News in Brief - September 2025
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Week beginning 1st September 2025
News, advocacy and articles
Germany
At the International ME/CFS Conference in Berlin on May 12 2025, a group of researchers signed an International Declaration stating that "there is a moral, medical, economic and scientific imperative to invest robustly in international and collaborative research into the pathophysiology of ME/CFS and Long COVID."
Article | Thread
UK NHS Learning Hub Managing Severe ME/CFS by Professor David Strain
"This session offers guidance to healthcare professionals who support, or have an interest in, the management of people living with severe and very severe ME/CFS.
It provides practical, evidence-based recommendations in 4 key areas: strategies for care in the community, nutritional support and risk management, managing risk in hospital care and pharmaceutical support.
The session is available to people working in NHS, government and educational sectors."
Link | Thread
Wales Lobbying your Members of the Senedd (MSs) Aug / Sept 2025
People in Wales are being asked to lobby their Member of the Senedd to give their backing to Adam Price’s Motion for a debate about Severe/Very Severe ME in Wales.
Details | Motion | Thread
UK AfME and APPG Action for ME and the All Party Parliamentary Group for ME/CFS have written a letter to Wes Streeting, Secretary of State for Health and Social Care, about "the absence of a strategic approach to biomedical research into ME/CFS as part of the Final Delivery Plan". They call for a more strategic response including a dedicated research hub.
Thread with copy of the letter
Aotearoa New Zealand Health NZ updates official "Chronic Fatigue Syndrome" public Information page
"We do not yet understand what causes ME/CFS, but research suggests that the immune system is involved."
Web Page | Thread
Medscape (USA) Long COVID Hitting Doctors and Nurses Hard
Discussion of Long Covid's impact on "hundreds of thousands of doctors, nurses, and other healthcare workers."
Article | Thread
Trial by Error by David Tuller A (Satirical) Field Guide to Conducting Biopsychosocial Research in Chronic Fatigue Syndrome/Myalgi Encephalomyelitis (CFS/ME)
A repost of a satirical paper by a reader from Belgium. Tuller "found it entertaining, well-written, and on-target, and figured others would as well. It offers a sharp assessment of some of the favorite methodological strategies of members of the CBT/GET ideological brigades."
Article l Thread
...........
Research news
Australia Launch of La Trobe University PAVING Centre of Excellence
Prof. Stephanie Gras will lead The Post-Acute Viral Infection diseases Group (PAVING) Centre of Research Excellence, with $3 million in Federal funding from the National Health and Medical Research Council (NHMRC).
Announcement | Thread
UK University of Edinburgh
PRIME project manager post advertised.
"This strategic role will ensure that the PRIME project meets its ambitious goals: establishing a world-leading infrastructure for ME/CFS research; enabling ≥15 novel collaborations; launching international consortia; and creating a large-scale PPI expert pool. Managing operational activity across the project’s three core components, the PRIME Project Manager will lead on operational delivery and day-to-day management."
The closing date for applications is 15 September 2025. Full time for 4 years.
Details | Thread
ME Research UK latest monthly newsletter notes recently funded research and comments on the DecodeME publication of initial results.
Newsletter | Thread
..........
Coming events
Bateman Horne Center - Free Online Support Groups
Tuesday, Sept 9, 1:00 - 2:00 PM Mountain Time
Topic: Moving from Humilitation and Shame to Humility and Pride
Tuesday, Sep 16, 1:00 - 2:00 PM Mountain Time
Topic: The Chronic Illness Experience: Creating Purpose and Meaning
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
...........
Research
ME/CFS research
Killer cell immunoglobulin-like receptor (KIR) alleles suggested to be associated with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — Ramadan et al.
"Our results demonstrate that certain alleles of genes encoding inhibitory KIR (KIR3DL3, KIR3DL2 and KIR3DL1) could be involved in the development of ME/CFS." "Our data support an involvement of NK cells in ME/CFS."
Article | Thread
Pyridostigmine Improves Hand Grip Strength in Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Schlömer et al.
"Compared to the decrease in HGS observed upon repeat measurement, HGS increased 1h after PS administration by approximately 50%. Additionally, PS administration significantly reduced orthostatic heart rate change."
Article | Thread
Long COVID and chronic fatigue syndrome/myalgic encephalitis share similar pathophysiologic mechanisms of exercise limitation — Swathi Jothi et al.
"analysis showed that the primary component of exercise limitation to be DM, diffusion of oxygen at the skeletal muscles. DM is a composite parameter that reflects the limitations to O2 transport from hemoglobin to mitochondria"
Article | Thread
Autonomic Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Findings from the Multi-Site Clinical Assessment of ME/CFS (MCAM) Study in the USA — Issa et al.
"We found that people with ME/CFS exhibited a higher burden of autonomic symptoms than healthy controls, as determined through both clinical evaluation (NASA Lean Test) and patient-reported measures (medical records and COMPASS-31)."
Article | Thread
The Role of Neuroinflammation in Post-Exertional Malaise Among Chronic Multisymptom Illness — Ninneman
"PET imaging consisted of a 70 minute dynamic scan with a third generation translocator protein radiotracer – 11C-ER176." "Neuroinflammation was significantly higher in CMI" "No specific brain regions were differentially impacted by exercise in either CMI nor CON"
Thesis | Thread
Precision Medicine Study of Post-Exertional Malaise Epigenetic Changes in Myalgic Encephalomyelitis/Chronic Fatigue Patients During Exercise — Sharma et al.
"This study investigated the temporal–longitudinal DNA methylation changes associated with PEM using a structured two-day maximum repeated effort cardiopulmonary exercise testing (CPET) protocol involving pre- and two post-exercise blood samplings from five ME/CFS patients."
Article | Thread
Mapping the brain’s fatigue network: a transdiagnostic systematic review and meta-analysis on functional correlates of mental fatigue — Schumann et al.
"Three main clusters were highlighted: a frontal-striatal-limbic cluster, a frontal-cingulate cluster, and a parietal cluster, with regions implicated in cognitive, emotional, and somatosensory symptoms associated with mental fatigue. Quality analysis indicated a moderate risk of bias in the majority of the included studies."
Article | Thread
Long Covid research
Age-Related Changes in the Clinical Picture of Long COVID — Mindy J. Fain et al.
"Among community-dwelling adults enrolled in the RECOVER study, we found that those aged 60 and older were less likely to be classified as having Long COVID using predetermined criteria, compared to the younger adults."
Article | Thread
Persistent Immune Dysregulation during Post-Acute Sequelae of COVID-19 is Manifested in Antibodies Targeting Envelope and Nucleocapsid Proteins — Marcin Kwissa et al.
"We demonstrate that IgG antibodies in PASC participants exhibit persistent skewing in SARS-CoV-2 antigen recognition, a pattern that correlates with long-lasting activation of circulating T follicular helper (cTFH) cells and mucosal-associated invariant T (MAIT) cells."
Preprint | Thread
Effect of Metformin on the Risk of Post-coronavirus Disease 2019 Condition Among Individuals With Overweight or Obese: A Population-based Retrospective Cohort Study — Chaichana et al.
"our findings support the protective effect of metformin treatment within 90 days of SARS-COV-2 infection on developing PCC in overweight/obesity patients in real-world settings."
Article | Thread
Altered amyloid plasma profile in patients with disabling headaches after SARS-CoV-2 infection and vaccination — Anne Hege Aamodt et al.
"Altered plasma levels of soluble markers, potentially reflecting changes in amyloid processing, were found in patients with persistent headache following SARS-CoV-2 vaccine, particularly in those with persistent headache after COVID-19. In the latter group, we also found some association with cognitive symptoms."
Article | Thread
Regulation of m7G methylation in long COVID: Expression profiles and early predictive value of key genes — Bai, Wenmei and Li, Fengsen
"The genes include adrenergic receptor alpha 2A, carbonic anhydrase 1, chromodomain helicase DNA binding protein 5, claudin 9, integrin alpha D, SERPINE1, tumor necrosis factor receptor superfamily member 17"
Article | Thread
The Effects of Pseudoserum on Thrombin-Induced Fibrin Networks: Potential for Clinical Insight into Coagulation Independent of Clotting Factors — Massimo Nunes et al.
