News in Brief - May 2025

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

 

Week beginning 28th April 2025

News, advocacy and articles

Documentary Doctors as Patients
A moving, honest and thought provoking documentary interviewing five medical doctors with post-acute infection-associated syndromes like ME, Long Covid and chronic Lyme. They talk about their experiences, what they were taught about these illnesses as students and what they have learned as patients. Directed by Anil van der Zee. The documentary is in Dutch and has English subtitles.
Documentary l Thread

Chronic living therapy Therapist perspective: Dan Wyke
And interview with counsellor and person with ME, Dan Wyke. "The harm caused by gaslighting by medical professionals is real and profound. It’s immensely hard for patients to live in a world that doesn’t want to acknowledge the reality of individuals’ illness and suffering. Not only can it lead to dangerous neglect but it can also cause patients to question their own sense of reality."
Interview l Thread

Australia Submission from RACGP
The Royal Australian College of General Practitioners submitted a response to the NHMRC scoping survey for the development of clinical practice guidelines for ME/CFS.
Submission | Thread

Aotearoa New Zealand National Ethics Advisory Committee publishes Finding Balance: Ethical Principles for Epidemics and Pandemics"
"Analyses of pandemic response strategies should fully consider the long-term health impacts of both the disease and delayed health service delivery."
Article | Thread

Cochrane In February and March 2025 the Science for ME committee submitted appeals about rejection of our complaints. This week Cochrane informed us that both appeals have been rejected. They say: "...our assessment concluded that the handling of the complaint strictly followed standard Cochrane processes and policies."
Cochrane's responses | Petition | Thread
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Fundraising

Trial by Error: Reporting on ME, ME/CFS, Long Covid, & so on...
Final days of the crowdfund campaign via Berkeley University to secure David Tuller's important work and position for further 6 months. The aim is to raise $68,000 by Monday May 5th. 10 years ago Tuller launched Trial By Error in 2015 and his work since then with reporting, investigation, analysis, letters and much more has been invaluable for moving matters forwards.
Crowdfunding l Thread
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Coming events

Conference in Norway ME/CFS and Long Covid - Digging Deeper - 7-8 May
Large conference in Stavanger, Norway with following speakers: Carmen Scheibenbogen, Karl Johan Tronstad, Rod Wüst, David Systrom, Trude Schei, Kristian Sommerfelt, Brian Hughes, David Putrino, Anniken Sommerfelt, Michelle Bull, Øystein Fluge and Ola D. Saugstad (host). 7th May is for healthcare workers and the evening conference 8th May is open to everyone. The event is organised by the Norwegian ME Association - Rogaland.
Website l Thread

The international ME/CFS awareness day
Patient advocates are raising awareness from many countries this month in connection with the international ME/CFS awareness day May 12th.
The forum has a thread where anyone can share events, articles, campaigns and more.
Thread

NIH - RECOVER Research Review (R3) Webinar
"Understanding Metformin Use and Long COVID and ME/CFS following COVID-19 Infection: Insights from Two Studies"
Tuesday, May 13 at Noon Eastern Time
Website | Registration | Thread

Bateman Horne Center - Free Online Support Groups
Tuesday, May 13, 1:00 - 2:15 PM Mountain Time
Topic: Tapping Into the Collective Wisdom of the Group
Tuesday, May 20, 1:00 - 2:00 PM Mountain Time
Topic: Love Relationships and Illness
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread

PolyBio Spring Symposium
Zoom seminar with 10 minute research updates from 33 researchers.
Friday, May 16, 1100 ET / 1500 UTC
Details | Registration

Invest in ME Research Conference
On 30th May, the 17th Invest in ME Research International ME Conference will be held, organised by the UK charity Invest in ME Research. It will allow collaboration and networking between European and international researchers, clinicians, early career researchers, and European ME patient groups and charities.
Article | Thread

USA - Solve ME Advocacy Week 2025, scheduled for June 23 - 27, is 100% virtual this year, no in-person meetings. The deadline to register is May 12. No experience in political advocacy is necessary, training sessions are available.
Website | Registration | Thread
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Research news and commentary

Solve ME "Immune Dysfunction & T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS & Long COVID"
A recording of the Solve ME webinar from April 29 has been posted on their YouTube channel. Speakers include Liisa K. Selin, Anna Gil, Roshan Kumar, Megan L. Fitzgerald, and Rivka Solomon. Moderated by Solve ME CEO Emily Taylor.
Video | Thread

Trial by Error by David Tuller Ewing & David Joffe on Just-Published "Global Expert Consensus" on Long Covid
David Tuller speaks with Andre Ewing and David Joffe, two of the authors of the recent article "Long COVID clinical evaluation, research and impact on society: a global expert consensus".
Interview l Thread
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Research

ME/CFS and related research

Preprint
Defining a High-Quality Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cohort in UK Biobank — Gemma L. Samms and Chris P. Ponting
"By cross-referencing different data in UK Biobank, we show that a participant’s ME/CFS diagnosis is best supported by two or more lines of evidence. Using the most consistent evidence, and accounting for those who – due to their illness – could not participate in the UK Biobank, we estimate that the UK’s prevalence of ME/CFS is 410,000."
Article | Thread

Neuron
The gut microbiota promotes pain in fibromyalgia — Weihua Cai et al.
"Here, we show that fecal microbiota transplantation from fibromyalgia patients, but not from healthy controls, into germ-free mice induces pain and numerous molecular phenotypes that parallel known changes in fibromyalgia patients, including immune activation and metabolomic profile alterations. Replacing the fibromyalgia microbiota with a healthy microbiota substantially alleviated pain in mice."
Article | Thread

Journal of Integrative Neuroscience
Static and Kinetic Disequilibrium are Central Neural Signs in Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-Therapeutic Effect of Repetitive Transcranial Magnetic Stimulation — Kunihisa Miwa
Uncontrolled study. "Static disequilibrium is related to orthostatic intolerance, while kinetic disequilibrium is related to gait. Both are important symptoms that restrict activities of daily living. rTMS treatment of both the DLPFC and M1 effectively alleviated disequilibrium and resolved orthostatic intolerance."
Article | Thread

Long Covid research

Clinical Immunology
Hyper-reactivity of CD8+ T cells and high expression of IL-3 correlates with occurrence and severity of Long-COVID — Renner et al.
"Long-COVID patients showed clear signs of T cell hyper-activation predominantly in the CD8+ T cell subset with a 4-fold higher expression of CD25 and 2-fold more effector-memory T cells. Following polyclonal T cell stimulation, we found a 2-fold stronger upregulation of CD25 and a 7-fold higher release of IL-3 in Long-COVID."
Article | Thread

The Journal of Infectious Diseases
Immune disturbances in individuals with post-COVID syndrome are not characterized by enhanced SARS-CoV-2-specific immunity — Ober et al.
"Persistent immune disturbances in individuals with PCS are characterized by reduced SARS-CoV-2-specific T cell responses, increased B cell activation, and altered inflammatory and vascular biomarkers."
Article | Thread

Nature Immunology
Identification of soluble biomarkers that associate with distinct manifestations of long COVID — Gao et al.
"we found that breathlessness was strongly associated with differential protein expression" Moreover, GSEA confirmed that severe breathlessness was associated with the enrichment of several pathways that characterized the proteomic signature of long COVID, including those related to ceramide and HIV-1 Nef" "Of note, breathlessness and other symptom scores were largely independent of age and correlated only weakly with BMI"
Article | Thread

Mutation Research - Genetic Toxicology and Environmental Mutagenesis
Acute and chronic post-COVID-19 conditions: A study of genetic integrity and clinical markers — Martins et al.
"results suggest that genetic instability, as assessed by the comet assay, may not account for the clinical differences observed in post-COVID-19 syndrome" "The biochemical parameters analyzed in our study revealed important differences between the acute and chronic post-COVID groups, as well as between genders"
Article | Thread

Preprint: MedRxiv
Complement activation was not increased in patients with post-acute sequelae after mild SARS-CoV-2 infection: A prospective cohort study — Madlene Holmqvist et al.
"We analyzed the complement activation markers C3bc, C3bBbP and TCC in 48 PASC patients." "Although the patients with a mild SARS-CoV-2 infection had a trend towards more severe PASC, we could not find any significant differences in complement activation markers between these patients and controls."
Article | Thread

Preprint: MedRxiv
Long-COVID Postural Tachycardia Syndrome: A deep phenotyping study — Nicholas W. Larsen et al.
"An unexpected finding of our study was that 8.7% of LC-POTS participants exhibited aggregates of P-syn on skin biopsy"
Article | Thread

Life
Variability in Arterial Stiffness and Vascular Endothelial Function After COVID-19 During 1.5 Years of Follow-Up—Systematic Review and Meta-Analysis — Loboda et al.
Article | Thread

COVID
Long COVID Is Associated with Severe Cognitive Limitations Among U.S. Adults — Neba et al.
"Overall, 15.1% had long COVID. A higher percentage of adults with long COVID (13.1% vs. 4.1%) reported severe cognitive limitations compared to no COVID (p < 0.001)."
Article | Thread

BMC Infectious Diseases
Trajectories of persisting Covid- 19 symptoms up to 24 months after acute infection: findings from the Predi-Covid cohort study — Fischer et al.
"We identified 2 total symptom score trajectories: T1 “Mild symptoms, fast resolution” (N = 376; 67.7%), and T2 “Elevated and persisting symptoms” (N = 179; 32.3%)."
Article | Thread

Family Medicine and Community Health
Effects of the COVID-19 pandemic on individuals with chemical intolerance — Palmer et al.
"The purpose of this study was to determine if the COVID-19 pandemic had differential effects on individuals with chemical intolerances"
Article | Thread

PLOS ONE
Risk of post-acute symptoms among adults: A comparison study of severe COVID-19, pneumonia, and influenza — Caroline M. Schaefer et al.
"Those with influenza were less likely than those with COVID-19 to experience post-acute symptoms while those with pneumonia were more likely to have post-acute illness than those with COVID-19."
Article | Thread

BMC Infectious Diseases
Mitigating fatigue in long COVID patients with MYPplus: a clinical observation — Choi et al.
"This observational study aimed to evaluate the efficacy of MYPplus, an herbal formulation composed of Astragali Radix, Salviae Radix, and Aquilariae Lignum, in alleviating fatigue and brain fog in patients with Long COVID."
Article | Thread
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