difference or partial correlation remained significant after correction for multiple testing."
Article | Thread
Long Covid research
Cognitive fatigue is related to reduced cerebral perfusion and sustained attention in patients with post COVID-19 condition: An fMRI study — Hedberg et al
"Perfusion analysis revealed reduced CBF, not only in several regions but also globally across the whole brain and correlated with overall reaction time as well as individual performance variability"
Article | Thread
Longitudinal epigenetic rewiring in lung immune cells in patients with post COVID-19 condition — Nikesjö et al
"Distinct DNAm patterns were observed across pulmonary immune cell fractions, with longitudinal changes primarily detected in neutrophil- and macrophage-enriched populations, while alterations were not evident in PBMCs." "This divergence between lung and blood suggests tissue-specific epigenetic remodeling following SARS-CoV-2 infection and underscores the limitations of relying solely on peripheral blood to capture disease-relevant molecular changes in PCC."
Article | Thread
Association of mRNA SARS-CoV-2 vaccination with fatigue and functional recovery in patients with post-acute sequelae of COVID-19 (PASC) — Pries et al
"Adults with […] PASC and at least two visits 3 to 6 months apart […] were eligible." "The exposure of interest was receipt of an additional SARS-CoV-2 vaccination" "we did not detect a statistically significant worsening of fatigue or exercise capacity" "Both vaccinated and non-vaccinated participants showed gradual improvement over time."
Article | Thread
Comparative Analysis of Circulating Cytokines and Adrenergic Autoantibodies in Postural Orthostatic Tachycardia Syndrome, Postacute Sequelae of SARS‐CoV‐2, and Healthy Controls — Seeley et al
"we observed attenuated interleukin-2 with elevated interleukin-8 and TNF-α, while autoantibody activation measures did not reliably discriminate groups." "even subthreshold autonomic abnormalities in PASC were clinically meaningful and may represent evolving or underrecognized autonomic disease."
Article | Thread
Bidirectional Associations Between Autonomic Function, Sleep Quality, and Daily Fatigue and Energy Symptoms in Long COVID: Longitudinal Digital Health Study — Aboagye et al.
"sleep duration and REM sleep showed significant within-person (day-to-day) associations with next-day fatigue, and sleep efficiency showed a counterintuitive negative association with next-day energy"
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
Germany
The patient organization NichtGenesen has submitted an 11-page letter in German to Springer Nature. It criticises a new book chapter on 'Chronic Fatigue Syndrome' that includes stigmatizing language.
Article | Thread
UK "I would be here if I could" travelling art installation by artist Alison Larkman.
"The Mirrorbox is on a nationwide journey carrying messages from people living with ME and Long Covid to the places they love but can no longer reach. Inside is a message from the person who has chosen that place. Enter and listen, you are invited to write them a postcard back."
Website | MEA article | Thread
Denmark The health news site "Sundhedspolitisk Tidsskrift" has an article about the short film; "Best Practice" on severe ME and conflicts with the authorities. It includes an interview with one of the actors, Hjalte Ilsøe Gustavusson who has a family member with ME. He says: .."the film depicts a situation where the authorities follow a procedure blindly and put human responsibility on the shelf". The film is written and directed by Oscar winner Martin Strange-Hansen.
Article (Danish) l Thread
ME Research UK are producing a series of article on symptoms of ME/CFS, looking at research and patients' experiences. The latest on is Sleep Dysfunction in ME/CFS. They are also running a short survey inviting people with ME/CFS to share their experiences with sleep.
Article | Survey | Thread
........
Coming events
Aotearoa New Zealand Webinar Thu 24th Sept at 7PM NZST
ME Support NZ hosts a webinar by DecodeME lead researcher Professor Chris Ponting. What genetics reveals about disease‑relevant genes, cells and systems. Latest updates on Sequence ME & Long COVID.
Thread
NIH webinar From Mechanisms to Medicine: Rethinking the Discovery-to-Care Continuum in Multi-System Disorders
September 23-24, in person and virtual
Announcement | Registration | Thread
PRIME International Symposium a two-day hybrid event exploring the latest developments in ME/CFS research.
9 am on 28 September to 2 pm on 29 September at the John McIntyre Conference Centre in Edinburgh, with online attendance also available.
"The PRIME Symposium will see the launch of the new International Genetic Epidemiology of ME/CFS Consortium, as well as provide a platform for Early Career Researchers and the Patient and Public Involvement Research Involvement Hub to present exciting new research and supporting activities."