"we derive pseudoserum or clotting factor-depleted fractions from control, type II diabetes mellitus, and Long COVID platelet-poor plasma (PPP) samples, and expose them to purified, exogenous fibrinogen obtained from healthy donors." "[Fibrin] networks formed using patient pseudoserum show disorganisation, regions of density, fibre-like strands, and anomalous aggregates."
Preprint | Thread
Monitoring of Cardiorespiratory Vagal Desynchrony Using Novel Biomarkers Derived from Smartwatch ECGs in a Patient Recovering from Long COVID – Case Report — Kranck et al.
Case report. "The ECG-based S/R amplitude rate and respiratory desynchronization biomarkers such as RSA and HRV, together with a posture test protocol, represent a novel, non-invasive method and easy ‘at-home’ triage and monitoring of Long Covid, POTS, and fatigue."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
Germany
At the International ME/CFS Conference in Berlin on May 12 2025, a group of researchers signed an International Declaration stating that "there is a moral, medical, economic and scientific imperative to invest robustly in international and collaborative research into the pathophysiology of ME/CFS and Long COVID."
Article | Thread
UK NHS Learning Hub Managing Severe ME/CFS by Professor David Strain
"This session offers guidance to healthcare professionals who support, or have an interest in, the management of people living with severe and very severe ME/CFS.
It provides practical, evidence-based recommendations in 4 key areas: strategies for care in the community, nutritional support and risk management, managing risk in hospital care and pharmaceutical support.
The session is available to people working in NHS, government and educational sectors."
Link | Thread
Wales Lobbying your Members of the Senedd (MSs) Aug / Sept 2025
People in Wales are being asked to lobby their Member of the Senedd to give their backing to Adam Price’s Motion for a debate about Severe/Very Severe ME in Wales.
Details | Motion | Thread
UK AfME and APPG Action for ME and the All Party Parliamentary Group for ME/CFS have written a letter to Wes Streeting, Secretary of State for Health and Social Care, about "the absence of a strategic approach to biomedical research into ME/CFS as part of the Final Delivery Plan". They call for a more strategic response including a dedicated research hub.
Thread with copy of the letter
Aotearoa New Zealand Health NZ updates official "Chronic Fatigue Syndrome" public Information page
"We do not yet understand what causes ME/CFS, but research suggests that the immune system is involved."
Web Page | Thread
Medscape (USA) Long COVID Hitting Doctors and Nurses Hard
Discussion of Long Covid's impact on "hundreds of thousands of doctors, nurses, and other healthcare workers."
Article | Thread
Trial by Error by David Tuller A (Satirical) Field Guide to Conducting Biopsychosocial Research in Chronic Fatigue Syndrome/Myalgi Encephalomyelitis (CFS/ME)
A repost of a satirical paper by a reader from Belgium. Tuller "found it entertaining, well-written, and on-target, and figured others would as well. It offers a sharp assessment of some of the favorite methodological strategies of members of the CBT/GET ideological brigades."
Article l Thread
...........
Research news
Australia Launch of La Trobe University PAVING Centre of Excellence
Prof. Stephanie Gras will lead The Post-Acute Viral Infection diseases Group (PAVING) Centre of Research Excellence, with $3 million in Federal funding from the National Health and Medical Research Council (NHMRC).
Announcement | Thread
UK University of Edinburgh
PRIME project manager post advertised.
"This strategic role will ensure that the PRIME project meets its ambitious goals: establishing a world-leading infrastructure for ME/CFS research; enabling ≥15 novel collaborations; launching international consortia; and creating a large-scale PPI expert pool. Managing operational activity across the project’s three core components, the PRIME Project Manager will lead on operational delivery and day-to-day management."
The closing date for applications is 15 September 2025. Full time for 4 years.
Details | Thread
ME Research UK latest monthly newsletter notes recently funded research and comments on the DecodeME publication of initial results.
Newsletter | Thread
..........
Coming events
Bateman Horne Center - Free Online Support Groups
Tuesday, Sept 9, 1:00 - 2:00 PM Mountain Time
Topic: Moving from Humilitation and Shame to Humility and Pride
Tuesday, Sep 16, 1:00 - 2:00 PM Mountain Time
Topic: The Chronic Illness Experience: Creating Purpose and Meaning
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
...........
Research
ME/CFS research
Killer cell immunoglobulin-like receptor (KIR) alleles suggested to be associated with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — Ramadan et al.
"Our results demonstrate that certain alleles of genes encoding inhibitory KIR (KIR3DL3, KIR3DL2 and KIR3DL1) could be involved in the development of ME/CFS." "Our data support an involvement of NK cells in ME/CFS."
Article | Thread
Pyridostigmine Improves Hand Grip Strength in Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Schlömer et al.
"Compared to the decrease in HGS observed upon repeat measurement, HGS increased 1h after PS administration by approximately 50%. Additionally, PS administration significantly reduced orthostatic heart rate change."
Article | Thread
Long COVID and chronic fatigue syndrome/myalgic encephalitis share similar pathophysiologic mechanisms of exercise limitation — Swathi Jothi et al.
"analysis showed that the primary component of exercise limitation to be DM, diffusion of oxygen at the skeletal muscles. DM is a composite parameter that reflects the limitations to O2 transport from hemoglobin to mitochondria"
Article | Thread
Autonomic Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Findings from the Multi-Site Clinical Assessment of ME/CFS (MCAM) Study in the USA — Issa et al.
"We found that people with ME/CFS exhibited a higher burden of autonomic symptoms than healthy controls, as determined through both clinical evaluation (NASA Lean Test) and patient-reported measures (medical records and COMPASS-31)."
Article | Thread
The Role of Neuroinflammation in Post-Exertional Malaise Among Chronic Multisymptom Illness — Ninneman
"PET imaging consisted of a 70 minute dynamic scan with a third generation translocator protein radiotracer – 11C-ER176." "Neuroinflammation was significantly higher in CMI" "No specific brain regions were differentially impacted by exercise in either CMI nor CON"
Thesis | Thread
Precision Medicine Study of Post-Exertional Malaise Epigenetic Changes in Myalgic Encephalomyelitis/Chronic Fatigue Patients During Exercise — Sharma et al.
"This study investigated the temporal–longitudinal DNA methylation changes associated with PEM using a structured two-day maximum repeated effort cardiopulmonary exercise testing (CPET) protocol involving pre- and two post-exercise blood samplings from five ME/CFS patients."
Article | Thread
Mapping the brain’s fatigue network: a transdiagnostic systematic review and meta-analysis on functional correlates of mental fatigue — Schumann et al.
"Three main clusters were highlighted: a frontal-striatal-limbic cluster, a frontal-cingulate cluster, and a parietal cluster, with regions implicated in cognitive, emotional, and somatosensory symptoms associated with mental fatigue. Quality analysis indicated a moderate risk of bias in the majority of the included studies."
Article | Thread
Long Covid research
Age-Related Changes in the Clinical Picture of Long COVID — Mindy J. Fain et al.
"Among community-dwelling adults enrolled in the RECOVER study, we found that those aged 60 and older were less likely to be classified as having Long COVID using predetermined criteria, compared to the younger adults."
Article | Thread
Persistent Immune Dysregulation during Post-Acute Sequelae of COVID-19 is Manifested in Antibodies Targeting Envelope and Nucleocapsid Proteins — Marcin Kwissa et al.
"We demonstrate that IgG antibodies in PASC participants exhibit persistent skewing in SARS-CoV-2 antigen recognition, a pattern that correlates with long-lasting activation of circulating T follicular helper (cTFH) cells and mucosal-associated invariant T (MAIT) cells."
Preprint | Thread
Effect of Metformin on the Risk of Post-coronavirus Disease 2019 Condition Among Individuals With Overweight or Obese: A Population-based Retrospective Cohort Study — Chaichana et al.
"our findings support the protective effect of metformin treatment within 90 days of SARS-COV-2 infection on developing PCC in overweight/obesity patients in real-world settings."
Article | Thread
Altered amyloid plasma profile in patients with disabling headaches after SARS-CoV-2 infection and vaccination — Anne Hege Aamodt et al.
"Altered plasma levels of soluble markers, potentially reflecting changes in amyloid processing, were found in patients with persistent headache following SARS-CoV-2 vaccine, particularly in those with persistent headache after COVID-19. In the latter group, we also found some association with cognitive symptoms."
Article | Thread
Regulation of m7G methylation in long COVID: Expression profiles and early predictive value of key genes — Bai, Wenmei and Li, Fengsen
"The genes include adrenergic receptor alpha 2A, carbonic anhydrase 1, chromodomain helicase DNA binding protein 5, claudin 9, integrin alpha D, SERPINE1, tumor necrosis factor receptor superfamily member 17"
Article | Thread
The Effects of Pseudoserum on Thrombin-Induced Fibrin Networks: Potential for Clinical Insight into Coagulation Independent of Clotting Factors — Massimo Nunes et al.
"we derive pseudoserum or clotting factor-depleted fractions from control, type II diabetes mellitus, and Long COVID platelet-poor plasma (PPP) samples, and expose them to purified, exogenous fibrinogen obtained from healthy donors." "[Fibrin] networks formed using patient pseudoserum show disorganisation, regions of density, fibre-like strands, and anomalous aggregates."
Preprint | Thread
Monitoring of Cardiorespiratory Vagal Desynchrony Using Novel Biomarkers Derived from Smartwatch ECGs in a Patient Recovering from Long COVID – Case Report — Kranck et al.
Case report. "The ECG-based S/R amplitude rate and respiratory desynchronization biomarkers such as RSA and HRV, together with a posture test protocol, represent a novel, non-invasive method and easy ‘at-home’ triage and monitoring of Long Covid, POTS, and fatigue."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 8th September 2025
News, advocacy and articles
UK Parliament Ask your MP to sign the Early Day Motion (EDM) on the Final delivery plan on ME/CFS. The motion welcomes the government delivery plan but points to the lack of commitment to research funding and lack of plans for specialist medical care for people with severe and very severe ME/CFS. The ME Association has provided a template letter for contacting your MP.
Article with template | Thread
USA Solve ME posted an update on the U.S. budget process and pending funding for ME/CFS and Long Covid items. They also encouraged folks to contact their senators and house representatives, either to thank those who already support this or to ask for their support.
Article | Thread
Dr. Peter Rowe was guest in a podcast for paediatricians, The Cribsiders Podcast, where he talked about Long Covid and ME/CFS in children and adolescents.
Podcast l Thread
Denmark A good opinion piece by Daniel Noti in Sundhetspolitisk Tidsskrift, a journal on health and politics. He explains how and why ME patients are harmed when their illness is put into the category of functional disorders.
Opinion piece (Danish) l Thread
Germany
The German Tv show NANO Doku has a 12-minute episode that is mostly about young adolescents with severe ME/CFS.
Video | Thread
Norway Van den Bergh, Landmark, Garner and Reme have written an opinion piece on behalf of Oslo Chronic Fatigue Network for the research news site Forskningno. They argue that thoughts and feelings are often better explanations behind symptoms of Long Covid than biological findings.
Lilledalen has written a reply explaining that psychologising infection associated illness has already been tried, and is not helpful either for recovery nor prevalence.
Article 1 (English) l Article 2 (Norwegian) l Thread
Trial by Error by David Tuller
Interview with Ian Lipkin
A conversation with Dr. Lipkin about his recent study, "his earlier work on what was then being called chronic fatigue syndrome, the role of chronic inflammation, ongoing research projects, and the prospects for effective treatments." Duration: 30 minutes.
YouTube l Thread
Australian Investigators Blame ME/CFS Patient Advocates for Poor Recruitment in "Active Video Gaming" Trial
"In a new paper, a team of investigators from the University of South Australia in Adelaide, Australia, describes a “pilot feasibility” trial for an ME/CFS intervention focused on physical activity. The trial fell dramatically short on recruitment efforts—a failure that the investigators appear to explicitly blame on the patient community rather than any possible shortcomings in their approach."
Article l Thread
"Mass Psychogenic Illness" at Heathrow Airport-NOT!
On a Guardian article about a recent incident at Heathrow Airport where some people reported feeling ill. It was assumed to be a psychosomatic event by among others Professor Wessely, until someone with tear gas got caught. "This incident is a classic example of how quickly those with authority will turn to psychiatric or psycho-sociological assumptions to explain unusual medical phenomena–assumptions that are often asserted as definitive rather than speculative."
Article l Thread
............
Research news
MERUK and MEA
ME Research UK and the ME Association are jointly funding a 12-month study exploring electrical differences in blood cells from people with ME/CFS. The study builds on initial findings in 2019 by Ron Davis on the nanoneedle and will be coordinated by Dr Jaqueline Cliff at Brunel University of London.
Article | Thread
ME research case definition
Prof. Leonard Jason from DePaul University in Chicago invites ME/CFS patients, their families, healthcare providers, and researchers to participate in an online survey for a research study on their perspectives on case definitions and cardinal symptoms of this illness.
Survey | Thread
Neurology Journal "Advancements in Neurology: A Conversation with Dr. Walter Koroshetz - Part 1"
In this video Dr. Stacey Clardy talks with Dr. Walter Koroshetz about "recent advancements in neurology, emerging genomic therapies, the evolving understanding of long COVID, and current NINDS priorities." The discussion of Long Covid includes comments on ME/CFS.
Video | Thread
USA FNIH (Foundation for the National Institutes of Health)
Recordings of all the 2025 RECOVER-TLC (Treat Long Covid) "Pathways to Treatments" workshop sessions, held on Sept. 9 and 10, are now available online.
Website | Thread
............
Coming events
UK Photo Exhibition ‘Lives We Cannot Live’ by Jeremy Jeffs
"‘Lives We Cannot Live’ is a ground-breaking new exhibition featuring photos and stories of people with ME/CFS by photographer Jeremy Jeffs, presented by the ME Association." Oxo Gallery, London, 24 to 28 September.
Details | Thread
#NotJustFatigue "Suffering in Silence: The Urgent Case for Congressional Action on ME/CFS"
Livestream event on September 25, 3:00 to 3:30 Pacific Time. Includes an online briefing and moderated question/answer period (submit questions in advance).
Announcement | Thread
..........
Fundraising
Daratumumab clinical study
ME-fondet, the Norwegian ME Association's fundraiser for research into ME, is now raising funds for a clinical trial on Daratumumab as a potential treatment for ME. The study is led by the ME research team at Haukeland University Hospital (Fluge, Mella et al). The study will cost about US$ 2.6 million/Euro 2.2 million/£ 1.9 million. ME-fondet now has a presentation of the fundraiser in English and is accepting international donations.
More information l Thread
..........
Research
ME/CFS research
A Perspective on the Role of Metformin in Treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID — David Fineberg et al.
"Metformin is an intriguing multiaction drug that may play a significant role in treating ME/CFS and LC. Although more research is needed to refine dosing and delivery methods, the accumulating evidence suggests it could soon be integrated into clinical practice."
Article | Thread
Hormonal Fluctuations And Myalgic Encephalomyelitis/Chronic Fatigue Syndrome In Women: The Role Of Menstrual Cycle And Menopause — Khan et al.
Article | Thread
Long Covid research
CSF immune cell alterations in women with neuropsychiatric Long COVID — Orlinick et al.
"Relative to PBMC, CSF samples demonstrate significantly more genes with large (greater than 20 fold) changes in expression level in the disease state." "pathways involved in cellular stress response, including reactive oxygen species, oxidative phosphorylation, and P53 signaling, are all enriched in the CSF"
Article | Thread
A multi-omics recovery factor predicts long COVID in the IMPACC study — Gisela Gabernet et al.
"Biologic characterization revealed increased inflammatory mediators, elevated signatures of heme metabolism, and decreased androgenic steroids as predictive and ongoing biomarkers of LC"
Article | Thread
Postural orthostatic tachycardia syndrome in post-COVID-19 long-hauler patients is associated with platelet storage pool deficiency — Gunning et al.
"We have validated our previously reported data, which indicates that most POTS patients have a platelet delta granule storage pool deficiency. We do not propose that platelet dense granule deficiency is the etiology of POTS; however, it appears that the condition is somehow associated with POTS."
Article | Thread
Varying Levels of Inflammatory Activity in Brain and Body of Patients with Persistent Fatigue and Difficulty Concentrating After COVID-19: A TSPO PET Study — Denise Visser et al.
"Increased specific [18F]DPA-714 binding was found in some individuals with post-COVID syndrome, indicating the presence of an inflammatory subtype and further supporting the role of neuroinflammation in subtypes of post-COVID syndrome"
Article | Thread
Prevalence and characterization of post-acute sequelae of SARS-CoV-2 infection (PASC) in Rwanda — Rwamwejo et al.
"Approximately one-third of adult Rwandan COVID-19 survivors continue to experience persistent symptoms."
Article | Thread
Long COVID and Food Insecurity in US Adults, 2022-2023 — John C. Lin et al.
"food insecurity was associated with increased odds of having current long COVID and with a reduced likelihood of recovery among those affected."
Article | Thread
Prevalence, Severity, Concomitant Factors, and Natural Trajectory of Insomnia in Patients with Long COVID — Hansel Robinson et al.
"the current study met its intended aims by: (1) showing a high prevalence (78%) of reported insomnia in Long COVID patients, with nearly 50% of patients endorsing a clinically significant threshold of Moderate Insomnia (ISI score 15–21) or Severe Clinical Insomnia (ISI score 22–28); Long COVID (2) finding that neither infection nor the severity of acute, initial COVID-19 nor the number of COVID-19 infections was correlated with the severity of insomnia or global cognitive function at baseline or follow-up."
Article | Thread
Autoantibodies in long COVID: a systematic review — Fabian Wilhelm et al.
"Given the primarily observational nature of the available evidence, no causal inference of autoantibodies on long COVID development is currently possible."
Article | Thread
Effect of low dose naltrexone for long covid: a systematic review — Oyungerel Byambasuren et al.
"Limited evidence from small pre-post studies suggests LDN may improve fatigue, cognition, sleep, pain, and functioning in long covid. However, certainty of evidence is low."
Preprint | Thread
Persistence of Cognitive Difficulties in Adults Three Years After COVID-19 Infection — Serafim et al.
"This study demonstrates that COVID-19 exerts a significant and multifactorial impact on cognition, particularly affecting executive functions, working memory, verbal fluency, and recognition memory."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
UK Parliament Ask your MP to sign the Early Day Motion (EDM) on the Final delivery plan on ME/CFS. The motion welcomes the government delivery plan but points to the lack of commitment to research funding and lack of plans for specialist medical care for people with severe and very severe ME/CFS. The ME Association has provided a template letter for contacting your MP.
Article with template | Thread
USA Solve ME posted an update on the U.S. budget process and pending funding for ME/CFS and Long Covid items. They also encouraged folks to contact their senators and house representatives, either to thank those who already support this or to ask for their support.
Article | Thread
Dr. Peter Rowe was guest in a podcast for paediatricians, The Cribsiders Podcast, where he talked about Long Covid and ME/CFS in children and adolescents.
Podcast l Thread
Denmark A good opinion piece by Daniel Noti in Sundhetspolitisk Tidsskrift, a journal on health and politics. He explains how and why ME patients are harmed when their illness is put into the category of functional disorders.
Opinion piece (Danish) l Thread
Germany
The German Tv show NANO Doku has a 12-minute episode that is mostly about young adolescents with severe ME/CFS.
Video | Thread
Norway Van den Bergh, Landmark, Garner and Reme have written an opinion piece on behalf of Oslo Chronic Fatigue Network for the research news site Forskningno. They argue that thoughts and feelings are often better explanations behind symptoms of Long Covid than biological findings.
Lilledalen has written a reply explaining that psychologising infection associated illness has already been tried, and is not helpful either for recovery nor prevalence.
Article 1 (English) l Article 2 (Norwegian) l Thread
Trial by Error by David Tuller
Interview with Ian Lipkin
A conversation with Dr. Lipkin about his recent study, "his earlier work on what was then being called chronic fatigue syndrome, the role of chronic inflammation, ongoing research projects, and the prospects for effective treatments." Duration: 30 minutes.
YouTube l Thread
Australian Investigators Blame ME/CFS Patient Advocates for Poor Recruitment in "Active Video Gaming" Trial
"In a new paper, a team of investigators from the University of South Australia in Adelaide, Australia, describes a “pilot feasibility” trial for an ME/CFS intervention focused on physical activity. The trial fell dramatically short on recruitment efforts—a failure that the investigators appear to explicitly blame on the patient community rather than any possible shortcomings in their approach."
Article l Thread
"Mass Psychogenic Illness" at Heathrow Airport-NOT!
On a Guardian article about a recent incident at Heathrow Airport where some people reported feeling ill. It was assumed to be a psychosomatic event by among others Professor Wessely, until someone with tear gas got caught. "This incident is a classic example of how quickly those with authority will turn to psychiatric or psycho-sociological assumptions to explain unusual medical phenomena–assumptions that are often asserted as definitive rather than speculative."
Article l Thread
............
Research news
MERUK and MEA
ME Research UK and the ME Association are jointly funding a 12-month study exploring electrical differences in blood cells from people with ME/CFS. The study builds on initial findings in 2019 by Ron Davis on the nanoneedle and will be coordinated by Dr Jaqueline Cliff at Brunel University of London.
Article | Thread
ME research case definition
Prof. Leonard Jason from DePaul University in Chicago invites ME/CFS patients, their families, healthcare providers, and researchers to participate in an online survey for a research study on their perspectives on case definitions and cardinal symptoms of this illness.
Survey | Thread
Neurology Journal "Advancements in Neurology: A Conversation with Dr. Walter Koroshetz - Part 1"
In this video Dr. Stacey Clardy talks with Dr. Walter Koroshetz about "recent advancements in neurology, emerging genomic therapies, the evolving understanding of long COVID, and current NINDS priorities." The discussion of Long Covid includes comments on ME/CFS.
Video | Thread
USA FNIH (Foundation for the National Institutes of Health)
Recordings of all the 2025 RECOVER-TLC (Treat Long Covid) "Pathways to Treatments" workshop sessions, held on Sept. 9 and 10, are now available online.
Website | Thread
............
Coming events
UK Photo Exhibition ‘Lives We Cannot Live’ by Jeremy Jeffs
"‘Lives We Cannot Live’ is a ground-breaking new exhibition featuring photos and stories of people with ME/CFS by photographer Jeremy Jeffs, presented by the ME Association." Oxo Gallery, London, 24 to 28 September.
Details | Thread
#NotJustFatigue "Suffering in Silence: The Urgent Case for Congressional Action on ME/CFS"
Livestream event on September 25, 3:00 to 3:30 Pacific Time. Includes an online briefing and moderated question/answer period (submit questions in advance).
Announcement | Thread
..........
Fundraising
Daratumumab clinical study
ME-fondet, the Norwegian ME Association's fundraiser for research into ME, is now raising funds for a clinical trial on Daratumumab as a potential treatment for ME. The study is led by the ME research team at Haukeland University Hospital (Fluge, Mella et al). The study will cost about US$ 2.6 million/Euro 2.2 million/£ 1.9 million. ME-fondet now has a presentation of the fundraiser in English and is accepting international donations.
More information l Thread
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Research
ME/CFS research
A Perspective on the Role of Metformin in Treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID — David Fineberg et al.
"Metformin is an intriguing multiaction drug that may play a significant role in treating ME/CFS and LC. Although more research is needed to refine dosing and delivery methods, the accumulating evidence suggests it could soon be integrated into clinical practice."
Article | Thread
Hormonal Fluctuations And Myalgic Encephalomyelitis/Chronic Fatigue Syndrome In Women: The Role Of Menstrual Cycle And Menopause — Khan et al.
Article | Thread
Long Covid research
CSF immune cell alterations in women with neuropsychiatric Long COVID — Orlinick et al.
"Relative to PBMC, CSF samples demonstrate significantly more genes with large (greater than 20 fold) changes in expression level in the disease state." "pathways involved in cellular stress response, including reactive oxygen species, oxidative phosphorylation, and P53 signaling, are all enriched in the CSF"
Article | Thread
A multi-omics recovery factor predicts long COVID in the IMPACC study — Gisela Gabernet et al.
"Biologic characterization revealed increased inflammatory mediators, elevated signatures of heme metabolism, and decreased androgenic steroids as predictive and ongoing biomarkers of LC"
Article | Thread
Postural orthostatic tachycardia syndrome in post-COVID-19 long-hauler patients is associated with platelet storage pool deficiency — Gunning et al.
"We have validated our previously reported data, which indicates that most POTS patients have a platelet delta granule storage pool deficiency. We do not propose that platelet dense granule deficiency is the etiology of POTS; however, it appears that the condition is somehow associated with POTS."
Article | Thread
Varying Levels of Inflammatory Activity in Brain and Body of Patients with Persistent Fatigue and Difficulty Concentrating After COVID-19: A TSPO PET Study — Denise Visser et al.
"Increased specific [18F]DPA-714 binding was found in some individuals with post-COVID syndrome, indicating the presence of an inflammatory subtype and further supporting the role of neuroinflammation in subtypes of post-COVID syndrome"
Article | Thread
Prevalence and characterization of post-acute sequelae of SARS-CoV-2 infection (PASC) in Rwanda — Rwamwejo et al.
"Approximately one-third of adult Rwandan COVID-19 survivors continue to experience persistent symptoms."
Article | Thread
Long COVID and Food Insecurity in US Adults, 2022-2023 — John C. Lin et al.
"food insecurity was associated with increased odds of having current long COVID and with a reduced likelihood of recovery among those affected."
Article | Thread
Prevalence, Severity, Concomitant Factors, and Natural Trajectory of Insomnia in Patients with Long COVID — Hansel Robinson et al.
"the current study met its intended aims by: (1) showing a high prevalence (78%) of reported insomnia in Long COVID patients, with nearly 50% of patients endorsing a clinically significant threshold of Moderate Insomnia (ISI score 15–21) or Severe Clinical Insomnia (ISI score 22–28); Long COVID (2) finding that neither infection nor the severity of acute, initial COVID-19 nor the number of COVID-19 infections was correlated with the severity of insomnia or global cognitive function at baseline or follow-up."
Article | Thread
Autoantibodies in long COVID: a systematic review — Fabian Wilhelm et al.
"Given the primarily observational nature of the available evidence, no causal inference of autoantibodies on long COVID development is currently possible."
Article | Thread
Effect of low dose naltrexone for long covid: a systematic review — Oyungerel Byambasuren et al.
"Limited evidence from small pre-post studies suggests LDN may improve fatigue, cognition, sleep, pain, and functioning in long covid. However, certainty of evidence is low."
Preprint | Thread
Persistence of Cognitive Difficulties in Adults Three Years After COVID-19 Infection — Serafim et al.
"This study demonstrates that COVID-19 exerts a significant and multifactorial impact on cognition, particularly affecting executive functions, working memory, verbal fluency, and recognition memory."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 15th September 2025
News, advocacy and articles
#MEAction (USA) "Advocacy Works: Fighting for ME/CFS and Long COVID in Minnesota"
An update on a new program, funded by the Minnesota Department of Health, for Minnesota state residents who have Long COVID, ME/CFS, and other energy-limiting illnesses. This pilot program from #MEAction helps people apply for in-home help.
Article | Thread
UK Action for ME Annual report and accounts are available. They highlight their role in DecodeME, their medical advice services, and ongoing advocacy.
Report | Thread
UK APPG The All-Party Parliamentary Group for ME/CFS minutes of the meeting, 11 September are available. Few MP's were able to attend. Their focus is on delivery of the Government's plan, despite recognising its shortcomings.
Minutes | Thread
Denmark A debate about how it's both wrong and harmful to define ME as a functional disorder in the journal on health and politics Sundhedspolitisk Tidsskrift continues (see last week's news brief). A reply from professor Per Fink (1) who still promotes defining ME as a functional disorder and CBT/GET as treatments, has received three responses from Emil Nørgaard (2), Marie Louise Ilsøe Gustavussen (3) and Per Lykke Søndergård (4) on the devastating consequences of this approach.
1 l 2 l 3 l 4 l Thread
Germany
The Sick Times spoke with twelve people who went to rehabilitation clinics in Germany. The country’s insurance system pushes people to go through these clinics before they can access disability supports. Patients feel pressured to partake in exercise-based therapies that can make their disease worse.
Article | Thread
#MEAction The pillow writers group has published a new collection called Near-Life Experiences: The Pillow Writers Anthology, Issue 2. This ebook is available on Amazon. All proceeds go to #MEAction.
Thread
..........
Research news
Switzerland
On Linkedin, psychiatrist Michaela Bauer from Switzerland wrote a short review of a study specifically about men and their experience with ME/CFS.
Article | Thread
..........
Coming events
Solve ME Webinar: The Unified Platform: Advancing Research Across ME/CFS, Long Covid, and Other Chronic Conditions
Tuesday, October 14, 3 PM Pacific / 6 PM Eastern
Webinar panelists will discuss the unhide® Solve Together Unified Platform
Announcement | Registration | Thread
................
Research
ME/CFS research
Metabolic neuroimaging of myalgic encephalomyelitis/chronic fatigue syndrome and Long-COVID — Zhu, Yijuan et al.
"Advanced imaging techniques such as FDG-PET and MRS have enabled the detection of metabolic dysfunctions in ME/CFS and Long-COVID that cannot be captured by conventional structural imaging. This review summarized the existing literature on metabolic neuroimaging in both conditions, with a focus on glucose metabolism, oxygen utilization, and other key metabolites."
Article | Thread
Solriamfetol improves daily fatigue symptoms in adults with myalgic encephalomyelitis/chronic fatigue syndrome after 8 weeks of treatment — Young et al.
Article | Thread
Exploratory study on autoantibodies to arginine-rich human peptides mimicking Epstein-Barr virus in women with post-COVID and myalgic encephalomyelitis/chronic fatigue syndrome — Hoheisel et al.
"This exploratory study identify autoantibodies directed against EBV mimicking arginine-rich sequences in human proteins, suggesting a potential role for molecular mimicry in the pathogenesis of PCS and ME/CFS."
Article | Thread
Long Covid research
The potential bidirectional relationship between long COVID and menstruation — Maybin et al.
"this study provides evidence of an association between long COVID and [abnormal uterine bleeding] that may be the result of increased androgens and an altered endometrial inflammatory response at menstruation" "We also reveal an association of increased severity of long COVID symptoms with the late secretory/menstrual phase" "This may be explained by increased cytokine production during the menstrual phase, which was greater in those with long COVID than in controls."
Article | Thread
Effect of Paxlovid treatment during acute COVID-19 on Long COVID onset: An EHR-based target trial emulation from the N3C and RECOVER consortia — Alexander Preiss et al.
"this study—with a large, nationally sampled cohort; a contemporary study period; and causal inference methodology—found that Paxlovid treatment during acute COVID-19 had no effect on subsequent PASC incidence."
Article | Thread
Factors associated with persistence or recovery from long COVID six months post SARS-CoV-2 infection — Mulu Woldegiorgis et al.
"longitudinal follow-up among a cohort of individuals with long COVID 3 months post infection […] observed that many highly symptomatic persons fully recovered by 6 months" "the cohort with persistent long COVID reported almost no improvement in overall symptomatology between the 3- and 6-month timepoints. These data suggest that there may be distinct clinical trajectories for long COVID between 3- and 6-months follow-up"
Article | Thread
Global Prevalence of Long COVID, Its Subtypes, and Risk Factors: An Updated Systematic Review and Meta-analysis — Hou et al.
"the persistence of long COVID symptoms across varying follow-up durations highlights the long-term burden of these conditions and the need to better understand long COVID physiology"
Article | Thread
Abnormal Brain Activation Patterns in Patients With Post-Acute Sequelae of COVID-19 (PASC) During Recovery: A fNIRS Study — Yuchen Ran et al.
"The enhanced activation of the occipital lobe revealed a unique neural compensatory mechanism specific to the PASC group, wherein PASC patients increasingly depended on the visual cortex to compensate for deficits in executive function during [working memory] tasks."
Article | Thread
Characterisation of a persistent SARS-CoV-2 infection lasting more than 750 days in a person living with HIV: a genomic analysis — Velasquez-Reyes et al.
"This report emphasises that SARS-CoV-2 can establish a chronic, non-lethal infection in individuals with compromised immune function that leads to considerable viral evolution."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
#MEAction (USA) "Advocacy Works: Fighting for ME/CFS and Long COVID in Minnesota"
An update on a new program, funded by the Minnesota Department of Health, for Minnesota state residents who have Long COVID, ME/CFS, and other energy-limiting illnesses. This pilot program from #MEAction helps people apply for in-home help.
Article | Thread
UK Action for ME Annual report and accounts are available. They highlight their role in DecodeME, their medical advice services, and ongoing advocacy.
Report | Thread
UK APPG The All-Party Parliamentary Group for ME/CFS minutes of the meeting, 11 September are available. Few MP's were able to attend. Their focus is on delivery of the Government's plan, despite recognising its shortcomings.
Minutes | Thread
Denmark A debate about how it's both wrong and harmful to define ME as a functional disorder in the journal on health and politics Sundhedspolitisk Tidsskrift continues (see last week's news brief). A reply from professor Per Fink (1) who still promotes defining ME as a functional disorder and CBT/GET as treatments, has received three responses from Emil Nørgaard (2), Marie Louise Ilsøe Gustavussen (3) and Per Lykke Søndergård (4) on the devastating consequences of this approach.
1 l 2 l 3 l 4 l Thread
Germany
The Sick Times spoke with twelve people who went to rehabilitation clinics in Germany. The country’s insurance system pushes people to go through these clinics before they can access disability supports. Patients feel pressured to partake in exercise-based therapies that can make their disease worse.
Article | Thread
#MEAction The pillow writers group has published a new collection called Near-Life Experiences: The Pillow Writers Anthology, Issue 2. This ebook is available on Amazon. All proceeds go to #MEAction.
Thread
..........
Research news
Switzerland
On Linkedin, psychiatrist Michaela Bauer from Switzerland wrote a short review of a study specifically about men and their experience with ME/CFS.
Article | Thread
..........
Coming events
Solve ME Webinar: The Unified Platform: Advancing Research Across ME/CFS, Long Covid, and Other Chronic Conditions
Tuesday, October 14, 3 PM Pacific / 6 PM Eastern
Webinar panelists will discuss the unhide® Solve Together Unified Platform
Announcement | Registration | Thread
................
Research
ME/CFS research
Metabolic neuroimaging of myalgic encephalomyelitis/chronic fatigue syndrome and Long-COVID — Zhu, Yijuan et al.
"Advanced imaging techniques such as FDG-PET and MRS have enabled the detection of metabolic dysfunctions in ME/CFS and Long-COVID that cannot be captured by conventional structural imaging. This review summarized the existing literature on metabolic neuroimaging in both conditions, with a focus on glucose metabolism, oxygen utilization, and other key metabolites."
Article | Thread
Solriamfetol improves daily fatigue symptoms in adults with myalgic encephalomyelitis/chronic fatigue syndrome after 8 weeks of treatment — Young et al.
Article | Thread
Exploratory study on autoantibodies to arginine-rich human peptides mimicking Epstein-Barr virus in women with post-COVID and myalgic encephalomyelitis/chronic fatigue syndrome — Hoheisel et al.
"This exploratory study identify autoantibodies directed against EBV mimicking arginine-rich sequences in human proteins, suggesting a potential role for molecular mimicry in the pathogenesis of PCS and ME/CFS."
Article | Thread
Long Covid research
The potential bidirectional relationship between long COVID and menstruation — Maybin et al.
"this study provides evidence of an association between long COVID and [abnormal uterine bleeding] that may be the result of increased androgens and an altered endometrial inflammatory response at menstruation" "We also reveal an association of increased severity of long COVID symptoms with the late secretory/menstrual phase" "This may be explained by increased cytokine production during the menstrual phase, which was greater in those with long COVID than in controls."
Article | Thread
Effect of Paxlovid treatment during acute COVID-19 on Long COVID onset: An EHR-based target trial emulation from the N3C and RECOVER consortia — Alexander Preiss et al.
"this study—with a large, nationally sampled cohort; a contemporary study period; and causal inference methodology—found that Paxlovid treatment during acute COVID-19 had no effect on subsequent PASC incidence."
Article | Thread
Factors associated with persistence or recovery from long COVID six months post SARS-CoV-2 infection — Mulu Woldegiorgis et al.
"longitudinal follow-up among a cohort of individuals with long COVID 3 months post infection […] observed that many highly symptomatic persons fully recovered by 6 months" "the cohort with persistent long COVID reported almost no improvement in overall symptomatology between the 3- and 6-month timepoints. These data suggest that there may be distinct clinical trajectories for long COVID between 3- and 6-months follow-up"
Article | Thread
Global Prevalence of Long COVID, Its Subtypes, and Risk Factors: An Updated Systematic Review and Meta-analysis — Hou et al.
"the persistence of long COVID symptoms across varying follow-up durations highlights the long-term burden of these conditions and the need to better understand long COVID physiology"
Article | Thread
Abnormal Brain Activation Patterns in Patients With Post-Acute Sequelae of COVID-19 (PASC) During Recovery: A fNIRS Study — Yuchen Ran et al.
"The enhanced activation of the occipital lobe revealed a unique neural compensatory mechanism specific to the PASC group, wherein PASC patients increasingly depended on the visual cortex to compensate for deficits in executive function during [working memory] tasks."
Article | Thread
Characterisation of a persistent SARS-CoV-2 infection lasting more than 750 days in a person living with HIV: a genomic analysis — Velasquez-Reyes et al.
"This report emphasises that SARS-CoV-2 can establish a chronic, non-lethal infection in individuals with compromised immune function that leads to considerable viral evolution."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 22nd September 2025
News, advocacy and articles
Switzerland
The Council of States has approved a motion calling for a national strategy to improve the health situation of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid. The patient organisations Long Covid Switzerland, ME/CFS Switzerland, and the Swiss Society for ME & CFS welcome the decision.
Article | Thread
Germany
The German science magazine 'Spektrum der Wissenschaft' features a theme week for Long Covid. It includes an interview with Prof. Carmen Scheibenbogen.
Article | Thread
UK #ThereForME Commissioning an NHS service for very severe ME by Karen Hargrave
The article summarises the results of a small survey of people with very severe ME/CFS and carers, giving their perspectives on what is needed.
Article | Thread
Denmark A critical debate about Per Fink and the harmful consequences of ME being defined as a functional disorder continues in the journal on health politics Sundhedspolitisk Tidsskrift. (See last week's news in brief). New responses in the debate are from Casper Frimodt, Vibeke Vind, Per Fink, Birgitte Langvad Hansen and Brian Heron.
Thread with links and summary
The Sick Times "Long COVID is not FND, but some patients are getting diagnosed with it. Here’s what to do if it happens to you."
David Tuller writes about problems with the functional neurological disorder (FND) diagnosis and what patients can do if this happens.
Article | Thread
Bateman Horne Center "Why Rheumatology Must Prepare for Infection-Associated Chronic Conditions (IACCs)"
New blog suggesting that the rheumatology specialty should expand to include Infection-Associated Chronic Conditions (IACCs) such as ME/CFS and POTS.
Blog | Thread
...........
Research news
Germany
The recordings of the 2025 scientific conference organised by Fatigatio are now available on YouTube.
Videos | Thread
Daratumumab A news article about the clinical trial at Haukeland University Hospital in Norway on Daratumumab as possible ME treatment interviews one of the participants, Vilde Lepsøy, who will receive her first injection next week. The study lacks 5.5 million NOK (approx 550 000 USD, 471 000 EUR, 411 GBP) until it's fully financed. Researcher Kari Sørland says: "ME affects many people, and many of them are young. We therefore belive that it is good social economics to research the disease and would like to see us receive public funding."
Article (Norwegian) l Fundraising for the trial by the Norwegian ME Association l Thread
Trial by Error by David Tuller
Cochrane CFS/ME Exercise Review "May Not Apply" to Patients Diagnosed with Newer ME/CFS Definitions, Per Lead Author
On the saga of the disputed and harmful Cochrane review on exercise as ME/CFS treatment which still hasn't been withdrawn or updated. Lead author Lillebeth Larun admits in a response to criticism of the review that it may not apply to "subgroups" of ME/CFS where PEM is included in the definition of the disease. Tuller comments that this is "a pretty good argument for an updated ME/CFS review".
Article l Thread
Yale's Akiko Iwasaki on the Keystone Symposium, the Debate on Viral Persistence, and Related Issues
Interview with Akiko Iwasaki. Duration: 20 minutes
Interview l Thread
..........
Research
ME/CFS research
Advancing Digital Precision Medicine for Chronic Fatigue Syndrome through Longitudinal Large-Scale Multi-Modal Biological Omics Modeling with Machine Learning and Artificial Intelligence — Xiong
"In ME/CFS, the regulatory capacity of the immune system diminishes, leading to the loss of health-associated interactions with Th17, Th22, and Treg cells, and an increase in inflammatory immune activity. Pathogenic immune cells, including CD8 MAIT and γδT cells, show increased activity, along with the secretion of inflammatory cytokines such as IFNγ and GzmA"
Preprint | Thread
Circulating Levels of SMPDL3B Define Metabolic Endophenotypes and Subclinical Kidney Alterations in Myalgic Encephalomyelitis — Rostami-Afshari et al.
"Stratification by plasma SMPDL3B levels uncovered three biologically distinct endophenotypes with divergent renal and lipidomic profiles."
Article | Thread
The Potential Causes Of Myasthenia And Fasciculations In The Severely Ill Me/Cfs-Patient: Role Of Disturbed Electrophysiology — Klaus Wirth and Jürgen M. Steinacker
Hypothesis paper.
Preprint | Thread
Endometriosis and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review and Meta-Analysis — Compton et al.
"limitations of this meta-analysis include (1) a predominance of cross-sectional designs precluding causal inference, (2) potential confounding by unmeasured variables (e.g., anxiety, depression, chronic pain syndrome, autoimmune comorbidities), and (3) overrepresentation of U.S.-based studies, limiting generalizability."
Article | Thread
The gut microbial composition is different in chronic fatigue syndrome than in healthy controls — Prylińska-Jaśkowiak et al.
"our findings further support the existence of a distinct gut microbiome signature in ME/CFS" "CFS diagnosis was based on the Fukuda Criteria, which might serve as a limiting factor."
Article | Thread
The health and economic burden on family caregivers of persons with me/cfs diagnosis: a register data study from Norway — Kielland et al.
"In this study, we used Norwegian population health registry data to document the gendered experiences of family caregivers of persons with ME, diagnosed by the diagnostic code G93.3."
Article | Thread
Reliability and validity of the German version of the DePaul Symptom Questionnaire Post-Exertional Malaise (DSQ-PEM) — Kuczyk et al.
"this study confirms the strong psychometric properties of the German version of the DSQ-PEM and supports the instrument as a reliable and valid tool for measuring PEM in Germany and other German-speaking countries."
Article | Thread
Related research
The genetic architecture of fibromyalgia across 2.5 million individuals — Isabel Kerrebijn et al.
"we identified 26 genetic risk loci for fibromyalgia, providing the first insights into its genetic architecture. These findings establish a firm biological basis for a condition long defined solely by its clinical symptoms,"
Preprint | Thread
Long Covid research
Microneurography Reveals Unmyelinated Small Nerve Fiber Dysfunction in Long COVID — Ana Ribeiro et al.
"We show for the first time widespread abnormalities in the function of unmyelinated somatosensory and autonomic axons that may explain the multiplicity of symptoms in long COVID."
Article | Thread
Global and Sex-Stratified Genome-Wide Association Study of Long COVID Based on Patient-Driven Symptom Recall — Polo-Alonso et al.
"Although no genetic variants reached genome-wide significant level, suggestive signals (p-value < 5 × 10−6 ) were found in the three GWAS, supporting the idea that genetic susceptibility to long COVID may be sex-specific."
Article | Thread
Genome-wide association studies of Long COVID and post-acute complications of SARS-CoV-2 in the UK Biobank Data — Daniel Prieto-Alhambra et al.
"Our genome-wide association study of Long COVID in the UK Biobank identified 15 lead genetic variants that reached suggestive statistical significance (p-value < 5×10⁻⁶) in the discovery cohort. Among these, eleven variants (73.3%) demonstrated robustness during validation analysis, with one variant (rs12335232 in the ADCY8 gene) achieving full validation"
Preprint | Thread
Associations of selective serotonin reuptake inhibitors and long COVID risk in patients with depression: a retrospective cohort study — Gao et al.
"our findings suggest that SSRIs were associated with a lower risk of developing long‑COVID, particularly its neurologic and musculoskeletal sequelae, in patients with depression, compared with non‑SSRI antidepressants."
Article | Thread
Anti-neuronal and anti-mitochondrial autoantibodies are associated with lower functional status and more severe respiratory symptoms in post COVID syndrome — Vogelgesang et al.
"The present exploratory study showed an association between the auto-Abs and the disease without implying a causal relationship"
Article | Thread
Variant connective tissue as a risk factor for long COVID: a case-control study of data from a retrospective online survey of adults in the USA and UK — Regina A Torok et al.
"findings suggest that people with variant connective tissue (manifest as joint hypermobility) disproportionately experience long COVID." "the measure of extreme hypermobility is novel and not yet validated, and both the measure of GJH and the measure of extreme hypermobility rely on patient responses to survey questions"
Article | Thread
Sleep architecture and rapid eye movement sleep without atonia in post-COVID-19 insomnia — Ibrahim et al.
"We found a higher average heart rate during sleep in COVID-19 insomnia patients when compared specifically to the combined non-COVID insomnia (p=0.046). This suggests heightened autonomic activity during the night in these patients, potentially contributing to insomnia."
Article | Thread
Rising Cognitive Disability as a Public Health Concern Among US Adults — Wong et al.
"The disproportionate growth in cognitive disability among younger adults seems to be the primary driver of the overall national trend."
Article | Thread
Evidence of clinical and brain recovery in post-COVID-19 condition: a three-year follow-up study — Dadsena et al.
"We observed a slow clinical improvement, alongside structural changes and widespread neuronal activation in periventricular regions without signs of neurodegeneration or systemic inflammation, suggesting an overall beginning restoration of brain function."
Article | Thread
Olfactory Dysfunction After SARS-CoV-2 Infection in the RECOVER Adult Cohort — Leora I. Horwitz et al.
"Our findings corroborate prior survey studies suggesting that SARS-CoV-2 is associated with persistent olfactory dysfunction and confirm small prior objective studies finding that patients underestimate their smell loss. The reason for underestimation is uncertain. It is possible that cognitive deficits could contribute to decreased awareness of sensory changes."
Article | Thread
When We Don’t Have All the Answers: Long COVID and the Need for Humility in Medicine — Liza Di Leo Thomas
Editorial. "In the hope of returning their lives to their pre-illness state, most patients research their own conditions. As physicians, we must accept that these patients may know more than we do about their condition. This idea can be difficult to accept because we are supposed to be the experts, the ones who can advise patients on the best tests and the best possible management of their conditions."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
Switzerland
The Council of States has approved a motion calling for a national strategy to improve the health situation of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid. The patient organisations Long Covid Switzerland, ME/CFS Switzerland, and the Swiss Society for ME & CFS welcome the decision.
Article | Thread
Germany
The German science magazine 'Spektrum der Wissenschaft' features a theme week for Long Covid. It includes an interview with Prof. Carmen Scheibenbogen.
Article | Thread
UK #ThereForME Commissioning an NHS service for very severe ME by Karen Hargrave
The article summarises the results of a small survey of people with very severe ME/CFS and carers, giving their perspectives on what is needed.
Article | Thread
Denmark A critical debate about Per Fink and the harmful consequences of ME being defined as a functional disorder continues in the journal on health politics Sundhedspolitisk Tidsskrift. (See last week's news in brief). New responses in the debate are from Casper Frimodt, Vibeke Vind, Per Fink, Birgitte Langvad Hansen and Brian Heron.
Thread with links and summary
The Sick Times "Long COVID is not FND, but some patients are getting diagnosed with it. Here’s what to do if it happens to you."
David Tuller writes about problems with the functional neurological disorder (FND) diagnosis and what patients can do if this happens.
Article | Thread
Bateman Horne Center "Why Rheumatology Must Prepare for Infection-Associated Chronic Conditions (IACCs)"
New blog suggesting that the rheumatology specialty should expand to include Infection-Associated Chronic Conditions (IACCs) such as ME/CFS and POTS.
Blog | Thread
...........
Research news
Germany
The recordings of the 2025 scientific conference organised by Fatigatio are now available on YouTube.
Videos | Thread
Daratumumab A news article about the clinical trial at Haukeland University Hospital in Norway on Daratumumab as possible ME treatment interviews one of the participants, Vilde Lepsøy, who will receive her first injection next week. The study lacks 5.5 million NOK (approx 550 000 USD, 471 000 EUR, 411 GBP) until it's fully financed. Researcher Kari Sørland says: "ME affects many people, and many of them are young. We therefore belive that it is good social economics to research the disease and would like to see us receive public funding."
Article (Norwegian) l Fundraising for the trial by the Norwegian ME Association l Thread
Trial by Error by David Tuller
Cochrane CFS/ME Exercise Review "May Not Apply" to Patients Diagnosed with Newer ME/CFS Definitions, Per Lead Author
On the saga of the disputed and harmful Cochrane review on exercise as ME/CFS treatment which still hasn't been withdrawn or updated. Lead author Lillebeth Larun admits in a response to criticism of the review that it may not apply to "subgroups" of ME/CFS where PEM is included in the definition of the disease. Tuller comments that this is "a pretty good argument for an updated ME/CFS review".
Article l Thread
Yale's Akiko Iwasaki on the Keystone Symposium, the Debate on Viral Persistence, and Related Issues
Interview with Akiko Iwasaki. Duration: 20 minutes
Interview l Thread
..........
Research
ME/CFS research
Advancing Digital Precision Medicine for Chronic Fatigue Syndrome through Longitudinal Large-Scale Multi-Modal Biological Omics Modeling with Machine Learning and Artificial Intelligence — Xiong
"In ME/CFS, the regulatory capacity of the immune system diminishes, leading to the loss of health-associated interactions with Th17, Th22, and Treg cells, and an increase in inflammatory immune activity. Pathogenic immune cells, including CD8 MAIT and γδT cells, show increased activity, along with the secretion of inflammatory cytokines such as IFNγ and GzmA"
Preprint | Thread
Circulating Levels of SMPDL3B Define Metabolic Endophenotypes and Subclinical Kidney Alterations in Myalgic Encephalomyelitis — Rostami-Afshari et al.
"Stratification by plasma SMPDL3B levels uncovered three biologically distinct endophenotypes with divergent renal and lipidomic profiles."
Article | Thread
The Potential Causes Of Myasthenia And Fasciculations In The Severely Ill Me/Cfs-Patient: Role Of Disturbed Electrophysiology — Klaus Wirth and Jürgen M. Steinacker
Hypothesis paper.
Preprint | Thread
Endometriosis and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review and Meta-Analysis — Compton et al.
"limitations of this meta-analysis include (1) a predominance of cross-sectional designs precluding causal inference, (2) potential confounding by unmeasured variables (e.g., anxiety, depression, chronic pain syndrome, autoimmune comorbidities), and (3) overrepresentation of U.S.-based studies, limiting generalizability."
Article | Thread
The gut microbial composition is different in chronic fatigue syndrome than in healthy controls — Prylińska-Jaśkowiak et al.
"our findings further support the existence of a distinct gut microbiome signature in ME/CFS" "CFS diagnosis was based on the Fukuda Criteria, which might serve as a limiting factor."
Article | Thread
The health and economic burden on family caregivers of persons with me/cfs diagnosis: a register data study from Norway — Kielland et al.
"In this study, we used Norwegian population health registry data to document the gendered experiences of family caregivers of persons with ME, diagnosed by the diagnostic code G93.3."
Article | Thread
Reliability and validity of the German version of the DePaul Symptom Questionnaire Post-Exertional Malaise (DSQ-PEM) — Kuczyk et al.
"this study confirms the strong psychometric properties of the German version of the DSQ-PEM and supports the instrument as a reliable and valid tool for measuring PEM in Germany and other German-speaking countries."
Article | Thread
Related research
The genetic architecture of fibromyalgia across 2.5 million individuals — Isabel Kerrebijn et al.
"we identified 26 genetic risk loci for fibromyalgia, providing the first insights into its genetic architecture. These findings establish a firm biological basis for a condition long defined solely by its clinical symptoms,"
Preprint | Thread
Long Covid research
Microneurography Reveals Unmyelinated Small Nerve Fiber Dysfunction in Long COVID — Ana Ribeiro et al.
"We show for the first time widespread abnormalities in the function of unmyelinated somatosensory and autonomic axons that may explain the multiplicity of symptoms in long COVID."
Article | Thread
Global and Sex-Stratified Genome-Wide Association Study of Long COVID Based on Patient-Driven Symptom Recall — Polo-Alonso et al.
"Although no genetic variants reached genome-wide significant level, suggestive signals (p-value < 5 × 10−6 ) were found in the three GWAS, supporting the idea that genetic susceptibility to long COVID may be sex-specific."
Article | Thread
Genome-wide association studies of Long COVID and post-acute complications of SARS-CoV-2 in the UK Biobank Data — Daniel Prieto-Alhambra et al.
"Our genome-wide association study of Long COVID in the UK Biobank identified 15 lead genetic variants that reached suggestive statistical significance (p-value < 5×10⁻⁶) in the discovery cohort. Among these, eleven variants (73.3%) demonstrated robustness during validation analysis, with one variant (rs12335232 in the ADCY8 gene) achieving full validation"
Preprint | Thread
Associations of selective serotonin reuptake inhibitors and long COVID risk in patients with depression: a retrospective cohort study — Gao et al.
"our findings suggest that SSRIs were associated with a lower risk of developing long‑COVID, particularly its neurologic and musculoskeletal sequelae, in patients with depression, compared with non‑SSRI antidepressants."
Article | Thread
Anti-neuronal and anti-mitochondrial autoantibodies are associated with lower functional status and more severe respiratory symptoms in post COVID syndrome — Vogelgesang et al.
"The present exploratory study showed an association between the auto-Abs and the disease without implying a causal relationship"
Article | Thread
Variant connective tissue as a risk factor for long COVID: a case-control study of data from a retrospective online survey of adults in the USA and UK — Regina A Torok et al.
"findings suggest that people with variant connective tissue (manifest as joint hypermobility) disproportionately experience long COVID." "the measure of extreme hypermobility is novel and not yet validated, and both the measure of GJH and the measure of extreme hypermobility rely on patient responses to survey questions"
Article | Thread
Sleep architecture and rapid eye movement sleep without atonia in post-COVID-19 insomnia — Ibrahim et al.
"We found a higher average heart rate during sleep in COVID-19 insomnia patients when compared specifically to the combined non-COVID insomnia (p=0.046). This suggests heightened autonomic activity during the night in these patients, potentially contributing to insomnia."
Article | Thread
Rising Cognitive Disability as a Public Health Concern Among US Adults — Wong et al.
"The disproportionate growth in cognitive disability among younger adults seems to be the primary driver of the overall national trend."
Article | Thread
Evidence of clinical and brain recovery in post-COVID-19 condition: a three-year follow-up study — Dadsena et al.
"We observed a slow clinical improvement, alongside structural changes and widespread neuronal activation in periventricular regions without signs of neurodegeneration or systemic inflammation, suggesting an overall beginning restoration of brain function."
Article | Thread
Olfactory Dysfunction After SARS-CoV-2 Infection in the RECOVER Adult Cohort — Leora I. Horwitz et al.
"Our findings corroborate prior survey studies suggesting that SARS-CoV-2 is associated with persistent olfactory dysfunction and confirm small prior objective studies finding that patients underestimate their smell loss. The reason for underestimation is uncertain. It is possible that cognitive deficits could contribute to decreased awareness of sensory changes."
Article | Thread
When We Don’t Have All the Answers: Long COVID and the Need for Humility in Medicine — Liza Di Leo Thomas
Editorial. "In the hope of returning their lives to their pre-illness state, most patients research their own conditions. As physicians, we must accept that these patients may know more than we do about their condition. This idea can be difficult to accept because we are supposed to be the experts, the ones who can advise patients on the best tests and the best possible management of their conditions."
Article | Thread
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