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
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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.
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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 |
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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."
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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."
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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."
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