Article | Preliminary programme | Registration | Thread
.......
Research
ME/CFS research
Seven replicated genomic associations: of myalgic encephalomyelitis/chronic fatigue syndrome a biobank study — Slaughter et al
"Using TarGene, we identified 176 SNPs associated with ME/CFS risk (FDR < 0.05) in the UKB1 discovery cohort, of which 15 reached genome-wide significance ( < 5 × 10−8). In the follow-up replication analysis, two associations replicated in the UKB2 cohort with a further five in the AoU cohort."
Preprint | Thread
FreeSurfer-based amygdala subfield volumetry: in long COVID and ME/CFS: clinical and immunological correlations — Kimura et al
"No group difference or partial correlation remained significant after correction for multiple testing."
Article | Thread
Long Covid research
Cognitive fatigue is related to reduced cerebral perfusion and sustained attention in patients with post COVID-19 condition: An fMRI study — Hedberg et al
"Perfusion analysis revealed reduced CBF, not only in several regions but also globally across the whole brain and correlated with overall reaction time as well as individual performance variability"
Article | Thread
Longitudinal epigenetic rewiring in lung immune cells in patients with post COVID-19 condition — Nikesjö et al
"Distinct DNAm patterns were observed across pulmonary immune cell fractions, with longitudinal changes primarily detected in neutrophil- and macrophage-enriched populations, while alterations were not evident in PBMCs." "This divergence between lung and blood suggests tissue-specific epigenetic remodeling following SARS-CoV-2 infection and underscores the limitations of relying solely on peripheral blood to capture disease-relevant molecular changes in PCC."
Article | Thread
Association of mRNA SARS-CoV-2 vaccination with fatigue and functional recovery in patients with post-acute sequelae of COVID-19 (PASC) — Pries et al
"Adults with […] PASC and at least two visits 3 to 6 months apart […] were eligible." "The exposure of interest was receipt of an additional SARS-CoV-2 vaccination" "we did not detect a statistically significant worsening of fatigue or exercise capacity" "Both vaccinated and non-vaccinated participants showed gradual improvement over time."
Article | Thread
Comparative Analysis of Circulating Cytokines and Adrenergic Autoantibodies in Postural Orthostatic Tachycardia Syndrome, Postacute Sequelae of SARS‐CoV‐2, and Healthy Controls — Seeley et al
"we observed attenuated interleukin-2 with elevated interleukin-8 and TNF-α, while autoantibody activation measures did not reliably discriminate groups." "even subthreshold autonomic abnormalities in PASC were clinically meaningful and may represent evolving or underrecognized autonomic disease."
Article | Thread
Bidirectional Associations Between Autonomic Function, Sleep Quality, and Daily Fatigue and Energy Symptoms in Long COVID: Longitudinal Digital Health Study — Aboagye et al.
"sleep duration and REM sleep showed significant within-person (day-to-day) associations with next-day fatigue, and sleep efficiency showed a counterintuitive negative association with next-day energy"
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 21st September 2026
News, advocacy and articles
UK Guardian Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed
An opinion piece by George Monbiot. Quotes:
"Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a shocking social crisis playing out behind closed doors."
"We need to ask why so many patients have been abandoned, why discredited and dangerous treatments continue to be prescribed and why ignorance and neglect still dominate, in the health system and beyond. In other words, there has seldom been a stronger case for a public inquiry."
George Monbiot was later interviewed by Natasha Devon on LBC radio. A short clip (9 minutes) is available on YouTube, recorded by user Broken Battery.
Article | Interview | Thread
Hungary
The Medical Research Council (ETT) has responded to a letter by Dr. Gyula Keszthelyi, surgeon and general practitioner, on the plight of ME/CFS patients in Hungary. The ETT acknowledged that there are currently no valid domestic guidelines available and urges the Ministry of Health to issue one as soon as possible.
Article (Hungarian) | Thread
Emerge Australia 600,000 patients risk losing care over $220k grant
Emerge Australia has posted a copy of an article published by The Australian.
"Federal funding of the patient health service effectively paid for telehealth, information and support service delivery and development. On November 30 that funding ceases and Wilson says there is no certainty of new funding of a service to some of the most vulnerable people in the country."
Emerge | The Australian | Thread
Trial by Error by David Tuller
- Journal of Psychosomatic Research Publishes First-Person Account of "Cure" with the Lightning Process
A critical look at "one person's retrospective account" in a journal with familiar names from the biopsychosocial brigades on the editorial board and as guest editor.
Article l Thread
- Blistering New Monbiot Column on ME/CFS Mistreatment, Neglect
On the "corker of a column" in the Guardian about ME/CFS (see first news item).
Article l Thread
Pittsburgh's Public Source I look fine, but dealing with chronic illness is my full-time job
First person account about coping with chronic illness triggered by COVID infection.
Article | Thread
...........
Coming events
Bateman Horne Center - Free Online Support Groups
Tuesday, October 6, 1:00 - 2:00 PM Mountain Time
Topic: I’m Confused, Distracted, Forgetful, Exhausted, and in Pain
Tuesday, October 21, 1:00 - 2:00 PM Mountain Time
Topic: Figuring Out Relationships while Chronically Ill
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
NINDS & MECFSnet - ME/CFS Exchange Webinar Series
Webinar 1: Persistence of Post-Acute Infection Symptoms: What Causes Them and Why Do They Persist?
Thursday, Oct. 8, 1 - 3 pm ET
Announcement | Thread
..........
Research news and articles
Germany
The Severe & Very Severe ME Research Registry has been created. It gives people with severe and very severe ME from Germany, Austria, and Switzerland the opportunity to participate in research through home visits.
Article | Thread
Stanford's Genome Technology Center Community Symposium on the Molecular Basis of ME/CFS
Recordings from the symposium sessions are now available.
Videos | Thread
USA - NIH R3 Seminar Recap: Growing up with Long COVID—Risk factors and school impacts
"RECOVER researchers and caregivers shared insights into Long COVID social risk factors and how Long COVID affects children’s learning and school experiences—including what researchers hope to learn next."
Article | Video | Thread
.........
Research
ME/CFS research
Hemodynamic Phenotyping in ME/CFS and ANOCA: Complementary Insights from Coronary Function Testing and Invasive Cardiopulmonary Exercise Testing — Mackay et al
"Invasive cardiopulmonary exercise testing (iCPET) in patients with concurrent ME/CFS and ANOCA reveals a primary peripheral, not cardiac, limitation to exercise."
Article | Thread
Evaluation of an Integrated Multidisciplinary Care Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Prospective, Open-label, Non-randomized Controlled Intervention Study — Peters et al
"At the post-rehabilitation visit the Bell scale was lower in 45% of patients and higher in only 14% compared with baseline" "Our findings question the clinical value of current rehabilitation in ME/CFS, even when specifically adapted to the disease, particularly for severely affected patients."
Article | Thread
Role of haptoglobin and its phenotypic variations in the pathophysiology of myalgic encephalomyelitis and long COVID — Moezzi
PhD thesis.
Article | Thread
DNA methylation: unifying framework for complex chronic conditions — Sharma et al
Review. "epigenetic regulation, particularly DNA methylation, offers a powerful framework for linking environmental triggers, host susceptibility, and persistent changes in gene regulation. Its relative stability, sensitivity, and accessibility in peripheral tissues position it as a leading candidate for biomarker development, disease stratification, and monitoring of disease trajectories."
Article | Thread
Clinical Symptomatology, Cognition and Psychosocial Wellbeing in Adolescents With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Cross-Sectional Observational Study — Chau et al
"Acknowledging that variable information processing speed may be a feature of ME/ CFS rather than an inherent deficit or personal failing may facilitate greater understanding and compassion. Furthermore, accommodations at home, in the community, and at school should prioritise flexible pacing, energy management and assessments of accuracy over speed when seeking to support adolescents with ME/CFS."
Article | Thread
Long Covid research
The Post-Acute Effects of COVID-19 Are Not Associated with Robust Long-Term Regional or Global Brain Volumetric Changes: A Bayesian Meta-Analytic Evidence — Costa et al
"our focused examination of both global and regional volumetric changes not only provides deeper spatial insights compared to previous primary studies but also addresses the substantial methodological heterogeneity" "Results highlighted that while either global or local alteration was reported by independent studies, this evidence remains unsupported when they are considered on a meta-analytic level."
Article | Thread
A systems microbiology framework for reproducible multi-dataset omics integration with application to long COVID — Varga et al
"the value of this result lies not in the novelty of individual genes, but in the reproducible emergence of a coordinated immune–metabolic expression pattern across datasets" "The resulting seven-gene system (PPP2CB, SOCS3, ARG1, FZD2, IL6R, TRGV3/5, and ECHS1) reflects coordinated immune and metabolic expression patterns."
Article | Thread
Serum NfL and GFAP in post-COVID syndrome: minimal evidence of CNS injury after adjusting for confounders — Wunderle et al
"[ME/CFS] was present in 61.4% of PCS and absent in controls" "serum neurofilament light (NfL) concentrations did not differ between patients with PCS and recovered controls in either crude or adjusted analyses, arguing against ongoing neuroaxonal injury in this cohort. GFAP levels were modestly elevated […] indicating a small disease-related astroglial signal."
Article | Thread
Booster dose of COVID-19 vaccine and its effectiveness against post COVID-19 condition in individuals with pre-existing immunity: a sequential propensity score-matched cohort study — Morris et al
"we demonstrate that receiving a fourth dose of COVID-19 vaccine is associated with a decreased risk of being diagnosed with post COVID-19 condition during the first 6 months after vaccination, although the incidence rate difference was small."
Article | Thread
The role of 6-minute walk test and pulmonary function testing in patients with post COVID-19 condition: a systematic review and meta-analysis — Khawandi et al
"The overall certainty of the evidence was very low due to the high risk of bias, indirectness, and imprecision."
Article | Thread
An Open-Label Feasibility Study of Remdesivir in Long COVID: Results from the ERASE LC Trial — Faghy et al
"The mean (SD) distance achieved in the 6MWT was 408 (113) metres at baseline compared to 468 (109) metres post-intervention" "whilst improvements were observed in health-related quality of life, the mean change in EQ-5D-5L index score (0.06) did not exceed the published MCID of 0.11" "Improvements could reflect natural fluctuation in symptom burden, behavioural modification associated with trial participation, or expectation effects."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
UK Guardian Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed
An opinion piece by George Monbiot. Quotes:
"Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a shocking social crisis playing out behind closed doors."
"We need to ask why so many patients have been abandoned, why discredited and dangerous treatments continue to be prescribed and why ignorance and neglect still dominate, in the health system and beyond. In other words, there has seldom been a stronger case for a public inquiry."
George Monbiot was later interviewed by Natasha Devon on LBC radio. A short clip (9 minutes) is available on YouTube, recorded by user Broken Battery.
Article | Interview | Thread
Hungary
The Medical Research Council (ETT) has responded to a letter by Dr. Gyula Keszthelyi, surgeon and general practitioner, on the plight of ME/CFS patients in Hungary. The ETT acknowledged that there are currently no valid domestic guidelines available and urges the Ministry of Health to issue one as soon as possible.
Article (Hungarian) | Thread
Emerge Australia 600,000 patients risk losing care over $220k grant
Emerge Australia has posted a copy of an article published by The Australian.
"Federal funding of the patient health service effectively paid for telehealth, information and support service delivery and development. On November 30 that funding ceases and Wilson says there is no certainty of new funding of a service to some of the most vulnerable people in the country."
Emerge | The Australian | Thread
Trial by Error by David Tuller
- Journal of Psychosomatic Research Publishes First-Person Account of "Cure" with the Lightning Process
A critical look at "one person's retrospective account" in a journal with familiar names from the biopsychosocial brigades on the editorial board and as guest editor.
Article l Thread
- Blistering New Monbiot Column on ME/CFS Mistreatment, Neglect
On the "corker of a column" in the Guardian about ME/CFS (see first news item).
Article l Thread
Pittsburgh's Public Source I look fine, but dealing with chronic illness is my full-time job
First person account about coping with chronic illness triggered by COVID infection.
Article | Thread
...........
Coming events
Bateman Horne Center - Free Online Support Groups
Tuesday, October 6, 1:00 - 2:00 PM Mountain Time
Topic: I’m Confused, Distracted, Forgetful, Exhausted, and in Pain
Tuesday, October 21, 1:00 - 2:00 PM Mountain Time
Topic: Figuring Out Relationships while Chronically Ill
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
NINDS & MECFSnet - ME/CFS Exchange Webinar Series
Webinar 1: Persistence of Post-Acute Infection Symptoms: What Causes Them and Why Do They Persist?
Thursday, Oct. 8, 1 - 3 pm ET
Announcement | Thread
..........
Research news and articles
Germany
The Severe & Very Severe ME Research Registry has been created. It gives people with severe and very severe ME from Germany, Austria, and Switzerland the opportunity to participate in research through home visits.
Article | Thread
Stanford's Genome Technology Center Community Symposium on the Molecular Basis of ME/CFS
Recordings from the symposium sessions are now available.
Videos | Thread
USA - NIH R3 Seminar Recap: Growing up with Long COVID—Risk factors and school impacts
"RECOVER researchers and caregivers shared insights into Long COVID social risk factors and how Long COVID affects children’s learning and school experiences—including what researchers hope to learn next."
Article | Video | Thread
.........
Research
ME/CFS research
Hemodynamic Phenotyping in ME/CFS and ANOCA: Complementary Insights from Coronary Function Testing and Invasive Cardiopulmonary Exercise Testing — Mackay et al
"Invasive cardiopulmonary exercise testing (iCPET) in patients with concurrent ME/CFS and ANOCA reveals a primary peripheral, not cardiac, limitation to exercise."
Article | Thread
Evaluation of an Integrated Multidisciplinary Care Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Prospective, Open-label, Non-randomized Controlled Intervention Study — Peters et al
"At the post-rehabilitation visit the Bell scale was lower in 45% of patients and higher in only 14% compared with baseline" "Our findings question the clinical value of current rehabilitation in ME/CFS, even when specifically adapted to the disease, particularly for severely affected patients."
Article | Thread
Role of haptoglobin and its phenotypic variations in the pathophysiology of myalgic encephalomyelitis and long COVID — Moezzi
PhD thesis.
Article | Thread
DNA methylation: unifying framework for complex chronic conditions — Sharma et al
Review. "epigenetic regulation, particularly DNA methylation, offers a powerful framework for linking environmental triggers, host susceptibility, and persistent changes in gene regulation. Its relative stability, sensitivity, and accessibility in peripheral tissues position it as a leading candidate for biomarker development, disease stratification, and monitoring of disease trajectories."
Article | Thread
Clinical Symptomatology, Cognition and Psychosocial Wellbeing in Adolescents With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Cross-Sectional Observational Study — Chau et al
"Acknowledging that variable information processing speed may be a feature of ME/ CFS rather than an inherent deficit or personal failing may facilitate greater understanding and compassion. Furthermore, accommodations at home, in the community, and at school should prioritise flexible pacing, energy management and assessments of accuracy over speed when seeking to support adolescents with ME/CFS."
Article | Thread
Long Covid research
The Post-Acute Effects of COVID-19 Are Not Associated with Robust Long-Term Regional or Global Brain Volumetric Changes: A Bayesian Meta-Analytic Evidence — Costa et al
"our focused examination of both global and regional volumetric changes not only provides deeper spatial insights compared to previous primary studies but also addresses the substantial methodological heterogeneity" "Results highlighted that while either global or local alteration was reported by independent studies, this evidence remains unsupported when they are considered on a meta-analytic level."
Article | Thread
A systems microbiology framework for reproducible multi-dataset omics integration with application to long COVID — Varga et al
"the value of this result lies not in the novelty of individual genes, but in the reproducible emergence of a coordinated immune–metabolic expression pattern across datasets" "The resulting seven-gene system (PPP2CB, SOCS3, ARG1, FZD2, IL6R, TRGV3/5, and ECHS1) reflects coordinated immune and metabolic expression patterns."
Article | Thread
Serum NfL and GFAP in post-COVID syndrome: minimal evidence of CNS injury after adjusting for confounders — Wunderle et al
"[ME/CFS] was present in 61.4% of PCS and absent in controls" "serum neurofilament light (NfL) concentrations did not differ between patients with PCS and recovered controls in either crude or adjusted analyses, arguing against ongoing neuroaxonal injury in this cohort. GFAP levels were modestly elevated […] indicating a small disease-related astroglial signal."
Article | Thread
Booster dose of COVID-19 vaccine and its effectiveness against post COVID-19 condition in individuals with pre-existing immunity: a sequential propensity score-matched cohort study — Morris et al
"we demonstrate that receiving a fourth dose of COVID-19 vaccine is associated with a decreased risk of being diagnosed with post COVID-19 condition during the first 6 months after vaccination, although the incidence rate difference was small."
Article | Thread
The role of 6-minute walk test and pulmonary function testing in patients with post COVID-19 condition: a systematic review and meta-analysis — Khawandi et al
"The overall certainty of the evidence was very low due to the high risk of bias, indirectness, and imprecision."
Article | Thread
An Open-Label Feasibility Study of Remdesivir in Long COVID: Results from the ERASE LC Trial — Faghy et al
"The mean (SD) distance achieved in the 6MWT was 408 (113) metres at baseline compared to 468 (109) metres post-intervention" "whilst improvements were observed in health-related quality of life, the mean change in EQ-5D-5L index score (0.06) did not exceed the published MCID of 0.11" "Improvements could reflect natural fluctuation in symptom burden, behavioural modification associated with trial participation, or expectation effects."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 28th September 2026
News, advocacy and articles
Interview with George Monbiot about Guardian column on ME/CFS
A splendid interview by David Tuller with British investigative journalist George Monbiot based on his recent article in the Guardian, Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed. Duration 23 minutes.
Interview (video) l Thread
UK - British Psychological Society ME/CFS Guidelines - September 2026 Update
From their survey results: "Participants have said very clearly that the guidelines must recognise ME/CFS is a biological illness that cannot be cured by psychological methods. The role of psychology is support." Publication planned for 2027.
Update (PDF) | Thread
UK - House of Commons Support for unpaid carers, Share your experiences (survey)
"On Thursday 15 October, Alison Bennett MP is leading a debate in Westminster Hall on support for unpaid carers." "An unpaid carer is someone who looks after or gives unpaid support to a family member, partner, friend or neighbour who could not manage without their help because of illness, disability, frailty, a mental health condition or addiction." Survey deadline is Wednesday, 14 October.
Survey | Thread
Norway Demonstration scheduled for 28th October at 3:00 PM
Three patient organisations — The Norwegian ME Association, The ME Parents, and the Norwegian Covid Association — are organising a demonstration outside the Norwegian Parliament demanding a stop of the planned clinical guidelines for fatigue and ME. They ask for a separate guideline and expertise in healthcare for ME and post-infectious illness with PEM. Digital participation will be possible.
Facebook event (Norwegian) l "The ME Parents" website (English translation) l Thread
The Sick Times has announced a survey to "learn more about how to serve our readers." The survey takes around five minutes to complete and will save automatically as you navigate through it.
Survey | Thread
Ireland - Culture Night 2026 What about M.E.? - Four Short Plays About Myalgic Encephalomyelitis
A recording of four short plays "written about and by people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) & Long-Covid, exploring what it's like living on pause in a world obsessed with moving forward."
Video | Thread
........
Coming events
USA - Solve ME 2026 Community Address: Shaping What Comes Next
Monday, October 20 at 1 PM PT / 4 PM ET
A live conversation to discuss "science and advocacy as we approach the midterms." It will be recorded for later viewing.
Announcement | Thread
UK PRIME Webinar 4 - The Neurology of ME/CFS
Wednesday 28th October, 2-5 pm GMT, online via Zoom
The list of speakers and a link to the webinar programme can be found in the announcement.
Announcement | Registration | Thread
Conference in Iceland - Bridge between continents
Thursday, 29th October
The ME Society of Iceland in collaboration with other groups is holding a conference to bring together "leading Icelandic and international experts in ME, Long COVID, Environmental illness and POTS" to share knowledge from research and clinical practice. The conference will be held in English and will be live-streamed. Registration closes Oct 20th.
Announcement l Program | Thread
RECOVER Treating Long COVID (TLC) - 3rd Annual Hybrid Workshop
November 4-5 in Bethesda, MD (In-Person or Virtual)
Updates on clinical trials and emerging discoveries in Long COVID research
Announcement | Registration | Thread
........
Research news and articles
UK ME/CFS Biobank Continues to Drive International Research
"Over the past six months, the UK ME/CFS Biobank has distributed more than 1,300 biological samples to research groups across the world, supporting a diverse range of studies aimed at improving our understanding of ME/CFS."
The CureME team thanks participants, and the ME Association for funding.
Article | Thread
........
Research
ME/CFS research
The importance of work: A qualitative study of primary carers of severe ME patients’ experiences of balancing work with comprehensive caregiving responsibilities — Størdal and Iversen
"This article explores how primary caregivers of people with severe ME experience combining work with their extensive caregiving responsibilities."
