News in Brief - February 2025

This thread has a Science for ME 'News in Brief' post for each week in February 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.

 

Week beginning 3rd February 2025

News, advocacy and articles

Sweden The current guidelines for post covid and other infectious related illnesses (including ME/CFS) has received a lot of criticism, among other for promoting GET. The Swedish Government has now asked The National Board of Health and Welfare and the Swedish Agency for Health Technology Assessment and Assessment of Social Services to produce new knowledge about Long Covid and to get an overview of the care of children with LC.
Thread with more information

UK #ThereForME Exploring the barriers that impact access to NHS care for people with ME and Long Covid - Karen Hargrave
A short article highlighting problems people with ME/CFS have accessing suitable NHS care. Posted on the Patient Safety Learning website, with opportunity for people to join and add their experiences.
Article | Thread
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More on Cochrane's actions (see December and January news)

The Sick Times "Really pissed off": Cochrane receives backlash from advocates and experts after abandoning ME/CFS review
Great article by David Tuller with a longer recap of the Cochrane saga. Two members of the writing team that was appointed by Cochrane to update the review provide comments:
Todd Davenport: "This experience has really showed me the extent of the political games behind this supposedly objective process of trying to synthesize studies"
Mary Dimmock: "We put a lot of work into doing this in good faith, and they just pulled it with no consideration for the patients"
Tuller concludes: ".. it appears that Cochrane’s actions are, from its perspective, irreversible. But unless it acts quickly to clean up this mess, the long-term damage to its reputation could be irreversible as well."
Article l Thread

Science for ME Complaints about republishing an outdated and flawed review as if it were a new review, and the failure to withdraw it
Trish Davis and Maree Candish, on behalf of the Science for ME committee, have submitted a detailed set of five complaints with supporting evidence. The submission concludes:
"We find these actions by Cochrane so clearly indefensible and the arguments so illogical that we can only conclude that senior editors and Trustees have given in to pressure from proponents of exercise therapy for ME/CFS. We ask Cochrane to take the following actions in order to restore its credibility and avoid further harm to patients."
Actions requested include removal of the 2024 version; an editorial note saying the review is outdated and should not be used for clinical care; standing firm against pressure from exercise proponents with vested interests; and re-opening the decision not to withdraw the 2019 review.
Complaint | Discussion thread

Trial by Error by David Tuller Professor Edwards' Letter to BMJ on the Cochrane Mess
A short recap of the latest developments concerning Cochrane's decision to abandon its update of their review on exercise therapy for ME/CFS. Also a repost of Jonathan Edwards' letter to BMJ about the same issue.
Article l Thread
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Resources

The Swedish Covid Association has made a guide for researchers including how to design studies for patients with PEM. They also have a guide/checklist for people who want to participate in studies.
Guide for researchers l Guide for participants l Thread
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Research

ME/CFS research

International Journal of Molecular Sciences
Exertional Exhaustion (Post-Exertional Malaise, PEM) Evaluated by the Effects of Exercise on Cerebrospinal Fluid Metabolomics–Lipidomics and Serine Pathway in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Baraniuk
"The elevation of serine in cerebrospinal fluid in ME/CFS was a key finding because of the many metabolic relationships that were uncovered." "Increased sphingomyelins and hexylceramides implicated brain white matter dysfunction" "Exercise led to consumption of lipids in ME/CFS and SC, but metabolites were consumed by ME/CFS and produced in SC."
Article | Thread

Journal of Translational Medicine
The search for a blood-based biomarker for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS): from biochemistry to electrophysiology — Clarke et al.
Review. "work in the identification of new markers, both biochemical and electrophysiological, offers hope for a better understanding of the ME/CFS pathophysiology and would provide measurable evidence for the ME/CFS diagnosis, helping to validate patients within the health professions and in wider society."
Article | Thread

Journal of the American Heart Association
Cerebral Blood Flow in Orthostatic Intolerance — Muhammad Shahzeb Khan et al.
Review. "Because of the poor sensitivity of diagnostic criteria relying on heart rate and BP such as that of POTS and OH, we recommend the incorporation of CBF monitoring as the core diagnostic criteria of cerebral autoregulatory abnormality."
Article | Thread

Fatigue: Biomedicine, Health & Behavior
Stellate Ganglion Block reduces symptoms of SARS-CoV-2-induced ME/CFS: A prospective cohort pilot study — Deborah L. Duricka and Luke D. Liu
"Symptoms of ME/CFS were reduced after treatment with SGBs in this small prospective cohort pilot study."
Article | Thread

