News in Brief - May 2026
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Week beginning 4th May 2026
May 12 is International ME/CFS Awareness Day / World ME Day
News, advocacy and articles
#MEAction Urges HHS to Exempt ME/CFS and Long COVID Communities from Medicaid Work Requirements
An art installation and educational gathering outside HHS headquarters is scheduled for May 12.
Article | Thread
Trial by Error by David Tuller
• Interview with University of Edinburgh immunologist Audrey Ryback
An interview with A. Ryback, senior author of the recent paper "Cases of Incidence age is bimodal for myalgic encephalomyelitis/chronic fatigue syndrome, with higher severity burden for early onset disease". Duration: 19 minutes.
Video l Thread
• News Bits—"Frail & Furious" for #Millions Missing; Usual Suspects at Psych Confab; Long COVID Advocates Channel ACT UP
Article l Thread
The Sick Times Long COVID advocates demand biological research at a conference in Paris
Journalists at The Sick Times interviewed the two organizations, Winslow Santé Publique action group (WSP) and Action Covid Long (ACL), who interrupted controversial speakers at a Long COVID EU Project event.
Article | Thread
VoxEM
The website for the new French advocacy group VoxEM has launched. It "brings together myalgic encephalomyelitis patients and relatives.
To make our voices heard, we organize actions online and in the public space, all over France."
Website (French) | Thread
Center Left by Fred Rossi The Inventory of Loss
Blog post about the grieving, often unseen and misunderstood, that comes from living with chronic illness.
Article | Thread
Trials & Tribulations by Siebe How I learned to doubt a paper
Good article by forum member Siebe arguing that science is turned "into a hope-delivery system for instant gratification, instead of the long-term solution-delivery system it is supposed to be" with an appeal to do better.
Article l Thread
A Life Hidden You Are Not Forgotten: The Gift of Being Remembered - Naomi Whittingham
"No matter how isolated you might be, you are inextricably connected to the rest of humanity in ways you can’t fully imagine."
Article l Thread
Bateman Horne Center Spring Newsletter (May 2026)
Includes a statement from Lucinda Bateman saying that she is not retiring but her role is evolving. It also includes an update on ongoing research and coming events.
Newsletter | Thread
Australia ABC News item
"Today, Ms Engel considers herself 'one of the lucky ones' after regaining some of her mobility. […] She is grateful for the simple things in life, such as watching the sunrise, walking along the beach, showering by herself and eating a meal at the table with her mum and dad."
Article | Thread
Aotearoa New Zealand ANZMES press release
"The Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) is officially marking World ME Day on 12 May 2026 with a national call to action under the global theme “Take ME Seriously”."
Press Release | Thread
James Strazza, a musician and poet who had severe ME, has died. You can read about his work at https://www.jamesstrazza.com/
In Memoriam Thread (Members only)
.........
Coming events
World ME day is on May 12th.
Thread
Blue Sunday tea party for ME fundraising day is on May 17th.
Thread
Bateman Horne Center Free Online Support Group
Tuesday, May 19, 1 - 2 pm MDT
Topic: Dealing with Big and Difficult Emotions: Inappropriate Guilt and Shame
Advance registration required, registration link shows time in your time zone.
Registration | Thread
USA Polybio Spring Symposium
"On Friday May 22nd we have planned an online Symposium where PolyBio-supported researchers will present updates on their projects."
Details and registration | Thread
UK Invest in ME Research 18th International ME Conference
29th May 2026 at the Wellcome Genome Campus, Hinxton Hall near Cambridge.
Details | Thread
.........
Research news and commentary
Solve ME What's New in ME/CFS? Interview with Dr. Per Sjögren & Dr. Bo Bertilson
Video | Article | Thread
.........
Research
ME/CFS research
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome diagnostic reporting in the 2021–2023 National Health Interview Survey — Fleig et al
"Of United States adults reporting having had ME/CFS at some point in time, one-fifth report that they no longer do." "For these 40-50% of adults with Past ME/CFS, estimates of symptoms and function are not much different than adults with Current ME/CFS." "at best it appears that only a quarter of self-reported ME/CFS remission can be attributed to a clinical picture consistent with permanent or temporary recovery."
Article | Thread
Interpreting hand grip strength in hospital employees with post-COVID syndrome compared to non-infected controls: a case-control study — Tack et al
"HGS was reduced in the second session in PCS but not in controls, which may indicate altered or delayed recovery following repeated exertion." "Exploratory analyses identified certain HGS-derived parameters, particularly those based on maximum, minimum, and mean force values, as potentially informative for characterizing PCS-related differences; however, their predictive performance was moderate"
Article | Thread
Low-Dose Naltrexone: What is the Evidence? A Narrative Review — Gouda et al
"The evidence base is dominated by small, low-quality studies that rely on subjective outcomes and are vulnerable to publication bias." "Positive findings from early uncontrolled studies are rarely confirmed in placebo controlled trials."
Article | Thread
A Normative Pragmatic Inquiry into the Volatility of Norms in Argumentation — Jackson
Case study of the current Cochrane review of exercise therapy in ME/CFS. "Rumors of Cochrane’s intention drew criticism that Cochrane had caved in to public pressure from ME/CFS activists. Had that been true, it would have been a very serious violation of participation norms throughout the sciences. But it was not true. Cochrane made its own investigation and assessment of the review and found problems serious enough that the editors considered withdrawing the review entirely."