Article | Thread
Pharmacological Treatment Approaches in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — Habermann-Horstmeier
"To date, no causal pharmacological therapy exists for this disease […]. However, early implementation of symptom-oriented management strategies and pacing may improve symptom control, functional status, and quality of life, although no evidence currently demonstrates reversal of the underlying disease process."
Article | Thread
Long Covid research
Autoantibody landscapes in Long COVID with neurological symptoms show heterogeneity without a shared disease signature — Chakravarty et al
"Across tissue-based assays and peptide-level, whole-human-proteome PhIP-Seq profiling, the data consistently reveal a lack of convergent, disease-specific autoantibody signatures."
Article | Thread
Brain-binding auto-antibodies in subjects with and without post-COVID-syndrome after SARS-CoV-2 infection — Faraj et al
"Our data further support the conjecture of a dysregulated immune system after COVID-19, and endorse former observations that there is no direct link between autoantibody prevalence and clinical symptoms of Post-COVID syndrome."
Article | Thread
Neurocognitive Indices of Long COVID: Dysregulated Engagement of Inhibitory Control and Oscillatory Slowing — White et al
"Taken together, these findings clearly indicate that even mild PASC is associated with significant alterations in cell signaling, characterized by oscillatory slowing."
Article | Thread
Characterizing Host Inflammatory Bioprofiles in People With Postacute Sequelae SARS-CoV-2 Infection (PASC) — Marmont et al
"six distinct inflammatory clusters were identified within people with PASC, three of which showed elevated biomarkers related to tissue damage and repair, coagulation, axonal injury, and antiviral immune responses and were associated with component 3 of the complement pathway."
Article | Thread
Remnant virus proteins sustain vascular inflammation post coronavirus infection in mice and humans. — Gibler et al
"Our study shows that remnant virus proteins persist in circulation after coronavirus infection and are retained in secondary organs, where their presence is associated with prolonged vascular inflammation and endothelial dysfunction."
Article | Thread
Hair cortisol concentration and basal heart rate variability differentiate long COVID from depressive disorders in youth — Oehlke et al
"Without a healthy reference, it cannot be determined whether HCC or HRV indices in either clinical group deviate from normative physiological levels, nor whether the observed patterns are specific to LC or depressive disorders. Accordingly, the present findings should be understood as relative differences between the two clinical groups."
Article | Thread
Dysautonomia and Postural Orthostatic Syndrome of Hypocapnia in Long COVID Syndrome — O’Brien et al
"Patients from this cohort with LCS, dysfunctional breathing and hypocapnia based on the lean test were referred for targeted pulmonary rehab." "There was no significant change in end-tidal CO2 or heart rate following the intervention."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
Interview with George Monbiot about Guardian column on ME/CFS
A splendid interview by David Tuller with British investigative journalist George Monbiot based on his recent article in the Guardian, Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed. Duration 23 minutes.
Interview (video) l Thread
UK - British Psychological Society ME/CFS Guidelines - September 2026 Update
From their survey results: "Participants have said very clearly that the guidelines must recognise ME/CFS is a biological illness that cannot be cured by psychological methods. The role of psychology is support." Publication planned for 2027.
Update (PDF) | Thread
UK - House of Commons Support for unpaid carers, Share your experiences (survey)
"On Thursday 15 October, Alison Bennett MP is leading a debate in Westminster Hall on support for unpaid carers." "An unpaid carer is someone who looks after or gives unpaid support to a family member, partner, friend or neighbour who could not manage without their help because of illness, disability, frailty, a mental health condition or addiction." Survey deadline is Wednesday, 14 October.
Survey | Thread
Norway Demonstration scheduled for 28th October at 3:00 PM
Three patient organisations — The Norwegian ME Association, The ME Parents, and the Norwegian Covid Association — are organising a demonstration outside the Norwegian Parliament demanding a stop of the planned clinical guidelines for fatigue and ME. They ask for a separate guideline and expertise in healthcare for ME and post-infectious illness with PEM. Digital participation will be possible.
Facebook event (Norwegian) l "The ME Parents" website (English translation) l Thread
The Sick Times has announced a survey to "learn more about how to serve our readers." The survey takes around five minutes to complete and will save automatically as you navigate through it.
Survey | Thread
Ireland - Culture Night 2026 What about M.E.? - Four Short Plays About Myalgic Encephalomyelitis
A recording of four short plays "written about and by people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) & Long-Covid, exploring what it's like living on pause in a world obsessed with moving forward."
Video | Thread
........
Coming events
USA - Solve ME 2026 Community Address: Shaping What Comes Next
Monday, October 20 at 1 PM PT / 4 PM ET
A live conversation to discuss "science and advocacy as we approach the midterms." It will be recorded for later viewing.
Announcement | Thread
UK PRIME Webinar 4 - The Neurology of ME/CFS
Wednesday 28th October, 2-5 pm GMT, online via Zoom
The list of speakers and a link to the webinar programme can be found in the announcement.
Announcement | Registration | Thread
Conference in Iceland - Bridge between continents
Thursday, 29th October
The ME Society of Iceland in collaboration with other groups is holding a conference to bring together "leading Icelandic and international experts in ME, Long COVID, Environmental illness and POTS" to share knowledge from research and clinical practice. The conference will be held in English and will be live-streamed. Registration closes Oct 20th.
Announcement l Program | Thread
RECOVER Treating Long COVID (TLC) - 3rd Annual Hybrid Workshop
November 4-5 in Bethesda, MD (In-Person or Virtual)
Updates on clinical trials and emerging discoveries in Long COVID research
Announcement | Registration | Thread
........
Research news and articles
UK ME/CFS Biobank Continues to Drive International Research
"Over the past six months, the UK ME/CFS Biobank has distributed more than 1,300 biological samples to research groups across the world, supporting a diverse range of studies aimed at improving our understanding of ME/CFS."
The CureME team thanks participants, and the ME Association for funding.
Article | Thread
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Research
ME/CFS research
The importance of work: A qualitative study of primary carers of severe ME patients’ experiences of balancing work with comprehensive caregiving responsibilities — Størdal and Iversen
"This article explores how primary caregivers of people with severe ME experience combining work with their extensive caregiving responsibilities."
Article | Thread
Pharmacological Treatment Approaches in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — Habermann-Horstmeier
"To date, no causal pharmacological therapy exists for this disease […]. However, early implementation of symptom-oriented management strategies and pacing may improve symptom control, functional status, and quality of life, although no evidence currently demonstrates reversal of the underlying disease process."
Article | Thread
Long Covid research
Autoantibody landscapes in Long COVID with neurological symptoms show heterogeneity without a shared disease signature — Chakravarty et al
"Across tissue-based assays and peptide-level, whole-human-proteome PhIP-Seq profiling, the data consistently reveal a lack of convergent, disease-specific autoantibody signatures."
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Brain-binding auto-antibodies in subjects with and without post-COVID-syndrome after SARS-CoV-2 infection — Faraj et al
"Our data further support the conjecture of a dysregulated immune system after COVID-19, and endorse former observations that there is no direct link between autoantibody prevalence and clinical symptoms of Post-COVID syndrome."
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Neurocognitive Indices of Long COVID: Dysregulated Engagement of Inhibitory Control and Oscillatory Slowing — White et al
"Taken together, these findings clearly indicate that even mild PASC is associated with significant alterations in cell signaling, characterized by oscillatory slowing."
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Characterizing Host Inflammatory Bioprofiles in People With Postacute Sequelae SARS-CoV-2 Infection (PASC) — Marmont et al
"six distinct inflammatory clusters were identified within people with PASC, three of which showed elevated biomarkers related to tissue damage and repair, coagulation, axonal injury, and antiviral immune responses and were associated with component 3 of the complement pathway."
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Remnant virus proteins sustain vascular inflammation post coronavirus infection in mice and humans. — Gibler et al
"Our study shows that remnant virus proteins persist in circulation after coronavirus infection and are retained in secondary organs, where their presence is associated with prolonged vascular inflammation and endothelial dysfunction."
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Hair cortisol concentration and basal heart rate variability differentiate long COVID from depressive disorders in youth — Oehlke et al
"Without a healthy reference, it cannot be determined whether HCC or HRV indices in either clinical group deviate from normative physiological levels, nor whether the observed patterns are specific to LC or depressive disorders. Accordingly, the present findings should be understood as relative differences between the two clinical groups."
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Dysautonomia and Postural Orthostatic Syndrome of Hypocapnia in Long COVID Syndrome — O’Brien et al
"Patients from this cohort with LCS, dysfunctional breathing and hypocapnia based on the lean test were referred for targeted pulmonary rehab." "There was no significant change in end-tidal CO2 or heart rate following the intervention."
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