News in Brief - March 2025

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

 

Week beginning 3rd March 2025

Part 1 of 2

News, advocacy and articles

Aotearoa New Zealand Public Health Communications Centre Aotearoa
Long Covid Update – a threat that continues to demand a strong response
"In addition to funding treatment and support services, this strategy must include public health and social measures to protect individuals and populations from exposure to Covid-19."
Briefing | Thread

Solve ME announced the release of a new community developed resource guide for Infection-Associated Chronic Conditions (for example, Long Covid, ME/CFS, POTS, and other chronic conditions).
Article | Resource Guide | Thread

UK ME Association A Chairman resignation statement to the ME community
Neil Riley has stepped down as chairman and as a trustee of the MEA after 21 years. The MEA has thanked him for his service. The vice chairman David Allen will take over as interim chair.
Article | Thread

UK Physios for ME Spring Update highlights their research projects, upcoming publication of their book in German, and their involvement in physiotherapy training.
Article | Thread

UK The Guardian ‘We’re losing decades of our life to this illness’: long Covid patients on the fear of being forgotten
"Five years on from March 2020, millions of people still face debilitating symptoms, with huge repercussions on public health and productivity. But politicians are starting to pretend the pandemic never happened"
Article | Thread

Bateman Horne Center "A Common Disease Hidden in Plain Sight"
A new blog post for Rare Disease Month which explains that while ME/CFS does not fit the definition of a rare disease it is an illness which often goes undiagnosed and is misunderstood.
Blog Post | Thread

USA - #MEAction and the Patient-Led Research Collaborative have written an open letter to HHS director Robert F. Kennedy, Jr. calling for him to reinstate the Long COVID Advisory Committee.
Article | Thread

Germany - A documentary called "Chronically Ill – Chronically Ignored" (German name = Chronisch Krank – Chronisch Ignoriert) was released on February 25. One of the filmmakers has severe ME/CFS and did all the work from her home.
Article (German) | Thread

Cochrane complaints
On 5th February 2025, the Science for ME committee submitted a detailed complaint headed: "Complaints about republishing an outdated and flawed review as if it were a new review, and the failure to withdraw it." Cochrane failed to provide the promised formal acknowledgment, so we resubmitted the complaint on 20th February, again unacknowledged.
On 3rd March, shortly after contacting Cochrane complaints again, we received a brief and unsigned response which gave an unsatisfactory explanation of part of the complaint: "Cochrane decided to publish the editorial note in question with a new citation to ensure discoverability of our decisions regarding this review", claimed this did not breach their editorial policy, said the review "does not make any recommendations for or against exercise therapy", and declared the complaint closed.
Complaint | Cochrane's response | Thread
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Coming events

Bateman Horne Center - Free Online Support Groups
Tuesday, March 11, 1:00 - 2:00 PM Mountain Time
Topic: My Illness is Real: Surviving Invalidating Relationships and Experiences
Tuesday, March 18, 1:00 - 2:00 PM Mountain Time
Topic: When Things Get Tough: Managing Difficult Emotions with Chronic Illness
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
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Research news and commentary

Int J Mol Sci Advances in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 2nd Edition
The journal is inviting submissions for a special issue, with deadline of 20 May 2025. The guest editor is Dr. Vincent Lombardi.
Announcement

ME Research UK "Language matters – What health professionals should not say to people with ME/CFS"
Summary of a recent paper which identifies problematic phrases used by clinicians that should not be used. The paper explains that both ME/CFS and long COVID have been "extensively psychologised, with patients encountering substandard medical care, disbelief and stigma".
Article | Thread

Trial by Error by David Tuller New Hyped-Up Lightning Process Study from New Zealand
A critical analysis of a paper based on retrospective interviews of 12 participants with Long Covid who underwent LP. "It reads like a Lightning Process marketing effort cosplaying as an academic study."
Article l Thread
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Go to the next post for part 2 on research

 

Week beginning 3rd March 2025

Part 2 of 2

Research

ME/CFS research

International Journal of Molecular Sciences
Cognitive Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome—Aetiology and Potential Treatments — Bansal et al.
The authors wrote a review on cognitive dysfunction in ME/CFS and speculate that this may be caused by low-grade inflammation and altered regional cerebral blood flow.
Article | Thread

Biomolecules
Unravelling the Connection Between Energy Metabolism and Immune Senescence/Exhaustion in Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Van Campenhout et al.
Review. "conflicting results across studies, methodological variability, differences in diagnostic criteria, and variations in patient cohorts underscore the need for standardized research approaches."
Article | Thread

Long Covid research

Thesis: Ulm University
Clinical, histopathological, and radiological characterization of post-acute sequelae of COVID-19 — Czech
"Except for one outlier, the viral matter could not be associated with pathological processes, challenging the hypothesis that unresolved viral presence is the cause of chronic inflammation. The observations suggest that PASC represents a post-viral pathological process driven by bronchiolitis. The histological, serological, and radiological results within this PASC cohort align with the criteria of bronchiolitis following a mild COVID-19 infection."
Article | Thread

Thesis: Unversity of Amsterdam
Towards precision medicine for (long) COVID: Perspectives on pharmacotherapy and molecular mechanisms — Baalbaki
"This thesis provided novel insights into the nasal epithelium of long COVID patients, revealing upregulated SMURF1 expression in the nasal epithelium of patients with pulmonary radiological abnormalities. Additionally, it demonstrated decreased wound healing potential, barrier dysfunction and hypersensitivity of the nasal epithelium along with the involvement of the IFN-γ and IL-1β axis."
Article | Thread

Nature Neuroscience
Microglia dysfunction, neurovascular inflammation and focal neuropathologies are linked to IL-1- and IL-6-related systemic inflammation in COVID-19 — Fekete et al.
"COVID-19 is associated with IL-1- or IL-6-related proinflammatory responses at sites of viral antigens, vascular inflammation, BBB injury and microglial dysfunction across the brain, particularly in central autonomic nuclei."
Article | Thread

Frontiers in Immunology
Long-term increase in soluble interleukin-6 receptor levels in convalescents after mild COVID-19 infection — Lokau et al.
"our study shows long-lasting alterations of the IL-6 system after COVID-19 disease, which might be relevant when applying anti-IL-6 or anti-IL-6R therapy."
Article | Thread

Redox Report
Involvement of oxidative stress in post-acute sequelae of COVID-19: clinical implications — Paola Mayara Valente Coronel et al.
"findings suggest that individuals with PASC pronounced [oxidative stress], which potentially exacerbates disease complications."
Article | Thread

Journal of Medical Virology
Genetic Landscape and Mitochondrial Metabolic Dysregulation in Patients Suffering From Severe Long COVID — Kristoffer Skaalum Hansen et al.
"In this effort to establish patterns of underlying genetic predisposition for the development of long COVID, we performed comprehensive genomic analysis with a focus on genes related to mitochondrial function on 13 patients with a severe long COVID phenotype dominated by neurological and muscular symptoms/myopathy."
Article | Thread

Journal of Public Health Management and Practice
Use and Characteristics of Clinical Coding for Post-COVID Conditions in a Retrospective US Cohort — Ford, Nicole D. et al.
"Overall, 0.6% of 65 556 068 patients had a PCC diagnosis code (64.6% female; 6 in 10 had ≥1 preexisting conditions)." "The most prevalent co-documented PCC-associated incident conditions were respiratory (13.4%) and malaise and fatigue (7.8%)."
Article | Thread

Zeitschrift für Evidenz, Fortbildung und Qualität im Gesundheitswesen
“Ultimately, you are on your own.” A qualitative analysis of barriers to health care from the perspective of patients with long COVID — Sabine Hammer et al.
"The study shows that there are currently no adequate care concepts and structures for post-infectious illnesses and that activating therapies, mostly in connection with the assumption of a psychosomatic origin, lead to significant malpractice. The finding that the majority of respondents feel weakened, ashamed or harmed by their physicians is particularly dramatic. The data also provide evidence of systematic stigmatization and discrimination against those affected."
Article | Thread

American Journal of Physical Medicine & Rehabilitation
Dropouts in exercise rehabilitation program in patients with Long COVID: A systematic review — Monte, Adão Luis et al.
"Exercise rehabilitation studies for Long COVID patients show a 14% dropout rate, with the most common reasons being health-related issues and incomplete assessments."
Article | Thread

European Journal of Pediatrics
Age differences in prevalence and symptoms of post-COVID-19 condition among children: a prospective cohort study — Wu et al.
"The incidence of PCC among pediatric patients with COVID-19 was 8%, with fatigue being the most commonly reported symptom across all age groups. The associated factors for PCC varied according to age groups."
Article | Thread

Nature Communications
Prospective cohort study of fatigue before and after SARS-CoV-2 infection in the Netherlands — Huiberts et al.
"We aimed to assess fatigue during and after a SARS-CoV-2 infection by age, sex, presence of a medical risk condition, SARS-CoV-2 variant and vaccination status, accounting for pre-infection fatigue and compared with uninfected individuals."
Article | Thread

PLOS ONE
Increased galanin-galanin receptor 1 signaling, inflammation, and insulin resistance are associated with affective symptoms and chronic fatigue syndrome due to long COVID — Wasim Talib Mahdi Al Masoodi et al.
"a sizable portion of the variation in the physioaffective phenome was accurately predicted by a combination of biomarkers, including GALGALR1 signaling, CRP, PGE2, and z PBT - z SpO2"
Article | Thread

Clinical Cardiology
Tragus Nerve Stimulation Attenuates Postural Orthostatic Tachycardia Syndrome in Post COVID-19 Infection — Zhuo Wang et al.
"low-level tragus stimulation significantly attenuated the increase in heart rate from supine to a 10-min stand, as well as the average and maximum heart rates after 1 month of treatment." "effects persisted during the 1-year follow-up."
Article | Thread

Journal of Cardiopulmonary Rehabilitation and Prevention
Impaired Endothelial Function in Individuals With Post-Acute Sequelae of COVID-19: Effects of Combined Exercise Training — Choi, Tae Gu et al.
"Individuals with PASC exhibited significantly lower endothelial function compared to healthy controls (4.95 ± 2.0% vs 8.00 ± 2.4%, P < .001). The exercise group showed a significant increase in endothelial function (4.73 ± 1.5% to 7.98 ± 2.4%) as opposed to the control group (5.31 ± 2.5% to 6.30 ± 2.5%) (interaction effect: P = .008), reaching levels similar to those in healthy individuals."
Article | Thread

Neurological Research
Long-COVID from the perspective of neurologists at the outpatient clinic: A cross-sectional field study — Artemios Artemiadis et al.
"In this small cross-sectional study, our aim was to delineate the symptom patterns among Long-COVID patients referred to an outpatient Neurological clinic and assess their impact on psychological, sleep, and overall well-being. Fatigue emerged as the most frequently reported symptom, followed by anxiety, myalgias, and concentration difficulties."
Article | Thread
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