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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
Week beginning 9th June 2025
News, advocacy and articles
#ThereForME The importance of understanding rest
Thoughtful reflections by LC/ME sufferer and former professional athlete Oonagh Cousins about the concept of resting. "Previously, an ability to rest and do less had marked me as disciplined. Now, similar behaviour, such as staying home, conserving energy and prioritising recovery, was perceived as a lack of effort. My reason for resting had shifted from optimising athletic performance to protecting my health, but society praised the former and judged me for the latter."
Article l Thread
Stand Up For Science The Bethesda Declaration: A Call for NIH and HHS Leadership to Deliver on Promises of Academic Freedom and Scientific Excellence
A group of NIH employees have written an open letter addressed Dr. Bhattacharya, director of the National Institutes of Health. The letter includes this section:
"Based on political preferences and without input from NIH scientific staff or Congress, NIH is censoring critical research and programs addressing:
- COVID-19, long COVID, and immunization. We still have much to learn about the health and social consequences of COVID-19 and our response. Such research is needed to reduce the risk of future pandemics, optimize pandemic response policies, and address the well-documented and debilitating consequences of long COVID."
The forum thread includes links to multiple news outlets that have covered this story.
Bethesda Declaration | Thread
#MEAction "Minnesota’s Long COVID Funding Saved from Elimination"
The first-in-the-nation Long COVID program, run by the Minnesota Department of Health (MDH), has been saved from budget cuts. “Advocacy works,” said Terri Wilder, chair of #MEAction’s Minnesota chapter (quote from an article in The Sick Times).
Article | Thread
.............
Coming events
#MEAction - Monthly Caregiver Support Call (Zoom)
Saturday, Jun 21
3:30 - 4:30 PM Eastern / 12:30 - 1:30 PM Pacific
See thread for time in your time zone.
Details | Thread
..............
Research news and commentary
International ME/CFS Conference 2025 Charité, Berlin
Videos are now available for the two days of scientific presentations.
Conference Website | YouTube Playlist | Thread
Australia
The ME Group Australia YouTube Channel posted a talk with Dr Daniel Missailidis, PhD on "Understanding ME: Investigating cellular and body-wide features of ME". Dr. Missalidis discusses his work over the last 10 years in a very easy to understand way.
Video | Thread
Australia Seeing the Invisible: Illuminating brain function in ME/CFS and Long Covid
Dr. Chris Armstrong and his team at OMF’s Melbourne ME/CFS Collaboration are investigating the link between neuroinflammation, cerebral blood flow, and dysregulated hormones in ME/CFS, POTS, and Long COVID.
Video | Thread
..............
Research
ME/CFS research
Frontiers in Psychology
Unwilling or unable? Interpreting effort task performance in myalgic encephalomyelitis/chronic fatigue syndrome — Kirvin-Quamme et al.
"patients were only able to complete an average of 65% of the hard tasks they chose (SD = 37%), compared to 96% (SD = 8%) for controls […] This constitutes a failure of Treadway et al.’s (2009) manipulation check for differences in ability." "Conclusions about effort preference are unwarranted when group differences in ability could account for disparities in task performance."
Article | Thread
Preprint: SSRN
'Reframing beliefs about their illness does not lead to recovery of tube-fed patients with very severe ME/CFS. Analysis of the BMJ article by Miller et al.' - Vink & VInk-Niese
Mark Vink and Friso Vink-Niese have written a detailed response to the BMJ opinion piece, explaining that 'the narrative which is presented by Miller et al. as new, has dominated the field of ME/CFS for the last 35 years. It has been tested by numerous studies and has been found to be ineffective and harmful."
Article | Thread
Healthcare
The Implications and Predictability of Sleep Reversal for People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Machine Learning Approach — Dietrich et al.
"We found that those in our Sleep Reversal group (N = 327) compared to those without sleep reversal (N = 1986) reported higher symptom burden for 53 out of 54 DSQ symptoms and greater impairments for all six SF-36 subscales."
Article | Thread
Journal of the International Society of Sports Nutrition
Creatine and post-viral fatigue syndrome: an update — Sergej M. Ostojic et al.
Article | Thread
Long Covid research
Preprint: BioRxiv
SARS-CoV-2-induced dysregulation in ADAR editing patterns persists post viral clearance in individuals with mild COVID-19 — Aiswarya Mukundan Nair and Helen Piontkivska
"Our results suggest that SARSCoV-2 infection can lead to persistent changes in ADAR editing patterns even after viral clearance." "we propose persistent dysregulation in ADAR editing of host transcripts, including in genes involved in the neutrophil degranulation pathway, as one potential contributor to some of the symptoms observed in post-SARS-CoV-2 infection sequelae in a subset of individuals."
Article | Thread
Preprint: BioRxiv
COVID-19 induces persistent transcriptional changes in adipose tissue that are not associated with Long COVID — Soneida DeLine-Caballero et al.
"our results revealed no evidence of persistent viral RNA in [subcutaneous adipose tissue] samples from either subacute or LC cohorts." "Transcriptome analysis of SAT samples did not distinguish participants with significant LC symptoms from indeterminant subjects. These findings suggest that SAT remodeling does not play a major role in driving Long COVID sequelae."
Article | Thread
Journal of Proteome Research
Children with Post COVID-19 Multisystem Inflammatory Syndrome Display Unique Pathophysiological Metabolic Phenotypes — Nathan G. Lawler et al.
"We provide comprehensive metabolic profiles of children with acute COVID-19 and multisystem inflammatory syndrome in children (MIS-C) resulting from acute COVID-19 infection, revealing both have significant metabolic perturbations similar to those seen in adults." "The persistence of inflammatory and cardiovascular markers postinfection raises concerns about long-term health impacts, underscoring the need for vigilant monitoring, potential interventions, and further studies to understand the lasting effects of SARS-CoV-2 infection on pediatric health."
Article | Thread
Heart & Lung: The Journal of Cardiopulmonary and Acute Care
Post-COVID-19 exaggerated exertional tachycardia: Relationship with pulmonary and cardiac sequelae — Giovanna Pelà et al.
