News in Brief - May 2026
- Thread starter S4ME News
- Start date
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