News in Brief - March 2026
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Week beginning 2nd March 2026
News, advocacy and articles
UK #ThereForMe Guest post from Tessa Munt MP
The Liberal Democrat MP for Wells and Mendip Hills in Somerset and current chair of the APPG on ME covers the case for change for people with ME/CFS, the need for government action, and how people can get involved.
Blog | Thread
UK Parliament Sharon Hodgson MP has been appointed as the new Minister for Public Health and Prevention
Following Ashely Dalton’s resignation, Sharon Hodgson has been appointed as the replacement to this role in the Department of Health and Social Care. Sharon has previously taken part in the APPG on ME and has tabled written questions on ME/CFS. A video of one of these appearances in Parliament can be found below.
Website | Video | Thread
Norwegian guidelines for chronic fatigue and ME/CFS
Drafts for these guidelines were published last month by the Directorate of Health to big disappointment for being outdated. Three patient organisations have taken dissent. Patients are calling for a separate guideline for ME/CFS. Blog posts and opinion pieces on the guidelines are shared in the thread.
The Norwegian ME Association has a survey, open until March 22nd, where patients with ME or Long Covid can give input for the association's response to the guidelines draft.
David Tuller has written two articles summarising the issues:
- Norway's Problematic Draft Guideline Combining Long-Term Fatigue and ME/CFS
- More on Norway's Problematic Draft Guideline for "Long-Term Fatigue-including ME/CFS"
Survey l Thread
UK ME/CFS Alliance 20th Anniversary event covered by BBC South
The Winchester-based ME/CFS Alliance held a 20th Anniversary “Stronger Together” event with presentations, discussion and workshops with the community and researchers. The aim was to look at the work being done now and the steps needed to get the UK government to fund further research. BBC South covered the event and contacted the Department of Health & Social Care for comment but had not received a response.
Article | Video | Thread
UK HLTH Chat Podcast Episode 8: Treating ME and Long Covid with Dr Binita Kane
“In this episode of HLTH Chat, we talk to Dr. Binita Kane, a consultant respiratory physician and founder of The Long Covid Clinic, about the immense challenges of treating chronic post-viral illnesses and the realities of establishing a specialist independent service.”
“We explore why so many patients with Long Covid and ME/CFS feel abandoned by the current healthcare system, and how Dr. Kane’s personal experience with her daughter’s illness drove her to leave a 25-year NHS career to fill a critical gap in care.”
“and why international research investment is a vital beacon of hope for millions.”
Video | Thread
Solve ME and #MEAction are partnering on a medical education initiative for this year's Advocacy Week (March 23-27). They're asking a central question: "How can we close the knowledge gap in ME/CFS and Long COVID care?" Registration is now open for volunteers.
Solve ME Article | #MEAction Article | Thread
...........
Coming events
Bateman Horne Center – "Coffee" with a Clinician
Wednesday, March 11, 10 am MDT (9 am PT / 11 am CT / 12 pm ET)
Topic: Post-Exertional Malaise, Part 1
Free to attend, optional $5 donation.
Registration | Thread
Massachusetts ME/CFS and FM Association – Sunday Conversations
Sunday, March 15, 4 pm Eastern Time / 1 pm Pacific Time
Topic: Heal Thyself: The Doctor as Patient
The program will be recorded for later viewing.
Registration | Thread
...........
Research news and commentary
UK - ME Association Rosetta Stone Study – Summary: Three month update
Currently in its initial setup phase, the team is recruiting specialist staff, updating ethical approvals, and finalising lab methods. There is also mention of participant recruitment, use of the Elaros app, and challenges identified so far. A video interview with Danny Altmann is included.
Website | Video | Thread
USA - NIH RECOVER Research Update: March 2026
An update from the NIH on Long Covid research publications from the RECOVER program.
Article | Thread
..........
Research
ME/CFS research
Charting the circulating proteome in ME/CFS using cross-system profiling to uncover mechanistic insights — August Hoel et al.
"the serum proteome in ME/CFS reveals a distinct pattern characterized by reduced release of intracellular proteins and increased secretion of extracellular proteins, indicating widespread tissue involvement and disturbed systemic homeostasis." "The reduced release of intracellular skeletal muscle proteins appears to represent a distinct ME/CFS phenotype that is supported by our data."
Article | Thread
Extracellular Vesicle Protein and MiRNA Signatures as Biomarkers for Post-Infectious ME/CFS Patients — Martina Seifert et al.
"HBA was the only marker among the identified proteins in our quantitative analyses that could be validated by ELISA, exclusively in the piME/CFS cohort. Moreover, ALS/IGFALS, identified by our qualitative approach, also displayed significantly enhanced levels only in the piME/CFS cohort."
Article | Thread
Pipeline-optimized machine learning for chronic fatigue syndrome diagnosis: A lightweight, interpretable model using blood biochemical and metabolomic data — Li et al.
UK Biobank data, with self-reported diagnosis. "Our analysis reveals that total protein (TP), vitamin D (VD), total bilirubin (TBIL), urea, and alkaline phosphatase (ALP) are the five biomarkers with the highest contribution to the prediction of CFS risk."
Article | Thread
Assessment and Incidence Determination of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Following a SARS-CoV-2 Infection in a Prospective Cohort of Hospital Employees — Matthias Tack et al.
"our study found an incidence of at least 11.8% (CI 95% 7.8–16.8) for PCS with fatigue and 3.2% (CI 95% 1.3–6.4) for post-COVID-19 ME/CFS in HEs 21 months after the first SARS-CoV-2 infection."
Article | Thread
The association between hair cortisol levels, Epstein-Barr virus infections and chronic fatigue in adolescents — Berit Elise Bergem Kongsnes et al.
"elevated hair cortisol levels prior to EBV infection were not associated with an increased risk of developing chronic fatigue" "Chronic fatigue at six months following acute EBV infection is associated with reduced levels of hair cortisol" "our findings suggest that symptomatic fatigue precedes these physiological changes rather than resulting directly from them."
Article | Thread
Identifying post-exertional malaise subtypes: Differentiating physical and mental PEM manifestations — Katherine Tuzzolino et al.
"our results indicated that an increase in age is associated with reduced (i.e. less burdened) symptom scores. One explanation for this finding could be that as our sample aged, they had a better understanding of their functional capacity and could better manage the illness and its symptoms." "Notably, we found that the ME/CFS groups were not as burdened by emotional issues compared to the Control group"
Article | Thread
Is the RACGP HANDI recommendation of incremental physical activity for chronic fatigue syndrome/myalgic encephalomyelitis harming patients? — Stallard et al.
"Given the lack of sound research support for graded exercise therapy in ME/CFS, the contraindication of graded exercise therapy by best practice guidelines in the US and the UK, and patient reports of iatrogenic harm, the RACGP guideline, Incremental physical activity for chronic fatigue syndrome/ myalgic encephalomyelitis, should be withdrawn immediately."
Article | Thread
Long Covid research
Plasma proteomic profile reveals persistent immune activation in post-acute sequelae of SARS-CoV-2 infection — Fineschi et al.
"our extended proteomic analysis shows that key proinflammatory cytokines characterizing the acute phase of SARS-CoV-2 infection remain dysregulated in individuals with PASC, even long after the initial infection." "This persistent immune perturbation suggests a failure of proper immune resolution that may not require detectable viral persistence in plasma"
Article | Thread
Genome-wide DNA methylation profiling in COVID-19 positive patients reveals alterations in pathways linked to neurological dysfunction — Zameer et al.
"Our study shows that SARS-CoV-2 infection is associated with widespread, severity-specific epigenetic changes in peripheral blood, with minimal overlap in differentially methylated regions and genes among mild, moderate, and severe cases."
Article | Thread
Microbiota-derived extracellular vesicles link intestinal dysbiosis to neuroimmune activation in long COVID — Matheus Aranguren et al.
"Transfer of LC-associated microbiota into germ-free mice recapitulated features of intestinal barrier dysfunction, systemic inflammation, and neuroinflammation, with effects most pronounced in mice colonized with microbiota from individuals with neurological symptoms."
Preprint | Thread
Post COVID-19 condition is associated with altered regional cerebral blood volume as revealed by dynamic susceptibility contrast MRI — MacIntosh et al.
"The findings revealed a pattern of lower rCBV in the PCC group relative to controls in ROIs that have previously been reported in analogous structural and perfusion neuroimaging studies."
Article | Thread
Increased incidence of mild cognitive impairment in long COVID patients — Jennifer A. Frontera et al.
"Using National Alzheimer’s Coordinating Center (NACC) and National Institute on Aging (NIA) - Alzheimer’s Association criteria we found a significantly increased cumulative incidence and hazard of MCI (and specifically AD subtype of MCI) in Long-COVID patients, compared to recovered-COVID and COVID-negative controls."
Article | Thread
Association of symptoms of neuropsychological long COVID with imaging and plasma biomarkers — Taizen Nakase et al.
"In our study, imbalanced activity of the occipital lobe between the right and left hemispheres was associated with cognitive dysfunction. Reduced activity in the right parietal lobe is correlated with psychological symptoms."
Article | Thread
Long-COVID: assessment of circulating markers suggests no cerebral neuronal damage, neuroinflammation or systemic inflammation–a controlled study — Omdal et al.
"The lack of elevation in LC patients indicates that ongoing symptoms such as subjective cognitive impairment ("brain fog") are unlikely to result from structural neuronal damage." "GFAP levels were also comparable between groups, suggesting an absence of astrocyte-driven neuroinflammation.
Article | Thread
Work ability and associated factors among individuals with Post COVID-19 condition- a cross-sectional study — Stigmar et al.
"we found that more than half of the participants experienced poor work ability." "Despite this, the majority (70%) were working." "The most prevalent symptoms in our cohort were mental and physical fatigue together with dizziness."
Article | Thread
The impact of testing positive versus negative for COVID-19 on health-related quality of life: cross-sectional evidence from the Alberta post-COVID-19 follow-up survey — Kirwin et al.
"The study found that people who tested positive for COVID-19 reported a bigger drop in their health-related quality of life than those who tested negative." "This decline impacted several areas of daily life such as mobility, ability to partake in usual activities, pain, and mental health."
Article | Thread
‘What Do People With Long Covid Want From Healthcare Services?’ A Qualitative Exploration From Lived Experience — Clare Rayner et al.
"Patients emphasised the importance of being heard and the value of receiving timely care that reflects the latest scientific understanding and recognises their condition as real, treatable and deserving of ongoing clinical attention."
Article | Thread
..........
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
UK #ThereForMe Guest post from Tessa Munt MP
The Liberal Democrat MP for Wells and Mendip Hills in Somerset and current chair of the APPG on ME covers the case for change for people with ME/CFS, the need for government action, and how people can get involved.
Blog | Thread
UK Parliament Sharon Hodgson MP has been appointed as the new Minister for Public Health and Prevention
Following Ashely Dalton’s resignation, Sharon Hodgson has been appointed as the replacement to this role in the Department of Health and Social Care. Sharon has previously taken part in the APPG on ME and has tabled written questions on ME/CFS. A video of one of these appearances in Parliament can be found below.
Website | Video | Thread
Norwegian guidelines for chronic fatigue and ME/CFS
Drafts for these guidelines were published last month by the Directorate of Health to big disappointment for being outdated. Three patient organisations have taken dissent. Patients are calling for a separate guideline for ME/CFS. Blog posts and opinion pieces on the guidelines are shared in the thread.
The Norwegian ME Association has a survey, open until March 22nd, where patients with ME or Long Covid can give input for the association's response to the guidelines draft.
David Tuller has written two articles summarising the issues:
- Norway's Problematic Draft Guideline Combining Long-Term Fatigue and ME/CFS
- More on Norway's Problematic Draft Guideline for "Long-Term Fatigue-including ME/CFS"
Survey l Thread
UK ME/CFS Alliance 20th Anniversary event covered by BBC South
The Winchester-based ME/CFS Alliance held a 20th Anniversary “Stronger Together” event with presentations, discussion and workshops with the community and researchers. The aim was to look at the work being done now and the steps needed to get the UK government to fund further research. BBC South covered the event and contacted the Department of Health & Social Care for comment but had not received a response.
Article | Video | Thread
UK HLTH Chat Podcast Episode 8: Treating ME and Long Covid with Dr Binita Kane
“In this episode of HLTH Chat, we talk to Dr. Binita Kane, a consultant respiratory physician and founder of The Long Covid Clinic, about the immense challenges of treating chronic post-viral illnesses and the realities of establishing a specialist independent service.”
“We explore why so many patients with Long Covid and ME/CFS feel abandoned by the current healthcare system, and how Dr. Kane’s personal experience with her daughter’s illness drove her to leave a 25-year NHS career to fill a critical gap in care.”
“and why international research investment is a vital beacon of hope for millions.”
Video | Thread
Solve ME and #MEAction are partnering on a medical education initiative for this year's Advocacy Week (March 23-27). They're asking a central question: "How can we close the knowledge gap in ME/CFS and Long COVID care?" Registration is now open for volunteers.
Solve ME Article | #MEAction Article | Thread
...........
Coming events
Bateman Horne Center – "Coffee" with a Clinician
Wednesday, March 11, 10 am MDT (9 am PT / 11 am CT / 12 pm ET)
Topic: Post-Exertional Malaise, Part 1
Free to attend, optional $5 donation.
Registration | Thread
Massachusetts ME/CFS and FM Association – Sunday Conversations
Sunday, March 15, 4 pm Eastern Time / 1 pm Pacific Time
Topic: Heal Thyself: The Doctor as Patient
The program will be recorded for later viewing.
Registration | Thread
...........
Research news and commentary
UK - ME Association Rosetta Stone Study – Summary: Three month update
Currently in its initial setup phase, the team is recruiting specialist staff, updating ethical approvals, and finalising lab methods. There is also mention of participant recruitment, use of the Elaros app, and challenges identified so far. A video interview with Danny Altmann is included.
Website | Video | Thread
USA - NIH RECOVER Research Update: March 2026
An update from the NIH on Long Covid research publications from the RECOVER program.
Article | Thread
..........
Research
ME/CFS research
Charting the circulating proteome in ME/CFS using cross-system profiling to uncover mechanistic insights — August Hoel et al.
"the serum proteome in ME/CFS reveals a distinct pattern characterized by reduced release of intracellular proteins and increased secretion of extracellular proteins, indicating widespread tissue involvement and disturbed systemic homeostasis." "The reduced release of intracellular skeletal muscle proteins appears to represent a distinct ME/CFS phenotype that is supported by our data."
Article | Thread
Extracellular Vesicle Protein and MiRNA Signatures as Biomarkers for Post-Infectious ME/CFS Patients — Martina Seifert et al.
"HBA was the only marker among the identified proteins in our quantitative analyses that could be validated by ELISA, exclusively in the piME/CFS cohort. Moreover, ALS/IGFALS, identified by our qualitative approach, also displayed significantly enhanced levels only in the piME/CFS cohort."
Article | Thread
Pipeline-optimized machine learning for chronic fatigue syndrome diagnosis: A lightweight, interpretable model using blood biochemical and metabolomic data — Li et al.
UK Biobank data, with self-reported diagnosis. "Our analysis reveals that total protein (TP), vitamin D (VD), total bilirubin (TBIL), urea, and alkaline phosphatase (ALP) are the five biomarkers with the highest contribution to the prediction of CFS risk."
Article | Thread
Assessment and Incidence Determination of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Following a SARS-CoV-2 Infection in a Prospective Cohort of Hospital Employees — Matthias Tack et al.
"our study found an incidence of at least 11.8% (CI 95% 7.8–16.8) for PCS with fatigue and 3.2% (CI 95% 1.3–6.4) for post-COVID-19 ME/CFS in HEs 21 months after the first SARS-CoV-2 infection."
Article | Thread
The association between hair cortisol levels, Epstein-Barr virus infections and chronic fatigue in adolescents — Berit Elise Bergem Kongsnes et al.
"elevated hair cortisol levels prior to EBV infection were not associated with an increased risk of developing chronic fatigue" "Chronic fatigue at six months following acute EBV infection is associated with reduced levels of hair cortisol" "our findings suggest that symptomatic fatigue precedes these physiological changes rather than resulting directly from them."
Article | Thread
Identifying post-exertional malaise subtypes: Differentiating physical and mental PEM manifestations — Katherine Tuzzolino et al.
"our results indicated that an increase in age is associated with reduced (i.e. less burdened) symptom scores. One explanation for this finding could be that as our sample aged, they had a better understanding of their functional capacity and could better manage the illness and its symptoms." "Notably, we found that the ME/CFS groups were not as burdened by emotional issues compared to the Control group"
Article | Thread
Is the RACGP HANDI recommendation of incremental physical activity for chronic fatigue syndrome/myalgic encephalomyelitis harming patients? — Stallard et al.
"Given the lack of sound research support for graded exercise therapy in ME/CFS, the contraindication of graded exercise therapy by best practice guidelines in the US and the UK, and patient reports of iatrogenic harm, the RACGP guideline, Incremental physical activity for chronic fatigue syndrome/ myalgic encephalomyelitis, should be withdrawn immediately."
Article | Thread
Long Covid research
Plasma proteomic profile reveals persistent immune activation in post-acute sequelae of SARS-CoV-2 infection — Fineschi et al.
"our extended proteomic analysis shows that key proinflammatory cytokines characterizing the acute phase of SARS-CoV-2 infection remain dysregulated in individuals with PASC, even long after the initial infection." "This persistent immune perturbation suggests a failure of proper immune resolution that may not require detectable viral persistence in plasma"
Article | Thread
Genome-wide DNA methylation profiling in COVID-19 positive patients reveals alterations in pathways linked to neurological dysfunction — Zameer et al.
"Our study shows that SARS-CoV-2 infection is associated with widespread, severity-specific epigenetic changes in peripheral blood, with minimal overlap in differentially methylated regions and genes among mild, moderate, and severe cases."
Article | Thread
Microbiota-derived extracellular vesicles link intestinal dysbiosis to neuroimmune activation in long COVID — Matheus Aranguren et al.
"Transfer of LC-associated microbiota into germ-free mice recapitulated features of intestinal barrier dysfunction, systemic inflammation, and neuroinflammation, with effects most pronounced in mice colonized with microbiota from individuals with neurological symptoms."
Preprint | Thread
Post COVID-19 condition is associated with altered regional cerebral blood volume as revealed by dynamic susceptibility contrast MRI — MacIntosh et al.
"The findings revealed a pattern of lower rCBV in the PCC group relative to controls in ROIs that have previously been reported in analogous structural and perfusion neuroimaging studies."
Article | Thread
Increased incidence of mild cognitive impairment in long COVID patients — Jennifer A. Frontera et al.
"Using National Alzheimer’s Coordinating Center (NACC) and National Institute on Aging (NIA) - Alzheimer’s Association criteria we found a significantly increased cumulative incidence and hazard of MCI (and specifically AD subtype of MCI) in Long-COVID patients, compared to recovered-COVID and COVID-negative controls."
Article | Thread
Association of symptoms of neuropsychological long COVID with imaging and plasma biomarkers — Taizen Nakase et al.
"In our study, imbalanced activity of the occipital lobe between the right and left hemispheres was associated with cognitive dysfunction. Reduced activity in the right parietal lobe is correlated with psychological symptoms."
Article | Thread
Long-COVID: assessment of circulating markers suggests no cerebral neuronal damage, neuroinflammation or systemic inflammation–a controlled study — Omdal et al.
"The lack of elevation in LC patients indicates that ongoing symptoms such as subjective cognitive impairment ("brain fog") are unlikely to result from structural neuronal damage." "GFAP levels were also comparable between groups, suggesting an absence of astrocyte-driven neuroinflammation.
Article | Thread
Work ability and associated factors among individuals with Post COVID-19 condition- a cross-sectional study — Stigmar et al.
"we found that more than half of the participants experienced poor work ability." "Despite this, the majority (70%) were working." "The most prevalent symptoms in our cohort were mental and physical fatigue together with dizziness."
Article | Thread
The impact of testing positive versus negative for COVID-19 on health-related quality of life: cross-sectional evidence from the Alberta post-COVID-19 follow-up survey — Kirwin et al.
"The study found that people who tested positive for COVID-19 reported a bigger drop in their health-related quality of life than those who tested negative." "This decline impacted several areas of daily life such as mobility, ability to partake in usual activities, pain, and mental health."
Article | Thread
‘What Do People With Long Covid Want From Healthcare Services?’ A Qualitative Exploration From Lived Experience — Clare Rayner et al.
"Patients emphasised the importance of being heard and the value of receiving timely care that reflects the latest scientific understanding and recognises their condition as real, treatable and deserving of ongoing clinical attention."
Article | Thread
..........
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 9th March 2026
News, advocacy and articles
International Long Covid Awareness Day is March 15. A forum thread has been created for news coverage, posts by advocacy groups, and other related items.
Thread
USA - #MEAction #MEAction Sends Joint Letter Asking Senate to Appropriate $50 million to ME/CFS Research
#MEAction, #NotJustFatigue, and Solve ME have asked the US Senate for dedicated funding to support implementation of the ME/CFS Research Roadmap. NIH Director, Dr. Bhattacharya, has agreed to meet with representatives from #MEAction.
Article | Letter | Thread
USA - #MEAction #MEAction Sends Letter to 42 States Urging Recognition of ME/CFS and Long COVID as Serious Medical Conditions
New Medicaid rules will require recipients to work 80 hours per month or lose their health insurance – unless they can prove they have a "serious or complex medical condition” in order to get a "medically frail" exemption.
Article | Thread
Trial by Error by David Tuller
- Why is Professor Crawly Still on the COFFI Steering Committee?
COFFI (Collaborative On Fatigue and related symptoms Following Infection) lists professor Esther Crawley as a current member of its steering committee despite her no longer having any official role at her former university or no longer practices medicine. Tuller has asked the chair of the steering committee professor Vegard Wyller about her current role with COFFI.
Article l Thread
- Norway Disability Case Exposes Flaws in Draft Guideline for "Long-Term Fatigue-including ME/CFS"
A distressing account by Trude Schei from the Norwegian ME Association of a recent court case concerning young severe ME sufferer Kolbjørn's rights of disability benefits. The case provides worrying insight into The Norwegian Labour and Welfare Administration view of ME. If it can claim that the prognosis for ME is good, and that recovery from ME is up to faith, hope and motivation, any failure to get better can be interpreted as the patient’s fault.
"The case also highlights how important it is that a new guideline is clear about what it actually recommends, what the expected prognosis is, that it does not mention treatment options that do not exist, and that it is crystal clear about the very real risk of permanent deterioration in severe/repeated PEM."
Article l Thread
- Aussie GPs Still Push Graded Exercise Therapy
The Royal Australian College of General Practitioners still recommend graded exercise therapy in their Handbook of Non-Drug Interventions (HANDI), including an endorsement of the fraudulent PACE trial. Tuller summarises a debate about this in the Australian Journal of General Practice.
Article l Thread
Bateman Horne Center Orthostatic Intolerance/Dysautonomia: Pharmacological Treatment Approaches
A recording of the Long Covid & Post Infectious Syndromes ECHO session held on January 6 is now available.
Video | Thread
..........
Coming events
Bateman Horne Center - Free Online Support Group
Tuesday, March 17, 1:00 - 2:00 PM Mountain Time
Topic: Life Stages and Aging with ME/CFS or Long COVID
Advance registration required, see thread for times in your time zone.
Registration | Thread
Long COVID & Post Infectious Syndrome ECHO Session
Tuesday, April 7, noon - 1 pm Mountain Time
Topic: CPET & Metabolic Dysfunction with Long COVID
CME credit for clinicians, speakers are Todd Davenport and Staci Stevens.
Website | Registration | Thread
...........
Research news and commentary
USA - RECOVER Initiative (NIH) Honoring the many lived experiences with Long COVID
The article starts with a mention of International Long COVID Awareness Day, March 15. It then lists some of the ways that Long Covid patients have "contributed their time, perspectives, and health information" to the RECOVER initiative research.
Article | Thread
...........
Research
Long Covid research
Persistent Gut-Immune Axis dysregulation in long-term Post-COVID Syndrome: Insights from a prospective, observational, cross-sectional case-control study — Augustin et al
"we observed persistent viral proteins in the terminal ileum" "increased local mast cell activation, elevated zonulin levels, and an expansion of pDCs and NK cells CD56dim in the terminal ileum support a role for the gut-immune interface in PCS pathogenesis."
Article | Thread
Persistent SARS-CoV-2 Spike is Associated with Localized Immune Dysregulation in Long COVID Gut Biopsies — Salim Abraham Soria et al
"We confirmed the persistence of SARS-CoV-2 Spike transcript and protein in the gut tissue of all LC cases and controls tested." "comparison of Spike-positive regions in LC versus healthy control colon tissues revealed a differential, symptomatic state-associated signature, with 57 differentially expressed genes"
Preprint | Thread
Impaired VLCFA-peroxisome-mediated intestinal epithelial repair causes gastrointestinal sequelae of long COVID — Man Wang et al
"findings support a model in which spike disrupts VLCFA metabolism by binding key lipid metabolic regulators and sequestering [linoleic acid], thereby suppressing PPAR-peroxisome signaling, impairing [enterocyte] differentiation and epithelial regeneration, and contributing to persistent GI symptoms."
Article | Thread
Advancing understanding of long COVID pathophysiology through quantum walk-based network analysis — Park et al
"The key function of the subnetwork we identified was the regulation of Ca2+ at the [mitochondria-associated membranes], with particular emphasis on VDAC1, a voltage-dependent anion channel protein that directly participates in mitochondrial Ca2+ transport."
Article | Thread
Dysregulated NK-cell gene expression defines the enduring symptoms of long COVID-19 — Ray et al
"both pro-inflammatory cytokines […] and the anti-inflammatory cytokine IL-10 were reduced in LTCS" "This suggests a dampened cytokine signaling state, rather than the persistent hyperinflammation often assumed" "these stratified comparisons support a model in which LTCS is characterized […] by selective failures in innate–adaptive immune coordination and immune recovery."
Article | Thread
Clinical relevance of circulating blood microaggregates and reactivation of Epstein Barr Virus in long-term Post-CoVID syndrome patients — Wick et al
"we performed live confocal fluorescence microscopy of native, i.e., unfixed, blood samples to detect free-floating cellular aggregates under unperturbed conditions." "we were surprised to find primarily floating globular aggregates that were covered by thrombocytes around a so far undefined core of glyco-rich amorphic material."
Article | Thread
A Randomized Trial of Vitamin D Supplementation and COVID-19 Clinical Outcomes and Long COVID: The Vitamin D for COVID-19 Trial — Ganmaa et al
"The 4-wk cumulative incidence of healthcare utilization in index participants did not significantly differ between the vitamin D3 (n = 863) and placebo (n = 884) groups" "Similar nonsignificant results were observed for the prespecified secondary treatment and prevention outcomes"
Article | Thread
Prevalence of Post-COVID Symptoms Across Variants of Concern and Follow-up Periods: A Systematic Review and Meta-Analysis — Eiron John Lugtu et al
"Although the overall prevalence of post-COVID-19 condition was higher among pre-Omicron infections, the condition continues to exert a sustained burden across variant lineages." "Fatigue consistently emerged as the most long-lasting post-COVID symptom, while distinct symptom patterns were noted"
Article | Thread
A phase 2a double-blind, placebo-controlled randomized trial of the SARS-CoV-2-specific monoclonal antibody AER002 in people with Long COVID — Michael J. Peluso et al
"no significant differences in physical health, quality of life, objective measures of physical function or cognition, or bloodbased biomarkers were demonstrated between the treatment and control arms."
Preprint | Thread
Developing a platform protocol for clinical trials evaluating interventions that target proposed mechanisms of Long COVID: RECOVER-VITAL — Kanecia O Zimmerman et al
"The RECOVER Viral Persistence and Reactivation, and Immune Dysregulation (RECOVER-VITAL) protocol was the first to be developed, and the workgroup was tasked in August 2022 with creating a platform protocol for evaluation of interventions that might target the proposed underlying etiologies of Long COVID, including viral persistence, immune dysregulation, and altered coagulation."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
International Long Covid Awareness Day is March 15. A forum thread has been created for news coverage, posts by advocacy groups, and other related items.
Thread
USA - #MEAction #MEAction Sends Joint Letter Asking Senate to Appropriate $50 million to ME/CFS Research
#MEAction, #NotJustFatigue, and Solve ME have asked the US Senate for dedicated funding to support implementation of the ME/CFS Research Roadmap. NIH Director, Dr. Bhattacharya, has agreed to meet with representatives from #MEAction.
Article | Letter | Thread
USA - #MEAction #MEAction Sends Letter to 42 States Urging Recognition of ME/CFS and Long COVID as Serious Medical Conditions
New Medicaid rules will require recipients to work 80 hours per month or lose their health insurance – unless they can prove they have a "serious or complex medical condition” in order to get a "medically frail" exemption.
Article | Thread
Trial by Error by David Tuller
- Why is Professor Crawly Still on the COFFI Steering Committee?
COFFI (Collaborative On Fatigue and related symptoms Following Infection) lists professor Esther Crawley as a current member of its steering committee despite her no longer having any official role at her former university or no longer practices medicine. Tuller has asked the chair of the steering committee professor Vegard Wyller about her current role with COFFI.
Article l Thread
- Norway Disability Case Exposes Flaws in Draft Guideline for "Long-Term Fatigue-including ME/CFS"
A distressing account by Trude Schei from the Norwegian ME Association of a recent court case concerning young severe ME sufferer Kolbjørn's rights of disability benefits. The case provides worrying insight into The Norwegian Labour and Welfare Administration view of ME. If it can claim that the prognosis for ME is good, and that recovery from ME is up to faith, hope and motivation, any failure to get better can be interpreted as the patient’s fault.
"The case also highlights how important it is that a new guideline is clear about what it actually recommends, what the expected prognosis is, that it does not mention treatment options that do not exist, and that it is crystal clear about the very real risk of permanent deterioration in severe/repeated PEM."
Article l Thread
- Aussie GPs Still Push Graded Exercise Therapy
The Royal Australian College of General Practitioners still recommend graded exercise therapy in their Handbook of Non-Drug Interventions (HANDI), including an endorsement of the fraudulent PACE trial. Tuller summarises a debate about this in the Australian Journal of General Practice.
Article l Thread
Bateman Horne Center Orthostatic Intolerance/Dysautonomia: Pharmacological Treatment Approaches
A recording of the Long Covid & Post Infectious Syndromes ECHO session held on January 6 is now available.
Video | Thread
..........
Coming events
Bateman Horne Center - Free Online Support Group
Tuesday, March 17, 1:00 - 2:00 PM Mountain Time
Topic: Life Stages and Aging with ME/CFS or Long COVID
Advance registration required, see thread for times in your time zone.
Registration | Thread
Long COVID & Post Infectious Syndrome ECHO Session
Tuesday, April 7, noon - 1 pm Mountain Time
Topic: CPET & Metabolic Dysfunction with Long COVID
CME credit for clinicians, speakers are Todd Davenport and Staci Stevens.
Website | Registration | Thread
...........
Research news and commentary
USA - RECOVER Initiative (NIH) Honoring the many lived experiences with Long COVID
The article starts with a mention of International Long COVID Awareness Day, March 15. It then lists some of the ways that Long Covid patients have "contributed their time, perspectives, and health information" to the RECOVER initiative research.
Article | Thread
...........
Research
Long Covid research
Persistent Gut-Immune Axis dysregulation in long-term Post-COVID Syndrome: Insights from a prospective, observational, cross-sectional case-control study — Augustin et al
"we observed persistent viral proteins in the terminal ileum" "increased local mast cell activation, elevated zonulin levels, and an expansion of pDCs and NK cells CD56dim in the terminal ileum support a role for the gut-immune interface in PCS pathogenesis."
Article | Thread
Persistent SARS-CoV-2 Spike is Associated with Localized Immune Dysregulation in Long COVID Gut Biopsies — Salim Abraham Soria et al
"We confirmed the persistence of SARS-CoV-2 Spike transcript and protein in the gut tissue of all LC cases and controls tested." "comparison of Spike-positive regions in LC versus healthy control colon tissues revealed a differential, symptomatic state-associated signature, with 57 differentially expressed genes"
Preprint | Thread
Impaired VLCFA-peroxisome-mediated intestinal epithelial repair causes gastrointestinal sequelae of long COVID — Man Wang et al
"findings support a model in which spike disrupts VLCFA metabolism by binding key lipid metabolic regulators and sequestering [linoleic acid], thereby suppressing PPAR-peroxisome signaling, impairing [enterocyte] differentiation and epithelial regeneration, and contributing to persistent GI symptoms."
Article | Thread
Advancing understanding of long COVID pathophysiology through quantum walk-based network analysis — Park et al
"The key function of the subnetwork we identified was the regulation of Ca2+ at the [mitochondria-associated membranes], with particular emphasis on VDAC1, a voltage-dependent anion channel protein that directly participates in mitochondrial Ca2+ transport."
Article | Thread
Dysregulated NK-cell gene expression defines the enduring symptoms of long COVID-19 — Ray et al
"both pro-inflammatory cytokines […] and the anti-inflammatory cytokine IL-10 were reduced in LTCS" "This suggests a dampened cytokine signaling state, rather than the persistent hyperinflammation often assumed" "these stratified comparisons support a model in which LTCS is characterized […] by selective failures in innate–adaptive immune coordination and immune recovery."
Article | Thread
Clinical relevance of circulating blood microaggregates and reactivation of Epstein Barr Virus in long-term Post-CoVID syndrome patients — Wick et al
"we performed live confocal fluorescence microscopy of native, i.e., unfixed, blood samples to detect free-floating cellular aggregates under unperturbed conditions." "we were surprised to find primarily floating globular aggregates that were covered by thrombocytes around a so far undefined core of glyco-rich amorphic material."
Article | Thread
A Randomized Trial of Vitamin D Supplementation and COVID-19 Clinical Outcomes and Long COVID: The Vitamin D for COVID-19 Trial — Ganmaa et al
"The 4-wk cumulative incidence of healthcare utilization in index participants did not significantly differ between the vitamin D3 (n = 863) and placebo (n = 884) groups" "Similar nonsignificant results were observed for the prespecified secondary treatment and prevention outcomes"
Article | Thread
Prevalence of Post-COVID Symptoms Across Variants of Concern and Follow-up Periods: A Systematic Review and Meta-Analysis — Eiron John Lugtu et al
"Although the overall prevalence of post-COVID-19 condition was higher among pre-Omicron infections, the condition continues to exert a sustained burden across variant lineages." "Fatigue consistently emerged as the most long-lasting post-COVID symptom, while distinct symptom patterns were noted"
Article | Thread
A phase 2a double-blind, placebo-controlled randomized trial of the SARS-CoV-2-specific monoclonal antibody AER002 in people with Long COVID — Michael J. Peluso et al
"no significant differences in physical health, quality of life, objective measures of physical function or cognition, or bloodbased biomarkers were demonstrated between the treatment and control arms."
Preprint | Thread
Developing a platform protocol for clinical trials evaluating interventions that target proposed mechanisms of Long COVID: RECOVER-VITAL — Kanecia O Zimmerman et al
"The RECOVER Viral Persistence and Reactivation, and Immune Dysregulation (RECOVER-VITAL) protocol was the first to be developed, and the workgroup was tasked in August 2022 with creating a platform protocol for evaluation of interventions that might target the proposed underlying etiologies of Long COVID, including viral persistence, immune dysregulation, and altered coagulation."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 16th March 2026
News, advocacy and articles
UK NHS England releases e-learning module “Supporting people with severe ME/CFS”
NHS England have released a modified version of their materials aimed at helping healthcare professionals understand how to support people living with Severe or Very Severe ME/CFS. Unlike the previous version which was restricted to those with a qualifying work email address this module is available to view by anyone who registers for a general user account.
Website | Thread
UK Government asks for input into PIP review
The Timms Review, which is examining the PIP component of the UK benefits system ahead of possible future changes, opened a Call for Evidence which runs until 28 May. Feedback can be given via an online form, other formats are available on request.
“Anyone can respond and those with lived or learned experience of PIP, including disabled people, the organisations that represent them, carers, clinicians, experts, MPs, and other elected officials across the UK, are particularly encouraged to do so.”
Website | Form | Thread
The Patient-Led Research Collaborative has released a "2026 Long Covid Fact Sheet"
Website | Thread
USA - Solve ME and #MEAction have published a participant toolkit for Advocacy Week. Volunteers must be registered in order to attend the online kickoff session scheduled for Monday, March 23 (session will be recorded for later viewing).
Toolkit (PDF) | Toolkit (online version) | Thread
Australia - Emerge Parliamentary Friends of ME/CFS
The recording of the meeting from 10th March 2026 is now available.
Website | Thread
Aotearoa New Zealand Management of Long Covid in primary care
A Victoria University of Wellington team has launched a resource for GPs, following co-design workshops to understand patient experiences of illness and care.
PDF | Video Introduction | Thread
Aotearoa New Zealand COVID-19 and long COVID 2024/25: New Zealand Health Survey
The Government has released the findings of a survey, indicating that approximately 185,000 adults were experiencing long COVID symptoms in 2024/25. The Ministry of Health and Health New Zealand told TVNZ’s Breakfast programme they had “no plans for Long Covid monitoring nor for any economic analysis.”
Report | TVNZ interview (Geo-locked) | Thread
Response from Long Covid Support Aotearoa (LCSA) Written statement and interview on Radio NZ's Morning Report
"Long Covid – and associated health conditions such as ME/CFS – remains poorly recognised and under-supported in New Zealand, despite growing international evidence about its impacts."
"'Now that the scale of the problem is clearer, we want to know why there are still no plans to monitor it,' [spokesperson Larisa] Hockey said."
LCSA Response | RNZ Interview
..........
Coming events
Solve ME Webinar GLP-1 Drugs to Reduce Symptoms in People with ME/CFS and Identify Disease Subgroups
Thursday, April 16, 8:30 am Pacific / 11:30 am Eastern
Announcement | Registration | Thread
UK - PRIME Research Project Workshop The Similarities and Distinctions between Long Covid & ME/CFS
Friday, April 24, 2 - 5 pm GMT
PRIME is a four‑year programme led by Professor Chris Ponting and co‑produced with Action for ME. This second workshop includes speakers from Imperial College, PrecisionLife and the PolyBio Research Foundation. “This workshop will critically examine similarities and distinctions between ME/CFS and Long Covid across clinical, biological, and research frameworks, with the aim of leveraging insights from both fields to inform diagnosis, stratification, and therapeutic development.”
Announcement | Registration | Thread
.........
Research news and commentary
ME/CFS Science Blog The immune system in ME/CFS
This blog post, an overview of research findings on the immune system in ME/CFS patients, concludes that "current data do not suggest that (low-grade) inflammation is a key driver of ME/CFS symptoms."
Article | Thread
.........
Research
ME/CFS research
Incidence age is bimodal for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, with higher severity burden for early onset disease — Mcgrath et al
"A key strength of our study is that it is the first to examine age at onset (rather than diagnosis) in a large dataset covering multiple countries with diverse healthcare systems." "Since substantial ME/CFS diagnostic delays and inequalities are unfortunately widespread, our onset-age estimates capture the incidence of ME/CFS across different age groups more accurately."
Article | Thread
Evidence of White Matter Neuroinflammation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Diffusion-Based Neuroinflammation Imaging Study — Qiang Yu et al
"This study revealed significantly reduced NII-HR and NII-RF in ME/CFS patients compared to HCs." "NII-HR reflects hindered extracellular diffusion that may be affected by edema."
Article | Thread
Intersectionality, healthcare and myalgic encephalomyelitis: Reflections from experience — Joanne Hunt
"Focusing on [ME/CFS] and drawing on my own experience as a multiply marginalised disabled person in the UK, I make a case for UK healthcare to be informed by intersectionality, not as empty rhetoric but as critical social praxis and much-needed epistemic intervention."
Article | Thread
Long Covid research
Microcirculatory impairment and increased arterial stiffness in pediatric Long COVID patients — Boever et al
"Our findings collectively reveal substantial microvascular impairments and increased arterial stiffness in pediatric Long COVID patients, particularly among those presenting with dyspnea."
Article | Thread
Persistent T cell phenotypic alterations and early innate immune dysregulation as potential biomarkers of Long COVID — Marina Perez-Mazzali et al
Hospitalised patients. "during the acute stage of the disease, differences between patients who subsequently developed LC are mainly found in the innate immunity compartment, while 3 months after hospital discharge these differences are related to the adaptive immune system."
Article | Thread
Persistence of Post-Acute COVID-19 Sequelae (PASC) symptoms in healthcare workers four years after ancestral SARS-CoV-2 infection: a prospective multicentre cohort — Saurer et al
"In a prospective multicentre cohort of HCWs, we demonstrate a non-linear decline in PASC-specific symptoms over time, with up to 60% of individuals still reporting symptoms after a median of almost 4 years after aSCV2 infection." "Fatigue, brain fog, and loss of smell or taste are the most prevalent symptoms."
Article | Thread
Severe acute COVID-19 and early long COVID signals in paediatric cohorts: an analysis of real-world data from two health departments, Germany — Schmidt et al
"Increasing evidence suggests an association between severe acute COVID-19 in children and ME/CFS-like sequelae" "Although our cross-sectional design did not allow a formal diagnosis of ME/CFS or causal inference, the observed stepwise increase in the prevalence of persistent symptoms - from 0% among asymptomatic cases to 50% following severe COVID-19 - provides an exploratory signal."
Article | Thread
Long-term trends in Post-COVID severity: a machine learning analysis from the POP/COVIDOM cohort of the German NAPKON Cohort Network — Julian Gutzeit et al
"Most patients showed little change in their symptoms over time, and differences between individuals remained quite stable." "This suggests that once post-COVID symptoms are established, they tend to remain relatively stable, with only modest and uniform improvement in most patients."
Article | Thread
Clinical practice guideline for long COVID prevention and treatment — Bin Cao et al
"most evidence came from observational studies of variable quality, leading to low to very low certainty of evidence for many recommendations due to bias, inconsistency (e.g., high I² values in meta-analyses), and imprecision."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
UK NHS England releases e-learning module “Supporting people with severe ME/CFS”
NHS England have released a modified version of their materials aimed at helping healthcare professionals understand how to support people living with Severe or Very Severe ME/CFS. Unlike the previous version which was restricted to those with a qualifying work email address this module is available to view by anyone who registers for a general user account.
Website | Thread
UK Government asks for input into PIP review
The Timms Review, which is examining the PIP component of the UK benefits system ahead of possible future changes, opened a Call for Evidence which runs until 28 May. Feedback can be given via an online form, other formats are available on request.
“Anyone can respond and those with lived or learned experience of PIP, including disabled people, the organisations that represent them, carers, clinicians, experts, MPs, and other elected officials across the UK, are particularly encouraged to do so.”
Website | Form | Thread
The Patient-Led Research Collaborative has released a "2026 Long Covid Fact Sheet"
Website | Thread
USA - Solve ME and #MEAction have published a participant toolkit for Advocacy Week. Volunteers must be registered in order to attend the online kickoff session scheduled for Monday, March 23 (session will be recorded for later viewing).
Toolkit (PDF) | Toolkit (online version) | Thread
Australia - Emerge Parliamentary Friends of ME/CFS
The recording of the meeting from 10th March 2026 is now available.
Website | Thread
Aotearoa New Zealand Management of Long Covid in primary care
A Victoria University of Wellington team has launched a resource for GPs, following co-design workshops to understand patient experiences of illness and care.
PDF | Video Introduction | Thread
Aotearoa New Zealand COVID-19 and long COVID 2024/25: New Zealand Health Survey
The Government has released the findings of a survey, indicating that approximately 185,000 adults were experiencing long COVID symptoms in 2024/25. The Ministry of Health and Health New Zealand told TVNZ’s Breakfast programme they had “no plans for Long Covid monitoring nor for any economic analysis.”
Report | TVNZ interview (Geo-locked) | Thread
Response from Long Covid Support Aotearoa (LCSA) Written statement and interview on Radio NZ's Morning Report
"Long Covid – and associated health conditions such as ME/CFS – remains poorly recognised and under-supported in New Zealand, despite growing international evidence about its impacts."
"'Now that the scale of the problem is clearer, we want to know why there are still no plans to monitor it,' [spokesperson Larisa] Hockey said."
LCSA Response | RNZ Interview
..........
Coming events
Solve ME Webinar GLP-1 Drugs to Reduce Symptoms in People with ME/CFS and Identify Disease Subgroups
Thursday, April 16, 8:30 am Pacific / 11:30 am Eastern
Announcement | Registration | Thread
UK - PRIME Research Project Workshop The Similarities and Distinctions between Long Covid & ME/CFS
Friday, April 24, 2 - 5 pm GMT
PRIME is a four‑year programme led by Professor Chris Ponting and co‑produced with Action for ME. This second workshop includes speakers from Imperial College, PrecisionLife and the PolyBio Research Foundation. “This workshop will critically examine similarities and distinctions between ME/CFS and Long Covid across clinical, biological, and research frameworks, with the aim of leveraging insights from both fields to inform diagnosis, stratification, and therapeutic development.”
Announcement | Registration | Thread
.........
Research news and commentary
ME/CFS Science Blog The immune system in ME/CFS
This blog post, an overview of research findings on the immune system in ME/CFS patients, concludes that "current data do not suggest that (low-grade) inflammation is a key driver of ME/CFS symptoms."
Article | Thread
.........
Research
ME/CFS research
Incidence age is bimodal for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, with higher severity burden for early onset disease — Mcgrath et al
"A key strength of our study is that it is the first to examine age at onset (rather than diagnosis) in a large dataset covering multiple countries with diverse healthcare systems." "Since substantial ME/CFS diagnostic delays and inequalities are unfortunately widespread, our onset-age estimates capture the incidence of ME/CFS across different age groups more accurately."
Article | Thread
Evidence of White Matter Neuroinflammation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Diffusion-Based Neuroinflammation Imaging Study — Qiang Yu et al
"This study revealed significantly reduced NII-HR and NII-RF in ME/CFS patients compared to HCs." "NII-HR reflects hindered extracellular diffusion that may be affected by edema."
Article | Thread
Intersectionality, healthcare and myalgic encephalomyelitis: Reflections from experience — Joanne Hunt
"Focusing on [ME/CFS] and drawing on my own experience as a multiply marginalised disabled person in the UK, I make a case for UK healthcare to be informed by intersectionality, not as empty rhetoric but as critical social praxis and much-needed epistemic intervention."
Article | Thread
Long Covid research
Microcirculatory impairment and increased arterial stiffness in pediatric Long COVID patients — Boever et al
"Our findings collectively reveal substantial microvascular impairments and increased arterial stiffness in pediatric Long COVID patients, particularly among those presenting with dyspnea."
Article | Thread
Persistent T cell phenotypic alterations and early innate immune dysregulation as potential biomarkers of Long COVID — Marina Perez-Mazzali et al
Hospitalised patients. "during the acute stage of the disease, differences between patients who subsequently developed LC are mainly found in the innate immunity compartment, while 3 months after hospital discharge these differences are related to the adaptive immune system."
Article | Thread
Persistence of Post-Acute COVID-19 Sequelae (PASC) symptoms in healthcare workers four years after ancestral SARS-CoV-2 infection: a prospective multicentre cohort — Saurer et al
"In a prospective multicentre cohort of HCWs, we demonstrate a non-linear decline in PASC-specific symptoms over time, with up to 60% of individuals still reporting symptoms after a median of almost 4 years after aSCV2 infection." "Fatigue, brain fog, and loss of smell or taste are the most prevalent symptoms."
Article | Thread
Severe acute COVID-19 and early long COVID signals in paediatric cohorts: an analysis of real-world data from two health departments, Germany — Schmidt et al
"Increasing evidence suggests an association between severe acute COVID-19 in children and ME/CFS-like sequelae" "Although our cross-sectional design did not allow a formal diagnosis of ME/CFS or causal inference, the observed stepwise increase in the prevalence of persistent symptoms - from 0% among asymptomatic cases to 50% following severe COVID-19 - provides an exploratory signal."
Article | Thread
Long-term trends in Post-COVID severity: a machine learning analysis from the POP/COVIDOM cohort of the German NAPKON Cohort Network — Julian Gutzeit et al
"Most patients showed little change in their symptoms over time, and differences between individuals remained quite stable." "This suggests that once post-COVID symptoms are established, they tend to remain relatively stable, with only modest and uniform improvement in most patients."
Article | Thread
Clinical practice guideline for long COVID prevention and treatment — Bin Cao et al
"most evidence came from observational studies of variable quality, leading to low to very low certainty of evidence for many recommendations due to bias, inconsistency (e.g., high I² values in meta-analyses), and imprecision."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 23rd March 2026
News, advocacy and articles
UK DHSC delays commissioning of services for the most severely affected
The Department of Health and Social Care now expect that work will begin in April 2027 to start the process of commissioning a service for those with very severe ME/CFS. This is said to be due to wider organisational changes within the NHS. #ThereForME have produced a PDF briefing on the topic.
PDF | Thread
UK Withdraw the FII Label campaign (Fabricated and Induced Illness)
A campaign group led by survivors, clinicians, social workers and academics, and supported by organisations including Action for ME and the ME Association, has produced an open letter which people are invited to sign. The letter calls for the label FII to be withdrawn immediately and replaced with evidence based guidance, better training, regulatory review and judicial caution.
"This not safeguarding. It is systemic harm."
Website | MEA article | Thread
BBC Wales Our son loved the outdoors – invisible illness means he now can't walk or talk
The article includes several people with ME/CFS in Wales where NHS services are patchy. The Welsh Government is quoted: "Proposals for an all‑Wales specialist, an expert group and national standards are being actively considered as part of the service's ongoing development."
Dr Charles Shepherd and several people with ME/CFS took part in a BBC Radio Wales phone-in. Duration 26 minutes.
Article | Thread | Radio program | Thread
Tyee The Human Cost of Failing to Name COVID 'Airborne'
"Is it possible that health-care workers were inadequately protected during the pandemic — and continue to be unnecessarily exposed to serious risk?"
Article l Thread
Quiet Riot Podcast Special: The cruelty of Long Covid
"Kenny Campbell is joined by Claire Higham, who has Long Covid and campaigns for a better understanding of this cruel condition, to find our more about how it wrecks lives, what's being done to combat it and why it isn't making bigger headlines."
Website l Thread
Bateman Horne Center NIH/NIAID Highlight Post-Infectious Illness
This blog post discusses the new strategic vision from NIH/NIAID. "The new NIAID vision identifies post-infectious inflammatory syndromes as an area of scientific interest. In addition to ME/CFS and long COVID, the authors suggest that research may explore how infections could influence the development of other chronic diseases ..."
Blog | Thread
Australia Emerge Awards for Excellence in Journalism 2026 Nominations
"Calling for nominations from media in 2026 that spotlight outstanding journalism in ME/CFS and long COVID stories that amplify patient voices, challenge stigma, and deepen public understanding."
Announcement | Thread
USA - Solve ME and #MEAction Recordings of all the Advocacy Week online sessions are now available. This forum thread also has a post with instructions for how to fill out the Community Letter Sign-On Form. Both patients and allies can sign these letters.
Thread
Nina E. Steinkopf, patient advocate, has written an article about a huge allocation to professor Wyller and his team for research into rehabilitation of "persistent fatigue" where misleading graphs were used in the project description.
Article l Thread
.............
Research news and commentary
NIH RECOVER Initiative RECOVER-AUTONOMIC clinical trial results shared at 2026 ACC Conference
RECOVER researchers shared results from the RECOVER-AUTONOMIC (Ivabradine) clinical trial ahead of their publication. "Participant surveys showed that treatment with ivabradine did not significantly improve POTS symptoms in adults with Long COVID POTS."
Article | Thread
..............
Research
ME/CFS research
Expert perspectives on Myalgic encephalomyelitis/chronic fatigue syndrome – Insights from the 3rd International Conference of the Charité Fatigue Center — Fehrer et al
"the conference provided a comprehensive overview of state-of-the-art research on ME/CFS, covering recent advances in patient care and mechanistic insights into cardiovascular dysregulation, metabolic dysfunction, and immune dysregulation."
Article | Thread
Commentary: Cognitive behavioural therapy for the treatment of chronic fatigue syndrome in adults: a short analysis of the meta-analysis — Vink and Vink-Niese
"In conclusion, our analysis confirms the conclusion by NICE that the quality of CBT studies is (very) low and that CBT, irrespective of the form that is used, is not an effective treatment for ME/CFS."
Article | Thread
Long Covid research
Autoantibody landscapes in neurological Long COVID and post-COVID cognitive impairment show heterogeneity without a shared disease signature — Debanjana Chakravarty et al
"Across tissue-based assays and peptide-level, whole-human-proteome PhIP-Seq profiling, the data consistently reveal a lack of convergent, disease-specific autoantibody signatures."
Preprint | Thread
Widespread structural and functional brain alterations in COVID-19: a systematic review of MRI studies — Chen et al
"We identified 49 articles meeting the inclusion criteria." "We comprehensively summarized COVID-19 associated microstructural and functional alterations, categorized by imaging modality."
Article | Thread
Cognitive and Neuropsychiatric Sequelae After SARS-CoV-2 Infection: A Narrative Review and Exploratory Cross-Sectional Study of Neurofilament Light Chain and GFAP — Crystell Guadalupe Guzmán Priego et al
"Nearly two years after infection, plasma NfL and GFAP concentrations did not differ between severity groups, indicating no detectable ongoing axonal or astrocytic injury at the group level."
Article | Thread
Metacognition and cognitive dysfunction in post-COVID condition — Oliver-Mas et al
"In general, patients with PCC showed inaccurate judgments in both local and global metacognition compared to HC." "Patients with [post-Covid cognitive impairment] overestimated their cognitive performance in local metacognitive tasks mainly in those tasks in which they showed a cognitive deficit, while in global metacognition, both [cognitively impaired and preserved] underestimated their cognitive abilities."
Article | Thread
Paxlovid shows organ-specific and age-specific impacts on risk of developing post-acute sequelae of COVID-19 — Azhir et al
"We applied multivariable logistic regression with inverse probability weights to infer causal effects" "Overall, Paxlovid did not significantly reduce the risk of PASC across all age groups and organ systems."
Article | Thread
Transfer of IgG from long COVID patients induces symptomology in mice — Hung-Jen Chen et al
"our study provides evidence for a pathogenic role of IgG in long COVID" "Cross-species constraints, such as hIgG-murine FcγR interactions and antigen orthology, may also influence pathogenic effects"
Article | Thread
Considerations for epidemiological studies investigating emerging post-acute infection syndromes: Long Covid as a case study — Daniel Ayoubkhani et al
"Clearly people experiencing the debilitating symptoms of Long Covid and other PAISs urgently require robustly validated and widely accessible diagnostic and therapeutic options. This will only be achieved by ongoing and intensified efforts to identify and confirm the pathological mechanisms underpinning the disease." "from a purely epidemiological perspective, perhaps most importantly, there remains an open question as to how best to define PAISs for research purposes."
Article | Thread
Between silence and solutions: a global guideline review of long COVID care and services in Australia — Luo et al
"The most fundamental challenge for Long COVID in Australia is its statistical invisibility. Without an activated diagnostic code, health services cannot reliably identify or follow people living with Long COVID. Visibility is a precondition for planning: what is not counted is not commissioned." "This invisibility also influences clinical culture. Clinicians report low confidence in diagnosis and management; some remain sceptical about the condition’s legitimacy."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
UK DHSC delays commissioning of services for the most severely affected
The Department of Health and Social Care now expect that work will begin in April 2027 to start the process of commissioning a service for those with very severe ME/CFS. This is said to be due to wider organisational changes within the NHS. #ThereForME have produced a PDF briefing on the topic.
PDF | Thread
UK Withdraw the FII Label campaign (Fabricated and Induced Illness)
A campaign group led by survivors, clinicians, social workers and academics, and supported by organisations including Action for ME and the ME Association, has produced an open letter which people are invited to sign. The letter calls for the label FII to be withdrawn immediately and replaced with evidence based guidance, better training, regulatory review and judicial caution.
"This not safeguarding. It is systemic harm."
Website | MEA article | Thread
BBC Wales Our son loved the outdoors – invisible illness means he now can't walk or talk
The article includes several people with ME/CFS in Wales where NHS services are patchy. The Welsh Government is quoted: "Proposals for an all‑Wales specialist, an expert group and national standards are being actively considered as part of the service's ongoing development."
Dr Charles Shepherd and several people with ME/CFS took part in a BBC Radio Wales phone-in. Duration 26 minutes.
Article | Thread | Radio program | Thread
Tyee The Human Cost of Failing to Name COVID 'Airborne'
"Is it possible that health-care workers were inadequately protected during the pandemic — and continue to be unnecessarily exposed to serious risk?"
Article l Thread
Quiet Riot Podcast Special: The cruelty of Long Covid
"Kenny Campbell is joined by Claire Higham, who has Long Covid and campaigns for a better understanding of this cruel condition, to find our more about how it wrecks lives, what's being done to combat it and why it isn't making bigger headlines."
Website l Thread
Bateman Horne Center NIH/NIAID Highlight Post-Infectious Illness
This blog post discusses the new strategic vision from NIH/NIAID. "The new NIAID vision identifies post-infectious inflammatory syndromes as an area of scientific interest. In addition to ME/CFS and long COVID, the authors suggest that research may explore how infections could influence the development of other chronic diseases ..."
Blog | Thread
Australia Emerge Awards for Excellence in Journalism 2026 Nominations
"Calling for nominations from media in 2026 that spotlight outstanding journalism in ME/CFS and long COVID stories that amplify patient voices, challenge stigma, and deepen public understanding."
Announcement | Thread
USA - Solve ME and #MEAction Recordings of all the Advocacy Week online sessions are now available. This forum thread also has a post with instructions for how to fill out the Community Letter Sign-On Form. Both patients and allies can sign these letters.
Thread
Nina E. Steinkopf, patient advocate, has written an article about a huge allocation to professor Wyller and his team for research into rehabilitation of "persistent fatigue" where misleading graphs were used in the project description.
Article l Thread
.............
Research news and commentary
NIH RECOVER Initiative RECOVER-AUTONOMIC clinical trial results shared at 2026 ACC Conference
RECOVER researchers shared results from the RECOVER-AUTONOMIC (Ivabradine) clinical trial ahead of their publication. "Participant surveys showed that treatment with ivabradine did not significantly improve POTS symptoms in adults with Long COVID POTS."
Article | Thread
..............
Research
ME/CFS research
Expert perspectives on Myalgic encephalomyelitis/chronic fatigue syndrome – Insights from the 3rd International Conference of the Charité Fatigue Center — Fehrer et al
"the conference provided a comprehensive overview of state-of-the-art research on ME/CFS, covering recent advances in patient care and mechanistic insights into cardiovascular dysregulation, metabolic dysfunction, and immune dysregulation."
Article | Thread
Commentary: Cognitive behavioural therapy for the treatment of chronic fatigue syndrome in adults: a short analysis of the meta-analysis — Vink and Vink-Niese
"In conclusion, our analysis confirms the conclusion by NICE that the quality of CBT studies is (very) low and that CBT, irrespective of the form that is used, is not an effective treatment for ME/CFS."
Article | Thread
Long Covid research
Autoantibody landscapes in neurological Long COVID and post-COVID cognitive impairment show heterogeneity without a shared disease signature — Debanjana Chakravarty et al
"Across tissue-based assays and peptide-level, whole-human-proteome PhIP-Seq profiling, the data consistently reveal a lack of convergent, disease-specific autoantibody signatures."
Preprint | Thread
Widespread structural and functional brain alterations in COVID-19: a systematic review of MRI studies — Chen et al
"We identified 49 articles meeting the inclusion criteria." "We comprehensively summarized COVID-19 associated microstructural and functional alterations, categorized by imaging modality."
Article | Thread
Cognitive and Neuropsychiatric Sequelae After SARS-CoV-2 Infection: A Narrative Review and Exploratory Cross-Sectional Study of Neurofilament Light Chain and GFAP — Crystell Guadalupe Guzmán Priego et al
"Nearly two years after infection, plasma NfL and GFAP concentrations did not differ between severity groups, indicating no detectable ongoing axonal or astrocytic injury at the group level."
Article | Thread
Metacognition and cognitive dysfunction in post-COVID condition — Oliver-Mas et al
"In general, patients with PCC showed inaccurate judgments in both local and global metacognition compared to HC." "Patients with [post-Covid cognitive impairment] overestimated their cognitive performance in local metacognitive tasks mainly in those tasks in which they showed a cognitive deficit, while in global metacognition, both [cognitively impaired and preserved] underestimated their cognitive abilities."
Article | Thread
Paxlovid shows organ-specific and age-specific impacts on risk of developing post-acute sequelae of COVID-19 — Azhir et al
"We applied multivariable logistic regression with inverse probability weights to infer causal effects" "Overall, Paxlovid did not significantly reduce the risk of PASC across all age groups and organ systems."
Article | Thread
Transfer of IgG from long COVID patients induces symptomology in mice — Hung-Jen Chen et al
"our study provides evidence for a pathogenic role of IgG in long COVID" "Cross-species constraints, such as hIgG-murine FcγR interactions and antigen orthology, may also influence pathogenic effects"
Article | Thread
Considerations for epidemiological studies investigating emerging post-acute infection syndromes: Long Covid as a case study — Daniel Ayoubkhani et al
"Clearly people experiencing the debilitating symptoms of Long Covid and other PAISs urgently require robustly validated and widely accessible diagnostic and therapeutic options. This will only be achieved by ongoing and intensified efforts to identify and confirm the pathological mechanisms underpinning the disease." "from a purely epidemiological perspective, perhaps most importantly, there remains an open question as to how best to define PAISs for research purposes."
Article | Thread
Between silence and solutions: a global guideline review of long COVID care and services in Australia — Luo et al
"The most fundamental challenge for Long COVID in Australia is its statistical invisibility. Without an activated diagnostic code, health services cannot reliably identify or follow people living with Long COVID. Visibility is a precondition for planning: what is not counted is not commissioned." "This invisibility also influences clinical culture. Clinicians report low confidence in diagnosis and management; some remain sceptical about the condition’s legitimacy."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky