News in Brief - December 2025
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Week beginning 1st December 2025
Research news and commentary
Solve ME/CFS Initiative
Solve has a new interview with Prof. Chris Ponting from the University of Edinburgh, who was the lead for the biggest genetics study on ME/CFS: DecodeME.
Video | Thread
Canada - Simon Fraser University (SFU) National survey finds virtual health ‘essential’ for Long COVID support
A national survery conducted by SFU Faculty of Health Sciences has found that virtual healthcare services are essential for Long Covid patients. Post-exertional malaise is cited as an important reason these services are needed.
Article | Thread
Trial by Error by David Tuller Journalist Simon Spichak on Lack of Focus on Post-Exertional Malaise in Long COVID Exercise Trials
An interview with Simon Spichak who recently wrote for The Sick Times about the large amount of exercise trials not taking PEM into consideration at all.
Interview l Thread
..................
Articles
Goodreads book review Rebecca's review: A damning one star review of Robert Galbraith (JK Rowling) book, The Ink Black Heart, which includes two characters with ME/CFS "presented through deeply harmful stereotypes... a whiny, manipulative liar or illness-faker... and an emotionally abusive patriarch..." "What is most painful is that Rowling clearly knows people with ME. She has seen these symptoms in real life, yet chooses not to believe them."
Review | Thread
USA Today Chronic fatigue syndrome drains millions of people, and still defies easy answers
An introductory article which uses the term CFS instead ME/CFS (ME gets a brief mention). Post-exertional malaise is mentioned but the overall tone is how the illness can be managed without explaining how severe and disabling it can be.
Article | Thread
...........
Coming events
December
UK Welsh Senedd Debate on Severe and Very Severe ME 10th December.
Thread
UK APPG on ME Revises agenda for Dec 10th meeting
The APPG on ME has revised its agenda to focus the upcoming meeting on addressing insufficient ME research investment and the lack of specialist services for severe ME, while postponing the severe ME evidence inquiry until their January session.
Website | Thread
UK Webinars App company ELAROS is hosting three webinars to launch new products. The webinars are for both professionals and the public.
ME Association Clinical Assessment Toolkit - 9th December at 15:00 GMT
ME Association App - 10th December at 15:00 GMT
C19-YRS Long Covid app to the public - 11th December at 15:00 GMT
The webinars are free, up to 250 places can be booked, recordings on request for those who cannot attend.
Thread
Bateman Horne Center - Free Online Support Groups
Tuesday, December 9, 1:00 - 2:00 PM Mountain Time
Managing the Holidays with Chronic Illness-Solutions and Strategies
Tuesday, December 16, 1:00 - 2:00 PM Mountain Time
Freedom from Thinking Traps Amidst Chronic Disease
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
January
Webinar: PRIME Workshop How AI/ML methods can enhance ME/CFS molecular or genetic biomarker discovery, Jan 21, 2026, 02:00 to 05:00 PM (GMT)
"The aim of this workshop is to present state-of-the-art quantitative methodologies that have been, or could be, applied in the context of ME/CFS and LC to motivate and empower researchers to take on and apply promising techniques in their own work in this area." Recording of the event will be made available afterwards.
Registration | Thread
..........
Research
ME/CFS research
Exploring a genetic basis for the metabolic perturbations in ME/CFS using UK Biobank — Huang et al.
"These findings provide a genetic and molecular rationale for patient heterogeneity and suggest a polygenic predisposition in which many small-effect variants may jointly perturb metabolic mechanisms."
Article | Thread
Identification of Novel Reproducible Combinatorial Genetic Risk Factors for Myalgic Encephalomyelitis in the DecodeME Patient Cohort and Commonalities with Long COVID — JM Sardell et al.
"These findings provide further evidence that ME is a complex multisystemic condition where the risk of developing the disease has a very clear genetic and biological basis." "The discovery of so many multiply reproducible genetic associations implies that ME is highly polygenic, which has important consequences for its future study"
Preprint | Thread
Long Covid research
Integrative multi-omics framework for causal gene discovery in long COVID — Pinero et al.
"Most of the 32 genes are not strongly associated with individual symptoms when tested individually (AR is the only exception). However, their joint expression pattern reliably distinguishes patient subgroups, consistent with post-viral biology, in which pathway-level (not single-gene) dysregulation dominates."
Article | Thread
Systems Immunology of Long Covid: Insights from the STOP-PASC Clinical Trial — Evan Maestri et al.
"Despite considerable heterogeneity in LC, we have demonstrated via multicohort meta-analysis conserved dysregulation in inflammatory immune pathways. The proteins in the LCS Score which are consistently elevated in LC in multiple cohorts are associated with inflammation (IL6), monocyte (SIGLEC1/10) and neutrophil activation/granules (AZU1, PGLYRP1), and T/NK cell granzymes (GZMH, GZMA) suggesting a persistent dysregulated immune response."
Preprint | Thread
Altered brain tissue microstructure and neurochemical profiles in long COVID and recovered COVID-19 individuals: A multimodal MRI study — Thapaliya et al.
"Our study identified altered signal intensity, abnormal tissue microstructure, and imbalanced neurochemicals in long COVID and COVID-19 recovered healthy controls. Importantly, we also found a significant association between T1w/T2w signal intensity and clinical measures, suggesting a potential link between myelin content and symptom severity."
Article | Thread
Brain MRI findings in patients with post COVID-19 condition: frequency and longitudinal changes in a nationwide cohort study — Furevik et al.
"A clinico-radiological gap exists between prevalent neurological and cognitive complaints and brain findings identified through standard imaging techniques. Advanced, quantitative neuroimaging analyses—not yet established in clinical practice—show potential for detecting subtle neuronal changes"
Article | Thread
Structural brain abnormalities and neuropsychiatric symptoms in post-COVID condition — Meghann Ryan et al.
"Structural brain abnormalities, with thicker cortices and larger volumes and surface areas, suggest compensatory processes such as enhanced myelination and neurogenesis rather than neuroinflammation" "these brain abnormalities and neurobehavioral symptoms tended to improve three years after infection."
Article | Thread
Association of foveal avascular zone (FAZ) enlargement with SARS-CoV-2 infection and long COVID-19 — Spielmann et al.
"In our study, a significantly increased FAZ was shown for the group of patients with fatigue compared to the patients with no fatigue and to the control group."
Article | Thread
Robust antibody and T cell responses tracked longitudinally in patients with long COVID — Marina Metaxaki et al.
"Our findings demonstrate that long COVID patients maintain a robust functional immune status with no evidence of immune deficiency based on clinical symptomatology and immune molecular assessment."
Article | Thread
The lingering shadow of epidemics: post-acute sequelae across history — Christine M. Miller et al.
"Investing in PAIS research is critical to understand underlying host factors that may predispose to longterm sequelae, improve treatment options for these devastating conditions, as well as provide a comprehensive understanding of human health and disease."
Article | Thread
Feasibility of predicting next-day fatigue levels using heart rate variability and activity-sleep metrics in people with post-COVID fatigue — Aboagye et al.
"This pilot study has demonstrated the feasibility of using machine learning approaches to predict next-day fatigue levels in individuals with post-COVID fatigue based on objective physiological and behavioral metrics from wearable devices."
Article | Thread
Work ability trajectories and sick leave in individuals with post COVID-19 condition: 3-year follow-up of a population-based cohort — Tala Ballouz et al.
"While some improvements were observed among those with moderate health impairment, persistently low work ability among those with severe health impairment point to a subgroup of people who are at a risk of experiencing longer-term occupational limitations."
Article | Thread
Health outcomes in hospitalised and non-hospitalised individuals after COVID-19, an observational, cross-sectional study — Nygren-Bonnier et al.
"Both groups were represented among those with more severe residual impairments and complex symptom panorama, but non-hospitalised patients had a higher proportion of cardiovascular dysautonomia, particularly POTS."
Article | Thread
Excess mortality at ages 20–64 from 2020 to 2024: a comparative analysis of 16 European countries — Gianfranco Alicandro et al.
"excess mortality among the population aged 20–64 years was substantial and heterogeneous across Europe in 2020–2021. In the following years, point estimates and their associated uncertainty became highly sensitive to modelling choices" "our analysis highlights the importance of considering multiple scenarios when projecting expected mortality, and that a persisting declining assumption cannot be assumed for all age groups and countries."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Research news and commentary
Solve ME/CFS Initiative
Solve has a new interview with Prof. Chris Ponting from the University of Edinburgh, who was the lead for the biggest genetics study on ME/CFS: DecodeME.
Video | Thread
Canada - Simon Fraser University (SFU) National survey finds virtual health ‘essential’ for Long COVID support
A national survery conducted by SFU Faculty of Health Sciences has found that virtual healthcare services are essential for Long Covid patients. Post-exertional malaise is cited as an important reason these services are needed.
Article | Thread
Trial by Error by David Tuller Journalist Simon Spichak on Lack of Focus on Post-Exertional Malaise in Long COVID Exercise Trials
An interview with Simon Spichak who recently wrote for The Sick Times about the large amount of exercise trials not taking PEM into consideration at all.
Interview l Thread
..................
Articles
Goodreads book review Rebecca's review: A damning one star review of Robert Galbraith (JK Rowling) book, The Ink Black Heart, which includes two characters with ME/CFS "presented through deeply harmful stereotypes... a whiny, manipulative liar or illness-faker... and an emotionally abusive patriarch..." "What is most painful is that Rowling clearly knows people with ME. She has seen these symptoms in real life, yet chooses not to believe them."
Review | Thread
USA Today Chronic fatigue syndrome drains millions of people, and still defies easy answers
An introductory article which uses the term CFS instead ME/CFS (ME gets a brief mention). Post-exertional malaise is mentioned but the overall tone is how the illness can be managed without explaining how severe and disabling it can be.
Article | Thread
...........
Coming events
December
UK Welsh Senedd Debate on Severe and Very Severe ME 10th December.
Thread
UK APPG on ME Revises agenda for Dec 10th meeting
The APPG on ME has revised its agenda to focus the upcoming meeting on addressing insufficient ME research investment and the lack of specialist services for severe ME, while postponing the severe ME evidence inquiry until their January session.
Website | Thread
UK Webinars App company ELAROS is hosting three webinars to launch new products. The webinars are for both professionals and the public.
ME Association Clinical Assessment Toolkit - 9th December at 15:00 GMT
ME Association App - 10th December at 15:00 GMT
C19-YRS Long Covid app to the public - 11th December at 15:00 GMT
The webinars are free, up to 250 places can be booked, recordings on request for those who cannot attend.
Thread
Bateman Horne Center - Free Online Support Groups
Tuesday, December 9, 1:00 - 2:00 PM Mountain Time
Managing the Holidays with Chronic Illness-Solutions and Strategies
Tuesday, December 16, 1:00 - 2:00 PM Mountain Time
Freedom from Thinking Traps Amidst Chronic Disease
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
January
Webinar: PRIME Workshop How AI/ML methods can enhance ME/CFS molecular or genetic biomarker discovery, Jan 21, 2026, 02:00 to 05:00 PM (GMT)
"The aim of this workshop is to present state-of-the-art quantitative methodologies that have been, or could be, applied in the context of ME/CFS and LC to motivate and empower researchers to take on and apply promising techniques in their own work in this area." Recording of the event will be made available afterwards.
Registration | Thread
..........
Research
ME/CFS research
Exploring a genetic basis for the metabolic perturbations in ME/CFS using UK Biobank — Huang et al.
"These findings provide a genetic and molecular rationale for patient heterogeneity and suggest a polygenic predisposition in which many small-effect variants may jointly perturb metabolic mechanisms."
Article | Thread
Identification of Novel Reproducible Combinatorial Genetic Risk Factors for Myalgic Encephalomyelitis in the DecodeME Patient Cohort and Commonalities with Long COVID — JM Sardell et al.
"These findings provide further evidence that ME is a complex multisystemic condition where the risk of developing the disease has a very clear genetic and biological basis." "The discovery of so many multiply reproducible genetic associations implies that ME is highly polygenic, which has important consequences for its future study"
Preprint | Thread
Long Covid research
Integrative multi-omics framework for causal gene discovery in long COVID — Pinero et al.
"Most of the 32 genes are not strongly associated with individual symptoms when tested individually (AR is the only exception). However, their joint expression pattern reliably distinguishes patient subgroups, consistent with post-viral biology, in which pathway-level (not single-gene) dysregulation dominates."
Article | Thread
Systems Immunology of Long Covid: Insights from the STOP-PASC Clinical Trial — Evan Maestri et al.
"Despite considerable heterogeneity in LC, we have demonstrated via multicohort meta-analysis conserved dysregulation in inflammatory immune pathways. The proteins in the LCS Score which are consistently elevated in LC in multiple cohorts are associated with inflammation (IL6), monocyte (SIGLEC1/10) and neutrophil activation/granules (AZU1, PGLYRP1), and T/NK cell granzymes (GZMH, GZMA) suggesting a persistent dysregulated immune response."
Preprint | Thread
Altered brain tissue microstructure and neurochemical profiles in long COVID and recovered COVID-19 individuals: A multimodal MRI study — Thapaliya et al.
"Our study identified altered signal intensity, abnormal tissue microstructure, and imbalanced neurochemicals in long COVID and COVID-19 recovered healthy controls. Importantly, we also found a significant association between T1w/T2w signal intensity and clinical measures, suggesting a potential link between myelin content and symptom severity."