"We found a significant reduction in lung diffusion capacity and in mean oxygen saturation during the 6MWT in [Exaggerated Exertional Tachycardia] patients compared to [Normal Exertional Tachycardia] ones."
Article | Thread
Journal of Neuroscience Research
Executive Function Decline and Its Association With TNF-α in the Later Stages of Post-Acute Sequelae of COVID — Aditi Varenya et al.
"EF decline in PASC also showed a significant, moderate, inverse relationship with serum TNF- α levels. No such correlations were observed in the HC group. Furthermore, serum TNF- α levels were significantly predictive of the variance in EF decline, after controlling for the impact of age and education" "Notably, serum TNF- α concentrations were significantly higher in females, relative to males, in the PASC group."
Article | Thread
Medical Hypotheses
Skeletal muscle oxygen tension as a measure of COVID-19 disease severity and predictor of disease progression — Stacey et al.
"In this paper, it is hypothesized that reduced oxygen tension in skeletal muscle is indicative of COVID-19 disease severity and predictive of subsequent progression in severity of illness."
Article | Thread
Journal of Paediatrics and Child Health
Post-Covid-19 Symptoms in Children: A Cross-Sectional Survey — Julie Bennett et al.
"the proportion of children in the survey who reported good or very good health reduced from 82.6% before NZ's two large Omicron waves to 66.9% after these waves, with changes in health significantly more frequent in those who had a Covid-19 infection compared with those who had not."
Article | Thread
PAIN
SARS-CoV-2 N protein interacts with Nav1.7 to promote pathological pain — Liu, Jin-Kun et al.
"Our data show that SARS-CoV-2 N protein exacerbates pathological pain in mouse models of bone cancer, chemotherapy, neuropathic, and inflammatory, and promotes the chronification of acute inflammatory pain. We also identify a potential interaction between the N protein and Nav1.7 in dorsal root ganglion neurons from mice, monkeys, and humans."
Article | Thread
Journal of Medical Virology
Postacute Sequelae of COVID-19 Across 12 Major Health Domains and 141 Diseases in Individuals With Mental Illness Among COVID-19 Survivors: A Population-Based Cohort Study in South Korea — Jiseung Kang et al.
"Understanding whether individuals with mental illness, who face challenges related to healthcare barriers, are more vulnerable to postacute sequelae of COVID-19 is limited. Here, we investigated the potential association between pre-existing mental illness and postacute sequelae of COVID-19 across 12 major health domains and 141 specific diseases in COVID-19 survivors."
Article | Thread
PLOS ONE
Long-COVID is associated with increased absenteeism from work — Jaewhan Kim et al.
"This study used a national survey data to find that individuals with long-COVID experienced additional days missed from work compared to those without long-COVID. The results showed the significant productivity loss caused by missed workdays due to long-COVID, providing an economic justification for policymakers and employers to provide support systems for long-COVID patients to return to work."
Article | Thread
American Journal of Health Promotion
Employers’ Long Game for Long Covid — Scott Conard et al.
"Employers can play a role in retaining employees with Long COVID and supporting their health and well-being by acknowledging what they are going through, offering accommodations and flexibilities, and choosing health plans that meet the needs of people with Long COVID."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
#ThereForME The importance of understanding rest
Thoughtful reflections by LC/ME sufferer and former professional athlete Oonagh Cousins about the concept of resting. "Previously, an ability to rest and do less had marked me as disciplined. Now, similar behaviour, such as staying home, conserving energy and prioritising recovery, was perceived as a lack of effort. My reason for resting had shifted from optimising athletic performance to protecting my health, but society praised the former and judged me for the latter."
Article l Thread
Stand Up For Science The Bethesda Declaration: A Call for NIH and HHS Leadership to Deliver on Promises of Academic Freedom and Scientific Excellence
A group of NIH employees have written an open letter addressed Dr. Bhattacharya, director of the National Institutes of Health. The letter includes this section:
"Based on political preferences and without input from NIH scientific staff or Congress, NIH is censoring critical research and programs addressing:
- COVID-19, long COVID, and immunization. We still have much to learn about the health and social consequences of COVID-19 and our response. Such research is needed to reduce the risk of future pandemics, optimize pandemic response policies, and address the well-documented and debilitating consequences of long COVID."
The forum thread includes links to multiple news outlets that have covered this story.
Bethesda Declaration | Thread
#MEAction "Minnesota’s Long COVID Funding Saved from Elimination"
The first-in-the-nation Long COVID program, run by the Minnesota Department of Health (MDH), has been saved from budget cuts. “Advocacy works,” said Terri Wilder, chair of #MEAction’s Minnesota chapter (quote from an article in The Sick Times).
Article | Thread
.............
Coming events
#MEAction - Monthly Caregiver Support Call (Zoom)
Saturday, Jun 21
3:30 - 4:30 PM Eastern / 12:30 - 1:30 PM Pacific
See thread for time in your time zone.
Details | Thread
..............
Research news and commentary
International ME/CFS Conference 2025 Charité, Berlin
Videos are now available for the two days of scientific presentations.
Conference Website | YouTube Playlist | Thread
Australia
The ME Group Australia YouTube Channel posted a talk with Dr Daniel Missailidis, PhD on "Understanding ME: Investigating cellular and body-wide features of ME". Dr. Missalidis discusses his work over the last 10 years in a very easy to understand way.
Video | Thread
Australia Seeing the Invisible: Illuminating brain function in ME/CFS and Long Covid
Dr. Chris Armstrong and his team at OMF’s Melbourne ME/CFS Collaboration are investigating the link between neuroinflammation, cerebral blood flow, and dysregulated hormones in ME/CFS, POTS, and Long COVID.
Video | Thread
..............
Research
ME/CFS research
Frontiers in Psychology
Unwilling or unable? Interpreting effort task performance in myalgic encephalomyelitis/chronic fatigue syndrome — Kirvin-Quamme et al.
"patients were only able to complete an average of 65% of the hard tasks they chose (SD = 37%), compared to 96% (SD = 8%) for controls […] This constitutes a failure of Treadway et al.’s (2009) manipulation check for differences in ability." "Conclusions about effort preference are unwarranted when group differences in ability could account for disparities in task performance."
Article | Thread
Preprint: SSRN
'Reframing beliefs about their illness does not lead to recovery of tube-fed patients with very severe ME/CFS. Analysis of the BMJ article by Miller et al.' - Vink & VInk-Niese
Mark Vink and Friso Vink-Niese have written a detailed response to the BMJ opinion piece, explaining that 'the narrative which is presented by Miller et al. as new, has dominated the field of ME/CFS for the last 35 years. It has been tested by numerous studies and has been found to be ineffective and harmful."
Article | Thread
Healthcare
The Implications and Predictability of Sleep Reversal for People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Machine Learning Approach — Dietrich et al.
"We found that those in our Sleep Reversal group (N = 327) compared to those without sleep reversal (N = 1986) reported higher symptom burden for 53 out of 54 DSQ symptoms and greater impairments for all six SF-36 subscales."
Article | Thread
Journal of the International Society of Sports Nutrition
Creatine and post-viral fatigue syndrome: an update — Sergej M. Ostojic et al.
Article | Thread
Long Covid research
Preprint: BioRxiv
SARS-CoV-2-induced dysregulation in ADAR editing patterns persists post viral clearance in individuals with mild COVID-19 — Aiswarya Mukundan Nair and Helen Piontkivska
"Our results suggest that SARSCoV-2 infection can lead to persistent changes in ADAR editing patterns even after viral clearance." "we propose persistent dysregulation in ADAR editing of host transcripts, including in genes involved in the neutrophil degranulation pathway, as one potential contributor to some of the symptoms observed in post-SARS-CoV-2 infection sequelae in a subset of individuals."
Article | Thread
Preprint: BioRxiv
COVID-19 induces persistent transcriptional changes in adipose tissue that are not associated with Long COVID — Soneida DeLine-Caballero et al.
"our results revealed no evidence of persistent viral RNA in [subcutaneous adipose tissue] samples from either subacute or LC cohorts." "Transcriptome analysis of SAT samples did not distinguish participants with significant LC symptoms from indeterminant subjects. These findings suggest that SAT remodeling does not play a major role in driving Long COVID sequelae."
Article | Thread
Journal of Proteome Research
Children with Post COVID-19 Multisystem Inflammatory Syndrome Display Unique Pathophysiological Metabolic Phenotypes — Nathan G. Lawler et al.
"We provide comprehensive metabolic profiles of children with acute COVID-19 and multisystem inflammatory syndrome in children (MIS-C) resulting from acute COVID-19 infection, revealing both have significant metabolic perturbations similar to those seen in adults." "The persistence of inflammatory and cardiovascular markers postinfection raises concerns about long-term health impacts, underscoring the need for vigilant monitoring, potential interventions, and further studies to understand the lasting effects of SARS-CoV-2 infection on pediatric health."
Article | Thread
Heart & Lung: The Journal of Cardiopulmonary and Acute Care
Post-COVID-19 exaggerated exertional tachycardia: Relationship with pulmonary and cardiac sequelae — Giovanna Pelà et al.
"We found a significant reduction in lung diffusion capacity and in mean oxygen saturation during the 6MWT in [Exaggerated Exertional Tachycardia] patients compared to [Normal Exertional Tachycardia] ones."
Article | Thread
Journal of Neuroscience Research
Executive Function Decline and Its Association With TNF-α in the Later Stages of Post-Acute Sequelae of COVID — Aditi Varenya et al.
"EF decline in PASC also showed a significant, moderate, inverse relationship with serum TNF- α levels. No such correlations were observed in the HC group. Furthermore, serum TNF- α levels were significantly predictive of the variance in EF decline, after controlling for the impact of age and education" "Notably, serum TNF- α concentrations were significantly higher in females, relative to males, in the PASC group."
Article | Thread
Medical Hypotheses
Skeletal muscle oxygen tension as a measure of COVID-19 disease severity and predictor of disease progression — Stacey et al.
"In this paper, it is hypothesized that reduced oxygen tension in skeletal muscle is indicative of COVID-19 disease severity and predictive of subsequent progression in severity of illness."
Article | Thread
Journal of Paediatrics and Child Health
Post-Covid-19 Symptoms in Children: A Cross-Sectional Survey — Julie Bennett et al.
"the proportion of children in the survey who reported good or very good health reduced from 82.6% before NZ's two large Omicron waves to 66.9% after these waves, with changes in health significantly more frequent in those who had a Covid-19 infection compared with those who had not."
Article | Thread
PAIN
SARS-CoV-2 N protein interacts with Nav1.7 to promote pathological pain — Liu, Jin-Kun et al.
"Our data show that SARS-CoV-2 N protein exacerbates pathological pain in mouse models of bone cancer, chemotherapy, neuropathic, and inflammatory, and promotes the chronification of acute inflammatory pain. We also identify a potential interaction between the N protein and Nav1.7 in dorsal root ganglion neurons from mice, monkeys, and humans."
Article | Thread
Journal of Medical Virology
Postacute Sequelae of COVID-19 Across 12 Major Health Domains and 141 Diseases in Individuals With Mental Illness Among COVID-19 Survivors: A Population-Based Cohort Study in South Korea — Jiseung Kang et al.
"Understanding whether individuals with mental illness, who face challenges related to healthcare barriers, are more vulnerable to postacute sequelae of COVID-19 is limited. Here, we investigated the potential association between pre-existing mental illness and postacute sequelae of COVID-19 across 12 major health domains and 141 specific diseases in COVID-19 survivors."
Article | Thread
PLOS ONE
Long-COVID is associated with increased absenteeism from work — Jaewhan Kim et al.
"This study used a national survey data to find that individuals with long-COVID experienced additional days missed from work compared to those without long-COVID. The results showed the significant productivity loss caused by missed workdays due to long-COVID, providing an economic justification for policymakers and employers to provide support systems for long-COVID patients to return to work."
Article | Thread
American Journal of Health Promotion
Employers’ Long Game for Long Covid — Scott Conard et al.
"Employers can play a role in retaining employees with Long COVID and supporting their health and well-being by acknowledging what they are going through, offering accommodations and flexibilities, and choosing health plans that meet the needs of people with Long COVID."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 16th June 2025
News, advocacy and articles
UK Parliament Minutes from the first joint meeting of the APPG groups on ME/CFS and Long Covid on 4th May are available. A government minister attended to hear concerns about planned benefit changes. "The APPG also heard presentations from Prof David Strain, Prof Chris Ponting, Prof Danny Altmann, and Dr Binita Kane." Videos of these presentations are available with the minutes.
Minutes | Thread
Podcast This Week in Virology Special - Long COVID and ME/CFS with David Tuller
"David Tuller returns to TWiV to discuss RFK Jr. and the trashing of American public health, rituximab and ME/CFS, The Sick Times, the Cochrane Mess, a Norwegian Long Covid trial, effort preference and more." Duration: 1 hour, 2 minutes.
YouTube l Thread
The Conversation It’s not just ‘chronic fatigue’: ME/CFS is much more than being tired
Dr Sarah Annesley from La Trobe University writes about issues with outdated criteria and guidelines in Australia.
Article | Thread
...........
Research news and commentary
ME Group Australia
Dr Daniel Missailidis from La Trobe University gave a presentation on "Investigating cellular and body-wide features of ME".
Video | Thread
Aotearoa New Zealand
Professor Warren Tate from Otago University was interviewed on RNZ's Saturday Morning programme. Discussing his group's recent preprint and his hopes for a clinically accessible biomarker test in the future.
Podcast Episode
...........
Research
ME/CFS research
EMBO Molecular Medicine
Replicated blood-based biomarkers for myalgic encephalomyelitis not explicable by inactivity — Beentjes, Ponting et al.
"ME/CFS is thus portrayed by insulin resistance and systemic inflammation, with liver inflammation and dysfunction likely affecting lipid metabolism and the balance between HDL and LDL cholesterol."
Article | Thread
Media reports: The Times | BBC article | BBC interview | Science Media Centre | Thread
British Columbia Medical Journal
Health outcomes of patients in the Complex Chronic Diseases Program — Meagher, Nacul et al.
"While slight improvements were observed in mental health and physical health indicators and the severity of ME/CFS-specific symptoms, symptoms remained severe and persistent over time, regardless of care model"
Article | Thread
Diagnostics
Neurodevelopment Genes Encoding Olduvai Domains Link Myalgic Encephalomyelitis to Neuropsychiatric Disorders — Arcos-Burgos et al.
"We studied a well-defined Australian patient cohort diagnosed via the International Consensus Criteria, recruited by a specialist ME/CFS clinic. The whole-exome sequences of 77 patients were contrasted against genome variation in the 1000 Genome Project’s genome-matched population."
Article | Thread
Thesis - University of Exeter
Investigating liminality in the lived experiences of young adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — Toller
"This study contributes to the literature on contested illness, highlighting the significance of life stage in illness experiences. Findings also develop previous work on contested and chronic illness by expanding the concept of liminality, showing that young adults with ME/CFS inhabit a complex web of simultaneous and shifting liminal states stemming from their life stage, illness symptoms and characteristics, and the perceptions of others."
Article | Thread
Cogent Psychology
Exploring barriers and facilitators to effective self-management in individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an Interpretative Phenomenological Analysis — Molly Roberts and Daniel Gaffiero
"The aim of the present study was to explore how individuals with ME/CFS experience barriers and facilitators to effective self-management. The findings highlighted the complex, cyclical and interrelated nature of ME/CFS symptoms and the substantial psychological, emotional and physical demands placed on individuals attempting to self-manage their condition."
Article | Thread
Long Covid research
Experimental Physiology
Submaximal 2-day cardiopulmonary exercise testing to assess exercise capacity and post-exertional symptom exacerbation in people with long COVID — Callum Thomas et al.
"people with long COVID without moderate severe PESE, as determined by the DePaul symptom screening questionnaire, exhibit an impaired cardiorespiratory response evident as early as the first ventilatory threshold during submaximal CPET, which worsens during an additional CPET 24 h later."
Article | Thread
Frontiers in Immunology
Markers of T cell activation and exhaustion in plasma are associated with persistent symptoms up to 18 months following mild SARS-CoV-2 infection — Ueland et al.
"a sustained increase in sCD25 was observed in relation to dyspnea and fatigue up to 18 months following infection while sTIM-3 was related to high symptom burden and sLAG-3 to long-term memory problems"
Article | Thread
Neuroscience
Long term effect of COVID-19 on brain metabolism and connectivity — Beatrice Bravi et al.
"we found glutamate and NAA levels to positively affect WM microstructure integrity in the COVID cohort, while these associations were not observed in the healthy control group, possibly due to the absence of recent neuroinflammatory or neuroplastic changes requiring compensatory responses."
Article | Thread
Preprints.org
Understanding Neuroinflammation in Post-COVID-19 Syndrome: Biological Mechanisms, Diagnostic Biomarkers, and Therapeutic Prospects — Daniel Martins et al.
"Growing evidence implicates chronic neuroinflammation as a central driver of these long-term sequelae. Our proposed multiscale model suggests that sustained immune activation disrupts neurotransmitter balance, impairs synaptic and network plasticity, and gives rise to phenomena such as local sleep intrusions, memory reconsolidation failure, and episodic symptom flares"
Article | Thread
Psychiatry and Clinical Neurosciences
Neuroimmune pathophysiology of long COVID — Janna K. Moen et al.
"we provide a narrative overview of the nervous system in COVID-19 and how the immune system contributes to the pathophysiology of neurological Long COVID"
Article | Thread
BMC Neurology
Long-term neurological and cognitive impact of COVID-19: a systematic review and meta-analysis in over 4 million patients — Elboraay et al.
"this meta-analysis highlights the significant prevalence of long-term neuropsychiatric symptoms associated with COVID-19, including fatigue, depression, anxiety, cognitive impairment, sleep disturbances, and headaches."
Article | Thread
Neuropharmacology
Targeting P2X7 mitigates neurobehavioural alterations in a mouse model of post-acute sequelae of SARS-CoV-2 infection — Szabó et al.
"we report for the first time that the activation of P2X7 receptors following SARS-CoV-2 infection is involved in the induction of anxiety and mood alterations through inflammatory pathways."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
UK Parliament Minutes from the first joint meeting of the APPG groups on ME/CFS and Long Covid on 4th May are available. A government minister attended to hear concerns about planned benefit changes. "The APPG also heard presentations from Prof David Strain, Prof Chris Ponting, Prof Danny Altmann, and Dr Binita Kane." Videos of these presentations are available with the minutes.
Minutes | Thread
Podcast This Week in Virology Special - Long COVID and ME/CFS with David Tuller
"David Tuller returns to TWiV to discuss RFK Jr. and the trashing of American public health, rituximab and ME/CFS, The Sick Times, the Cochrane Mess, a Norwegian Long Covid trial, effort preference and more." Duration: 1 hour, 2 minutes.
YouTube l Thread
The Conversation It’s not just ‘chronic fatigue’: ME/CFS is much more than being tired
Dr Sarah Annesley from La Trobe University writes about issues with outdated criteria and guidelines in Australia.
Article | Thread
...........
Research news and commentary
ME Group Australia
Dr Daniel Missailidis from La Trobe University gave a presentation on "Investigating cellular and body-wide features of ME".
Video | Thread
Aotearoa New Zealand
Professor Warren Tate from Otago University was interviewed on RNZ's Saturday Morning programme. Discussing his group's recent preprint and his hopes for a clinically accessible biomarker test in the future.
Podcast Episode
...........
Research
ME/CFS research
EMBO Molecular Medicine
Replicated blood-based biomarkers for myalgic encephalomyelitis not explicable by inactivity — Beentjes, Ponting et al.
"ME/CFS is thus portrayed by insulin resistance and systemic inflammation, with liver inflammation and dysfunction likely affecting lipid metabolism and the balance between HDL and LDL cholesterol."
Article | Thread
Media reports: The Times | BBC article | BBC interview | Science Media Centre | Thread
British Columbia Medical Journal
Health outcomes of patients in the Complex Chronic Diseases Program — Meagher, Nacul et al.
"While slight improvements were observed in mental health and physical health indicators and the severity of ME/CFS-specific symptoms, symptoms remained severe and persistent over time, regardless of care model"
Article | Thread
Diagnostics
Neurodevelopment Genes Encoding Olduvai Domains Link Myalgic Encephalomyelitis to Neuropsychiatric Disorders — Arcos-Burgos et al.
"We studied a well-defined Australian patient cohort diagnosed via the International Consensus Criteria, recruited by a specialist ME/CFS clinic. The whole-exome sequences of 77 patients were contrasted against genome variation in the 1000 Genome Project’s genome-matched population."
Article | Thread
Thesis - University of Exeter
Investigating liminality in the lived experiences of young adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — Toller
"This study contributes to the literature on contested illness, highlighting the significance of life stage in illness experiences. Findings also develop previous work on contested and chronic illness by expanding the concept of liminality, showing that young adults with ME/CFS inhabit a complex web of simultaneous and shifting liminal states stemming from their life stage, illness symptoms and characteristics, and the perceptions of others."
Article | Thread
Cogent Psychology
Exploring barriers and facilitators to effective self-management in individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an Interpretative Phenomenological Analysis — Molly Roberts and Daniel Gaffiero
"The aim of the present study was to explore how individuals with ME/CFS experience barriers and facilitators to effective self-management. The findings highlighted the complex, cyclical and interrelated nature of ME/CFS symptoms and the substantial psychological, emotional and physical demands placed on individuals attempting to self-manage their condition."
Article | Thread
Long Covid research
Experimental Physiology
Submaximal 2-day cardiopulmonary exercise testing to assess exercise capacity and post-exertional symptom exacerbation in people with long COVID — Callum Thomas et al.
"people with long COVID without moderate severe PESE, as determined by the DePaul symptom screening questionnaire, exhibit an impaired cardiorespiratory response evident as early as the first ventilatory threshold during submaximal CPET, which worsens during an additional CPET 24 h later."
Article | Thread
Frontiers in Immunology
Markers of T cell activation and exhaustion in plasma are associated with persistent symptoms up to 18 months following mild SARS-CoV-2 infection — Ueland et al.
"a sustained increase in sCD25 was observed in relation to dyspnea and fatigue up to 18 months following infection while sTIM-3 was related to high symptom burden and sLAG-3 to long-term memory problems"
Article | Thread
Neuroscience
Long term effect of COVID-19 on brain metabolism and connectivity — Beatrice Bravi et al.
"we found glutamate and NAA levels to positively affect WM microstructure integrity in the COVID cohort, while these associations were not observed in the healthy control group, possibly due to the absence of recent neuroinflammatory or neuroplastic changes requiring compensatory responses."
Article | Thread
Preprints.org
Understanding Neuroinflammation in Post-COVID-19 Syndrome: Biological Mechanisms, Diagnostic Biomarkers, and Therapeutic Prospects — Daniel Martins et al.
"Growing evidence implicates chronic neuroinflammation as a central driver of these long-term sequelae. Our proposed multiscale model suggests that sustained immune activation disrupts neurotransmitter balance, impairs synaptic and network plasticity, and gives rise to phenomena such as local sleep intrusions, memory reconsolidation failure, and episodic symptom flares"
Article | Thread
Psychiatry and Clinical Neurosciences
Neuroimmune pathophysiology of long COVID — Janna K. Moen et al.
"we provide a narrative overview of the nervous system in COVID-19 and how the immune system contributes to the pathophysiology of neurological Long COVID"
Article | Thread
BMC Neurology
Long-term neurological and cognitive impact of COVID-19: a systematic review and meta-analysis in over 4 million patients — Elboraay et al.
"this meta-analysis highlights the significant prevalence of long-term neuropsychiatric symptoms associated with COVID-19, including fatigue, depression, anxiety, cognitive impairment, sleep disturbances, and headaches."
Article | Thread
Neuropharmacology
Targeting P2X7 mitigates neurobehavioural alterations in a mouse model of post-acute sequelae of SARS-CoV-2 infection — Szabó et al.
"we report for the first time that the activation of P2X7 receptors following SARS-CoV-2 infection is involved in the induction of anxiety and mood alterations through inflammatory pathways."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Last edited by a moderator:
Week beginning 23rd June 2024
News, advocacy and articles
Australia National Health and Medical Research Council
Members of the NHMRC ME/CFS Guideline Development Committee have been announced.
Announcement | Thread
Trial by Error by David Tuller
Dutch Journalist Faces Off Against CBT/GET Ideologues
The Dutch health journalist Sander Zurhake is the reporter behind a package of stories on the harms of psycho-behavioural treatments for children with ME/CFS. This resulted in harsh criticism from the Dutch Association for Pediatrics and the Association for Behavioural and Cognitive Therapies but then got supported by more than 100 doctors, psychologists and other health care providers in an open letter. Tuller comments: "When journalists and media organizations go up against powerful medical interests, it is critical that they are able to back everything up. Zurhake has done his homework here. To anyone following the exchange, he clearly has the winning hand."
Article l Thread
An interview with Sjoerd Beentjes, Lead Author of Big Data Study on "Blood-Based Biomakers" for ME/CFS
A video interview with lead author of the paper "Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity". Duration: 18 minutes.
Interview l Thread
Emerge Australia SBS Insight Invisible Illness – Statement By 4 Studio Participants
Emerge has published a statement criticising the recent broadcast as being in breach of its journalistic code of ethics. "We are united in our deep concern over how the episode was produced, edited, and presented and the serious harm it caused by misrepresenting Myalgic Encephalomyelitis (ME/CFS) and its impact on the wider chronic illness community."
Statement | Thread
...........
Research news and commentary
Conference talks from the ME/CFS and Long Covid conference Digging Deeper which took place in Stavanger, Norway last month are now available on YouTube. Speakers are: Kristian Sommerfelt, Carmen Scheibenbogen, Øystein Fluge, Karl Johan Tronstad, David Putrino, David Systrom, Rob Wüst, Trude Schei, Brian Hughes, Anniken Aase Sommerfelt and Michelle Bull. Talks in Norwegian have English subtitles. Organiser: the Norwegian ME Association - Rogaland.
YouTube channel l Thread
Solve ME has selected the Simmaron Research Institute as the winner of their second Solve ME/CFS Catalyst Award for its study, “Low Dose Rapamycin in ME/CFS, Long-COVID, and Other Infection Associated Chronic Conditions.”
Article | Thread
Solve ME has awarded more funding to Ramsay grant awardees Dr. Geraldine Cambridge and Dr. Dana Yelin. Dr. Cambridge won over $80,000 from ME Research UK to determine how antibody patterns predict ME/CFS–symptom severity. Dr Yelin's project is "Enhanced External Counterpulsation (EECP), Non-invasive Approach to Treat Long Covid Fatigue."
Article | Thread
UK Action for ME The recording from the Genetics Centre of Excellence webinar on 6 June is now available. "Presentations from Audrey Ryback, Research Fellow at the University of Edinburgh (funded by Action for ME), and PrecisionLife, our Partners in the LOCOME research project." Duration 1 hour.
Video | Thread
Australia Announcement of the OUTPOST Study
"A landmark study led by the University of Melbourne, the Doherty Institute, the Kirby Institute at UNSW Sydney and the University of Adelaide aims to understand how common these persistent illnesses are and use this information to inform clinical practice and improve health and wellbeing."
Announcement | Study Link | Thread
..........
Coming Events:
Bateman Horne Center - Free Online Support Group
Tuesday, July 8, 1:00 - 2:00 PM Mountain Time
Topic: To Be Announced
Advance registration required, see thread for times in your time zone.
Details | Thread
Solve ME Webinar - The ADDRESS-LC Trial: Studying the Impact of Bezisterim on Brain fog and Fatigue in People with Long Covid
Solve CEO Emily Taylor and a group of panelists will discuss the latest updates on Long COVID research and the ADDRESS-LC trial.
Tuesday, July 22, 3 PM Pacific / 6 PM Eastern
Details | Registration | Thread
Solve ME Webinar - Probing Functional Autoantibodies in Patients with ME/CFS
Dr. Akiko Iwasaki and Solve CEO Emily Taylor will discuss the research.
Thursday, July 31, 12 PM Pacific / 3 PM Eastern
Details | Registration | Thread
.................
Research
ME/CFS research
Frontiers in Immunology
Amplification of select autonomous HERV loci and surrounding host gene transcription in monocytes from patients with post-acute sequelae of COVID-19 — Koo and Morrow
"positive HERV were detected in all patients from a scRNA-seq analysis of samples taken 8 months post-acute COVID-19, with 3 specific HERV loci positive across all 12 patients"
Article | Thread
International Journal of Molecular Sciences
Systems Modeling Reveals Shared Metabolic Dysregulation and Potential Treatments in ME/CFS and Long COVID — Li, Kalafatis, Xiao et al.
"Utilizing genome-wide metabolic modeling, we identified key metabolic irregularities in the muscle of patients with ME/CFS, notably the downregulation of the alanine and aspartate metabolism pathway and the arginine and proline metabolism pathway."
Article | Thread
Autoimmunity Reviews
Advancing research on regulatory autoantibodies targeting GPCRs: Insights from the 5th international symposium — Cabral-Marques et al.
"The symposium highlighted their involvement in multiple prominent pathologies, including autoimmune diseases, cardio- and cerebrovascular diseases, and neuroimmunologic disorders such as myalgic encephalomyelitis/chronic fatigue syndrome and post-COVID-19 syndrome"
Article | Thread
Frontiers in Health Services
Assessing the influence of lived-experience experts on healthcare providers in a virtual community of practice: a qualitative study — Weaver, Unger et al.
"By including people with lived-experience of Long COVID, ME/CFS, and other PAIS as subject matter experts for LC&FIRP medical education activities, we aimed to foster empathy and responsiveness to patients’ problems as they experience them, not only as professionals define them."
Article | Thread
The Ocular Surface
Heightened visual light sensitivity discomfort measured by the ocular photosensitivity analyzer is associated with chronic ocular pain — Karakoleva et al.
"our group developed the Ocular Photosensitivity Analyzer (OPA), a validated, automated system designed to quantify visual photosensitivity discomfort thresholds" "fibromyalgia and chronic fatigue emerged as the most significant predictors, suggesting that photoallodynia presence may be more pronounced in individuals with broader nociplastic phenotypes."
Article | Thread
Long Covid research
Frontiers in Neurology
Prevalence and severity of neurologic symptoms in Long-COVID and the role of pre-existing conditions, hospitalization, and mental health — Huff, Nath, Walitt et al.
"these data do not support the idea of neurological vulnerability. Neither self-reported pre-existing neurological nor psychiatric conditions have a statistically significant impact on the development of neurological symptoms after SARS-CoV-2." "With increasing elapsed time from infection, the neurological symptoms resemble those of fibromyalgia and ME/CFS"
Article | Thread
Frontiers in Immunology
Dysregulated monocyte compartment in PACS patients — Kronstein-Wiedemann et al.
"Our findings indicate that intermediate monocytes and CD56+ monocytes are expanded in PACS patients. These monocyte compartment perturbations were also found in PACS patients with a disease duration greater than two years, suggesting a persistent and long-term dysregulation of the monocyte subsets."
Article | Thread
European Journal of Nuclear Medicine and Molecular Imaging
[68Ga]FAPI PET/CT reveals increased pulmonary fibroblast activation protein expression in long COVID patients after ICU discharge — van Leer et al.
"More than 2 years after hospital discharge, markedly increased pulmonary [68 Ga]FAPI uptake was observed in PASC" "In addition, we found increased FAP expression in muscle tissue of PASC patients." "To our knowledge this is the first time that increased muscle FAP expression in PASC patients has been shown."
Article | Thread
Viruses
SARS-CoV-2 (MA10) Infection Aggravates Cerebrovascular Pathology in Endothelial Nitric Oxide Synthase-Deficient Mice — Ismael et al.
Mouse study. "MA10 viral RNA was not detected in the infected brain, implying that the neuropathological events are independent of brain viral invasion" "fibrin-rich intravascular microthrombi were detected in the cerebral cortex of eNOS-deficient mice, confirming the pathological role of NO deficiency in hypercoagulopathy state independent of infection"
Article | Thread
Journal of Medical Economics
Quantifying all-cause healthcare resource utilization and costs of children with mild-to-moderate long COVID in France — Jingyan Yang et al.
"In the present study of 27,573 children diagnosed with COVID-19, 14.1% and 17.4% had long COVID per the WHO and NICE definitions, respectively. Evaluation of the all-cause HCRU and costs of these children demonstrated that pediatric long COVID managed in the community imposes a non-neglectable clinical and economic burden to the French healthcare system"
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
Australia National Health and Medical Research Council
Members of the NHMRC ME/CFS Guideline Development Committee have been announced.
Announcement | Thread
Trial by Error by David Tuller
Dutch Journalist Faces Off Against CBT/GET Ideologues
The Dutch health journalist Sander Zurhake is the reporter behind a package of stories on the harms of psycho-behavioural treatments for children with ME/CFS. This resulted in harsh criticism from the Dutch Association for Pediatrics and the Association for Behavioural and Cognitive Therapies but then got supported by more than 100 doctors, psychologists and other health care providers in an open letter. Tuller comments: "When journalists and media organizations go up against powerful medical interests, it is critical that they are able to back everything up. Zurhake has done his homework here. To anyone following the exchange, he clearly has the winning hand."
Article l Thread
An interview with Sjoerd Beentjes, Lead Author of Big Data Study on "Blood-Based Biomakers" for ME/CFS
A video interview with lead author of the paper "Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity". Duration: 18 minutes.
Interview l Thread
Emerge Australia SBS Insight Invisible Illness – Statement By 4 Studio Participants
Emerge has published a statement criticising the recent broadcast as being in breach of its journalistic code of ethics. "We are united in our deep concern over how the episode was produced, edited, and presented and the serious harm it caused by misrepresenting Myalgic Encephalomyelitis (ME/CFS) and its impact on the wider chronic illness community."
Statement | Thread
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Research news and commentary
Conference talks from the ME/CFS and Long Covid conference Digging Deeper which took place in Stavanger, Norway last month are now available on YouTube. Speakers are: Kristian Sommerfelt, Carmen Scheibenbogen, Øystein Fluge, Karl Johan Tronstad, David Putrino, David Systrom, Rob Wüst, Trude Schei, Brian Hughes, Anniken Aase Sommerfelt and Michelle Bull. Talks in Norwegian have English subtitles. Organiser: the Norwegian ME Association - Rogaland.
YouTube channel l Thread
Solve ME has selected the Simmaron Research Institute as the winner of their second Solve ME/CFS Catalyst Award for its study, “Low Dose Rapamycin in ME/CFS, Long-COVID, and Other Infection Associated Chronic Conditions.”
Article | Thread
Solve ME has awarded more funding to Ramsay grant awardees Dr. Geraldine Cambridge and Dr. Dana Yelin. Dr. Cambridge won over $80,000 from ME Research UK to determine how antibody patterns predict ME/CFS–symptom severity. Dr Yelin's project is "Enhanced External Counterpulsation (EECP), Non-invasive Approach to Treat Long Covid Fatigue."
Article | Thread
UK Action for ME The recording from the Genetics Centre of Excellence webinar on 6 June is now available. "Presentations from Audrey Ryback, Research Fellow at the University of Edinburgh (funded by Action for ME), and PrecisionLife, our Partners in the LOCOME research project." Duration 1 hour.
Video | Thread
Australia Announcement of the OUTPOST Study
"A landmark study led by the University of Melbourne, the Doherty Institute, the Kirby Institute at UNSW Sydney and the University of Adelaide aims to understand how common these persistent illnesses are and use this information to inform clinical practice and improve health and wellbeing."
Announcement | Study Link | Thread
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Coming Events:
Bateman Horne Center - Free Online Support Group
Tuesday, July 8, 1:00 - 2:00 PM Mountain Time
Topic: To Be Announced
Advance registration required, see thread for times in your time zone.
Details | Thread
Solve ME Webinar - The ADDRESS-LC Trial: Studying the Impact of Bezisterim on Brain fog and Fatigue in People with Long Covid
Solve CEO Emily Taylor and a group of panelists will discuss the latest updates on Long COVID research and the ADDRESS-LC trial.
Tuesday, July 22, 3 PM Pacific / 6 PM Eastern
Details | Registration | Thread
Solve ME Webinar - Probing Functional Autoantibodies in Patients with ME/CFS
Dr. Akiko Iwasaki and Solve CEO Emily Taylor will discuss the research.
Thursday, July 31, 12 PM Pacific / 3 PM Eastern
Details | Registration | Thread
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Research
ME/CFS research
Frontiers in Immunology
Amplification of select autonomous HERV loci and surrounding host gene transcription in monocytes from patients with post-acute sequelae of COVID-19 — Koo and Morrow
"positive HERV were detected in all patients from a scRNA-seq analysis of samples taken 8 months post-acute COVID-19, with 3 specific HERV loci positive across all 12 patients"
Article | Thread
International Journal of Molecular Sciences
Systems Modeling Reveals Shared Metabolic Dysregulation and Potential Treatments in ME/CFS and Long COVID — Li, Kalafatis, Xiao et al.
"Utilizing genome-wide metabolic modeling, we identified key metabolic irregularities in the muscle of patients with ME/CFS, notably the downregulation of the alanine and aspartate metabolism pathway and the arginine and proline metabolism pathway."
Article | Thread
Autoimmunity Reviews
Advancing research on regulatory autoantibodies targeting GPCRs: Insights from the 5th international symposium — Cabral-Marques et al.
"The symposium highlighted their involvement in multiple prominent pathologies, including autoimmune diseases, cardio- and cerebrovascular diseases, and neuroimmunologic disorders such as myalgic encephalomyelitis/chronic fatigue syndrome and post-COVID-19 syndrome"
Article | Thread
Frontiers in Health Services
Assessing the influence of lived-experience experts on healthcare providers in a virtual community of practice: a qualitative study — Weaver, Unger et al.
"By including people with lived-experience of Long COVID, ME/CFS, and other PAIS as subject matter experts for LC&FIRP medical education activities, we aimed to foster empathy and responsiveness to patients’ problems as they experience them, not only as professionals define them."
Article | Thread
The Ocular Surface
Heightened visual light sensitivity discomfort measured by the ocular photosensitivity analyzer is associated with chronic ocular pain — Karakoleva et al.
"our group developed the Ocular Photosensitivity Analyzer (OPA), a validated, automated system designed to quantify visual photosensitivity discomfort thresholds" "fibromyalgia and chronic fatigue emerged as the most significant predictors, suggesting that photoallodynia presence may be more pronounced in individuals with broader nociplastic phenotypes."
Article | Thread
Long Covid research
Frontiers in Neurology
Prevalence and severity of neurologic symptoms in Long-COVID and the role of pre-existing conditions, hospitalization, and mental health — Huff, Nath, Walitt et al.
"these data do not support the idea of neurological vulnerability. Neither self-reported pre-existing neurological nor psychiatric conditions have a statistically significant impact on the development of neurological symptoms after SARS-CoV-2." "With increasing elapsed time from infection, the neurological symptoms resemble those of fibromyalgia and ME/CFS"
Article | Thread
Frontiers in Immunology
Dysregulated monocyte compartment in PACS patients — Kronstein-Wiedemann et al.
"Our findings indicate that intermediate monocytes and CD56+ monocytes are expanded in PACS patients. These monocyte compartment perturbations were also found in PACS patients with a disease duration greater than two years, suggesting a persistent and long-term dysregulation of the monocyte subsets."
Article | Thread
European Journal of Nuclear Medicine and Molecular Imaging
[68Ga]FAPI PET/CT reveals increased pulmonary fibroblast activation protein expression in long COVID patients after ICU discharge — van Leer et al.
"More than 2 years after hospital discharge, markedly increased pulmonary [68 Ga]FAPI uptake was observed in PASC" "In addition, we found increased FAP expression in muscle tissue of PASC patients." "To our knowledge this is the first time that increased muscle FAP expression in PASC patients has been shown."
Article | Thread
Viruses
SARS-CoV-2 (MA10) Infection Aggravates Cerebrovascular Pathology in Endothelial Nitric Oxide Synthase-Deficient Mice — Ismael et al.
Mouse study. "MA10 viral RNA was not detected in the infected brain, implying that the neuropathological events are independent of brain viral invasion" "fibrin-rich intravascular microthrombi were detected in the cerebral cortex of eNOS-deficient mice, confirming the pathological role of NO deficiency in hypercoagulopathy state independent of infection"
Article | Thread
Journal of Medical Economics
Quantifying all-cause healthcare resource utilization and costs of children with mild-to-moderate long COVID in France — Jingyan Yang et al.
"In the present study of 27,573 children diagnosed with COVID-19, 14.1% and 17.4% had long COVID per the WHO and NICE definitions, respectively. Evaluation of the all-cause HCRU and costs of these children demonstrated that pediatric long COVID managed in the community imposes a non-neglectable clinical and economic burden to the French healthcare system"
Article | Thread
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