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News in Brief - June 2025
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Week beginning 2nd June 2025
Part 1 of 2
News, advocacy and articles
The Sick Times "Emergency departments aren’t trained for Long COVID — and patients are paying the price"
Article discussing problems with emergency care for Long Covid and ME/CFS patients along with some suggestions for how to improve care.
Article | Thread
UK NHS app feedback invited An app for use in the NHS for Long Covid, post-viral fatigue, ME/CFS and fibromyalgia is being beta tested and feedback is invited either directly on the app or via the MEA. Forum members have raised concerns about some of the material on the app. The app is funded by the DWP and DHSC and produced by a private company ELAROS, with material from some Long Covid clinics, the ME Association and BACME. The app is called Open-OH and is available in app stores. The MEA funded team producing a 'clinical toolkit' for ME/CFS including Professor Sarah Tyson is sharing a presentation about it with the company and other interested parties on 2nd July.
MEA on facebook | Thread
..............
Coming events
Bateman Horne Center - Free Online Support Groups
Tuesday, June 10, 1:00 - 2:00 PM Mountain Time
Topic: When Things Get Tough: Managing Difficult Emotions with Chronic Illness: Anxiety and Fear
Tuesday, June 17, 1:00 - 2:00 PM Mountain Time
Topic: Radical Acceptance: Embracing Life without Condition
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
Solve ME Webinar Probing Functional Autoantibodies in Patients with ME/CFS
Dr. Akiko Iwasaki will present and take questions afterwards if time allows.
Thursday, July 31, 12 pm Pacific / 3 pm Eastern
Details | Registration | Thread
..............
Research news and commentary
Norway
The ME research team at Haukeland University Hospital (Drs Fluge, Mella, Rekeland and more) has opened for recruitment of 66 participants for a placebo controlled clinical trial on Daratumumab as a potential treatment for ME/CFS. The Norwegian ME Association has announced it's starting a fundraising campaign in support of the trial.
Information for applicants (in Norwegian) l Thread
The Holberg School Programme is an annual research competition for students in the upper secondary schools in Norway.
High school pupil Vilde Seip Frydenlund received the first prize for 2025 for her research project interviewing ME patients about their experiences with health care.
More information (in Norwegian) Thread
Trial by Error by David Tuller
Canadian GET/CBT Campaigners Publish Propaganda Cosplaying as Research on Twitter Trends
A critical look at a recent problematic BPS study on the impact of the pandemic and the public perspective on ME/CFS based on Tweets. Tuller comments: "This is propaganda cosplaying as research."
Article l Thread
Dr Rob Wüst on ME/CFS, Long Covid and Deconditioning
An interview with Dr Wust on his paper "Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest".
Interview l Thread
UK ME/CFS Biobank has samples available for research.
"Using biobank samples saves time and costs on lengthy ethical processes, recruiting and meeting with participants, the collection, processing and storage of samples, and data collection. More details on sample types and the accompanying data available can be found on the website.
If you would like to apply for samples free of all costs of collection, processing and storage, please send a brief outline for a research proposal to the Biobank. Full details for applications are on the website. These free samples are available for a limited time only."
Thread
Bateman Horne Center "The Youngest Victims: A Mother’s Perspective on Long COVID Research and the ME/CFS Reality We’ve Lived"
A blog post discussing recent research from the NIH-funded RECOVER initiative that looked at Long Covid symptoms in children.
Blog | Thread
ME/CFS Research Foundation
The Charité and the ME/CFS Research Foundation held the “ME/CFS Symposium 2025 – Research and Health Care Studies in Germany“ on 13 May 2025 in Berlin. Videos of the conference talks are now available online. All presentation were held in German. For the videos, automatically generated subtitles are available via Youtube.
Article | Thread
..............
Go to the next post for the research section.
Part 1 of 2
News, advocacy and articles
The Sick Times "Emergency departments aren’t trained for Long COVID — and patients are paying the price"
Article discussing problems with emergency care for Long Covid and ME/CFS patients along with some suggestions for how to improve care.
Article | Thread
UK NHS app feedback invited An app for use in the NHS for Long Covid, post-viral fatigue, ME/CFS and fibromyalgia is being beta tested and feedback is invited either directly on the app or via the MEA. Forum members have raised concerns about some of the material on the app. The app is funded by the DWP and DHSC and produced by a private company ELAROS, with material from some Long Covid clinics, the ME Association and BACME. The app is called Open-OH and is available in app stores. The MEA funded team producing a 'clinical toolkit' for ME/CFS including Professor Sarah Tyson is sharing a presentation about it with the company and other interested parties on 2nd July.