Article | Thread
Brain MRI findings in patients with post COVID-19 condition: frequency and longitudinal changes in a nationwide cohort study — Furevik et al.
"A clinico-radiological gap exists between prevalent neurological and cognitive complaints and brain findings identified through standard imaging techniques. Advanced, quantitative neuroimaging analyses—not yet established in clinical practice—show potential for detecting subtle neuronal changes"
Article | Thread
Structural brain abnormalities and neuropsychiatric symptoms in post-COVID condition — Meghann Ryan et al.
"Structural brain abnormalities, with thicker cortices and larger volumes and surface areas, suggest compensatory processes such as enhanced myelination and neurogenesis rather than neuroinflammation" "these brain abnormalities and neurobehavioral symptoms tended to improve three years after infection."
Article | Thread
Association of foveal avascular zone (FAZ) enlargement with SARS-CoV-2 infection and long COVID-19 — Spielmann et al.
"In our study, a significantly increased FAZ was shown for the group of patients with fatigue compared to the patients with no fatigue and to the control group."
Article | Thread
Robust antibody and T cell responses tracked longitudinally in patients with long COVID — Marina Metaxaki et al.
"Our findings demonstrate that long COVID patients maintain a robust functional immune status with no evidence of immune deficiency based on clinical symptomatology and immune molecular assessment."
Article | Thread
The lingering shadow of epidemics: post-acute sequelae across history — Christine M. Miller et al.
"Investing in PAIS research is critical to understand underlying host factors that may predispose to longterm sequelae, improve treatment options for these devastating conditions, as well as provide a comprehensive understanding of human health and disease."
Article | Thread
Feasibility of predicting next-day fatigue levels using heart rate variability and activity-sleep metrics in people with post-COVID fatigue — Aboagye et al.
"This pilot study has demonstrated the feasibility of using machine learning approaches to predict next-day fatigue levels in individuals with post-COVID fatigue based on objective physiological and behavioral metrics from wearable devices."
Article | Thread
Work ability trajectories and sick leave in individuals with post COVID-19 condition: 3-year follow-up of a population-based cohort — Tala Ballouz et al.
"While some improvements were observed among those with moderate health impairment, persistently low work ability among those with severe health impairment point to a subgroup of people who are at a risk of experiencing longer-term occupational limitations."
Article | Thread
Health outcomes in hospitalised and non-hospitalised individuals after COVID-19, an observational, cross-sectional study — Nygren-Bonnier et al.
"Both groups were represented among those with more severe residual impairments and complex symptom panorama, but non-hospitalised patients had a higher proportion of cardiovascular dysautonomia, particularly POTS."
Article | Thread
Excess mortality at ages 20–64 from 2020 to 2024: a comparative analysis of 16 European countries — Gianfranco Alicandro et al.
"excess mortality among the population aged 20–64 years was substantial and heterogeneous across Europe in 2020–2021. In the following years, point estimates and their associated uncertainty became highly sensitive to modelling choices" "our analysis highlights the importance of considering multiple scenarios when projecting expected mortality, and that a persisting declining assumption cannot be assumed for all age groups and countries."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 8th December 2025
News and articles
Science for ME Fact Sheet 3: ME/CFS Information for Medical Professionals
by Prof. Jonathan Edwards and members of the S4ME forum. The seven page fact sheet covers definition, diagnosis, core and additional features, management, support, and the particular needs of people with severe and very severe ME/CFS.
"... recognition of ME/CFS as a valid clinical/biological entity and committed interest from research scientists provide hope that progress in both biology and treatment will be made in the near future. In the meantime, ensuring general supportive care to make life more tolerable and minimise unnecessary harm is an essential need that is still seldom met."
Fact sheet pdf | Thread
Nature Long-COVID research just got a big funding boost: will it find new treatments?
"In a major boost to research on long COVID and chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), the German government has announced that it will provide €500 million (US$582 million) in research funding to support a National Decade Against Post-Infectious Diseases from 2026 to 2036."
Article (Paywalled) l Thread
Wales parliament The motion proposed in this week's Senedd debate highlighted the need for specialist services for people with severe and very severe ME/CFS as well as research and medical education.
Transcript | ME Research UK article | Thread
#MEAction UK and #MEAction Scotland have together registered as a charity.
"... now #MEAction UK and #MEAction Scotland will be able to raise UK-specific funds and grow in a bigger, more concentrated way."
Article | Charity registration | Thread
UK The ME Association – Governance Review Update and Divisional Structure proposal – Stage 2 Announcement Winter 2025
"The Trustees of the MEA are proposing a new corporate structure organised into strategic Divisions. These Divisions align directly with the charity’s core strategic functions: Support, Educate & Influence, Research, Finance & Operations, Income.
Each Division will be overseen by a designated Champion/Lead."
They say they cannot afford to appoint a CEO, roles will be advertised internally.
Article | Thread
Anil van der Zee
In a new blog post, Anil criticises a new article about Post-acute infectious syndromes (PAIS) in the The Dutch Journal of Medicine ('Nederlands Tijdschrift voor Geneeskunde', or NTvG) for not mentioning ME/CFS.
Article | Thread
............
Coming events
Solve ME Webinar – From Mystery to Measurable: The Science Behind the New ME/CFS Blood Test
Discussion of the new blood-based assay, the EpiSwitch CFS test, and its potential impact on diagnosing and treating people with ME/CFS and Long Covid.
Thursday, January 15, 9 AM Pacific Time.
Announcement | Registration | Thread
............
Advocacy
Petition Call for Funding a New Clinical Study on Daratumumab for ME/CFS
A petition created by patients to encourage the Norwegian government to fund the clinical study ResetME, on Daratumumab as a potential treatment for ME/CFS. The study has begun, but is still not fully funded. Anyone can sign the petition.
Petition l Thread
............
Research news and commentary
UK - Imperial College London: The Rosetta Stone study £1.1m awarded to investigate links between ME/CFS and Long Covid
"A new landmark study funded by The ME Association will help scientists to uncover shared pathways between ME/CFS and Long Covid." The 3 year study led by Professors Danny Altman and Rosemary Boyton.
Imperial article | MEA article | Thread
Trial by Error by David Tuller In Protocol for Long COVID Exercise Trial, Investigators Advocate Lying to Participants
"Researchers are planning yet another trial of a rehabilitative exercise program for Long COVID—but, in this one, they propose to lie to all the participants about the nature of the study and the intervention being investigated."
Article l Thread
...............
Research
ME/CFS research
Abnormal T-Cell activation and cytotoxic T-Cell frequency discriminate symptom severity in myalgic encephalomyelitis/chronic fatigue syndrome — Lee et al.
"In this study we have demonstrated clear differences exist in immune cells in people with mild/moderate compared with severe ME/CFS, and that these differences remain over years of longitudinal sampling."
Article | Thread
Distinct white matter alteration patterns in post-infectious and gradual onset chronic fatigue syndrome revealed by diffusion MRI — Yu et al.
"findings highlight distinct patterns of axial diffusivity (AD) changes in these subgroups, with PI-ME/CFS patients exhibiting increased AD in various association and projection fibres and GO-ME/CFS patients showing decreased AD in commissural fibres."
Article | Thread
Alterations in gut microbiota and associated metabolites in patients with chronic fatigue syndrome — Cheng et al.
"This study, utilizing 16S rRNA gene sequencing and gas chromatography–mass spectrometry, confirmed the presence of structural dysbiosis in the gut microbiota and metabolic disturbances in short-chain fatty acids in patients with chronic fatigue syndrome."
Article | Thread
Comparable Immune Alterations and Inflammatory Signatures in ME/CFS and Long COVID — Petrov et al.
Article | Thread
The origin of autoimmune diseases: is there a role for ancestral HLA-II haplotypes in immune hyperactivity — Ruiz-Pablos et al.
"This same mechanism could extend beyond classical autoimmune diseases (such as multiple sclerosis, rheumatoid arthritis, lupus, celiac disease or type 1 diabetes) and might explain increased susceptibility to conditions characterized by systemic inflammation and immune dysregulation, such as long COVID, myalgic encephalomyelitis/chronic fatigue syndrome and certain post-vaccination syndromes."
Article | Thread
Shame, (In)visibility, and Ill Feelings — Katharine Cheston
"I investigate how diagnostic labels employed in these contexts render suffering and sufferers (in)visible, and illuminate how fusing genres offers Hattrick a particular form of (controlled) visibility. Finally, I consider the implications of this analysis for our broader understanding of shame, and for our approach to literary life writing."
Article | Thread
Long Covid research
Long COVID involves activation of proinflammatory and immune exhaustion pathways — Aid et al.
"participants with LC exhibited reduced granzyme B and cytotoxic T cell signaling and increased immune exhaustion, suggesting dysregulated cross-talk between the innate and adaptive immune responses" "We also found that chronic upregulation of IFNγ signaling was associated with LC and correlated with signatures of reduced T cell activation and increased T cell exhaustion, suggesting that chronic immune stimulation may lead to functional impairment of T cells."
