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