-
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group BACME are collaborating in producing material for the apps, including one for ME/CFS clinics using the as yet unpublished ME Association supported Clinical toolkit and PROMs by Sarah Tyson.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
Week beginning 7th July 2025
News, advocacy and articles
#ThereForME The Tiger Who Came to Tea... and Stayed
An important article by Long Covid Advocacy on severe ME: ".. an inverse relationship occurs in ME. The greater the need, the fewer interventions one receives. The more the illness restricts your daily life, the less one is believed. We see a severity paradox, where injustice escalates fast."
Article l Thread
The Netherlands
David Tuller interview Dutch journalist Sander Zurhake about his recent critical publication concerning CBT in children with ME and long COVID. Zurhake works at the public broadcaster NOS. He explains how much resistance he and his editorial team received from The Dutch Association of Pediatrics for being critical about CBT.
Video | Thread
Sweden Patient advocate and forum member MittEremitage writes about worrying aspects of a lecture series in primary care on post-infectious conditions which is based on the controversial guidelines from the National Board of Health and welfare.
Article l Thread
Hungary
Several months ago, the scientific journal Orvosi Hetilap published new official Hungarian recommendation for the treatment of ME/CFS. However, Orvosi Hetilap received a letter from Jonathan Edwards, professor emeritus at University College London criticising the paper. In their reply, the authors admit that what they wrote in the recommendation does not align with NICE’s latest recommendations, and they no longer recommend the therapies they previously mentioned.
Article | Thread
#MEAction has announced their Severe ME Artists Project for 2025 in recognition of Severe ME Day on August 8th. Anyone who identifies as having severe ME can participate. Submissions are due by July 24.
Article | Thread
USA - Solve ME has an overview of this year's Advocacy Week 2025 on their website. There were a total of 187 meetings with congressional offices, with 226 attendees from across 36 states and Washington, D.C.
Article | Thread
The Sick Times Experts call new Canadian Long COVID guidelines “contradictory” and “deeply concerning”
This article describes problems with the new Long Covid guidelines which include scientifically unsupported therapies such as exercise and cognitive behavioral therapy. Experts say some of these guidelines could harm people with Long COVID.
Article | Thread
.............
Research news and commentary
UK National Institute for Health Research
"The Efficacy and Mechanism Evaluation (EME) Programme is accepting full applications for research looking into the treatment and management of post-acute infection syndromes and associated conditions, including long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)".
Applications close 2nd December 2025. This project is mentioned in a parliamentary written answer.
Information | Thread | Parliamentary answer
Germany
The MIRACLE research project is now recruiting participants. It will investigates immunological, inflammatory, and metabolic pathways in approximately 200 patients with ME/CFS and 200 healthy controls. The project is a collaboration between the University Hospital of Marburg (UKGM) and the University Hospital of Regensburg (UKR).
Article | Thread
The Sick Times Live Blog: Following the Patient-Led Research Fund summer 2025 webinar
Coverage of the July 9 webinar which covered "new findings about the underlying biology of infection-associated chronic conditions (IACCs), as well as discussions about how patient engagement leads to better research."
Blog | Thread
............
Research
ME/CFS research
Plasma cell targeting with the anti-CD38 antibody daratumumab in myalgic encephalomyelitis/chronic fatigue syndrome—a clinical pilot study — Fluge et al.
"We performed a prospective, open-label pilot trial" "Six out of 10 patients experienced clinical improvement during follow-up." "there was a significant correlation between baseline number of NK cells in peripheral blood and clinical improvement"
Article | Thread
Oxidative stress is a shared characteristic of ME/CFS and Long COVID — Shankar et al.
"Using a combination of flow cytometry, RNA-seq, mass spectrometry, and systems chemistry analysis, we observed aberrations in reactive oxygen species (ROS) clearance pathways including elevated glutathione levels, decreases in mitochondrial superoxide dismutase protein levels, and glutathione peroxidase 4–mediated lipid oxidative damage. Strikingly, these redox pathways changes show sex-specific trends."
Article | Thread
Patient-reported treatment outcomes in ME/CFS and long COVID — Eckey et al.
"This study analyzes patient-reported outcomes from over 3,900 individuals, identifying treatments perceived as beneficial and uncovering symptom-based patient subgroups with distinct responses to therapies. Notably, there is significant overlap in the symptom profiles and treatment responses between ME/CFS and long COVID, suggesting that they may share underlying mechanisms."
Article | Thread
SMPDL3B a novel biomarker and therapeutic target in myalgic encephalomyelitis — Rostami-Afshari et al.
"findings suggest that immune dysregulation in ME may be linked to enhanced cleavage of membrane-bound SMPDL3B by PI-PLC." However forum commentary identified that the study may suffer from inadquate matching between patients and controls.
Article | Thread
Comparing DNA Methylation Landscapes in Peripheral Blood from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID Patients — Peppercorn et al.
"A comparative study of the DNA methylation changes in small cohorts of age/sex matched ME/CFS patients and LC patients was compared against similarly matched [healthy controls]."
Article | Thread
Decreased risk of chronic fatigue syndrome following influenza vaccine: a 20-year population-based retrospective study — Chang et al.
Study used a broad definition of CFS. "each cohort comprised 309,692 patients. Over an average follow-up period of approximately 12 years, influenza patients exhibited a significantly increased risk of developing CFS compared to matched controls (aHR = 1.51; 95% CI: 1.48–1.55; p < 0.001)."
Article | Thread
Multifaceted evolution focused on maximal exploitation of domain knowledge for the consensus inference of Gene Regulatory Networks — Segura-Ortiz et al.
"BIO-INSIGHT was applied to gene expression data from patients with fibromyalgia, myalgic encephalomyelitis, and co-diagnosis of both diseases. The inferred networks revealed regulatory interactions specific to each condition, suggesting its clinical utility in biomarker identification and potential therapeutic targets."
Article | Thread
Blood parameters differentiate post COVID-19 condition from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia — Giménez -Orenga et al.
Article | Thread
Long Covid research
Immunological and Clinical Markers of Post-acute Sequelae of COVID-19: Insights from Mild and Severe Cases 6 Months Post-infection — William Mouton et al.
"an indepth analysis of immune parameters in severe patients with and without PASC highlighted that total and N/M-responsive memory T cells from patients with PASC harbored a more terminally differentiated phenotype."
Article | Thread
In Silico Analysis of Post-COVID-19 Condition (PCC) Associated SNP rs9367106 Predicts the Molecular Basis of Abnormalities in the Lungs and Brain Functions — Maiti
"rs9367106 carrying DNA sequences act as distant enhancers and bind with several transcription factors (TFs) including YY1, PPAR-α, IK-1, GR-α, and AP2αA. The G>C transition extensively modifies the RNA structure that may affect the TF bindings and enhancer functions to alter the interactions and functions of these RNA molecules."
Article | Thread
Comprehensive molecular characterization of post-COVID condition: Immunoglobulin suppression and persistent SARS-CoV-2 antigens as key pathophysiological drivers — Seco-Gonzalez et al.
Article | Thread
Validity of the test for attentional performance in neurological post-COVID condition — Seibert et al.
"The TAP subtests identified significant impairments in sustained attention and processing speed in one-third of PCC patients, surpassing traditional tests in sensitivity, and classifying PCC with an AUC of 78%."
Article | Thread
Appropriate Screening Tests to Assess Post-COVID-19 Cognitive Dysfunction in Aeromedical Settings — Solomon G. Beka et al.
"Based on evaluation of literature review findings and Delphi consultation with subject matter experts, the Trail Making Test and Symbol Digit Modalities Test were identified as quick and suitable screening tests likely to detect post-COVID-19 cognitive dysfunction."
Article | Thread
Health economic outcomes and national economic impacts associated with Long COVID in England and Scotland — Kwon et al.
"This study found small improvements in EQ-5D-3L utility score in LC patients receiving care in LC clinics."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
#ThereForME The Tiger Who Came to Tea... and Stayed
An important article by Long Covid Advocacy on severe ME: ".. an inverse relationship occurs in ME. The greater the need, the fewer interventions one receives. The more the illness restricts your daily life, the less one is believed. We see a severity paradox, where injustice escalates fast."
Article l Thread
The Netherlands
David Tuller interview Dutch journalist Sander Zurhake about his recent critical publication concerning CBT in children with ME and long COVID. Zurhake works at the public broadcaster NOS. He explains how much resistance he and his editorial team received from The Dutch Association of Pediatrics for being critical about CBT.
Video | Thread
Sweden Patient advocate and forum member MittEremitage writes about worrying aspects of a lecture series in primary care on post-infectious conditions which is based on the controversial guidelines from the National Board of Health and welfare.
Article l Thread
Hungary
Several months ago, the scientific journal Orvosi Hetilap published new official Hungarian recommendation for the treatment of ME/CFS. However, Orvosi Hetilap received a letter from Jonathan Edwards, professor emeritus at University College London criticising the paper. In their reply, the authors admit that what they wrote in the recommendation does not align with NICE’s latest recommendations, and they no longer recommend the therapies they previously mentioned.
Article | Thread
#MEAction has announced their Severe ME Artists Project for 2025 in recognition of Severe ME Day on August 8th. Anyone who identifies as having severe ME can participate. Submissions are due by July 24.
Article | Thread
USA - Solve ME has an overview of this year's Advocacy Week 2025 on their website. There were a total of 187 meetings with congressional offices, with 226 attendees from across 36 states and Washington, D.C.
Article | Thread
The Sick Times Experts call new Canadian Long COVID guidelines “contradictory” and “deeply concerning”
This article describes problems with the new Long Covid guidelines which include scientifically unsupported therapies such as exercise and cognitive behavioral therapy. Experts say some of these guidelines could harm people with Long COVID.
Article | Thread
.............
Research news and commentary
UK National Institute for Health Research
"The Efficacy and Mechanism Evaluation (EME) Programme is accepting full applications for research looking into the treatment and management of post-acute infection syndromes and associated conditions, including long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)".
Applications close 2nd December 2025. This project is mentioned in a parliamentary written answer.
Information | Thread | Parliamentary answer
Germany
The MIRACLE research project is now recruiting participants. It will investigates immunological, inflammatory, and metabolic pathways in approximately 200 patients with ME/CFS and 200 healthy controls. The project is a collaboration between the University Hospital of Marburg (UKGM) and the University Hospital of Regensburg (UKR).
Article | Thread
The Sick Times Live Blog: Following the Patient-Led Research Fund summer 2025 webinar
Coverage of the July 9 webinar which covered "new findings about the underlying biology of infection-associated chronic conditions (IACCs), as well as discussions about how patient engagement leads to better research."
Blog | Thread
............
Research
ME/CFS research
Plasma cell targeting with the anti-CD38 antibody daratumumab in myalgic encephalomyelitis/chronic fatigue syndrome—a clinical pilot study — Fluge et al.
"We performed a prospective, open-label pilot trial" "Six out of 10 patients experienced clinical improvement during follow-up." "there was a significant correlation between baseline number of NK cells in peripheral blood and clinical improvement"
Article | Thread
Oxidative stress is a shared characteristic of ME/CFS and Long COVID — Shankar et al.
"Using a combination of flow cytometry, RNA-seq, mass spectrometry, and systems chemistry analysis, we observed aberrations in reactive oxygen species (ROS) clearance pathways including elevated glutathione levels, decreases in mitochondrial superoxide dismutase protein levels, and glutathione peroxidase 4–mediated lipid oxidative damage. Strikingly, these redox pathways changes show sex-specific trends."
Article | Thread
Patient-reported treatment outcomes in ME/CFS and long COVID — Eckey et al.
"This study analyzes patient-reported outcomes from over 3,900 individuals, identifying treatments perceived as beneficial and uncovering symptom-based patient subgroups with distinct responses to therapies. Notably, there is significant overlap in the symptom profiles and treatment responses between ME/CFS and long COVID, suggesting that they may share underlying mechanisms."
Article | Thread
SMPDL3B a novel biomarker and therapeutic target in myalgic encephalomyelitis — Rostami-Afshari et al.
"findings suggest that immune dysregulation in ME may be linked to enhanced cleavage of membrane-bound SMPDL3B by PI-PLC." However forum commentary identified that the study may suffer from inadquate matching between patients and controls.
Article | Thread
Comparing DNA Methylation Landscapes in Peripheral Blood from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID Patients — Peppercorn et al.
"A comparative study of the DNA methylation changes in small cohorts of age/sex matched ME/CFS patients and LC patients was compared against similarly matched [healthy controls]."
Article | Thread
Decreased risk of chronic fatigue syndrome following influenza vaccine: a 20-year population-based retrospective study — Chang et al.
Study used a broad definition of CFS. "each cohort comprised 309,692 patients. Over an average follow-up period of approximately 12 years, influenza patients exhibited a significantly increased risk of developing CFS compared to matched controls (aHR = 1.51; 95% CI: 1.48–1.55; p < 0.001)."
Article | Thread
Multifaceted evolution focused on maximal exploitation of domain knowledge for the consensus inference of Gene Regulatory Networks — Segura-Ortiz et al.
"BIO-INSIGHT was applied to gene expression data from patients with fibromyalgia, myalgic encephalomyelitis, and co-diagnosis of both diseases. The inferred networks revealed regulatory interactions specific to each condition, suggesting its clinical utility in biomarker identification and potential therapeutic targets."
Article | Thread
Blood parameters differentiate post COVID-19 condition from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia — Giménez -Orenga et al.
Article | Thread
Long Covid research
Immunological and Clinical Markers of Post-acute Sequelae of COVID-19: Insights from Mild and Severe Cases 6 Months Post-infection — William Mouton et al.
"an indepth analysis of immune parameters in severe patients with and without PASC highlighted that total and N/M-responsive memory T cells from patients with PASC harbored a more terminally differentiated phenotype."
Article | Thread
In Silico Analysis of Post-COVID-19 Condition (PCC) Associated SNP rs9367106 Predicts the Molecular Basis of Abnormalities in the Lungs and Brain Functions — Maiti
"rs9367106 carrying DNA sequences act as distant enhancers and bind with several transcription factors (TFs) including YY1, PPAR-α, IK-1, GR-α, and AP2αA. The G>C transition extensively modifies the RNA structure that may affect the TF bindings and enhancer functions to alter the interactions and functions of these RNA molecules."
Article | Thread
Comprehensive molecular characterization of post-COVID condition: Immunoglobulin suppression and persistent SARS-CoV-2 antigens as key pathophysiological drivers — Seco-Gonzalez et al.
Article | Thread
Validity of the test for attentional performance in neurological post-COVID condition — Seibert et al.
"The TAP subtests identified significant impairments in sustained attention and processing speed in one-third of PCC patients, surpassing traditional tests in sensitivity, and classifying PCC with an AUC of 78%."
Article | Thread
Appropriate Screening Tests to Assess Post-COVID-19 Cognitive Dysfunction in Aeromedical Settings — Solomon G. Beka et al.
"Based on evaluation of literature review findings and Delphi consultation with subject matter experts, the Trail Making Test and Symbol Digit Modalities Test were identified as quick and suitable screening tests likely to detect post-COVID-19 cognitive dysfunction."
Article | Thread
Health economic outcomes and national economic impacts associated with Long COVID in England and Scotland — Kwon et al.
"This study found small improvements in EQ-5D-3L utility score in LC patients receiving care in LC clinics."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 14th July 2025
News
UWV (Netherlands)
The UWV benefits agency wrongly told several patients with ME/CFS that they could work a large part of the week or full-time. The Central Appeals Tribunal (CRvB) concluded this in an interim ruling.
Article | Thread
Bateman Horne Center (BHC) has removed a controversial recommendation of brain retraining from their clinical guide thanks to the efforts from among others patient advocate and forum member Mitt Eremitage. In a correspondence with Mitt Eremitage BHC writes: "In discussion with the broader lived-experience community identifying controversy surrounding the term neuroplasticity and expressing concern for potential confusion, misinterpretation, or harm, this mention has been removed from the Guide." The full correspondence is shared on Mitt Eremitage's blog.
Article l Thread
.............
Research news and commentary
PNAS Growing recognition of post-acute infection syndromes
Commentary article by Anthony L. Komaroff on background of the Eckey et al study "Patient-reported treatment outcomes in ME/CFS and long COVID". Komaroff provides general information on ME/CFS, LC, PAIS and IACIs.
Article l Thread
Trial by Error by David Tuller Oxford Scholars Blame Biomedical Research Hegemony for Fibromyalgia "Chronicity Rhetoric"
A critical look at a paper based on field notes and interviews with health care providers with a "biopsychosical" approach to chronic illnesses as fibromyalgia. Tuller comments: "Qualitative research fulfills important functions, but being able to reach definitive conclusions about the effectiveness of interventions is not among them."
Article l Thread
ZonMw (Netherlands)
The research agency ZonMw announced a list of new Long Covid studies that will receive funding. The total budget was approximately €6 million. One study led by Dr. Rob Wüst will study immune cell infiltration on muscle tissue and mast cell activation during post-exertional malaise.
Article | Thread
............
Research
ME/CFS research
Brain and muscle chemistry in myalgic encephalitis/chronic fatigue syndrome (ME/CFS) and long COVID: a 7T magnetic resonance spectroscopy study — Godlewska et al.
"ME/CFS patients had elevated levels of lactate in both pgACC and dACC, while long COVID patients had lowered levels of total choline in dACC." "skeletal muscle metabolites at rest did not significantly differ between the groups."
Article | Thread
Assessment of the Gut Microbiome in Patients with Coexisting Irritable Bowel Syndrome and Chronic Fatigue Syndrome — Chojnacki et al.
"Women with IBS and coexisting CFS exhibit distinct gut microbiota and tryptophan metabolite profiles compared to those without fatigue."
Article | Thread
Frustrated, but Motivated: Insights from People with ME/CFS — Rathmann et al.
"This analysis emphasized that people with ME/CFS have important first-hand knowledge to contribute to the field. Although many are frustrated with the state of research and their clinical interactions, they remain committed to working toward solutions."
Article | Thread
Long Covid research
REGAIN: a randomized controlled clinical trial of oxaloacetate: for improving the symptoms of long COVID — Vernon et al.
"The primary outcome was fatigue reduction, measured by the Chalder Fatigue Questionnaire (CFQ)." "No significant difference in the CFQ-measured fatigue reduction was observed between the groups."
Article | Thread
A data-mining analysis of host solute carrier family proteins in SARS-CoV-2 infection with reference to brain endothelial cells and the blood-brain barrier in COVID-19 — Fradkin and Schmidt-Kastner
"the present hypothesis-generating work set out to analyze data for SLCs as important transporters at the BBB. By combining virus-host protein–protein interaction data and transcriptomics data for brain endothelial cells, a set of n = 80 host SLCs was prioritized for analysis. Amino acid transporters formed the largest group of SLCs involved."
Article | Thread
YKL-40 as a biomarker for long-term changes in innate immunity after COVID-19 onset — Sheng
"our study reveals a long-term change in YKL-40 expression in monocyte-derived macrophages in COVID-19 convalescent individuals, where the strongest correlation is detected for neurological symptoms. Given the importance of monocytes/macrophages system, YKL-40 may become a potential marker for the long-term dysregulation of the innate immune system."
Thesis | Thread
Single-cell RNA-sequencing highlights a curtailed NK cell function in convalescent COVID-19 pregnant women — Salker et al.
"In this report, using multi-color flow cytometry and scRNA-seq based on two different geographical (one high-income and one low-middle-income country setting) cohorts, we identified a highly detailed immune fingerprint during SARS-CoV-2 infection and in post-COVID-19 pregnant women."
Article | Thread
Long COVID is associated with female sex; Anti-NCAM1 autoantibodies are absent in patients with long COVID — Motokawa et al.
"Neural cell adhesion molecule 1 (NCAM1) is the human protein with the highest sequence homology to the SARS-CoV-2 proteins. Previous in silico studies indicate that SARS-CoV-2 infection may induce the production of anti-NCAM1 autoantibodies." "Anti-NCAM1 autoantibodies were not detected in any serum sample."
Article | Thread
Profiles of Individuals With Long COVID Reporting Persistent Cognitive Complaints — Cabello Fernandez et al.
"We found that most patients presented poor cognitive performance, at a level that is statistically very infrequent in the general population, mainly in the attentional and executive domains; some also showed memory problems. Importantly, the poorest performance correlated with self-reported complaints on questionnaires."
Article | Thread
Post-COVID-19 Condition in Track and Field Master Athletes: Severity, Symptoms, and Associations With Quality of Life and C-Reactive Protein Levels — Boyi Zhang et al.
"Post-COVID-19 condition is associated with reduced quality of life in track and field masters athletes, independent of sex, prior competition levels, and training characteristics."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
News
UWV (Netherlands)
The UWV benefits agency wrongly told several patients with ME/CFS that they could work a large part of the week or full-time. The Central Appeals Tribunal (CRvB) concluded this in an interim ruling.
Article | Thread
Bateman Horne Center (BHC) has removed a controversial recommendation of brain retraining from their clinical guide thanks to the efforts from among others patient advocate and forum member Mitt Eremitage. In a correspondence with Mitt Eremitage BHC writes: "In discussion with the broader lived-experience community identifying controversy surrounding the term neuroplasticity and expressing concern for potential confusion, misinterpretation, or harm, this mention has been removed from the Guide." The full correspondence is shared on Mitt Eremitage's blog.
Article l Thread
.............
Research news and commentary
PNAS Growing recognition of post-acute infection syndromes
Commentary article by Anthony L. Komaroff on background of the Eckey et al study "Patient-reported treatment outcomes in ME/CFS and long COVID". Komaroff provides general information on ME/CFS, LC, PAIS and IACIs.
Article l Thread
Trial by Error by David Tuller Oxford Scholars Blame Biomedical Research Hegemony for Fibromyalgia "Chronicity Rhetoric"
A critical look at a paper based on field notes and interviews with health care providers with a "biopsychosical" approach to chronic illnesses as fibromyalgia. Tuller comments: "Qualitative research fulfills important functions, but being able to reach definitive conclusions about the effectiveness of interventions is not among them."
Article l Thread
ZonMw (Netherlands)
The research agency ZonMw announced a list of new Long Covid studies that will receive funding. The total budget was approximately €6 million. One study led by Dr. Rob Wüst will study immune cell infiltration on muscle tissue and mast cell activation during post-exertional malaise.
Article | Thread
............
Research
ME/CFS research
Brain and muscle chemistry in myalgic encephalitis/chronic fatigue syndrome (ME/CFS) and long COVID: a 7T magnetic resonance spectroscopy study — Godlewska et al.
"ME/CFS patients had elevated levels of lactate in both pgACC and dACC, while long COVID patients had lowered levels of total choline in dACC." "skeletal muscle metabolites at rest did not significantly differ between the groups."
Article | Thread
Assessment of the Gut Microbiome in Patients with Coexisting Irritable Bowel Syndrome and Chronic Fatigue Syndrome — Chojnacki et al.
"Women with IBS and coexisting CFS exhibit distinct gut microbiota and tryptophan metabolite profiles compared to those without fatigue."
Article | Thread
Frustrated, but Motivated: Insights from People with ME/CFS — Rathmann et al.
"This analysis emphasized that people with ME/CFS have important first-hand knowledge to contribute to the field. Although many are frustrated with the state of research and their clinical interactions, they remain committed to working toward solutions."
Article | Thread
Long Covid research
REGAIN: a randomized controlled clinical trial of oxaloacetate: for improving the symptoms of long COVID — Vernon et al.
"The primary outcome was fatigue reduction, measured by the Chalder Fatigue Questionnaire (CFQ)." "No significant difference in the CFQ-measured fatigue reduction was observed between the groups."
Article | Thread
A data-mining analysis of host solute carrier family proteins in SARS-CoV-2 infection with reference to brain endothelial cells and the blood-brain barrier in COVID-19 — Fradkin and Schmidt-Kastner
"the present hypothesis-generating work set out to analyze data for SLCs as important transporters at the BBB. By combining virus-host protein–protein interaction data and transcriptomics data for brain endothelial cells, a set of n = 80 host SLCs was prioritized for analysis. Amino acid transporters formed the largest group of SLCs involved."
Article | Thread
YKL-40 as a biomarker for long-term changes in innate immunity after COVID-19 onset — Sheng
"our study reveals a long-term change in YKL-40 expression in monocyte-derived macrophages in COVID-19 convalescent individuals, where the strongest correlation is detected for neurological symptoms. Given the importance of monocytes/macrophages system, YKL-40 may become a potential marker for the long-term dysregulation of the innate immune system."
Thesis | Thread
Single-cell RNA-sequencing highlights a curtailed NK cell function in convalescent COVID-19 pregnant women — Salker et al.
"In this report, using multi-color flow cytometry and scRNA-seq based on two different geographical (one high-income and one low-middle-income country setting) cohorts, we identified a highly detailed immune fingerprint during SARS-CoV-2 infection and in post-COVID-19 pregnant women."
Article | Thread
Long COVID is associated with female sex; Anti-NCAM1 autoantibodies are absent in patients with long COVID — Motokawa et al.
"Neural cell adhesion molecule 1 (NCAM1) is the human protein with the highest sequence homology to the SARS-CoV-2 proteins. Previous in silico studies indicate that SARS-CoV-2 infection may induce the production of anti-NCAM1 autoantibodies." "Anti-NCAM1 autoantibodies were not detected in any serum sample."
Article | Thread
Profiles of Individuals With Long COVID Reporting Persistent Cognitive Complaints — Cabello Fernandez et al.
"We found that most patients presented poor cognitive performance, at a level that is statistically very infrequent in the general population, mainly in the attentional and executive domains; some also showed memory problems. Importantly, the poorest performance correlated with self-reported complaints on questionnaires."
Article | Thread
Post-COVID-19 Condition in Track and Field Master Athletes: Severity, Symptoms, and Associations With Quality of Life and C-Reactive Protein Levels — Boyi Zhang et al.
"Post-COVID-19 condition is associated with reduced quality of life in track and field masters athletes, independent of sex, prior competition levels, and training characteristics."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 21st July 2025
Part 1 of 2
News, advocacy and articles
UK Courts and Tribunals Judiciary (trigger warning - suicide)
Sarah-Jayne Lewis: Prevention of Future Deaths Report by coroner Debbie Rookes
"In my opinion there is a risk that future deaths will occur unless action is taken."
Concerns raised included inconsistent service provision around the country, and lack of research, understanding of the illness, medical education and adherence to the 2021 ME/CFS NICE guideline.
"I was told that there is still a belief by some that ME is not real and this has a profoundly negative effect on sufferers and their ability to seek support."
Report | Thread
Trial by Error by David Tuller
BMJ's "Commissioned" Propaganda Piece Hijacked Death of Maeve Boothby O´Neill; Boothby O´Neill's Mum Responds
On BMJ as an unfortunate mouthpiece of the biospychosocial brigade which among others in some articles has wrongly referenced Maeve Boothby O'Neill's death following severe ME. Her mother, Sarah Boothby has submitted two rapid responses to one of these articles, but they have not appeared in the journal. Tuller has posted her comment in full in his article.
Article l Thread
After ME-Related Suicide, Second Coroner in England Issues "Report to Prevent Future Deaths"
A coroner has called out the shortage of services for severe ME and outlined five "matters of concerns" after an inquest into severe ME sufferer Sarah Jayne Lewis's death 8th August 2024. (See item above).
Article l Thread
UK DWP benefit assessor training Challenging Harmful and Out-of-Date DWP Training on M.E./C.F.S. by Sally Callow
Sally Callow has obtained using Freedom of Information a copy of the DWP document dated 2023 used for training health care professionals who conduct assessments of benefit applicants with ME/CFS. The article includes a letter of complaint to the Secretary of State for Health and Social Care.
"The document promotes an outdated and discredited biopsychosocial view of M.E./C.F.S., contains information that directly contradicts the 2021 NICE guideline (NG206), and encourages assessors to doubt the physical reality of symptoms."
Article | DWP document | Thread
EMEA
GraceMarie Bricalli, President of the European ME Alliance, shared her insights on ME/CFS and the urgent need for recognition and support in the podcast 'Invisible Battles: The Unseen Realities of Neurological Conditions'.
Podcast | Thread
Germany
The German Neurological Society made a controversial statement on ME/CFS, arguing that future research approaches should not focus primarily on immunological explanations but that approaches from other areas of medicine, including the field of mental and psychosomatic illnesses and functional disorders, should be included as well.
Article | Thread
Podcast The Irish radio program Joe Finnegan Show speaks to retired paediatrician Nigel Speight and Shirley McCreery who cares for her daughter Sarah with ME. There is also a short article with a summary of the McCreery family's experience: "We find the medical professionals don't have very good understanding about ME. There's still a lot of that old kind of thing of just push yourself through it and you'll be fine..."
Podcast l Article l Thread
............
UK Government Delivery Plan for ME/CFS
The long delayed delivery plan was published on 22nd July.
Topics covered: Research, Attitudes and education and Living with ME/CFS. No new money has been allocated. Forum members are dismayed by the missed opportunity to provide specialist medical care, particularly for the more severely affected, and no allocated new funding.
Delivery Plan | Press Release | Thread
Media
The Times "Doctors to be trained on ME in NHS plan to transform care"
The Times "My daughter died from ME. This new plan fails her and others like her" by Sean O'Neill
Yahoo news "Government pledges to 'transform care' for people with ME"
The Independent "ME care reforms promised after woman's tragic death"
BBC Breakfast TV interviewed Sarah Boothby and Dr Binita Kane
Channel 4 news with Dr Kane, Sajid Javid and patient Nick Benton.
ME/CFS organisations
Action for ME statement welcomes parts of the plan but details multiple shortcomings. "Once again, it feels like people with ME have been ignored."
ME Association statement also welcomes parts of the plan but points to 'several key areas where the plan has failed to deliver' including almost nothing on severe and very severe ME/CFS. 'The Plan’s Living with ME section focuses heavily on return-to-work pathways but does not address the fear and distress caused by welfare reforms.'
ME Research UK statement focuses on the research section. 'Much of what is written is long on justification and support but short on both money and concrete actions.'
#ThereForME say the plan does not go far enough: 'This is about more than words on paper: it is about the people lying bedbound in darkened rooms across this country, who desperately need safe NHS care and research to accelerate treatments.'
Clinicians
BACME (British Association of Clinicians in ME/CFS) were involved in the development of the delivery plan, say it doesn't go far enough. Their statement supports existing services continuing, with the addition of more medical specialists.
Pulse Today "GP's to support delivery of ME/CFS care under new NHS plan"
Medscape News UK reports areas the plan covers and repeats some of Action for ME's criticisms.
.............
Research news and commentary
ME Research UK Funding announced
Dr Sarah Annesley and colleagues at La Trobe University in Melbourne, Australia will investigate the question "Do microRNAs regulate platelet activation and metabolic dysfunction in women with ME/CFS?"
Announcement | Thread
Invest in ME
The videos of all of the presentations at the 17th Invest in ME conference which took place on 30 May 2025, have been made available to rewatch online.
Videos | Thread
..............
Go to the next post for the research section.
Part 1 of 2
News, advocacy and articles
UK Courts and Tribunals Judiciary (trigger warning - suicide)
Sarah-Jayne Lewis: Prevention of Future Deaths Report by coroner Debbie Rookes
"In my opinion there is a risk that future deaths will occur unless action is taken."
Concerns raised included inconsistent service provision around the country, and lack of research, understanding of the illness, medical education and adherence to the 2021 ME/CFS NICE guideline.
"I was told that there is still a belief by some that ME is not real and this has a profoundly negative effect on sufferers and their ability to seek support."
Report | Thread
Trial by Error by David Tuller
BMJ's "Commissioned" Propaganda Piece Hijacked Death of Maeve Boothby O´Neill; Boothby O´Neill's Mum Responds
On BMJ as an unfortunate mouthpiece of the biospychosocial brigade which among others in some articles has wrongly referenced Maeve Boothby O'Neill's death following severe ME. Her mother, Sarah Boothby has submitted two rapid responses to one of these articles, but they have not appeared in the journal. Tuller has posted her comment in full in his article.
Article l Thread
After ME-Related Suicide, Second Coroner in England Issues "Report to Prevent Future Deaths"
A coroner has called out the shortage of services for severe ME and outlined five "matters of concerns" after an inquest into severe ME sufferer Sarah Jayne Lewis's death 8th August 2024. (See item above).
Article l Thread
UK DWP benefit assessor training Challenging Harmful and Out-of-Date DWP Training on M.E./C.F.S. by Sally Callow
Sally Callow has obtained using Freedom of Information a copy of the DWP document dated 2023 used for training health care professionals who conduct assessments of benefit applicants with ME/CFS. The article includes a letter of complaint to the Secretary of State for Health and Social Care.
"The document promotes an outdated and discredited biopsychosocial view of M.E./C.F.S., contains information that directly contradicts the 2021 NICE guideline (NG206), and encourages assessors to doubt the physical reality of symptoms."
Article | DWP document | Thread
EMEA
GraceMarie Bricalli, President of the European ME Alliance, shared her insights on ME/CFS and the urgent need for recognition and support in the podcast 'Invisible Battles: The Unseen Realities of Neurological Conditions'.
Podcast | Thread
Germany
The German Neurological Society made a controversial statement on ME/CFS, arguing that future research approaches should not focus primarily on immunological explanations but that approaches from other areas of medicine, including the field of mental and psychosomatic illnesses and functional disorders, should be included as well.
Article | Thread
Podcast The Irish radio program Joe Finnegan Show speaks to retired paediatrician Nigel Speight and Shirley McCreery who cares for her daughter Sarah with ME. There is also a short article with a summary of the McCreery family's experience: "We find the medical professionals don't have very good understanding about ME. There's still a lot of that old kind of thing of just push yourself through it and you'll be fine..."
Podcast l Article l Thread
............
UK Government Delivery Plan for ME/CFS
The long delayed delivery plan was published on 22nd July.
Topics covered: Research, Attitudes and education and Living with ME/CFS. No new money has been allocated. Forum members are dismayed by the missed opportunity to provide specialist medical care, particularly for the more severely affected, and no allocated new funding.
Delivery Plan | Press Release | Thread
Media
The Times "Doctors to be trained on ME in NHS plan to transform care"
The Times "My daughter died from ME. This new plan fails her and others like her" by Sean O'Neill
Yahoo news "Government pledges to 'transform care' for people with ME"
The Independent "ME care reforms promised after woman's tragic death"
BBC Breakfast TV interviewed Sarah Boothby and Dr Binita Kane
Channel 4 news with Dr Kane, Sajid Javid and patient Nick Benton.
ME/CFS organisations
Action for ME statement welcomes parts of the plan but details multiple shortcomings. "Once again, it feels like people with ME have been ignored."
ME Association statement also welcomes parts of the plan but points to 'several key areas where the plan has failed to deliver' including almost nothing on severe and very severe ME/CFS. 'The Plan’s Living with ME section focuses heavily on return-to-work pathways but does not address the fear and distress caused by welfare reforms.'
ME Research UK statement focuses on the research section. 'Much of what is written is long on justification and support but short on both money and concrete actions.'
#ThereForME say the plan does not go far enough: 'This is about more than words on paper: it is about the people lying bedbound in darkened rooms across this country, who desperately need safe NHS care and research to accelerate treatments.'
Clinicians
BACME (British Association of Clinicians in ME/CFS) were involved in the development of the delivery plan, say it doesn't go far enough. Their statement supports existing services continuing, with the addition of more medical specialists.
Pulse Today "GP's to support delivery of ME/CFS care under new NHS plan"
Medscape News UK reports areas the plan covers and repeats some of Action for ME's criticisms.
.............
Research news and commentary
ME Research UK Funding announced
Dr Sarah Annesley and colleagues at La Trobe University in Melbourne, Australia will investigate the question "Do microRNAs regulate platelet activation and metabolic dysfunction in women with ME/CFS?"
Announcement | Thread
Invest in ME
The videos of all of the presentations at the 17th Invest in ME conference which took place on 30 May 2025, have been made available to rewatch online.
Videos | Thread
..............
Go to the next post for the research section.
Week beginning 21st July 2025
Part 2 of 2
Research
ME/CFS research
AI-driven multi-omics modeling of myalgic encephalomyelitis/chronic fatigue syndrome — Xiong et al.
"Taken together, our dataset uncovers an array of correlations that although not causal, can further our understanding of ME/CFS" "the nuanced insights and deconstructed approach described here offer numerous hypotheses for dysbiotic microbiome–metabolome–immune connections in ME/CFS."
Article | Thread
Heightened innate immunity may trigger chronic inflammation, fatigue and post-exertional malaise in ME/CFS — Xiaoyu Che et al.
"We report here a multi-omics analysis in patients with ME/CFS and healthy controls (HC), before and 24 hours after exercise"
Preprint | Thread
Steroid dynamics in myalgic encephalomyelitis / chronic fatigue syndrome: a case-control study using ultra performance supercritical fluid chromatography tandem mass spectrometry — Thomas et al.
"No significant differences in absolute steroid levels were observed between the ME/CFS and control groups, either in the combined cohort or within gender-stratified groups."
Article | Thread
Elevated risk of new-onset chronic fatigue syndrome/myalgic encephalomyelitis up to four years after SARS-CoV-2 infection — Hadidchi et al.
"COVID+ patients consisted of those who tested positive at least once and index date was defined as date of first positive test. COVID− patients consisted of those who never tested positive and index date was defined as date of first negative test."
Article | Thread
Beneficial effects of intermittent intravenous saline infusion in dysautonomic patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: a caseseries — Sjogren et al.
"we were not able to detect any sustainable effects and with limited improvements in objective measures."
Article | Thread
Long Covid research
Associations between lung and endothelial function in long COVID: Two years after acute infection — Carvalho et al.
"More than two years after recovery from COVID-19 infection, we observed changes in endothelial function" "Our main objective showed that with linear regression the [carbon monoxide transfer coefficient] indicates that it alone influences 29% of the response to the basal diameter"
Article | Thread
Possible long COVID biomarker: identification of SARC-CoV-2 related protein(s) in Serum Extracellular Vesicles — Abbasi et al.
"we detected 65 unique SARS-CoV-2 peptides mapping to the replicase polyprotein 1ab" "our targeted analysis confirmed the presence of the Pp1ab peptide in at least one sample in all long COVID subjects, while absent in controls."
Article | Thread
Diagnosis and Management of Long COVID in Children and Adolescents: An Update after 5 Years of Clinical and Research Experience — Nadendla et al.
"Pediatric patients commonly experience fatigue, cognitive dysfunction, orthostatic intolerance, and conditions such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and mast cell activation syndrome (MCAS), often with overlapping presentations."
Article | Thread
‘Most People with Long COVID Are Their Own Doctors’: Self-Tracking and Online Patient Groups as Pathways to Challenging Epistemic Injustice — Sazana Jayadeva and Deborah Lupton
"Epistemic justice for people with Long COVID and other contested illnesses will never be fully achieved until the medical profession can develop greater epistemic humility and takes steps to redress testimonial and hermeneutical injustice."
Article | Thread
Insights on the neurocognitive mechanisms underlying hippocampus-dependent memory impairment in COVID-19 — Meyer and Zaiser
"Our cognitive test battery covered alertness, executive functions, and episodic long-term memory. Our results demonstrate a pronounced and selective impairment of individuals previously infected in a mnemonic discrimination task known to engage hippocampusdependent pattern separation."
Article | Thread
Persistence of fatigue in the absence of pathophysiological mechanisms in some patients more than 2 years after the original SARS-CoV-2 infection — Giovanni Baldassarre et al.
"More than 2 years after the original SARS-CoV-2 infection, a discrepancy was observed between the persistence of debilitating symptoms of fatigue/exercise intolerance and the absence of several investigated pathophysiological mechanisms. The discrepancy may be due to factors that remain to be elucidated"
Article | Thread
A randomized comparative feasibility study of neuromodulation and cognitive training for post-COVID fatigue — Oliver-Mas et al.
"This randomized parallel study aimed to evaluate the effects of transcranial direct current stimulation (tDCS) over the primary motor cortex combined with cognitive training (M1 + CT), compared to tDCS over the dorsolateral prefrontal cortex with cognitive training (DLPFC + CT), on fatigue, cognition, and other clinical symptoms in post-COVID."
Article | Thread
Cognitive Performance Fatigability, Perceived Fatigability, and Trait Fatigue in Post-COVID-19 Condition: A Cross-Sectional Study — Andersson et al
"Thirty-four individuals with PCC and 36 controls who recovered from COVID-19 without PCC performed cognitive tests repeated twice during the test session to assess performance fatigability. Self-reports were used to assess perceived fatigability" "The PCC group exhibited performance fatigability in measures of processing speed."
Article | Thread
Accelerated brain ageing during the COVID-19 pandemic — Mohammadi-Nejad et al.
"We investigate the pandemic’s impact on brain ageing using longitudinal neuroimaging data from the UK Biobank." "The Pandemic group shows on average 5.5-month higher deviation of brain age gap at the second time point compared with controls."
Article | Thread
Long COVID and its associations with burnout, anxiety, and depression among U. S. healthcare workers in the United States — Vu et al.
"our findings emphasize that Long COVID—rather than prior COVID-19 experience alone—is significant associated and with elevated levels of burnout and mental health challenges observed among healthcare workers. These results emphasize the continued impact of Long COVID poses for healthcare workers, even as the acute phase of the pandemic recedes."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Part 2 of 2
Research
ME/CFS research
AI-driven multi-omics modeling of myalgic encephalomyelitis/chronic fatigue syndrome — Xiong et al.
"Taken together, our dataset uncovers an array of correlations that although not causal, can further our understanding of ME/CFS" "the nuanced insights and deconstructed approach described here offer numerous hypotheses for dysbiotic microbiome–metabolome–immune connections in ME/CFS."
Article | Thread
Heightened innate immunity may trigger chronic inflammation, fatigue and post-exertional malaise in ME/CFS — Xiaoyu Che et al.
"We report here a multi-omics analysis in patients with ME/CFS and healthy controls (HC), before and 24 hours after exercise"
Preprint | Thread
Steroid dynamics in myalgic encephalomyelitis / chronic fatigue syndrome: a case-control study using ultra performance supercritical fluid chromatography tandem mass spectrometry — Thomas et al.
"No significant differences in absolute steroid levels were observed between the ME/CFS and control groups, either in the combined cohort or within gender-stratified groups."
Article | Thread
Elevated risk of new-onset chronic fatigue syndrome/myalgic encephalomyelitis up to four years after SARS-CoV-2 infection — Hadidchi et al.
"COVID+ patients consisted of those who tested positive at least once and index date was defined as date of first positive test. COVID− patients consisted of those who never tested positive and index date was defined as date of first negative test."
Article | Thread
Beneficial effects of intermittent intravenous saline infusion in dysautonomic patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: a caseseries — Sjogren et al.
"we were not able to detect any sustainable effects and with limited improvements in objective measures."
Article | Thread
Long Covid research
Associations between lung and endothelial function in long COVID: Two years after acute infection — Carvalho et al.
"More than two years after recovery from COVID-19 infection, we observed changes in endothelial function" "Our main objective showed that with linear regression the [carbon monoxide transfer coefficient] indicates that it alone influences 29% of the response to the basal diameter"
Article | Thread
Possible long COVID biomarker: identification of SARC-CoV-2 related protein(s) in Serum Extracellular Vesicles — Abbasi et al.
"we detected 65 unique SARS-CoV-2 peptides mapping to the replicase polyprotein 1ab" "our targeted analysis confirmed the presence of the Pp1ab peptide in at least one sample in all long COVID subjects, while absent in controls."
Article | Thread
Diagnosis and Management of Long COVID in Children and Adolescents: An Update after 5 Years of Clinical and Research Experience — Nadendla et al.
"Pediatric patients commonly experience fatigue, cognitive dysfunction, orthostatic intolerance, and conditions such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and mast cell activation syndrome (MCAS), often with overlapping presentations."
Article | Thread
‘Most People with Long COVID Are Their Own Doctors’: Self-Tracking and Online Patient Groups as Pathways to Challenging Epistemic Injustice — Sazana Jayadeva and Deborah Lupton
"Epistemic justice for people with Long COVID and other contested illnesses will never be fully achieved until the medical profession can develop greater epistemic humility and takes steps to redress testimonial and hermeneutical injustice."
Article | Thread
Insights on the neurocognitive mechanisms underlying hippocampus-dependent memory impairment in COVID-19 — Meyer and Zaiser
"Our cognitive test battery covered alertness, executive functions, and episodic long-term memory. Our results demonstrate a pronounced and selective impairment of individuals previously infected in a mnemonic discrimination task known to engage hippocampusdependent pattern separation."
Article | Thread
Persistence of fatigue in the absence of pathophysiological mechanisms in some patients more than 2 years after the original SARS-CoV-2 infection — Giovanni Baldassarre et al.
"More than 2 years after the original SARS-CoV-2 infection, a discrepancy was observed between the persistence of debilitating symptoms of fatigue/exercise intolerance and the absence of several investigated pathophysiological mechanisms. The discrepancy may be due to factors that remain to be elucidated"
Article | Thread
A randomized comparative feasibility study of neuromodulation and cognitive training for post-COVID fatigue — Oliver-Mas et al.
"This randomized parallel study aimed to evaluate the effects of transcranial direct current stimulation (tDCS) over the primary motor cortex combined with cognitive training (M1 + CT), compared to tDCS over the dorsolateral prefrontal cortex with cognitive training (DLPFC + CT), on fatigue, cognition, and other clinical symptoms in post-COVID."
Article | Thread
Cognitive Performance Fatigability, Perceived Fatigability, and Trait Fatigue in Post-COVID-19 Condition: A Cross-Sectional Study — Andersson et al
"Thirty-four individuals with PCC and 36 controls who recovered from COVID-19 without PCC performed cognitive tests repeated twice during the test session to assess performance fatigability. Self-reports were used to assess perceived fatigability" "The PCC group exhibited performance fatigability in measures of processing speed."
Article | Thread
Accelerated brain ageing during the COVID-19 pandemic — Mohammadi-Nejad et al.
"We investigate the pandemic’s impact on brain ageing using longitudinal neuroimaging data from the UK Biobank." "The Pandemic group shows on average 5.5-month higher deviation of brain age gap at the second time point compared with controls."
Article | Thread
Long COVID and its associations with burnout, anxiety, and depression among U. S. healthcare workers in the United States — Vu et al.
"our findings emphasize that Long COVID—rather than prior COVID-19 experience alone—is significant associated and with elevated levels of burnout and mental health challenges observed among healthcare workers. These results emphasize the continued impact of Long COVID poses for healthcare workers, even as the acute phase of the pandemic recedes."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky