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