Article | Thread
Exaggerated IFN-I Response in Long COVID PBMCs Following Exposure to Viral Mimics — Humer et al.
"our data indicate that PBMCs from LC patients exhibit an hyperresponsive IFN-I response following activation by viral mimics that trigger RIG-I and cGAS. The exact underlying mechanism that drives this requires further investigation"
Article | Thread
Omics-based computational approaches for biomarker identification, prediction, and treatment of Long COVID — Sindy Pinero et al.
"several biological findings demonstrate remarkable consistency across independent cohorts and platforms. Complement cascade dysregulation, particularly involving the C1Q, C3, and C5 components, appears to be reproducible across proteomic studies using various quantification methods. Mitochondrial dysfunction and altered cellular bioenergetics consistently emerge in metabolomic investigations, regardless of the platform or statistical approach."
Article | Thread
Blood pro-thrombotic analytes and platelet activation are associated with post-acute sequelae of COVID-19 — Whitcomb et al.
"Among patients with active PASC, a distinct proteomic profile emerged which was characterized by persistent elevation of inflammatory markers and tissue remodeling proteins irrespective of initial disease severity. Pathway enrichment analyses identified neutrophil degranulation, platelet activation, and extracellular matrix remodeling as central processes, suggesting that unresolved inflammation and chronic vascular damage may also underlie the development of long-term sequelae."
Article | Thread
Inflammation from mild COVID-19 results in persistent neurological and behavioral changes in rhesus macaques — Tomas R Wiche Salinas et al.
"the measurable neurocognitive changes were associated with systemic and nervous system perturbations, indicating a link between infection-induced inflammation and long-term neurological and behavioral outcomes."
Preprint | Thread
SARS-CoV-2 spike protein causes synaptic dysfunction and p-tau and α-synuclein aggregation leading cognitive impairment: The protective role of metformin — Hye-Kyung Lee et al.
Rodent study. "S1 treatment led to a marked decrease in the expression of GRIN2A, JPH3, SHANK1, and GRIA2, whereas concurrent metformin treatment restored these levels to control values, suggesting a protective effect against S1-induced synaptic alterations."
Article | Thread
Interrogating pulmonary diffusing capacity in long COVID: insights from DLCO and DLNO testing — Parks et al.
"between group analysis revealed that only in females, not in males, was DLNO and Vc significantly lower in those with LC"
Article | Thread
Association of Autonomic Dysfunction With Long COVID: Evaluation Using Quantitative Autonomic Testing — Ciana Keller et al.
"When adjusted for age and sex, patients with long COVID may demonstrate persistent autonomic dysfunction that is similar to patients with pure autonomic failure."
Article | Thread
Patterns of long COVID symptoms among healthcare workers in the UK and variations by sociodemographic, clinical and occupational factors: a cross-sectional analysis of a nationwide study (UK-REACH) — Amani Al-Oraibi et al.
"The gender disparities observed in the study, with female HCWs being disproportionately affected by neurocognitive, neurologic and gastrointestinal symptoms […] could be attributable to sex-based differences in immune responses and hormonal influences, which may affect symptom manifestation, differences in reporting and recovery."
Article | Thread
Occupational determinants of Long COVID in the population-based COVICAT cohort — Sara De Matteis et al.
Prospective study. "Among 2054 workers (1308 women, 746 men) aged 40–69 years, 486 developed LC (23.7%)." "The main drivers of increased risk were close contact with colleagues and the public […], no social distance at workplace […], rare or no use of facemask […] and commute by public transport"
Article | Thread
Rehabilitation providers’ experiences with long COVID care in Canada: a qualitative study — Jaylyn Leighton et al.
"A key challenge expressed by Rehabilitation Providers in this study was the fragmented approach to Long COVID care, which put them into positions to go beyond their scope of practice to ensure that PWLC received comprehensive support"
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
News and articles
Science for ME Fact Sheet 3: ME/CFS Information for Medical Professionals
by Prof. Jonathan Edwards and members of the S4ME forum. The seven page fact sheet covers definition, diagnosis, core and additional features, management, support, and the particular needs of people with severe and very severe ME/CFS.
"... recognition of ME/CFS as a valid clinical/biological entity and committed interest from research scientists provide hope that progress in both biology and treatment will be made in the near future. In the meantime, ensuring general supportive care to make life more tolerable and minimise unnecessary harm is an essential need that is still seldom met."
Fact sheet pdf | Thread
Nature Long-COVID research just got a big funding boost: will it find new treatments?
"In a major boost to research on long COVID and chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), the German government has announced that it will provide €500 million (US$582 million) in research funding to support a National Decade Against Post-Infectious Diseases from 2026 to 2036."
Article (Paywalled) l Thread
Wales parliament The motion proposed in this week's Senedd debate highlighted the need for specialist services for people with severe and very severe ME/CFS as well as research and medical education.
Transcript | ME Research UK article | Thread
#MEAction UK and #MEAction Scotland have together registered as a charity.
"... now #MEAction UK and #MEAction Scotland will be able to raise UK-specific funds and grow in a bigger, more concentrated way."
Article | Charity registration | Thread
UK The ME Association – Governance Review Update and Divisional Structure proposal – Stage 2 Announcement Winter 2025
"The Trustees of the MEA are proposing a new corporate structure organised into strategic Divisions. These Divisions align directly with the charity’s core strategic functions: Support, Educate & Influence, Research, Finance & Operations, Income.
Each Division will be overseen by a designated Champion/Lead."
They say they cannot afford to appoint a CEO, roles will be advertised internally.
Article | Thread
Anil van der Zee
In a new blog post, Anil criticises a new article about Post-acute infectious syndromes (PAIS) in the The Dutch Journal of Medicine ('Nederlands Tijdschrift voor Geneeskunde', or NTvG) for not mentioning ME/CFS.
Article | Thread
............
Coming events
Solve ME Webinar – From Mystery to Measurable: The Science Behind the New ME/CFS Blood Test
Discussion of the new blood-based assay, the EpiSwitch CFS test, and its potential impact on diagnosing and treating people with ME/CFS and Long Covid.
Thursday, January 15, 9 AM Pacific Time.
Announcement | Registration | Thread
............
Advocacy
Petition Call for Funding a New Clinical Study on Daratumumab for ME/CFS
A petition created by patients to encourage the Norwegian government to fund the clinical study ResetME, on Daratumumab as a potential treatment for ME/CFS. The study has begun, but is still not fully funded. Anyone can sign the petition.
Petition l Thread
............
Research news and commentary
UK - Imperial College London: The Rosetta Stone study £1.1m awarded to investigate links between ME/CFS and Long Covid
"A new landmark study funded by The ME Association will help scientists to uncover shared pathways between ME/CFS and Long Covid." The 3 year study led by Professors Danny Altman and Rosemary Boyton.
Imperial article | MEA article | Thread
Trial by Error by David Tuller In Protocol for Long COVID Exercise Trial, Investigators Advocate Lying to Participants
"Researchers are planning yet another trial of a rehabilitative exercise program for Long COVID—but, in this one, they propose to lie to all the participants about the nature of the study and the intervention being investigated."
Article l Thread
...............
Research
ME/CFS research
Abnormal T-Cell activation and cytotoxic T-Cell frequency discriminate symptom severity in myalgic encephalomyelitis/chronic fatigue syndrome — Lee et al.
"In this study we have demonstrated clear differences exist in immune cells in people with mild/moderate compared with severe ME/CFS, and that these differences remain over years of longitudinal sampling."
Article | Thread
Distinct white matter alteration patterns in post-infectious and gradual onset chronic fatigue syndrome revealed by diffusion MRI — Yu et al.
"findings highlight distinct patterns of axial diffusivity (AD) changes in these subgroups, with PI-ME/CFS patients exhibiting increased AD in various association and projection fibres and GO-ME/CFS patients showing decreased AD in commissural fibres."
Article | Thread
Alterations in gut microbiota and associated metabolites in patients with chronic fatigue syndrome — Cheng et al.
"This study, utilizing 16S rRNA gene sequencing and gas chromatography–mass spectrometry, confirmed the presence of structural dysbiosis in the gut microbiota and metabolic disturbances in short-chain fatty acids in patients with chronic fatigue syndrome."
Article | Thread
Comparable Immune Alterations and Inflammatory Signatures in ME/CFS and Long COVID — Petrov et al.
Article | Thread
The origin of autoimmune diseases: is there a role for ancestral HLA-II haplotypes in immune hyperactivity — Ruiz-Pablos et al.
"This same mechanism could extend beyond classical autoimmune diseases (such as multiple sclerosis, rheumatoid arthritis, lupus, celiac disease or type 1 diabetes) and might explain increased susceptibility to conditions characterized by systemic inflammation and immune dysregulation, such as long COVID, myalgic encephalomyelitis/chronic fatigue syndrome and certain post-vaccination syndromes."
Article | Thread
Shame, (In)visibility, and Ill Feelings — Katharine Cheston
"I investigate how diagnostic labels employed in these contexts render suffering and sufferers (in)visible, and illuminate how fusing genres offers Hattrick a particular form of (controlled) visibility. Finally, I consider the implications of this analysis for our broader understanding of shame, and for our approach to literary life writing."
Article | Thread
Long Covid research
Long COVID involves activation of proinflammatory and immune exhaustion pathways — Aid et al.
"participants with LC exhibited reduced granzyme B and cytotoxic T cell signaling and increased immune exhaustion, suggesting dysregulated cross-talk between the innate and adaptive immune responses" "We also found that chronic upregulation of IFNγ signaling was associated with LC and correlated with signatures of reduced T cell activation and increased T cell exhaustion, suggesting that chronic immune stimulation may lead to functional impairment of T cells."
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Exaggerated IFN-I Response in Long COVID PBMCs Following Exposure to Viral Mimics — Humer et al.
"our data indicate that PBMCs from LC patients exhibit an hyperresponsive IFN-I response following activation by viral mimics that trigger RIG-I and cGAS. The exact underlying mechanism that drives this requires further investigation"
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Omics-based computational approaches for biomarker identification, prediction, and treatment of Long COVID — Sindy Pinero et al.
"several biological findings demonstrate remarkable consistency across independent cohorts and platforms. Complement cascade dysregulation, particularly involving the C1Q, C3, and C5 components, appears to be reproducible across proteomic studies using various quantification methods. Mitochondrial dysfunction and altered cellular bioenergetics consistently emerge in metabolomic investigations, regardless of the platform or statistical approach."
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Blood pro-thrombotic analytes and platelet activation are associated with post-acute sequelae of COVID-19 — Whitcomb et al.
"Among patients with active PASC, a distinct proteomic profile emerged which was characterized by persistent elevation of inflammatory markers and tissue remodeling proteins irrespective of initial disease severity. Pathway enrichment analyses identified neutrophil degranulation, platelet activation, and extracellular matrix remodeling as central processes, suggesting that unresolved inflammation and chronic vascular damage may also underlie the development of long-term sequelae."
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Inflammation from mild COVID-19 results in persistent neurological and behavioral changes in rhesus macaques — Tomas R Wiche Salinas et al.
"the measurable neurocognitive changes were associated with systemic and nervous system perturbations, indicating a link between infection-induced inflammation and long-term neurological and behavioral outcomes."
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SARS-CoV-2 spike protein causes synaptic dysfunction and p-tau and α-synuclein aggregation leading cognitive impairment: The protective role of metformin — Hye-Kyung Lee et al.
Rodent study. "S1 treatment led to a marked decrease in the expression of GRIN2A, JPH3, SHANK1, and GRIA2, whereas concurrent metformin treatment restored these levels to control values, suggesting a protective effect against S1-induced synaptic alterations."
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Interrogating pulmonary diffusing capacity in long COVID: insights from DLCO and DLNO testing — Parks et al.
"between group analysis revealed that only in females, not in males, was DLNO and Vc significantly lower in those with LC"
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Association of Autonomic Dysfunction With Long COVID: Evaluation Using Quantitative Autonomic Testing — Ciana Keller et al.
"When adjusted for age and sex, patients with long COVID may demonstrate persistent autonomic dysfunction that is similar to patients with pure autonomic failure."
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Patterns of long COVID symptoms among healthcare workers in the UK and variations by sociodemographic, clinical and occupational factors: a cross-sectional analysis of a nationwide study (UK-REACH) — Amani Al-Oraibi et al.
"The gender disparities observed in the study, with female HCWs being disproportionately affected by neurocognitive, neurologic and gastrointestinal symptoms […] could be attributable to sex-based differences in immune responses and hormonal influences, which may affect symptom manifestation, differences in reporting and recovery."
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Occupational determinants of Long COVID in the population-based COVICAT cohort — Sara De Matteis et al.
Prospective study. "Among 2054 workers (1308 women, 746 men) aged 40–69 years, 486 developed LC (23.7%)." "The main drivers of increased risk were close contact with colleagues and the public […], no social distance at workplace […], rare or no use of facemask […] and commute by public transport"
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Rehabilitation providers’ experiences with long COVID care in Canada: a qualitative study — Jaylyn Leighton et al.
"A key challenge expressed by Rehabilitation Providers in this study was the fragmented approach to Long COVID care, which put them into positions to go beyond their scope of practice to ensure that PWLC received comprehensive support"
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