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