Article | Thread
Long Covid research
Immune-metabolic trajectories delineate subgroups in paediatric long COVID — Vilser et al
"Metabolomics (43 metabolites) recapitulate the identified subgroups and align with EBV serostatus, disease phase (<1 year versus years 1–3.2), and anti-DFS70 positivity." "In EBV-naive LC, higher haemoglobin concentration (MCHC) tracks worse function, whereas higher IL-12p40, thiamine and basophils track milder impairment"
Article | Thread
Risk factors for severe post-COVID condition in children, adolescents, and young adults — Donath et al
"24% of patients fulfilled ME/CFS criteria—all within the severe cluster—highlighting a distinct high-risk subgroup that necessitates early stratification and care."
Article | Thread
Disentangling Fatigue from Depression among Survivors of Severe COVID-19 — Cabrera et al
"By highlighting the significant overlap between fatigue and depression, we provide novel evidence to preferentially consider the use of the PHQ-2, which omits the two items on sleep disturbances and fatigue, instead of the PHQ-9 to screen for depression to avoid overestimating depression severity and potentially unnecessary treatment."
Preprint | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
May 12 is International ME/CFS Awareness Day / World ME Day
News, advocacy and articles
#MEAction Urges HHS to Exempt ME/CFS and Long COVID Communities from Medicaid Work Requirements
An art installation and educational gathering outside HHS headquarters is scheduled for May 12.
Article | Thread
Trial by Error by David Tuller
• Interview with University of Edinburgh immunologist Audrey Ryback
An interview with A. Ryback, senior author of the recent paper "Cases of Incidence age is bimodal for myalgic encephalomyelitis/chronic fatigue syndrome, with higher severity burden for early onset disease". Duration: 19 minutes.
Video l Thread
• News Bits—"Frail & Furious" for #Millions Missing; Usual Suspects at Psych Confab; Long COVID Advocates Channel ACT UP
Article l Thread
The Sick Times Long COVID advocates demand biological research at a conference in Paris
Journalists at The Sick Times interviewed the two organizations, Winslow Santé Publique action group (WSP) and Action Covid Long (ACL), who interrupted controversial speakers at a Long COVID EU Project event.
Article | Thread
VoxEM
The website for the new French advocacy group VoxEM has launched. It "brings together myalgic encephalomyelitis patients and relatives.
To make our voices heard, we organize actions online and in the public space, all over France."
Website (French) | Thread
Center Left by Fred Rossi The Inventory of Loss
Blog post about the grieving, often unseen and misunderstood, that comes from living with chronic illness.
Article | Thread
Trials & Tribulations by Siebe How I learned to doubt a paper
Good article by forum member Siebe arguing that science is turned "into a hope-delivery system for instant gratification, instead of the long-term solution-delivery system it is supposed to be" with an appeal to do better.
Article l Thread
A Life Hidden You Are Not Forgotten: The Gift of Being Remembered - Naomi Whittingham
"No matter how isolated you might be, you are inextricably connected to the rest of humanity in ways you can’t fully imagine."
Article l Thread
Bateman Horne Center Spring Newsletter (May 2026)
Includes a statement from Lucinda Bateman saying that she is not retiring but her role is evolving. It also includes an update on ongoing research and coming events.
Newsletter | Thread
Australia ABC News item
"Today, Ms Engel considers herself 'one of the lucky ones' after regaining some of her mobility. […] She is grateful for the simple things in life, such as watching the sunrise, walking along the beach, showering by herself and eating a meal at the table with her mum and dad."
Article | Thread
Aotearoa New Zealand ANZMES press release
"The Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) is officially marking World ME Day on 12 May 2026 with a national call to action under the global theme “Take ME Seriously”."
Press Release | Thread
James Strazza, a musician and poet who had severe ME, has died. You can read about his work at https://www.jamesstrazza.com/
In Memoriam Thread (Members only)
.........
Coming events
World ME day is on May 12th.
Thread
Blue Sunday tea party for ME fundraising day is on May 17th.
Thread
Bateman Horne Center Free Online Support Group
Tuesday, May 19, 1 - 2 pm MDT
Topic: Dealing with Big and Difficult Emotions: Inappropriate Guilt and Shame
Advance registration required, registration link shows time in your time zone.
Registration | Thread
USA Polybio Spring Symposium
"On Friday May 22nd we have planned an online Symposium where PolyBio-supported researchers will present updates on their projects."
Details and registration | Thread
UK Invest in ME Research 18th International ME Conference
29th May 2026 at the Wellcome Genome Campus, Hinxton Hall near Cambridge.
Details | Thread
.........
Research news and commentary
Solve ME What's New in ME/CFS? Interview with Dr. Per Sjögren & Dr. Bo Bertilson
Video | Article | Thread
.........
Research
ME/CFS research
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome diagnostic reporting in the 2021–2023 National Health Interview Survey — Fleig et al
"Of United States adults reporting having had ME/CFS at some point in time, one-fifth report that they no longer do." "For these 40-50% of adults with Past ME/CFS, estimates of symptoms and function are not much different than adults with Current ME/CFS." "at best it appears that only a quarter of self-reported ME/CFS remission can be attributed to a clinical picture consistent with permanent or temporary recovery."
Article | Thread
Interpreting hand grip strength in hospital employees with post-COVID syndrome compared to non-infected controls: a case-control study — Tack et al
"HGS was reduced in the second session in PCS but not in controls, which may indicate altered or delayed recovery following repeated exertion." "Exploratory analyses identified certain HGS-derived parameters, particularly those based on maximum, minimum, and mean force values, as potentially informative for characterizing PCS-related differences; however, their predictive performance was moderate"
Article | Thread
Low-Dose Naltrexone: What is the Evidence? A Narrative Review — Gouda et al
"The evidence base is dominated by small, low-quality studies that rely on subjective outcomes and are vulnerable to publication bias." "Positive findings from early uncontrolled studies are rarely confirmed in placebo controlled trials."