MEA on facebook | Thread
..............
Coming events
Bateman Horne Center - Free Online Support Groups
Tuesday, June 10, 1:00 - 2:00 PM Mountain Time
Topic: When Things Get Tough: Managing Difficult Emotions with Chronic Illness: Anxiety and Fear
Tuesday, June 17, 1:00 - 2:00 PM Mountain Time
Topic: Radical Acceptance: Embracing Life without Condition
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
Solve ME Webinar Probing Functional Autoantibodies in Patients with ME/CFS
Dr. Akiko Iwasaki will present and take questions afterwards if time allows.
Thursday, July 31, 12 pm Pacific / 3 pm Eastern
Details | Registration | Thread
..............
Research news and commentary
Norway
The ME research team at Haukeland University Hospital (Drs Fluge, Mella, Rekeland and more) has opened for recruitment of 66 participants for a placebo controlled clinical trial on Daratumumab as a potential treatment for ME/CFS. The Norwegian ME Association has announced it's starting a fundraising campaign in support of the trial.
Information for applicants (in Norwegian) l Thread
The Holberg School Programme is an annual research competition for students in the upper secondary schools in Norway.
High school pupil Vilde Seip Frydenlund received the first prize for 2025 for her research project interviewing ME patients about their experiences with health care.
More information (in Norwegian) Thread
Trial by Error by David Tuller
Canadian GET/CBT Campaigners Publish Propaganda Cosplaying as Research on Twitter Trends
A critical look at a recent problematic BPS study on the impact of the pandemic and the public perspective on ME/CFS based on Tweets. Tuller comments: "This is propaganda cosplaying as research."
Article l Thread
Dr Rob Wüst on ME/CFS, Long Covid and Deconditioning
An interview with Dr Wust on his paper "Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest".
Interview l Thread
UK ME/CFS Biobank has samples available for research.
"Using biobank samples saves time and costs on lengthy ethical processes, recruiting and meeting with participants, the collection, processing and storage of samples, and data collection. More details on sample types and the accompanying data available can be found on the website.
If you would like to apply for samples free of all costs of collection, processing and storage, please send a brief outline for a research proposal to the Biobank. Full details for applications are on the website. These free samples are available for a limited time only."
Thread
Bateman Horne Center "The Youngest Victims: A Mother’s Perspective on Long COVID Research and the ME/CFS Reality We’ve Lived"
A blog post discussing recent research from the NIH-funded RECOVER initiative that looked at Long Covid symptoms in children.
Blog | Thread
ME/CFS Research Foundation
The Charité and the ME/CFS Research Foundation held the “ME/CFS Symposium 2025 – Research and Health Care Studies in Germany“ on 13 May 2025 in Berlin. Videos of the conference talks are now available online. All presentation were held in German. For the videos, automatically generated subtitles are available via Youtube.
Article | Thread
..............
Go to the next post for the research section.
Week beginning 2nd June 2025
Part 2 of 2.
Research
ME/CFS research
Clinical and Translational Medicine
Extracellular vesicle proteomics uncovers energy metabolism, complement system, and endoplasmic reticulum stress response dysregulation postexercise in males with myalgic encephalomyelitis/chronic fatigue syndrome — Katherine A. Glass et al.
"Particularly prominent findings include the downregulation of protein sets including the TCA cycle and other metabolic pathways in ME/CFS patients 15 min postexercise, alongside the upregulation of complement system proteins." " Additionally, we found the dynamics during exercise recovery of 10 EV proteins involved in protein folding and the ER stress response were highly correlated with the severity of PEM in ME/CFS patients."
Article | Thread
Preprint: MedRxiv
Charting the Circulating Proteome in ME/CFS: Cross System Profiling and Mechanistic insights — August Hoel et al.
"Distinct patterns of tissue- and process-specific changes were seen. There was a broad increase in secreted proteins, while intracellular proteins, e.g. from skeletal muscle, particularly showed reduction. Immune cell-specific signatures indicated immune reprogramming, including a distinct reduction in neutrophil-associated proteins."
Article | Thread
International Journal of Molecular Sciences
Heat vs. Fatigue: Hyperthermia as a Possible Treatment Option for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — Hochecker et al.
"From these results, we can conclude that the mitochondria of ME/CFS patients consume more oxygen at a basal level and for ATP production compared with healthy donors." "The lack of oxygen in ME/CFS patients could explain their higher baseline level of mitochondrial function compared with that of healthy individuals, as the cells are resupplied with sufficient oxygen during the assay conduction, and all accumulated electrons in the mitochondrial transport chain are utilised for ATP production in a short time."
Article | Thread
Preprint: BioRxiv
Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis or control serum — Audrey A. Ryback et al.
"we performed a statistically well-powered replication study of the Seahorse Mitochondrial Stress test described by Fluge et al. (2016)." "We saw no difference in our primary outcome (difference in OCR at maximal respiratory capacity), nor in OCR and ECAR under any other of the conditions we measured."
Article | Thread
Preprint: Research Square
Low Dose Rapamycin Alleviates Clinical Symptoms of Fatigue and PEM in ME/CFS Patients via Improvement of Autophagy — Brian T. Ruan et al.
"the observed clinical improvement in fatigue was paralleled by molecular evidence of enhanced autophagy, including decreased pSer258-ATG13 and increased BECLIN-1 expression."
Article | Thread
Neuroprotection
How pandemics reshape our brain: Common links and targets between long-haul COVID-19, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), oxidative stress, and neurodegeneration — Mary E. Herman
"This Research Highlight urges that, rather than sidelining ME/CFS from neurodegenerative research, there is a strong and immediate rationale for the establishment of a research biway; the wealth of learning from ongoing ME/CFS research might provide fodder for studies in neurobiology."
Article | Thread
Fatigue: Biomedicine, Health & Behavior
Mind in the mist: the interplay between fatigue, information processing and brain fog — Tarek A.-Z. K. Gaber
Editorial from a neuro-rehabilitationist perspective. "In this short paper we tried to highlight the strong and well established link between energy and information as understood by the laws of physics and subsequently, the potential for this link to shed light on the high prevalence of cognitive difficulties in patients suffering from chronic fatigue such as patients with ME/CFS, long Covid, multiple sclerosis, etc."
Article | Thread
Long Covid research
Frontiers in Immunology
Comprehensive transcriptome assessment in PBMCs of post-COVID patients at a median follow-up of 28 months after a mild COVID infection reveals upregulation of JAK/STAT signaling and a prolonged immune response — Fineschi et al.
"Among the most strongly upregulated protein-coding genes, we identified TCN1 (encoding Transcobalamin 1), LTF (encoding Lactotransferrin) and ANXA3 (encoding Annexin A3)." "Furthermore, we identified a strong enrichment of down-regulated genes in processes localized to the mitochondria."
Article | Thread
Biomedicines
Deoxygenation Trends and Their Multivariate Association with Self-Reported Fatigue in Post-COVID Syndrome — Ladek et al.
"The study aimed to investigate muscle (de)oxygenation during light and local exercise, assessed using NIRS, in patients with PCS compared to controls. In addition, a multivariate analysis was performed to explore the relationship between NIRS-derived oxygenation metrics and self-reported fatigue."
Article | Thread
Frontiers in Immunology
Distinct proteomic signatures in Ethiopians predict acute and long-term sequelae of COVID-19 — Wolday et al.
"Whereas upregulated levels of SLAMF1, TNF, TSLP, IL15RA, IL18, ADA, CXCL9, CXCL10, IL17C, and NT3 at the acute phase of the illness were associated with increased Long COVID risk, upregulated TRANCE was associated with a reduced risk of developing Long COVID."
Article | Thread
Frontiers in Immunology
IgA autoimmunity and coagulation among post-acute sequelae of SARS-CoV-2 infection (PASC) patients with persistent respiratory symptoms: a case-control study — Gomes et al.
"we found that IgA antibodies correlate inversely with clinical symptoms and directly with clotting parameters, suggesting a possible link between autoimmunity and coagulation, but in a unexpected direction as lower levels of IgA predicted more respiratory symptoms among PASC cases."
Article | Thread
Medicina
Long COVID and Biomarker Dysregulation—A Shift Toward Immune Exhaustion? — Kallaste et al.
"Our findings suggest that inflammation-related biomarker dysregulation following acute SARS-CoV-2 infection evolves dynamically over a six-month period. By the sixth month, compared to the third month, the presence of LC is more accurately predicted by a combination of persistent biomarker alteration and the severity of the initial infection, as defined by WHO criteria."
Article | Thread
Frontiers in Medicine
Perspective: host factors variants and the underlying causes of long COVID — Pasharawipas
"The concept of host factor variants, including variations in cellular molecules and major histocompatibility complex (MHC) polymorphisms, has been proposed to explain the variable symptoms in SARS-CoV-2-positive individuals. This article expands on this concept to explain the causes of long COVID, particularly focusing on the roles of cytotoxic T cells (Tc), helper T cells (Th), and antigen presenting cells (APCs)"
Article | Thread
ERJ Open Research
Characterising dysfunctional breathing seen in post-acute sequelae of SARS-CoV-2 using approximate entropy — Erin Eschbach et al.
"The purpose of this paper is to identify an objective metric to distinguish DB patterns from normal breathing patterns on CPET."
Article | Thread
Journal of Clinical Laboratory Analysis
Evaluation of Function and Biochemical Parameters of Platelet Concentrates (PCs) Prepared From Blood Donors With a History of COVID-19 During the Platelet Storage — Fatemeh Arastehnazar et al.
"findings suggest that COVID may induce specific alterations in platelet function during the early recovery period."
Article | Thread
Preprint: BioRxiv
The Role of SARS-CoV-2 Nucleocapsid Protein Persistence in Inducing Chronic Type I Interferon and Mitochondrial Dysfunction — Andreas Koenig et al.
"our findings suggest that the persistence of SARS-CoV-2 N-protein in peripheral blood promotes a chronic inflammatory milieu, even several months after active infection via MAVS-mediated type I IFN production that could contribute, in susceptible individuals, to the development of autoimmunity."
Article | Thread
Disability and Rehabilitation
“Rest recharges my energy”; experiences and perceptions of rest in adults with long-term conditions and fatigue in rehabilitation: a qualitative study — Martin Ackah et al.
"Lived-experience participants noted physical symptoms, while HCPs highlighted “all-or-nothing” thinking as a significant barrier."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Part 2 of 2.
Research
ME/CFS research
Clinical and Translational Medicine
Extracellular vesicle proteomics uncovers energy metabolism, complement system, and endoplasmic reticulum stress response dysregulation postexercise in males with myalgic encephalomyelitis/chronic fatigue syndrome — Katherine A. Glass et al.
"Particularly prominent findings include the downregulation of protein sets including the TCA cycle and other metabolic pathways in ME/CFS patients 15 min postexercise, alongside the upregulation of complement system proteins." " Additionally, we found the dynamics during exercise recovery of 10 EV proteins involved in protein folding and the ER stress response were highly correlated with the severity of PEM in ME/CFS patients."
Article | Thread
Preprint: MedRxiv
Charting the Circulating Proteome in ME/CFS: Cross System Profiling and Mechanistic insights — August Hoel et al.
"Distinct patterns of tissue- and process-specific changes were seen. There was a broad increase in secreted proteins, while intracellular proteins, e.g. from skeletal muscle, particularly showed reduction. Immune cell-specific signatures indicated immune reprogramming, including a distinct reduction in neutrophil-associated proteins."
Article | Thread
International Journal of Molecular Sciences
Heat vs. Fatigue: Hyperthermia as a Possible Treatment Option for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — Hochecker et al.
"From these results, we can conclude that the mitochondria of ME/CFS patients consume more oxygen at a basal level and for ATP production compared with healthy donors." "The lack of oxygen in ME/CFS patients could explain their higher baseline level of mitochondrial function compared with that of healthy individuals, as the cells are resupplied with sufficient oxygen during the assay conduction, and all accumulated electrons in the mitochondrial transport chain are utilised for ATP production in a short time."
Article | Thread
Preprint: BioRxiv
Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis or control serum — Audrey A. Ryback et al.
"we performed a statistically well-powered replication study of the Seahorse Mitochondrial Stress test described by Fluge et al. (2016)." "We saw no difference in our primary outcome (difference in OCR at maximal respiratory capacity), nor in OCR and ECAR under any other of the conditions we measured."
Article | Thread
Preprint: Research Square
Low Dose Rapamycin Alleviates Clinical Symptoms of Fatigue and PEM in ME/CFS Patients via Improvement of Autophagy — Brian T. Ruan et al.
"the observed clinical improvement in fatigue was paralleled by molecular evidence of enhanced autophagy, including decreased pSer258-ATG13 and increased BECLIN-1 expression."
Article | Thread
Neuroprotection
How pandemics reshape our brain: Common links and targets between long-haul COVID-19, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), oxidative stress, and neurodegeneration — Mary E. Herman
"This Research Highlight urges that, rather than sidelining ME/CFS from neurodegenerative research, there is a strong and immediate rationale for the establishment of a research biway; the wealth of learning from ongoing ME/CFS research might provide fodder for studies in neurobiology."
Article | Thread
Fatigue: Biomedicine, Health & Behavior
Mind in the mist: the interplay between fatigue, information processing and brain fog — Tarek A.-Z. K. Gaber
Editorial from a neuro-rehabilitationist perspective. "In this short paper we tried to highlight the strong and well established link between energy and information as understood by the laws of physics and subsequently, the potential for this link to shed light on the high prevalence of cognitive difficulties in patients suffering from chronic fatigue such as patients with ME/CFS, long Covid, multiple sclerosis, etc."
Article | Thread
Long Covid research
Frontiers in Immunology
Comprehensive transcriptome assessment in PBMCs of post-COVID patients at a median follow-up of 28 months after a mild COVID infection reveals upregulation of JAK/STAT signaling and a prolonged immune response — Fineschi et al.
"Among the most strongly upregulated protein-coding genes, we identified TCN1 (encoding Transcobalamin 1), LTF (encoding Lactotransferrin) and ANXA3 (encoding Annexin A3)." "Furthermore, we identified a strong enrichment of down-regulated genes in processes localized to the mitochondria."
Article | Thread
Biomedicines
Deoxygenation Trends and Their Multivariate Association with Self-Reported Fatigue in Post-COVID Syndrome — Ladek et al.
"The study aimed to investigate muscle (de)oxygenation during light and local exercise, assessed using NIRS, in patients with PCS compared to controls. In addition, a multivariate analysis was performed to explore the relationship between NIRS-derived oxygenation metrics and self-reported fatigue."
Article | Thread
Frontiers in Immunology
Distinct proteomic signatures in Ethiopians predict acute and long-term sequelae of COVID-19 — Wolday et al.
"Whereas upregulated levels of SLAMF1, TNF, TSLP, IL15RA, IL18, ADA, CXCL9, CXCL10, IL17C, and NT3 at the acute phase of the illness were associated with increased Long COVID risk, upregulated TRANCE was associated with a reduced risk of developing Long COVID."
Article | Thread
Frontiers in Immunology
IgA autoimmunity and coagulation among post-acute sequelae of SARS-CoV-2 infection (PASC) patients with persistent respiratory symptoms: a case-control study — Gomes et al.
"we found that IgA antibodies correlate inversely with clinical symptoms and directly with clotting parameters, suggesting a possible link between autoimmunity and coagulation, but in a unexpected direction as lower levels of IgA predicted more respiratory symptoms among PASC cases."
Article | Thread
Medicina
Long COVID and Biomarker Dysregulation—A Shift Toward Immune Exhaustion? — Kallaste et al.
"Our findings suggest that inflammation-related biomarker dysregulation following acute SARS-CoV-2 infection evolves dynamically over a six-month period. By the sixth month, compared to the third month, the presence of LC is more accurately predicted by a combination of persistent biomarker alteration and the severity of the initial infection, as defined by WHO criteria."
Article | Thread
Frontiers in Medicine
Perspective: host factors variants and the underlying causes of long COVID — Pasharawipas
"The concept of host factor variants, including variations in cellular molecules and major histocompatibility complex (MHC) polymorphisms, has been proposed to explain the variable symptoms in SARS-CoV-2-positive individuals. This article expands on this concept to explain the causes of long COVID, particularly focusing on the roles of cytotoxic T cells (Tc), helper T cells (Th), and antigen presenting cells (APCs)"
Article | Thread
ERJ Open Research
Characterising dysfunctional breathing seen in post-acute sequelae of SARS-CoV-2 using approximate entropy — Erin Eschbach et al.
"The purpose of this paper is to identify an objective metric to distinguish DB patterns from normal breathing patterns on CPET."
Article | Thread
Journal of Clinical Laboratory Analysis
Evaluation of Function and Biochemical Parameters of Platelet Concentrates (PCs) Prepared From Blood Donors With a History of COVID-19 During the Platelet Storage — Fatemeh Arastehnazar et al.
"findings suggest that COVID may induce specific alterations in platelet function during the early recovery period."
Article | Thread
Preprint: BioRxiv
The Role of SARS-CoV-2 Nucleocapsid Protein Persistence in Inducing Chronic Type I Interferon and Mitochondrial Dysfunction — Andreas Koenig et al.
"our findings suggest that the persistence of SARS-CoV-2 N-protein in peripheral blood promotes a chronic inflammatory milieu, even several months after active infection via MAVS-mediated type I IFN production that could contribute, in susceptible individuals, to the development of autoimmunity."
Article | Thread
Disability and Rehabilitation
“Rest recharges my energy”; experiences and perceptions of rest in adults with long-term conditions and fatigue in rehabilitation: a qualitative study — Martin Ackah et al.
"Lived-experience participants noted physical symptoms, while HCPs highlighted “all-or-nothing” thinking as a significant barrier."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky