-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
News in Brief - July 2025
- Thread starter S4ME News
- Start date
-
- Tags
- news news in brief
Week beginning 30th June 2025
News, advocacy and articles
Trial by Error by David Tuller Updated Medical Textbook Still Promotes Biopsychosocial Ideology
On the recent 11th edition of Elsevier's "Kumar & Clark's Clinical Medicine", a standard textbook for medical education worldwide. It places ME/CFS under "General Hospital Psychiatry" and claims psychological symptoms are core components of the illness as well as recommending the PACE trial for further reading. Tuller calls the section on ME/CFS "pathetic".
Article l Thread
UK government Welfare reforms Current planned legislation includes cuts to some benefits for sick and disabled people. The ME Association has produced a template letter to write to your MP. The organisation Benefits and Work also has useful information.
MEA template | Thread
UK NICE Clinical Knowledge Summary (CKS) on ME/CFS has been published. It summarises key points and provides guidance for clinicians. Forum discussion has raised serious issues with the document.
NICE CKS | Thread
UK Government Publication of the long delayed Delivery Plan for ME/CFS has been delayed again. Advocacy group #ThereForME give an update, saying they have been involved in the final stages and there is a plan, but no new funding.
Article | Thread
UK NHS apps for Long Covid and ME/CFS The UK government is funding development of apps by the private company Elaros in collaboration with Leeds and other NHS Long Covid services. The ME Association and the clinicians group BACME are collaborating in producing material for the apps, including one for ME/CFS clinics using the as yet unpublished ME Association supported Clinical toolkit and PROMs by Sarah Tyson. Meetings held recently by the MEA and Elaros have been for clinicians only. Elaros are inviting people with ME/CFS and related conditions to beta test the Open-OH app which is available in app stores and provide feedback. Forum members have found serious issues with the contents of the app.
Thread
UK Physios for ME mark six years working together, publication of their book, published and ongoing research, presentations, advocacy and support.
Article | Thread
Dr Michelle Bull, one of the four Physios for ME gave a talk hosted by Sheffeld ME/CFS and FM group at their AGM. "Using national and international best practice to improve services locally with special mention of physiotherapy." Duration 1 hour
Video | Thread
Mitt Eremitage The Swedish patient advocate and forum member Mitt Eremitage has written a thorough and critical article in five parts about a correspondence with the Bateman Horne Center on why their clinical guide includes a recommendation on brain training. Articles are in both English and Swedish versions.
Part 1 l Part 2 l Part 3 l Part 4 l Part 5 l Thread
Long Covid Advocacy The Danger of 'Feeling Safe': Long Covid and the Return of Psychosomatic Medicine
The third article of a brilliant series bringing historical context and critical analysis of the psychosomatic approach to Long Covid and ME/CFS.
Article l Thread
Solve ME Pacing: Power In Slowing Down (EmPOWER M.E. 2025)
A recording of the June 27 EmPower M.E. webinar has been posted on YouTube. A panel discusses pacing which is described as "one of the most talked-about — but often misunderstood — tools in chronic illness management."
Video | Thread
............
Research news and commentary
UK Action for ME: New Research Project: PRIME - Building infrastructure for Patients, Researchers and Industry for ME/CFS
"Started in October 2025, PRIME is funded by the Medical Research Council and is a 4 year project between Action for ME, the University of Edinburgh and the Genetics Centre of Excellence. A total of £843,662.40 will fund all partners' to the application over the 4 years." The aims are to create research collaborations; form international consortia on genetics and molecular biomarkers; and to build a PPI (public and patient involvement) of at least 100 people with ME/CFS and carers as a pool for researchers.
Article | Thread
.............
Research
ME/CFS research
Thesis: University of Surrey
Characterising the Electrophysiological Properties of Cells in Health and Disease — Krista Clarke
"Three candidates of diagnostic biomarkers were identified including ’normalised D value’ following hyperosmotic NaCl incubation, the magnitude of the percentage change in ζ-potential following hyperosmotic NaCl incubation, and the percentage changes in ζ-potential following hyperosmotic mannitol incubation. The latter biomarker performed the best, with a sensitivity and specificity of 92.31 and 71.43 respectively. Combining all three together produces an optimum performing biomarker with a sensitivity of 81.80% and a specificity of 85.70%. These results compare favourably with other biomarkers for ME/CFS."
Article | Thread
Artificial Intelligence in the Life Sciences
Actively protective combinatorial analysis: A scalable novel method for detecting variants that contribute to reduced disease prevalence in high-risk individuals — Sardell et al.
"the actively protective analysis supports the mechanistic hypotheses from our original causative combinatorial analysis for ME/CFS. It also identified several novel genes not identified in that analysis. Importantly, the signatures associated with these genes are associated with reduced rather than increased prevalence of ME/ CFS, especially among individuals who possess multiple causative risk signatures."
Article | Thread
Medical Research Journal
A systematic review of gut microbiota differences in ME/CFS and Long COVID patients — Hanna Tabisz et al.
"In both ME/CFS patients and LCS, an altered gut microbiota has been observed. Some studies have also reported reduced bacterial diversity and abundance compared to healthy individuals."
Article | Thread
Cureus
Nutraceutical Supplementation Effects on Subjective Fatigue Symptoms in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review — Emanuella M. Brito et al.
"This systematic review aims to evaluate and summarize recent evidence on nutrient supplementation and diet-based interventions in patients with ME/CFS sourced from clinical trial registries and article databases."
Article | Thread
Long Covid research
Gastro Hep Advances
Increased Risk of Post-Acute Sequalae of COVID-19 in Patients With Immune-Mediated Inflammatory Diseases — Evangelin Shaloom Vitus et al.
"In this population-based nationwide cohort study of 25,889 IMID patients and 51,778 matched non-IMID individuals, we report a significantly increased risk of developing PASC in patients living with one of the included IMIDs" "only those with [spondyloarthritis], [rheumatoid arthritis], and psoriasis were at a significantly higher risk of PASC."
Article | Thread
Nature Scientific Reports
Protective role of anti-SARS-CoV-2 antibody responses against vital organ related long COVID symptoms — Yukari Magawa et al.
"Collectively, our data demonstrate that LC following predominantly mild COVID-19 presents diverse symptoms affecting major organ systems, including the central nervous, pulmonary and cardiovascular systems. We show that different system-category symptoms are differentially associated with anti-SARS-CoV-2 antibody profiles, both in early convalescence and later, during ongoing LC symptoms, indicating both potentially protective and deleterious effects of anti-SARS-CoV-2 antibodies."
Article | Thread
Frontiers in Immunology
Wuhan strain of SARS-CoV-2 triggers activation of immune evasion machinery similar to the one operated by cancer cells — Abooali et al.
"Here, we report, for the first time, that Wuhan strain of SARSCoV-2 and its spike protein (S) induce activation of hypoxia-inducible factor 1 (HIF-1) transcription complex"
Article | Thread
Nature Scientific Reports
Mapping brain changes in post-COVID-19 cognitive decline via FDG PET hypometabolism and EEG slowing — Manganotti et al.
"The main finding of this study is the identification of significant hypometabolism and EEG slowing in anterior brain regions in patients with persistent subjective cognitive decline after mild COVID-19." "These findings were observed in patients who experienced mild acute COVID-19 that did not require hospitalization or ventilatory support."
Article | Thread
Circulation
Exercise Intolerance and Response to Training in Patients With Postacute Sequelae of SARS-CoV2 (Long COVID): A Scientific Statement From the American Heart Association — William K. Cornwell et al.
Consensus statement promoting exercise therapy. "there is accumulating evidence that cardiovascular deconditioning is a central component of the pathophysiology. This deconditioning results from a relative reduction in physical activity in the setting of the index infection".
The cause of cardiovascular deconditioning in acutely *asymptomatic* cases does not appear to have been considered.
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
Trial by Error by David Tuller Updated Medical Textbook Still Promotes Biopsychosocial Ideology
On the recent 11th edition of Elsevier's "Kumar & Clark's Clinical Medicine", a standard textbook for medical education worldwide. It places ME/CFS under "General Hospital Psychiatry" and claims psychological symptoms are core components of the illness as well as recommending the PACE trial for further reading. Tuller calls the section on ME/CFS "pathetic".
Article l Thread
UK government Welfare reforms Current planned legislation includes cuts to some benefits for sick and disabled people. The ME Association has produced a template letter to write to your MP. The organisation Benefits and Work also has useful information.
MEA template | Thread
UK NICE Clinical Knowledge Summary (CKS) on ME/CFS has been published. It summarises key points and provides guidance for clinicians. Forum discussion has raised serious issues with the document.
NICE CKS | Thread
UK Government Publication of the long delayed Delivery Plan for ME/CFS has been delayed again. Advocacy group #ThereForME give an update, saying they have been involved in the final stages and there is a plan, but no new funding.
Article | Thread
UK NHS apps for Long Covid and ME/CFS The UK government is funding development of apps by the private company Elaros in collaboration with Leeds and other NHS Long Covid services. The ME Association and the clinicians group BACME are collaborating in producing material for the apps, including one for ME/CFS clinics using the as yet unpublished ME Association supported Clinical toolkit and PROMs by Sarah Tyson. Meetings held recently by the MEA and Elaros have been for clinicians only. Elaros are inviting people with ME/CFS and related conditions to beta test the Open-OH app which is available in app stores and provide feedback. Forum members have found serious issues with the contents of the app.
Thread
UK Physios for ME mark six years working together, publication of their book, published and ongoing research, presentations, advocacy and support.
Article | Thread
Dr Michelle Bull, one of the four Physios for ME gave a talk hosted by Sheffeld ME/CFS and FM group at their AGM. "Using national and international best practice to improve services locally with special mention of physiotherapy." Duration 1 hour
Video | Thread
Mitt Eremitage The Swedish patient advocate and forum member Mitt Eremitage has written a thorough and critical article in five parts about a correspondence with the Bateman Horne Center on why their clinical guide includes a recommendation on brain training. Articles are in both English and Swedish versions.
Part 1 l Part 2 l Part 3 l Part 4 l Part 5 l Thread
Long Covid Advocacy The Danger of 'Feeling Safe': Long Covid and the Return of Psychosomatic Medicine
The third article of a brilliant series bringing historical context and critical analysis of the psychosomatic approach to Long Covid and ME/CFS.
Article l Thread
Solve ME Pacing: Power In Slowing Down (EmPOWER M.E. 2025)
A recording of the June 27 EmPower M.E. webinar has been posted on YouTube. A panel discusses pacing which is described as "one of the most talked-about — but often misunderstood — tools in chronic illness management."
Video | Thread
............
Research news and commentary
UK Action for ME: New Research Project: PRIME - Building infrastructure for Patients, Researchers and Industry for ME/CFS
"Started in October 2025, PRIME is funded by the Medical Research Council and is a 4 year project between Action for ME, the University of Edinburgh and the Genetics Centre of Excellence. A total of £843,662.40 will fund all partners' to the application over the 4 years." The aims are to create research collaborations; form international consortia on genetics and molecular biomarkers; and to build a PPI (public and patient involvement) of at least 100 people with ME/CFS and carers as a pool for researchers.
Article | Thread
.............
Research
ME/CFS research
Thesis: University of Surrey
Characterising the Electrophysiological Properties of Cells in Health and Disease — Krista Clarke
"Three candidates of diagnostic biomarkers were identified including ’normalised D value’ following hyperosmotic NaCl incubation, the magnitude of the percentage change in ζ-potential following hyperosmotic NaCl incubation, and the percentage changes in ζ-potential following hyperosmotic mannitol incubation. The latter biomarker performed the best, with a sensitivity and specificity of 92.31 and 71.43 respectively. Combining all three together produces an optimum performing biomarker with a sensitivity of 81.80% and a specificity of 85.70%. These results compare favourably with other biomarkers for ME/CFS."
Article | Thread
Artificial Intelligence in the Life Sciences
Actively protective combinatorial analysis: A scalable novel method for detecting variants that contribute to reduced disease prevalence in high-risk individuals — Sardell et al.
"the actively protective analysis supports the mechanistic hypotheses from our original causative combinatorial analysis for ME/CFS. It also identified several novel genes not identified in that analysis. Importantly, the signatures associated with these genes are associated with reduced rather than increased prevalence of ME/ CFS, especially among individuals who possess multiple causative risk signatures."
Article | Thread
Medical Research Journal
A systematic review of gut microbiota differences in ME/CFS and Long COVID patients — Hanna Tabisz et al.
"In both ME/CFS patients and LCS, an altered gut microbiota has been observed. Some studies have also reported reduced bacterial diversity and abundance compared to healthy individuals."
Article | Thread
Cureus
Nutraceutical Supplementation Effects on Subjective Fatigue Symptoms in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review — Emanuella M. Brito et al.
"This systematic review aims to evaluate and summarize recent evidence on nutrient supplementation and diet-based interventions in patients with ME/CFS sourced from clinical trial registries and article databases."
Article | Thread
Long Covid research
Gastro Hep Advances
Increased Risk of Post-Acute Sequalae of COVID-19 in Patients With Immune-Mediated Inflammatory Diseases — Evangelin Shaloom Vitus et al.
"In this population-based nationwide cohort study of 25,889 IMID patients and 51,778 matched non-IMID individuals, we report a significantly increased risk of developing PASC in patients living with one of the included IMIDs" "only those with [spondyloarthritis], [rheumatoid arthritis], and psoriasis were at a significantly higher risk of PASC."
Article | Thread
Nature Scientific Reports
Protective role of anti-SARS-CoV-2 antibody responses against vital organ related long COVID symptoms — Yukari Magawa et al.
"Collectively, our data demonstrate that LC following predominantly mild COVID-19 presents diverse symptoms affecting major organ systems, including the central nervous, pulmonary and cardiovascular systems. We show that different system-category symptoms are differentially associated with anti-SARS-CoV-2 antibody profiles, both in early convalescence and later, during ongoing LC symptoms, indicating both potentially protective and deleterious effects of anti-SARS-CoV-2 antibodies."
Article | Thread
Frontiers in Immunology
Wuhan strain of SARS-CoV-2 triggers activation of immune evasion machinery similar to the one operated by cancer cells — Abooali et al.
"Here, we report, for the first time, that Wuhan strain of SARSCoV-2 and its spike protein (S) induce activation of hypoxia-inducible factor 1 (HIF-1) transcription complex"
Article | Thread
Nature Scientific Reports
Mapping brain changes in post-COVID-19 cognitive decline via FDG PET hypometabolism and EEG slowing — Manganotti et al.
"The main finding of this study is the identification of significant hypometabolism and EEG slowing in anterior brain regions in patients with persistent subjective cognitive decline after mild COVID-19." "These findings were observed in patients who experienced mild acute COVID-19 that did not require hospitalization or ventilatory support."
Article | Thread
Circulation
Exercise Intolerance and Response to Training in Patients With Postacute Sequelae of SARS-CoV2 (Long COVID): A Scientific Statement From the American Heart Association — William K. Cornwell et al.
Consensus statement promoting exercise therapy. "there is accumulating evidence that cardiovascular deconditioning is a central component of the pathophysiology. This deconditioning results from a relative reduction in physical activity in the setting of the index infection".
The cause of cardiovascular deconditioning in acutely *asymptomatic* cases does not appear to have been considered.
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky