News in Brief - April 2025

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

 

Week beginning 31st March 2025

News, advocacy and articles

USA - #MEAction announced that this year's Millions Missing campaign is "largely focused on the seismic cuts being made to research funding, healthcare, and disability services in the U.S." Register now for one of the two planning meetings scheduled for Thursday, April 10. Plans for the UK campaign coming soon.
Announcement | Thread

Salon "Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again"
An overview of the latest budget cuts in the USA and how they impact Long Covid and ME/CFS research.
Article | Thread

UK Parliament The publication date for the governement's delivery plan for ME/CFS has been moved to the end of June 2025.
Announcement | Thread

UK ME Association DWP Replies to Dr Charles Shepherd’s Letter Regarding Welfare Cuts. Dr Shepherd's letter raised concerns that people with fluctuation conditions are not properly assessed. The reply links the government consultation open for feedback.
Consultation survey | Article | Thread

The Sick Times An international emergency task force is urgently needed for Severe Long COVID and ME crisis cases
"On behalf of the Very Severe, we the Severe are appealing to you, the Mild and Moderate, to put pressure on our ME and Long COVID organizations to dedicate at least 25% of their annual attention (including budget and staff) to our plight."
Article | Thread

ANZMES Petition against benefit cuts for hospitalised patients
The petition calls on the New Zealand Government to urgently review and amend the policy that reduces benefits for individuals hospitalised for over 13 weeks.
Petition | Thread
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Research news and commentary

UK ME Association Press Release: Leading UK Charity invests in Canadian trial of drug treatment for ME/CFS and Long Covid
"Original funding (£440,000) for the clinical trial of LDN came from the Canadian Institutes of Health Research. Dr Nacul is completing the study at the B.C. Women’s Health Research Institute. The ME Association has invested £132,000 to support future recruitment and follow-up of participants."
Article | Thread

Trial by Error by David Tuller

New Study Documents Iatrogenic Harm from Perceived Psychosomatic and Psychiatric Misdiagnoses of Rheumatic Diseases
A walkthrough of the paper "'I still can't forget those words': mixed methods study of the persisting impact on patients reporting psychosomatic and psychiatric misdiagnoses" - Sloan et al. 80% of those who had received a psychosomatic misdiagnoses reported that it had damaged their self worth. Tuller comments that the iatrogenic harm of the MUS approach is incalculable.
Article l Thread

Lancet Letter Exchange on Claimed Success of "Persistent Physical Symptoms" Trial Despite Clinically Insignificant Findings
David Tuller and colleague Joan Crawford wrote a letter to the Lancet raising criticism of a paper by Burton et al on psycho-behavioral intervention for "persistent physical symptoms". Tuller/Crawford: "Patients desire resolution of symptoms and recovery of functions. The trial did not achieve this result. Post-intervention, participants continue to have an impaired quality of life and poor experiences of health care."
Burton et al reply: "Encouraging health professionals to proclaim “we do not know what is causing symptoms” in response to persistent physical symptoms, as Crawford and Tuller recommend, underestimates the explanatory power of recent symptom science and is likely to perpetuate the frustration and hopelessness of both clinicians and patients, which is all too common in this field."
Article l Thread
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Coming Events

Bateman Horne Center - Free Online Support Groups
Tuesday, April 8, 1:00 - 2:00 PM Mountain Time
Topic: Getting Unstuck in Stuck Places
Tuesday, April 15, 1:00 - 2:00 PM Mountain Time
Topic: Re-introducing Peace, Happiness and Joy to the Illness Experience
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
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Research

ME/CFS research

The Lancet
Forum members Joan Crawford and David Tuller wrote a response to a recent trial of a consultative intervention for persistent physical symptoms, published in the Lancet. Crawford & Tuller highlight that the effect size found was lower than the minimal clinically important difference and that it likely was the result of bias.
Article | Thread

Life
The PACE Trial’s GET Manual for Therapists Exposes the Fixed Incremental Nature of Graded Exercise Therapy for ME/CFS — Vink and Partyka-Vink
"An article by White et al., which is written by 51 researchers, claims that there are eight anomalies in the review process and the interpretation of the evidence by NICE. In this article, we reviewed the evidence they used to support their claims." "Our analysis shows that the arguments that are used to claim that there are eight anomalies in the review process and the interpretation of the evidence by NICE are anomalous and they highlight the absence of evidence for the claims that are made."
Article | Thread

BMJ Open
Understanding symptom clusters, diagnosis and healthcare experiences in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a cross-sectional survey in the UK — Maedeh Mansoubi et al.
"Despite updated NICE guidelines, only 10.1% of participants reported a positive impact on care, and satisfaction with NHS services remained low (6.9% for ME/CFS and 14.4% for long COVID)."
Article | Thread

Preprints.org
A Systems-Based Hypothesis for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Phosphatidylcholine Deficiency, Insulin Signaling and Noradrenergic Neuron Dysregulation — Tamara Carnac
"We explore genetic, metabolic, and inflammatory factors that contribute to phosphatidylcholine deficiency and propose a multi-component model of ME/CFS, highlighting the interplay between phosphatidylcholine metabolism, liver dysfunction, neuronal function and inflammatory signaling."
Article | Thread

Preprint: BioRxiv
Identification of genetic and non-genetic modifiers of genomic imprinting through whole genome screening in humans — Francesco Cecere et al.
"we observed a negative correlation between myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and 20 NNAT:TSS CpGs"
Article | Thread

Long Covid research

Nature Communications
Long COVID after SARS-CoV-2 during pregnancy in the United States — Zang et al.
"we observed a relatively lower risk of Long COVID in pregnant individuals compared to SARS-CoV-2-infected non-pregnant females who were exactly matched on region, age, infection time, acute severity, and baseline comorbidities."
Article | Thread

The Lancet Infectious Diseases
Nirmatrelvir–ritonavir versus placebo–ritonavir in individuals with long COVID in the USA (PAX LC): a double-blind, randomised, placebo-controlled, phase 2, decentralised trial — Mitsuaki Sawano et al.
"Nirmatrelvir–ritonavir administered for 15 days did not significantly improve health outcomes in participants with long COVID compared with placebo–ritonavir at day 28."
Article | Thread

Preprint: MedRxiv
Reinfection with SARS-CoV-2 in the Omicron Era is Associated with Increased Risk of Post-Acute Sequelae of SARS-CoV-2 Infection: A RECOVER-EHR Cohort Study — Bingyu Zhang et al.
"In this study involving 407,300 children and adolescents with a first SARS-CoV-2 infection and 58,417 with a documented reinfection, we observed an increased risk of PASC across multiple organ systems, reinforcing concerns about the long-term consequences of reinfection."
Article | Thread

Journal of Adolescent Health
Characterisation and Management of Children and Young People Referred to a Paediatric Tertiary Post-COVID Service — Anne-Lise Goddings et al.
"Only 25% patients referred to the Pan-London Post-COVID service were attending school at least half of the week, emphasising the functional impact of PCC on this cohort at a critical point in their educational journey."
Article | Thread

EJNMMI Research
Reorganization of brain connectivity in post-COVID condition: a 18F-FDG PET study — Verger et al.
"study confirms that the hypometabolic pattern in PCC patients can persist at least 9 months after infection, with modifications of metabolic connectivity within this network." "These metabolic connectivity reorganizations could suggest an attempt at functional adaptation of the brain to metabolic impairment, even if connectivity might be less efficient."
Article | Thread

Current Issues in Molecular Biology
B Cell Dynamics and Transitional B Cells in Long COVID — Korobova et al.
"We noted that long COVID patients had a statistically significant higher percentage of naive mature cells (CD27−CD38+), whereas transitional cells (CD27−CD38+++) and double-negative (DN, CD27−CD38−) cells were lower when compared to healthy donors."
Article | Thread

Information, Communication & Society
‘A gift and a curse’: the benefits and limitations of self-tracking Long COVID — Sazana Jayadeva and Deborah Lupton
"It is notable that most of our participants had not used self-tracking wearables or apps prior to developing Long COVID. Indeed, some had described themselves as having been opposed to the use of such devices. However, in the absence of adequate medical support, and despite some drawbacks and frustrations, these wearables and apps had become key tools for navigating Long COVID."
Article | Thread

Journal of Hypertension
Long-term effects of SARS-CoV-2 infection on blood vessels and blood pressure – LOCHINVAR — Lip, Stefanie et al.
"Persistent vascular dysfunction and BP increase post-COVID-19 underscore the need for further studies on the long-term risk of hypertension and cardiovascular disease."
Article | Thread

Preprint: MedRxiv
Dysautonomia in long COVID is prevalent and could explain the frequency of symptoms — Leonardo Tamariz et al.
Article | Thread
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