OBM Neurobiology
Measuring Post-Exertional Malaise with DePaul Symptom Questionnaires: Challenges and Opportunities — Jason
"The objective of this article is to describe the challenges and opportunities of the PEM questions of the DePaul Symptom Questionnaires (DSQ)"
Article | Thread

Long Covid research

Preprint: MedRxiv
Reproducibility of Genetic Risk Factors Identified for Long COVID using Combinatorial Analysis Across US and UK Patient Cohorts with Diverse Ancestries — Jason Sardell et al.
"These findings redefine our understanding of long COVID by uncovering a broad spectrum of reproducible genetic signatures, laying the foundation for new diagnostic innovations and targeted therapies that have the potential to revolutionize care for millions suffering from this debilitating condition worldwide."
Article | Thread

BMJ Open Diabetes Research & Care
Association of glycemic control with Long COVID in patients with type 2 diabetes: findings from the National COVID Cohort Collaborative (N3C) — Soff et al.
"This study shows that in people with T2D, poorer glycemic control with HbA1c≥8% increases the risk of developing Long COVID after COVID- 19 infection, specifically with respiratory symptoms and brain fog."
Article | Thread

Clinical Infectious Diseases
Long-COVID incidence proportion in adults and children between 2020 and 2024 — Mandel et al.
"After accounting for potential background levels of long-COVID-like symptoms, excess incidence was estimated to be 1.4% in children and between 5-6% among adults." "Temporal patterns were consistent across networks, with peaks associated with introduction of new viral variants."
Article | Thread

Frontiers in Oncology
Prevalence and risk factors for long COVID among cancer patients: a systematic review and meta-analysis — Hongkun Xu et al.
"Nearly a quarter of cancer patients will experience long COVID after surviving from SARS-CoV-2 infection, and this would even last for 1 year or longer."
Article | Thread

JAMA Pediatrics
Long COVID Prevalence and Associated Activity Limitation in US Children — Nicole D. Ford et al.
"In 2023, approximately 1 014 000 (1.4%) of children had ever experienced PCC and an estimated 293 000 (0.4%) were currently experiencing PCC at time of interview."
Article | Thread

Biology Methods and Protocols
Association of cognitive deficits with sociodemographic characteristics among adults with post-COVID conditions: Findings from the United States household pulse survey — Wu and Liu
"This study based on a large cohort representative of the US adult population has found significant differences in the cognitive outcomes associated with COVID infections among various sociodemographic groups. Individuals who are older or highly educated are more vulnerable to cognitive deficits"
Article | Thread

Clinical Autonomic Research
Chronic autonomic symptom burden in long-COVID: a follow-up cohort study — Eastin et al.
"taken together, these findings suggest that up to one in three patients with LC are at risk of developing POTS, especially female patients with joint hypermobility."
Article | Thread

Microorganisms
Post-COVID-19 Small Fiber Neuropathy as a New Emerging Quality of Life-Threatening Disease: A Systematic Review — Bandinelli et al.
"The recent literature supports persistent inflammation and immune activation as plausible mechanisms, but at present it remains unclear whether they are solely responsible for PASC-SFN."
Article | Thread

Frontiers in Neurology
Neurological sequelae of long COVID: a comprehensive review of diagnostic imaging, underlying mechanisms, and potential therapeutics — Talkington et al.
"In this review, we explore the mechanistic hypotheses of these neurological changes, which describe CNS invasion, neuroinflammation, blood-brain barrier disruption, and gut-brain axis dysregulation, along with the novel vascular disruption hypothesis that highlights endothelial dysfunction and hypoperfusion as a core underlying mechanism."
Article | Thread

Journal of Clinical Medicine
Differential Fatigue Profile in Patients with Post-COVID Condition, Fibromyalgia, and Multiple Sclerosis — Oliver-Mas et al.
"Fatigue intensity was significantly higher in PCC and fibromyalgia compared to MS. Some differences in fatigue characteristics were observed: MS patients reported more fatigue in response to heat and a greater impact of mood on fatigue. Furthermore, delayed fatigue and reduced benefits from rest were more pronounced in both PCC and fibromyalgia."
Article | Thread

Preprint: MedRxiv
Molecular and Immunological Signatures of Long COVID: Implications for Diagnosis and Personalized Treatment Strategies — Jorine K.N. Hammink and Tim R. van Elst
"Logistic regression models revealed that mRNA spike data alone in this small group was insufficient to predict symptoms presence, but the inclusion of immunoglobulins and inflammatory markers significantly improved predictive accuracy."
Article | Thread
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