Article | Thread
A Normative Pragmatic Inquiry into the Volatility of Norms in Argumentation — Jackson
Case study of the current Cochrane review of exercise therapy in ME/CFS. "Rumors of Cochrane’s intention drew criticism that Cochrane had caved in to public pressure from ME/CFS activists. Had that been true, it would have been a very serious violation of participation norms throughout the sciences. But it was not true. Cochrane made its own investigation and assessment of the review and found problems serious enough that the editors considered withdrawing the review entirely."
Article | Thread
Long Covid research
Immune-metabolic trajectories delineate subgroups in paediatric long COVID — Vilser et al
"Metabolomics (43 metabolites) recapitulate the identified subgroups and align with EBV serostatus, disease phase (<1 year versus years 1–3.2), and anti-DFS70 positivity." "In EBV-naive LC, higher haemoglobin concentration (MCHC) tracks worse function, whereas higher IL-12p40, thiamine and basophils track milder impairment"
Article | Thread
Risk factors for severe post-COVID condition in children, adolescents, and young adults — Donath et al
"24% of patients fulfilled ME/CFS criteria—all within the severe cluster—highlighting a distinct high-risk subgroup that necessitates early stratification and care."
Article | Thread
Disentangling Fatigue from Depression among Survivors of Severe COVID-19 — Cabrera et al
"By highlighting the significant overlap between fatigue and depression, we provide novel evidence to preferentially consider the use of the PHQ-2, which omits the two items on sleep disturbances and fatigue, instead of the PHQ-9 to screen for depression to avoid overestimating depression severity and potentially unnecessary treatment."
Preprint | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 11th May 2026
Research news and commentary
UK Sequence ME and Long Covid Major funding secured for Sequence ME & Long Covid, a DecodeMe project
This phase 2 of the project is funded by the UK government with £4.75 million, and a donation of £174,414 from WE&ME Foundation to support the team responsible for generating the sequencing data.
Phase 2 will take a year to sequence the whole genetic code of 6,000 of the DecodeME DNA samples. Later phases still requiring funding include analysis of the DNA data, a further 3,000 samples to be analysed, and a parallel genetic study of Long Covid.
The project is a collaboration between Edinburgh University, Action for ME, Oxford Nanopore Technologies, European Bioinformatics Institute (EMBL-EBI) and DecodeME.
“Crucially, it offers the potential to uncover patterns of familial inheritance and to break down this complex disease into its underlying biological causes – bringing us closer to more precise diagnosis and, ultimately, targeted treatments.” - Prof Chris Ponting, DecodeME investigator, University of Edinburgh.
AfME article | The Times | Thread
ME/CFS Research Review DNA sequencing study to help pinpoint biology of ME gets £4.7m
A blog post by Simon McGrath with a clear introduction of how the technology works and what it can find.
"It will use up the remaining precious DNA samples but will make the most of them with full sequencing to identify rare gene variants, long reads to uncover structural DNA variants and epigenetic changes to find chemical silencing."
Article | Thread
..................
Coming events
UK Webinar: SequenceME & Long Covid Phase 2 funding, May 26, 2026 02:30 PM BST
This webinar will explain the project, what this latest funding enables, and plans for the future. Registration link shows time in your time zone.
Registration | Thread
.....................
News, advocacy and articles
UK Physios for ME Do no harm: supporting people with ME/CFS.
"How can physiotherapists provide effective therapies while ensuring patients with this debilitating condition feel safe and supported?"
"This ME Awareness Day we are pleased to have a new article published in the Chartered Society of Physiotherapy's magazine 'Frontline', which goes out to all chartered physiotherapists in the UK (that's over 67,000!)"
Physios for ME | Frontline article | Thread
UK Long Covid Advocacy Open letter to the Royal College of Psychiatrists
The letter expresses concern about the inclusion of speakers promoting the outdated psychosocial framing of ME/CFS and Long Covid at the Royal College's Congress, including Garner, Chalder and Carson. The letter is signed by 20 organisations and 35+ patients, clinicians and academics.
Open letter sign on | Thread
Buried Alive with M.E
ME/CFS patient, advocate, and artist Anil Van Der Zee made this film as a testament to the many people who have passed from ME/PAIS, some of whom were close friends. It represents how these deaths were preventable, often caused by neglect, disinterest, and a lack of knowledge of the disease.
Film | Thread
Men about living with M.E.
For ME Awareness Day, eight men answered a few questions about what it is like for them to live with ME. The film was edited and published by Anil Van Der Zee. Men are a minority within the ME community, which can feel even more isolating in a disease that is already marginalized and neglected.
Film | Thread
#MEAction We Made Real Progress at #MillionsMissing — Here's What's Next
Update on the May 12th event at the HHS headquarters in Washington, DC, and a report on getting funding for the ME/CFS Research Roadmap.
Article | Thread
LA Weekly How Emily Taylor Shaped Solve M.E.’s Catalyst Awards to Accelerate Breakthrough Research in ME/CFS and Long COVID
Article about the Catalyst Awards, a program which funds ME/CFS and Long Covid research.
Article | Thread
Germany
The Liegend Demo initiative organized nationwide rallies to raise awareness about ME/CFS as a serious illness. Demonstrations included cities such as Munich, Nuremberg, Augsburg, Regensburg, and Würzburg.
Article (German) | Thread
Switzerland
The Swiss-German state broadcaster has published a good article on ME/CFS. It explains the troubles ME/CFS patients face with disability insurance procedures and how these often have a negative impact on their health.
Article (German) | Thread
The Netherlands
The Dutch Health Council has published its report on Long Covid. It urges the government to improve care, track Long Covid cases and invest in a long-term research program on post-acute infectious diseases.
Article | Thread
Denmark Best practice (short film)
A Danish short film titled "Best practice" has been selected for the OFF-Odense Film Festival and the Friss Hús Budapest International Short Film Festival. According to director Martin Strange-Hansen it's a short film touching on ME and the grey line between being a professional or a human on your job.
Trailer (English subtitles) l IMBd l Thread
Professor in health psychology Peter La Cour had a hard hitting opinion piece in the newspaper Politiken 4th May where he calls out the treatment of ME patients as the biggest health policy scandal of this decade.
Article (Danish, paywalled) l Thread
...........
Research
ME/CFS research
Biological Insights from Genome-Wide Association Studies and Whole Genome Sequencing of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Maccallini
"our meta-GWAS and post-GWAS analyses of 19,470 ME/CFS cases provide evidence for the involvement of brain tissues, synapses, and specific neuronal cell types in the genetic architecture of ME/CFS." "The independent replication of these findings using a gene module derived from rare variant analysis strengthens the validity of our results."
Preprint | Thread
Imbalance of Excitatory and Inhibitory Neurotransmitter Systems in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Wirth and Scheibenbogen
"This paper reviews current knowledge on neurotransmitter systems implicated in ME/CFS and Long COVID, focusing on potential mechanisms of dysregulation and their roles in disease pathology and symptom generation, as well as implications for treatment."
Article | Thread
Sleep in myalgic encephalomyelitis/chronic fatigue syndrome shows marked night-to-night fluctuation under free-living conditions—results from a matched case-control study — Saurel et al
"Using week-long wrist accelerometry, this study shows that under free-living conditions sleep in ME/CFS is characterized not only by impaired sleep efficiency but also by pronounced night-to-night variability, despite relatively stable bedtime compared to controls."
Article | Thread
Chronic fatigue syndrome in nursing practice: a concept analysis — Gao et al
"Drawing on international models such as the UK NICE guidelines, the conceptual framework developed in this study provides a theoretical basis that could inform the gradual establishment of CFS-specific service networks in China, including the training of specialist nurses and the development of community and home care services."
Article | Thread
Plasma Extracellular Vesicle Surface Marker Profiling Reveals Immune Cell–Associated Mitochondrial Membrane Potential Alterations in Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Ikeda et al
"Collectively, these findings indicate that EV alterations in the prepandemic cohort were limited to specific leukocyte- and neural-associated subsets rather than reflecting widespread changes across immune or vascular EV compartments."
Article | Thread
Cardiopulmonary exercise test results do not change over two sequential days in patients with chronic fatigue syndrome — Mancini et al
Fukuda + PEM inclusion criteria. "In our cohort of patients with ME/CFS and sedentary healthy control subjects, we found no change in peak VO2 , VO2VT, VO2 pulse, and VE/VCO2 between Day 1 and Day 2 CPETs."
Article | Thread
Long Covid research
Impaired microvascular reactivity in post-COVID-19 syndrome is independent of cardiorespiratory fitness — Thiel et al
"findings suggest that microvascular impairment may represent a persistent feature of PCS rather than a change attributable to physical deconditioning, with objective endothelial and perfusion abnormalities documented months after infection"
Article | Thread
Disrupted fluid homeostasis in patients with post-Covid-19 syndrome – a case series — Huhmar et al
"Polydipsia and/or polyuria was reported in 70%" "The mean measures of osmolality diverged from normal values in both serum (298 ± 4; reference range 285–292 mOsm/kg) and urine (707 ± 149, reference value >750 mOsm/kg)."
Article | Thread
Characterizing sleep disturbance phenotypes in long COVID: an EHR-based study from a safety-net hospital — Sohng et al
"hypersomnia occurred in the relative absence of baseline comorbidity and was strongly associated with hallmark PASC features—including post-exertional malaise, dysautonomia, and gait impairment—supporting the possibility of a de novo, illness-driven process."
Article | Thread
Impact of post-exertional malaise frequency and fatigue in Long COVID patients on health-related quality of life — Thölking et al
"Our results suggest that while PEM frequency is an important dimension, PEM severity may have a more direct and stable relationship with HRQoL."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
Research news and commentary
UK Sequence ME and Long Covid Major funding secured for Sequence ME & Long Covid, a DecodeMe project
This phase 2 of the project is funded by the UK government with £4.75 million, and a donation of £174,414 from WE&ME Foundation to support the team responsible for generating the sequencing data.
Phase 2 will take a year to sequence the whole genetic code of 6,000 of the DecodeME DNA samples. Later phases still requiring funding include analysis of the DNA data, a further 3,000 samples to be analysed, and a parallel genetic study of Long Covid.
The project is a collaboration between Edinburgh University, Action for ME, Oxford Nanopore Technologies, European Bioinformatics Institute (EMBL-EBI) and DecodeME.
“Crucially, it offers the potential to uncover patterns of familial inheritance and to break down this complex disease into its underlying biological causes – bringing us closer to more precise diagnosis and, ultimately, targeted treatments.” - Prof Chris Ponting, DecodeME investigator, University of Edinburgh.
AfME article | The Times | Thread
ME/CFS Research Review DNA sequencing study to help pinpoint biology of ME gets £4.7m
A blog post by Simon McGrath with a clear introduction of how the technology works and what it can find.
"It will use up the remaining precious DNA samples but will make the most of them with full sequencing to identify rare gene variants, long reads to uncover structural DNA variants and epigenetic changes to find chemical silencing."
Article | Thread
..................
Coming events
UK Webinar: SequenceME & Long Covid Phase 2 funding, May 26, 2026 02:30 PM BST
This webinar will explain the project, what this latest funding enables, and plans for the future. Registration link shows time in your time zone.
Registration | Thread
.....................
News, advocacy and articles
UK Physios for ME Do no harm: supporting people with ME/CFS.
"How can physiotherapists provide effective therapies while ensuring patients with this debilitating condition feel safe and supported?"
"This ME Awareness Day we are pleased to have a new article published in the Chartered Society of Physiotherapy's magazine 'Frontline', which goes out to all chartered physiotherapists in the UK (that's over 67,000!)"
Physios for ME | Frontline article | Thread
UK Long Covid Advocacy Open letter to the Royal College of Psychiatrists
The letter expresses concern about the inclusion of speakers promoting the outdated psychosocial framing of ME/CFS and Long Covid at the Royal College's Congress, including Garner, Chalder and Carson. The letter is signed by 20 organisations and 35+ patients, clinicians and academics.
Open letter sign on | Thread
Buried Alive with M.E
ME/CFS patient, advocate, and artist Anil Van Der Zee made this film as a testament to the many people who have passed from ME/PAIS, some of whom were close friends. It represents how these deaths were preventable, often caused by neglect, disinterest, and a lack of knowledge of the disease.
Film | Thread
Men about living with M.E.
For ME Awareness Day, eight men answered a few questions about what it is like for them to live with ME. The film was edited and published by Anil Van Der Zee. Men are a minority within the ME community, which can feel even more isolating in a disease that is already marginalized and neglected.
Film | Thread
#MEAction We Made Real Progress at #MillionsMissing — Here's What's Next
Update on the May 12th event at the HHS headquarters in Washington, DC, and a report on getting funding for the ME/CFS Research Roadmap.
Article | Thread
LA Weekly How Emily Taylor Shaped Solve M.E.’s Catalyst Awards to Accelerate Breakthrough Research in ME/CFS and Long COVID
Article about the Catalyst Awards, a program which funds ME/CFS and Long Covid research.
Article | Thread
Germany
The Liegend Demo initiative organized nationwide rallies to raise awareness about ME/CFS as a serious illness. Demonstrations included cities such as Munich, Nuremberg, Augsburg, Regensburg, and Würzburg.
Article (German) | Thread
Switzerland
The Swiss-German state broadcaster has published a good article on ME/CFS. It explains the troubles ME/CFS patients face with disability insurance procedures and how these often have a negative impact on their health.
Article (German) | Thread
The Netherlands
The Dutch Health Council has published its report on Long Covid. It urges the government to improve care, track Long Covid cases and invest in a long-term research program on post-acute infectious diseases.
Article | Thread
Denmark Best practice (short film)
A Danish short film titled "Best practice" has been selected for the OFF-Odense Film Festival and the Friss Hús Budapest International Short Film Festival. According to director Martin Strange-Hansen it's a short film touching on ME and the grey line between being a professional or a human on your job.
Trailer (English subtitles) l IMBd l Thread
Professor in health psychology Peter La Cour had a hard hitting opinion piece in the newspaper Politiken 4th May where he calls out the treatment of ME patients as the biggest health policy scandal of this decade.
Article (Danish, paywalled) l Thread
...........
Research
ME/CFS research
Biological Insights from Genome-Wide Association Studies and Whole Genome Sequencing of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Maccallini
"our meta-GWAS and post-GWAS analyses of 19,470 ME/CFS cases provide evidence for the involvement of brain tissues, synapses, and specific neuronal cell types in the genetic architecture of ME/CFS." "The independent replication of these findings using a gene module derived from rare variant analysis strengthens the validity of our results."
Preprint | Thread
Imbalance of Excitatory and Inhibitory Neurotransmitter Systems in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Wirth and Scheibenbogen
"This paper reviews current knowledge on neurotransmitter systems implicated in ME/CFS and Long COVID, focusing on potential mechanisms of dysregulation and their roles in disease pathology and symptom generation, as well as implications for treatment."
Article | Thread
Sleep in myalgic encephalomyelitis/chronic fatigue syndrome shows marked night-to-night fluctuation under free-living conditions—results from a matched case-control study — Saurel et al
"Using week-long wrist accelerometry, this study shows that under free-living conditions sleep in ME/CFS is characterized not only by impaired sleep efficiency but also by pronounced night-to-night variability, despite relatively stable bedtime compared to controls."
Article | Thread
Chronic fatigue syndrome in nursing practice: a concept analysis — Gao et al
"Drawing on international models such as the UK NICE guidelines, the conceptual framework developed in this study provides a theoretical basis that could inform the gradual establishment of CFS-specific service networks in China, including the training of specialist nurses and the development of community and home care services."
Article | Thread
Plasma Extracellular Vesicle Surface Marker Profiling Reveals Immune Cell–Associated Mitochondrial Membrane Potential Alterations in Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Ikeda et al
"Collectively, these findings indicate that EV alterations in the prepandemic cohort were limited to specific leukocyte- and neural-associated subsets rather than reflecting widespread changes across immune or vascular EV compartments."
Article | Thread
Cardiopulmonary exercise test results do not change over two sequential days in patients with chronic fatigue syndrome — Mancini et al
Fukuda + PEM inclusion criteria. "In our cohort of patients with ME/CFS and sedentary healthy control subjects, we found no change in peak VO2 , VO2VT, VO2 pulse, and VE/VCO2 between Day 1 and Day 2 CPETs."
Article | Thread
Long Covid research
Impaired microvascular reactivity in post-COVID-19 syndrome is independent of cardiorespiratory fitness — Thiel et al
"findings suggest that microvascular impairment may represent a persistent feature of PCS rather than a change attributable to physical deconditioning, with objective endothelial and perfusion abnormalities documented months after infection"
Article | Thread
Disrupted fluid homeostasis in patients with post-Covid-19 syndrome – a case series — Huhmar et al
"Polydipsia and/or polyuria was reported in 70%" "The mean measures of osmolality diverged from normal values in both serum (298 ± 4; reference range 285–292 mOsm/kg) and urine (707 ± 149, reference value >750 mOsm/kg)."
Article | Thread
Characterizing sleep disturbance phenotypes in long COVID: an EHR-based study from a safety-net hospital — Sohng et al
"hypersomnia occurred in the relative absence of baseline comorbidity and was strongly associated with hallmark PASC features—including post-exertional malaise, dysautonomia, and gait impairment—supporting the possibility of a de novo, illness-driven process."
Article | Thread
Impact of post-exertional malaise frequency and fatigue in Long COVID patients on health-related quality of life — Thölking et al
"Our results suggest that while PEM frequency is an important dimension, PEM severity may have a more direct and stable relationship with HRQoL."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 18th May 2026
Please note: On Saturday 30th May, starting at about 2:00 pm EDT (UTC-4), the forum will be unavailable for a short time due to scheduled maintenance.
News, advocacy and articles
UK ME Association A Step Forward in Recognition: New ‘Very Severe ME/CFS’ SNOMED CT Code
"Following an application submitted in January 2026, we can confirm that a new SNOMED CT (Systematized Nomenclature of Medicine Clinical Terms) concept has now been approved and published." There were previously only codes for mild, moderate and severe ME/CFS for doctors to use on patients' records. "This left a significant gap, because very severe ME/CFS is a clinically distinct category with its own specific care needs and risks."
Article | Thread
FUNCAP A separate version of FUNCAP, a questionnaire assessing functional capacity in patients with ME, aimed at children and adolescents is in development. The Norwegian ME Association invites children and adolescents with ME, carers, and those who had ME as children to answer a survey to suggest suitable questions for measuring level of function. The survey is in Norwegian.
More information (Norwegian) l Thread
Pulse UK to sequence genomes of 6,000 ME/CFS patients for treatment clues
More news coverage about the SequenceME research study. "The £4.75m research project is the largest of its kind and will generate a high-resolution genetic map of the illness."
Article | Thread
Emerge Australia Communiqué: Fatigue isn't the same as post-exertional malaise (PEM)
"PEM is real. It is serious. And it must not be made worse by misunderstanding." Signed by researchers, clinicians and advocates.
PDF | Thread
Top ten tips for understanding post-exertional malaise by Kate Herbert, Nurse Educator at Emerge.
Video | Thread
Emerge Australia The Emerge Australia Awards for Excellence in Journalism
These awards "recognise and honour the exceptional journalists who are dedicated to enhancing media coverage of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID."
Listed below are media awards for ME/CFS awareness. See website for Long Covid awareness awards.
- Broede Carmody and Hannah Kennelly (Winners) It took 11 years for Adrienne’s illness to be diagnosed. A new computer model could change everything (also in The Age)
- Peter McCluskey The Conditional Release Podcast Episode 187 - The Pain of ME/CFS
- David Tuller Chronic Denial: A debunked theory about chronic fatigue syndrome is being recycled to explain Long Covid—with troubling results
- ABC Nightlife Living with Chronic Fatigue Syndrome
- Zoe Simmons ‘Devastating’: Australians lift lid on life-threatening national medical crisis
- Leigh-Anne Sharland Suddenly Different: From Bedbound to Back Again: Jo Morton’s Dysautonomia Comeback
- Stefan Chin and Jamie Seltzer SciShow: Exercise Actually Makes Chronic Fatigue Syndrome Worse
Website | Thread
Aotearoa New Zealand NZ Media Awards: 2026 Winners & Finalists
Zoe Madden-Smith (Re: News / TVNZ) wins Video Journalist of the Year for "ME/Chronic fatigue syndrome: The mysterious illness trapping people in their bodies."
Website | Video | Thread
Health is Political by Brittani James Long COVID Changed Everything
Good blog post by Family Medicine physician Dr. Brittani James on what illnesses such as Long Covid and ME reveal about medicine's limits.
Blog l Thread
Bateman Horne Center Orthostatic Intolerance Testing Made Clear: Tilt Table, Active Stand, and the Passive Stand
This blog post discusses orthostatic intolerance, a "hallmark feature" of ME/CFS and Long Covid, and the three tests used for diagnosis.
Blog | Thread
The Sick Times A toolkit for new advocates: What I learned from the Long COVID Moonshot campaign
Advice for those who work on advocacy projects. The focus is on Long Covid (ME/CFS is not mentioned) but much of the advice still applies.
Article | Thread
...........
Coming events
Solve ME Webinar Sequence ME & Long Covid: The Search for ME/CFS and Long Covid Biomarkers and Subtypes
Wednesday, June 10, 11:00 am Pacific / 2:00 pm Eastern
Announcement | Registration | Thread
...........
Research news and commentary
UK Action for ME Launch of the PRIME ME/CFS Research Involvement Hub
"We’re delighted to announce the launch of the PRIME ME/CFS Research Involvement Hub - a major new initiative placing people with lived experience of ME at the heart of research."
The project "will create the world’s first network of at least 100 people with lived experience of ME, supported and trained as PPI contributors to work alongside researchers."
Article and sign up | Thread
...........
Research
ME/CFS research
Central noradrenergic deficiency in post-infectious chronic fatigue: neurobehavioral correlates — Aregawi et al
Low activity of the Norepinephrine Pathway was associated with decreased scores on general health indices […] and with decreased motor scores such as shortened handgrip duration" "did not correlate with other symptoms such as pain, altered cognition, decreased memory, anxiety, or depression." "Within the PASC group, Norepinephrine Pathway activity was associated with post-exertional malaise."
Article | Thread
Comprehensive Immunophenotyping of Monocytes and Dendritic Cells Suggests Distinct Pathophysiology in Chronic Fatigue Syndrome and Long COVID — Petrov et al
Article | Thread
Reframing ME/CFS: toward a unified mechanistic model of chronic post-infectious diseases — Watton and Prusty
Review.
Article | Thread
Designing studies for post-treatment Lyme disease and other infection-associated chronic illnesses — Arnaboldi et al
"Research increasingly suggests that ME/CFS may arise from a convergence of immune, neurologic, metabolic and genetic influences following an initial insult." "We also address broader influences on research quality, such as stigma, historical neglect, and the urgency to find treatments, which have contributed to the proliferation of poorly controlled studies and questionable practices."
Article | Thread
Long Covid research
Monocyte Oxidative Stress Underlies Persistent Immune Activation in Long-COVID Postural Orthostatic Tachycardia Syndrome — Abd-Eldayem et al
"Importantly, the frequency of IFN-γ-producing T cells within doublets correlated strongly with the magnitude of orthostatic heart rate increase, as did the proportion of IL-17A-producing cells." "doublets also correlated with total COMPASS-31 score, indicating that this inflammatory doublet phenotype tracks with greater autonomic symptom burden as well as physiological orthostatic heart rate responses."
Preprint | Thread
Shared autonomous HERV loci transcription identifies a unique circulating CD14+-xCR1+ mononuclear cell phenotype in a patient group with post-acute sequelae of COVID-19 — Koo and Morrow
"The presence of CD14+ cells with xCR1+ expression in the circulation of the 12 PASC patients is consistent with the possibility that these cells arose from expanded myeloid progenitors that had been altered as a result of COVID-19 infection."
Article | Thread
Integrated immune, apoptotic and mitochondrial gene dysregulation in Long COVID and their association with symptom burden at 10 months post-infection — Ali et al
"demonstrates coordinated transcriptional alterations across immune, antiviral, mitochondrial, and apoptosis-related pathways in individuals with Long COVID at 10 months" "particularly those related to immunometabolic and mitochondrial pathways, were independently associated with symptom burden."
Article | Thread
C1-esterase Inhibitor Treatment is Associated with Immune and Vascular Pathway Modulation in PASC with Neurological Symptoms: Longitudinal Plasma Proteomics — Orr et al
"This study provides exploratory, hypothesis-generating insights into proteomic changes observed in association with C1-INH administration in patients with persistent neurological symptoms after SARS-CoV-2 infection."
Article | Thread
De novo COVID-19-associated insulin resistance drives dysregulated neutrophil extracellular trap formation (NETosis) four months after infection — Sanhueza et al
"This finding is reinforced by results obtained using confocal microscopy and live imaging, where plasma from patients with IR induced greater NETosis compared to plasma from control patients."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
Please note: On Saturday 30th May, starting at about 2:00 pm EDT (UTC-4), the forum will be unavailable for a short time due to scheduled maintenance.
News, advocacy and articles
UK ME Association A Step Forward in Recognition: New ‘Very Severe ME/CFS’ SNOMED CT Code
"Following an application submitted in January 2026, we can confirm that a new SNOMED CT (Systematized Nomenclature of Medicine Clinical Terms) concept has now been approved and published." There were previously only codes for mild, moderate and severe ME/CFS for doctors to use on patients' records. "This left a significant gap, because very severe ME/CFS is a clinically distinct category with its own specific care needs and risks."
Article | Thread
FUNCAP A separate version of FUNCAP, a questionnaire assessing functional capacity in patients with ME, aimed at children and adolescents is in development. The Norwegian ME Association invites children and adolescents with ME, carers, and those who had ME as children to answer a survey to suggest suitable questions for measuring level of function. The survey is in Norwegian.
More information (Norwegian) l Thread
Pulse UK to sequence genomes of 6,000 ME/CFS patients for treatment clues
More news coverage about the SequenceME research study. "The £4.75m research project is the largest of its kind and will generate a high-resolution genetic map of the illness."
Article | Thread
Emerge Australia Communiqué: Fatigue isn't the same as post-exertional malaise (PEM)
"PEM is real. It is serious. And it must not be made worse by misunderstanding." Signed by researchers, clinicians and advocates.
PDF | Thread
Top ten tips for understanding post-exertional malaise by Kate Herbert, Nurse Educator at Emerge.
Video | Thread
Emerge Australia The Emerge Australia Awards for Excellence in Journalism
These awards "recognise and honour the exceptional journalists who are dedicated to enhancing media coverage of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID."
Listed below are media awards for ME/CFS awareness. See website for Long Covid awareness awards.
- Broede Carmody and Hannah Kennelly (Winners) It took 11 years for Adrienne’s illness to be diagnosed. A new computer model could change everything (also in The Age)
- Peter McCluskey The Conditional Release Podcast Episode 187 - The Pain of ME/CFS
- David Tuller Chronic Denial: A debunked theory about chronic fatigue syndrome is being recycled to explain Long Covid—with troubling results
- ABC Nightlife Living with Chronic Fatigue Syndrome
- Zoe Simmons ‘Devastating’: Australians lift lid on life-threatening national medical crisis
- Leigh-Anne Sharland Suddenly Different: From Bedbound to Back Again: Jo Morton’s Dysautonomia Comeback
- Stefan Chin and Jamie Seltzer SciShow: Exercise Actually Makes Chronic Fatigue Syndrome Worse
Website | Thread
Aotearoa New Zealand NZ Media Awards: 2026 Winners & Finalists
Zoe Madden-Smith (Re: News / TVNZ) wins Video Journalist of the Year for "ME/Chronic fatigue syndrome: The mysterious illness trapping people in their bodies."
Website | Video | Thread
Health is Political by Brittani James Long COVID Changed Everything
Good blog post by Family Medicine physician Dr. Brittani James on what illnesses such as Long Covid and ME reveal about medicine's limits.
Blog l Thread
Bateman Horne Center Orthostatic Intolerance Testing Made Clear: Tilt Table, Active Stand, and the Passive Stand
This blog post discusses orthostatic intolerance, a "hallmark feature" of ME/CFS and Long Covid, and the three tests used for diagnosis.
Blog | Thread
The Sick Times A toolkit for new advocates: What I learned from the Long COVID Moonshot campaign
Advice for those who work on advocacy projects. The focus is on Long Covid (ME/CFS is not mentioned) but much of the advice still applies.
Article | Thread
...........
Coming events
Solve ME Webinar Sequence ME & Long Covid: The Search for ME/CFS and Long Covid Biomarkers and Subtypes
Wednesday, June 10, 11:00 am Pacific / 2:00 pm Eastern
Announcement | Registration | Thread
...........
Research news and commentary
UK Action for ME Launch of the PRIME ME/CFS Research Involvement Hub
"We’re delighted to announce the launch of the PRIME ME/CFS Research Involvement Hub - a major new initiative placing people with lived experience of ME at the heart of research."
The project "will create the world’s first network of at least 100 people with lived experience of ME, supported and trained as PPI contributors to work alongside researchers."
Article and sign up | Thread
...........
Research
ME/CFS research
Central noradrenergic deficiency in post-infectious chronic fatigue: neurobehavioral correlates — Aregawi et al
Low activity of the Norepinephrine Pathway was associated with decreased scores on general health indices […] and with decreased motor scores such as shortened handgrip duration" "did not correlate with other symptoms such as pain, altered cognition, decreased memory, anxiety, or depression." "Within the PASC group, Norepinephrine Pathway activity was associated with post-exertional malaise."
Article | Thread
Comprehensive Immunophenotyping of Monocytes and Dendritic Cells Suggests Distinct Pathophysiology in Chronic Fatigue Syndrome and Long COVID — Petrov et al
Article | Thread
Reframing ME/CFS: toward a unified mechanistic model of chronic post-infectious diseases — Watton and Prusty
Review.
Article | Thread
Designing studies for post-treatment Lyme disease and other infection-associated chronic illnesses — Arnaboldi et al
"Research increasingly suggests that ME/CFS may arise from a convergence of immune, neurologic, metabolic and genetic influences following an initial insult." "We also address broader influences on research quality, such as stigma, historical neglect, and the urgency to find treatments, which have contributed to the proliferation of poorly controlled studies and questionable practices."
Article | Thread
Long Covid research
Monocyte Oxidative Stress Underlies Persistent Immune Activation in Long-COVID Postural Orthostatic Tachycardia Syndrome — Abd-Eldayem et al
"Importantly, the frequency of IFN-γ-producing T cells within doublets correlated strongly with the magnitude of orthostatic heart rate increase, as did the proportion of IL-17A-producing cells." "doublets also correlated with total COMPASS-31 score, indicating that this inflammatory doublet phenotype tracks with greater autonomic symptom burden as well as physiological orthostatic heart rate responses."
Preprint | Thread
Shared autonomous HERV loci transcription identifies a unique circulating CD14+-xCR1+ mononuclear cell phenotype in a patient group with post-acute sequelae of COVID-19 — Koo and Morrow
"The presence of CD14+ cells with xCR1+ expression in the circulation of the 12 PASC patients is consistent with the possibility that these cells arose from expanded myeloid progenitors that had been altered as a result of COVID-19 infection."
Article | Thread
Integrated immune, apoptotic and mitochondrial gene dysregulation in Long COVID and their association with symptom burden at 10 months post-infection — Ali et al
"demonstrates coordinated transcriptional alterations across immune, antiviral, mitochondrial, and apoptosis-related pathways in individuals with Long COVID at 10 months" "particularly those related to immunometabolic and mitochondrial pathways, were independently associated with symptom burden."
Article | Thread
C1-esterase Inhibitor Treatment is Associated with Immune and Vascular Pathway Modulation in PASC with Neurological Symptoms: Longitudinal Plasma Proteomics — Orr et al
"This study provides exploratory, hypothesis-generating insights into proteomic changes observed in association with C1-INH administration in patients with persistent neurological symptoms after SARS-CoV-2 infection."
Article | Thread
De novo COVID-19-associated insulin resistance drives dysregulated neutrophil extracellular trap formation (NETosis) four months after infection — Sanhueza et al
"This finding is reinforced by results obtained using confocal microscopy and live imaging, where plasma from patients with IR induced greater NETosis compared to plasma from control patients."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky