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Fact sheet drafting HERE! Fact sheet #4 - Management of severe and very severe ME/CFS - comments by 21st April please
News in Brief - April 2026
- Thread starter S4ME News
- Start date
Week beginning 6th April 2026
News, advocacy and articles
Norwegian Guidelines A draft for guidelines on fatigue and ME/CFS is currently under public consultation and receiving a lot of criticism. The ME researchers Olav Mella, Øystein Fluge and Karl Johan Tronstad have written an opinion piece with several important critical points where they argue for a new revision of the guidelines with a clear scope on ME, a broader review of the scientific literature and a better embedding of international guidelines.
Opinion piece (Norwegian) l Thread
OECD
The Organisation for Economic Cooperation and Development (OECD) has published a detailed report on Long Covid, calling it the "the long shadow of the pandemic". It estimates GDP losses of 0.1-0.2% due to Long Covid, which could create "a major drag on the economy amounting to USD 135 billion per annum over the next decade."
Report | Thread
UK Hope for ME and Fibro Northern Ireland Videos are now available from the Newry conference 'Collaboration for Change' held on 27th March. Speakers include Professors Chris Ponting and Tom Trinick and Dr William Weir.
Videos | Thread
Canada The Canadian Pain Society's 2026 conference presented two posters from the McMaster group. One is a clinical practice guideline on physical activity for ME/CFS and the other is about benefits and harms of physical activity for ME/CFS patients. Both of them unfortunately endorse exercise therapy as treatment.
Thread
...............
Crowdfunding
Trial By Error Reporting on ME, ME/CFS, Long COVID, & so on ...
David Tuller is crowdfunding for the final time to continue his position and important work until he plans to retire from Berkeley University at the end of this year. The goal is to raise $75,000 by 5th May.
Crowdfunding l Thread
.............
Coming events
Solve ME Webinar The Discovery of Target Antigens for Dysfunctional T Cells in ME/CFS and Long COVID
Thursday, April 28, 3:00 pm Pacific / 6:00 pm Eastern
Announcement | Registration | Thread
UK Durham University Gender, affective injustice & ‘the greatest medical scandal of the 21st century'
Talk by Dr Katharine Cheston on Monday, May 11, 12 PM - 1:30 PM
Dr Cheston worked with Action for ME on their 2025 Big Survey.
"Drawing on preliminary analysis of the Big Survey data, alongside semi-structured interviews conducted during my PhD, I will interrogate this scandal, illuminate its gendered dimensions, and demonstrate how it constitutes a compelling case study of affective injustice in healthcare."
Free Zoom booking | Thread
.............
Research news and commentary
USA RECOVER-TLC announces public comment period for upcoming clinical trial
"RECOVER-Treating Long COVID (RECOVER-TLC) invites patients, caregivers, advocates, healthcare providers, and researchers to provide feedback on the draft protocol synopsis for its upcoming glucagon-like peptide-1 receptor agonist (GLP-1 RA) clinical trial."
Website l Thread
............
Research
ME/CFS research
Perioperative outcomes in myalgic encephalomyelitis/chronic fatigue syndrome undergoing general anesthesia: a retrospective matched-pair study — Felix M Steinkirchner et al
"ME/CFS represents a potentially vulnerable population that remains underrepresented in the anesthesia literature and for whom evidence-based perioperative guidance is currently lacking." "Overall, general anesthesia appeared to be well tolerated from a hemodynamic perspective, whereas postoperative recovery, particularly pain, was more adversely affected compared with matched controls."
Preprint | Thread
Validation of the Wood Mental Fatigue Inventory in adolescents with myalgic encephalomyelitis/chronic fatigue syndrome — Welch et al
"Cohen's d was large for both the WMFI (1.83) and the Peds QL MFS cognitive fatigue subscale (1.95), indicating that the means between the ME/CFS patients and the healthy controls on both questionnaires differed by more than 1.8 times the baseline standard deviation."
Article | Thread
Long Covid research
Longitudinal study of genome-wide DNA methylation in individuals with and without post-acute symptoms following SARS-CoV-2 infection — Jon Bohlin et al
"Using a longitudinal design with matched samples, collected before and after infection, we analyzed genome-wide DNA methylation in 297 adults." "We found no evidence of genome-wide DNA methylation differences associated with COVID-19 infection or persistent Long-COVID symptoms."
Article | Thread
Immune correlates underlying small fiber neuropathy presenting as vaccine-associated post-acute SARS- coronavirus syndrome — Limongelli et al
"we describe a cohort of patients with postvaccine PASC satisfying SFN definition criteria, for whom an underlying persistent inflammation (evidenced by CD34+DNAM1bright cells) was observed, along with a peripheral expansion of innate-like T cells"
Article | Thread
Clinically confirmed cohort reveals antioxidant genetic polymorphisms as potential susceptibility factors for long COVID after mild or asymptomatic COVID-19 — Katsarou et al
"SOD2 and EPHX1 variants are associated with Long COVID susceptibility."
Article | Thread
The effect of pre-existing sleep disturbance on T cell responses to SARS-CoV-2 variants, pro-inflammatory and pro-resolving mediators, and glucocorticoid sensitivity in Long COVID — Haack et al
"These exploratory findings suggest that preexisting sleep disturbance may be associated with compromised glucocorticoid mediated inflammatory suppression in a subset of individuals classified as Likely LC."
Article | Thread
Dysautonomia in Long COVID is Prevalent and Could Explain the Frequency of Symptoms — Leonardo Tamariz et al
"Orthostatic hypotension was observed in 12% of the study population, and postural orthostatic tachycardia syndrome (POTS) was seen in 10%" "Measures of exercise induced dysautonomia were seen in 57% among the 25 long COVID patients who had a CPET."
Article | Thread
School Difficulties and Long COVID in Children and Adolescents — Harrison T. Reeder et al
"These findings also provide evidence of a key disruption of functional status at critical points in the life course, which have profound implications both for the future health of this generation and for public policy."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
Norwegian Guidelines A draft for guidelines on fatigue and ME/CFS is currently under public consultation and receiving a lot of criticism. The ME researchers Olav Mella, Øystein Fluge and Karl Johan Tronstad have written an opinion piece with several important critical points where they argue for a new revision of the guidelines with a clear scope on ME, a broader review of the scientific literature and a better embedding of international guidelines.
Opinion piece (Norwegian) l Thread
OECD
The Organisation for Economic Cooperation and Development (OECD) has published a detailed report on Long Covid, calling it the "the long shadow of the pandemic". It estimates GDP losses of 0.1-0.2% due to Long Covid, which could create "a major drag on the economy amounting to USD 135 billion per annum over the next decade."
Report | Thread
UK Hope for ME and Fibro Northern Ireland Videos are now available from the Newry conference 'Collaboration for Change' held on 27th March. Speakers include Professors Chris Ponting and Tom Trinick and Dr William Weir.
Videos | Thread
Canada The Canadian Pain Society's 2026 conference presented two posters from the McMaster group. One is a clinical practice guideline on physical activity for ME/CFS and the other is about benefits and harms of physical activity for ME/CFS patients. Both of them unfortunately endorse exercise therapy as treatment.
Thread
...............
Crowdfunding
Trial By Error Reporting on ME, ME/CFS, Long COVID, & so on ...
David Tuller is crowdfunding for the final time to continue his position and important work until he plans to retire from Berkeley University at the end of this year. The goal is to raise $75,000 by 5th May.
Crowdfunding l Thread
.............
Coming events
Solve ME Webinar The Discovery of Target Antigens for Dysfunctional T Cells in ME/CFS and Long COVID
Thursday, April 28, 3:00 pm Pacific / 6:00 pm Eastern
Announcement | Registration | Thread
UK Durham University Gender, affective injustice & ‘the greatest medical scandal of the 21st century'
Talk by Dr Katharine Cheston on Monday, May 11, 12 PM - 1:30 PM
Dr Cheston worked with Action for ME on their 2025 Big Survey.
"Drawing on preliminary analysis of the Big Survey data, alongside semi-structured interviews conducted during my PhD, I will interrogate this scandal, illuminate its gendered dimensions, and demonstrate how it constitutes a compelling case study of affective injustice in healthcare."
Free Zoom booking | Thread
.............
Research news and commentary
USA RECOVER-TLC announces public comment period for upcoming clinical trial
"RECOVER-Treating Long COVID (RECOVER-TLC) invites patients, caregivers, advocates, healthcare providers, and researchers to provide feedback on the draft protocol synopsis for its upcoming glucagon-like peptide-1 receptor agonist (GLP-1 RA) clinical trial."
Website l Thread
............
Research
ME/CFS research
Perioperative outcomes in myalgic encephalomyelitis/chronic fatigue syndrome undergoing general anesthesia: a retrospective matched-pair study — Felix M Steinkirchner et al
"ME/CFS represents a potentially vulnerable population that remains underrepresented in the anesthesia literature and for whom evidence-based perioperative guidance is currently lacking." "Overall, general anesthesia appeared to be well tolerated from a hemodynamic perspective, whereas postoperative recovery, particularly pain, was more adversely affected compared with matched controls."
Preprint | Thread
Validation of the Wood Mental Fatigue Inventory in adolescents with myalgic encephalomyelitis/chronic fatigue syndrome — Welch et al
"Cohen's d was large for both the WMFI (1.83) and the Peds QL MFS cognitive fatigue subscale (1.95), indicating that the means between the ME/CFS patients and the healthy controls on both questionnaires differed by more than 1.8 times the baseline standard deviation."
Article | Thread
Long Covid research
Longitudinal study of genome-wide DNA methylation in individuals with and without post-acute symptoms following SARS-CoV-2 infection — Jon Bohlin et al
"Using a longitudinal design with matched samples, collected before and after infection, we analyzed genome-wide DNA methylation in 297 adults." "We found no evidence of genome-wide DNA methylation differences associated with COVID-19 infection or persistent Long-COVID symptoms."
Article | Thread
Immune correlates underlying small fiber neuropathy presenting as vaccine-associated post-acute SARS- coronavirus syndrome — Limongelli et al
"we describe a cohort of patients with postvaccine PASC satisfying SFN definition criteria, for whom an underlying persistent inflammation (evidenced by CD34+DNAM1bright cells) was observed, along with a peripheral expansion of innate-like T cells"
Article | Thread
Clinically confirmed cohort reveals antioxidant genetic polymorphisms as potential susceptibility factors for long COVID after mild or asymptomatic COVID-19 — Katsarou et al
"SOD2 and EPHX1 variants are associated with Long COVID susceptibility."
Article | Thread
The effect of pre-existing sleep disturbance on T cell responses to SARS-CoV-2 variants, pro-inflammatory and pro-resolving mediators, and glucocorticoid sensitivity in Long COVID — Haack et al
"These exploratory findings suggest that preexisting sleep disturbance may be associated with compromised glucocorticoid mediated inflammatory suppression in a subset of individuals classified as Likely LC."
Article | Thread
Dysautonomia in Long COVID is Prevalent and Could Explain the Frequency of Symptoms — Leonardo Tamariz et al
"Orthostatic hypotension was observed in 12% of the study population, and postural orthostatic tachycardia syndrome (POTS) was seen in 10%" "Measures of exercise induced dysautonomia were seen in 57% among the 25 long COVID patients who had a CPET."
Article | Thread
School Difficulties and Long COVID in Children and Adolescents — Harrison T. Reeder et al
"These findings also provide evidence of a key disruption of functional status at critical points in the life course, which have profound implications both for the future health of this generation and for public policy."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 13th April 2026
News, advocacy and articles
ME/CFS Research Preview
Simon McGrath explains how an analysis of survey data on patients across Europe found that there are two peak ages for getting ME/CFS, around 16 and the late 30s – a rare bimodal pattern.
Article | Thread
Open Medicine Foundation A new chapter in ME/CFS treatment research begins today—and your voice is essential to making it count
Open Medicine Foundation (OMF) has launched a research model they are calling CTN Lite. Unlike a traditional clinical trials network (CTN) OMF is trying to create a streamlined model which will lead to answers faster. Patients and caregivers are asked to take a short survey about research priorities. This survey will be available until May 15.
Article | Survey | Thread
The Sick Times I developed Long COVID while practicing medicine. The system had no place for me
An important essay from internal medicine resident Mustafa Talat: "Medical institutions must educate staff that Long COVID is a disabling condition affecting up to 40% of healthcare workers who contracted and continue to contract COVID-19 while working in hospitals that have failed to control the spread of the virus and other pathogens."
Article l Thread
#MEAction to Meet with NIH Director during #MillionsMissing Week
NIH Director Bhattacharya will meet with #MEAction on May 13 to discuss the implementation plan and funding for the NIH ME/CFS Research Roadmap.
Article | Thread
..........
Crowdfunding
Trial By Error Reporting on ME, ME/CFS, Long COVID, & so on...
David Tuller is crowdfunding for the final time to continue his position and important work until he plans to retire from Berkeley University at the end of this year. The goal is to raise $ 75 000 by 5th May.
Crowdfunding l Thread
...........
Coming events
Bateman Horne Center Free Online Support Group
Tuesday, April 21, 1 - 2 pm MDT
Topic: Who am I Now? Identity and Chronic Illness
Advance registration required, registration link shows time in your time zone.
Registration | Thread
Solve ME Webinar The Discovery of Target Antigens for Dysfunctional T Cells in ME/CFS and Long COVID
Thursday, April 28, 3 pm PDT / 6 pm EDT
Announcement | Registration | Thread
Durham University - Institute for Medical Humanities Gender, affective injustice & ‘the greatest medical scandal of the 21st century'
Monday, May 11, 12 pm - 1:30 pm BST
Katharine Cheston discusses the treatment of people with ME and its wider implications in terms of affective injustice in healthcare. Event is free, register to reserve a spot. A Zoom link will be circulated closer to the event.
Announcement | Registration | Thread
...........
Research news and commentary
Australia MRFF 2026 PASC grant opportunity
The Department of Health, Disability and Ageing's Medical Research Future Fund is providing up to $23 million for medical research and innovation projects. The projects can investigate biological pathways, carry out pre-clinical or early-phase clinical research into mechanisms and therapeutics, compare the underlying causes of PASC with other postviral chronic illnesses, or identify scalable, sustainable integrated care approaches.
Announcement | Thread
Solve ME What's New in ME/CFS? Interview with Dr. Avik Roy & Dr. Gunnar Gottschalk (Simmaron Research)
Article | Video | Thread
Solve ME has posted a recording from their April 16 webinar (“GLP-1 Drugs to Reduce Symptoms in People with ME/CFS and Identify Disease Subgroups”) on their YouTube channel.
Video | Thread
...........
Research
ME/CFS research
Insights into Pathophysiological Pathways in ME/CFS Through Genetic Correlation and Mendelian Randomization — Wielscher et al
"findings indicate that ME/CFS susceptibility reflects interacting pathways involving barrier–microbiome dysfunction, neurovascular instability, inflammation, platelet activation, and impaired cellular energetics"
Preprint | Thread
3D Virtual Reality Performance Metrics as a Future Fatigue Biomarker in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — Ladek et al
"VR-OTS RT metrics showed not only considerable differences between healthy controls and patients with ME/CFS, but also different performance patterns over time; thus, some of these metrics may be indicative of PEM and fatigue."
Article | Thread
Making Invisible Illnesses Visible: Recognizing and Responding to Infection Associated Chronic Conditions — Iskander and Haridopolos
From the Office of the U.S. Surgeon General. "Grounds for optimism in this emerging field include calls from public health leaders to break down silos between infectious and chronic conditions, new data and emphasis on IACCI from the Centers for Disease Control and Prevention"
Article | Thread
Comparing ME/CFS following mononucleosis with Long COVID — Jason et al
"for the definition of Long COVID only 3 months of symptoms are required" "In general, the Long COVID group’s symptom burden was less than that of the Severe ME/CFS group"
Article | Thread
Long Covid research
Distinct plasma proteome signature at 3 months post-COVID-19 infection irrespective of post-COVID condition — Chowdhury et al
"even after mild infection, the plasma proteomic signature of uninfected individuals differs substantially from that of both convalescent and PCC groups." "differences between the convalescent and PCC groups are subtle, suggesting that persistent proteomic alterations occur after mild COVID-19 but may not fully explain PCC-specific symptomatology."
Article | Thread
Association of ADIPOQ rs1501299 with long-COVID syndrome: a single-center cross-sectional study — Mavroudis et al
"the homozygous GG genotype increased the risk for fatigue as a Long-COVID symptom, compared to T allele carriers (OR 2.4, 95% CI 1.2, 5.0, p = 0.014)." "This correlation was also independent of age, sex, BMI, waist to hip ratio, severity of the acute disease and any of the comorbidities."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
ME/CFS Research Preview
Simon McGrath explains how an analysis of survey data on patients across Europe found that there are two peak ages for getting ME/CFS, around 16 and the late 30s – a rare bimodal pattern.
Article | Thread
Open Medicine Foundation A new chapter in ME/CFS treatment research begins today—and your voice is essential to making it count
Open Medicine Foundation (OMF) has launched a research model they are calling CTN Lite. Unlike a traditional clinical trials network (CTN) OMF is trying to create a streamlined model which will lead to answers faster. Patients and caregivers are asked to take a short survey about research priorities. This survey will be available until May 15.
Article | Survey | Thread
The Sick Times I developed Long COVID while practicing medicine. The system had no place for me
An important essay from internal medicine resident Mustafa Talat: "Medical institutions must educate staff that Long COVID is a disabling condition affecting up to 40% of healthcare workers who contracted and continue to contract COVID-19 while working in hospitals that have failed to control the spread of the virus and other pathogens."
Article l Thread
#MEAction to Meet with NIH Director during #MillionsMissing Week
NIH Director Bhattacharya will meet with #MEAction on May 13 to discuss the implementation plan and funding for the NIH ME/CFS Research Roadmap.
Article | Thread
..........
Crowdfunding
Trial By Error Reporting on ME, ME/CFS, Long COVID, & so on...
David Tuller is crowdfunding for the final time to continue his position and important work until he plans to retire from Berkeley University at the end of this year. The goal is to raise $ 75 000 by 5th May.
Crowdfunding l Thread
...........
Coming events
Bateman Horne Center Free Online Support Group
Tuesday, April 21, 1 - 2 pm MDT
Topic: Who am I Now? Identity and Chronic Illness
Advance registration required, registration link shows time in your time zone.
Registration | Thread
Solve ME Webinar The Discovery of Target Antigens for Dysfunctional T Cells in ME/CFS and Long COVID
Thursday, April 28, 3 pm PDT / 6 pm EDT
Announcement | Registration | Thread
Durham University - Institute for Medical Humanities Gender, affective injustice & ‘the greatest medical scandal of the 21st century'
Monday, May 11, 12 pm - 1:30 pm BST
Katharine Cheston discusses the treatment of people with ME and its wider implications in terms of affective injustice in healthcare. Event is free, register to reserve a spot. A Zoom link will be circulated closer to the event.
Announcement | Registration | Thread
...........
Research news and commentary
Australia MRFF 2026 PASC grant opportunity
The Department of Health, Disability and Ageing's Medical Research Future Fund is providing up to $23 million for medical research and innovation projects. The projects can investigate biological pathways, carry out pre-clinical or early-phase clinical research into mechanisms and therapeutics, compare the underlying causes of PASC with other postviral chronic illnesses, or identify scalable, sustainable integrated care approaches.
Announcement | Thread
Solve ME What's New in ME/CFS? Interview with Dr. Avik Roy & Dr. Gunnar Gottschalk (Simmaron Research)
Article | Video | Thread
Solve ME has posted a recording from their April 16 webinar (“GLP-1 Drugs to Reduce Symptoms in People with ME/CFS and Identify Disease Subgroups”) on their YouTube channel.
Video | Thread
...........
Research
ME/CFS research
Insights into Pathophysiological Pathways in ME/CFS Through Genetic Correlation and Mendelian Randomization — Wielscher et al
"findings indicate that ME/CFS susceptibility reflects interacting pathways involving barrier–microbiome dysfunction, neurovascular instability, inflammation, platelet activation, and impaired cellular energetics"
Preprint | Thread
3D Virtual Reality Performance Metrics as a Future Fatigue Biomarker in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — Ladek et al
"VR-OTS RT metrics showed not only considerable differences between healthy controls and patients with ME/CFS, but also different performance patterns over time; thus, some of these metrics may be indicative of PEM and fatigue."
Article | Thread
Making Invisible Illnesses Visible: Recognizing and Responding to Infection Associated Chronic Conditions — Iskander and Haridopolos
From the Office of the U.S. Surgeon General. "Grounds for optimism in this emerging field include calls from public health leaders to break down silos between infectious and chronic conditions, new data and emphasis on IACCI from the Centers for Disease Control and Prevention"
Article | Thread
Comparing ME/CFS following mononucleosis with Long COVID — Jason et al
"for the definition of Long COVID only 3 months of symptoms are required" "In general, the Long COVID group’s symptom burden was less than that of the Severe ME/CFS group"
Article | Thread
Long Covid research
Distinct plasma proteome signature at 3 months post-COVID-19 infection irrespective of post-COVID condition — Chowdhury et al
"even after mild infection, the plasma proteomic signature of uninfected individuals differs substantially from that of both convalescent and PCC groups." "differences between the convalescent and PCC groups are subtle, suggesting that persistent proteomic alterations occur after mild COVID-19 but may not fully explain PCC-specific symptomatology."
Article | Thread
Association of ADIPOQ rs1501299 with long-COVID syndrome: a single-center cross-sectional study — Mavroudis et al
"the homozygous GG genotype increased the risk for fatigue as a Long-COVID symptom, compared to T allele carriers (OR 2.4, 95% CI 1.2, 5.0, p = 0.014)." "This correlation was also independent of age, sex, BMI, waist to hip ratio, severity of the acute disease and any of the comorbidities."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky