News in Brief - June 2026
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Week beginning 1st June 2026
News, advocacy and articles
Long Covid Advocacy Commentary on the Long Covid article by Alan Levinovitz in WIRED magazine
Dr Elke Hausmann "examines the controversial WIRED article which has sparked significant concern among patients and advocates for its portrayal of Long Covid, recovery narratives, and brain retraining approaches." "The choice is not between no exercise and getting deconditioned, or exercise and preventing deconditioning; it’s about finding a balance between keeping moving as much as possible without negative consequences so as to keep as conditioned as possible."
Article | Wired article | Thread
The Economics of Survival by Fred Rossi The Patient Who Isn’t Supposed to Exist
"I taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward."
Article | Thread
David Tuller Interview with Professor Chris Ponting about Sequence ME & Long COVID
An interview about "Sequence ME & Long Covid", a multi-phase follow-up project of the UK-based genome wide association study DecodeME. Duration: 20 minutes.
YouTube l Thread
Røysumtunet A Norwegian institution with a ward for severe ME has made a short introduction video about the care they provide for their ME patients. Includes Professor Ola D. Saugstad MD, professional manager Mari Gamme Sollie and occupational therapist Katarina Færøvig.
YouTube (Norwegian) l Video (on Bluesky with English subtitles) l Thread
Bateman Horne Center When “It’s Not POTS” Doesn’t Mean “It’s Not Dysautonomia”
Blog post about orthostatic intolerance in people with ME/CFS and Long Covid. "Orthostatic intolerance is a broader category, and the absence of a POTS diagnosis does not rule out other causes of OI, including other forms of dysautonomia."
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 PRIME Workshop 2 The Similarities and Distinctions between Long Covid & ME/CFS, April 24th 2026
The recording is now available on YouTube. Duration 3 hours.
Speakers included Danny Altmann, Amy Proal and Manoj Sivan.
Abstracts | Video | Thread
ME Research UK Breakthrough magazine, Spring 2026
The spring 2026 issue of this magazine is now available online.
Article | Magazine (PDF) | Thread
USA - NIH RECOVER RECOVER launches second phase of adult observational study
"Fewer in-person study visits and improvements to symptom surveys will help reduce burden for study participants."
Article | Thread
...........
Research
ME/CFS research
Elevated serum levels of interleukin-11 and matrix metalloproteinase-9 in myalgic encephalomyelitis/chronic fatigue syndrome — Chinnappan et al
"In this pilot study, we found significantly elevated levels of IL-11 and MMP-9 in the serum of ME/CFS patients compared to age and gender-matched healthy control subjects."
Article | Thread
Novel activity and participation scales for children, adolescents, and young adults with postacute infection and vaccination syndromes and/or ME/CFS — Weidmann et al
"Both questionnaires were designed to be completed within a few minutes, easily understood, and suitable for screening and serial monitoring."
Article | Thread
Transdisziplinäres Expert:innen-Statement: Pflegeleitfaden für Menschen mit schwerem ME/CFS in der häuslichen Versorgung — Hermisson et al
In German with an English version planned. "The guide is based on a compilation of practice-oriented measures that have proven effective from the perspective of those affected and family caregivers. These were professionally categorized and further developed by experts in nursing science, physical therapy, general practice and public health."
Article | Thread
Long Covid research
Prioritizing long COVID related single nucleotide polymorphisms by mining genome-wide association studies of COVID-19 susceptibility and hospitalization — Cheng
"Furthermore, a unique category comprising 20 SNPs emerged specifically in non-hospitalized COVID-19 cases. These include rs62401842 (KCTD16) and rs56143829 (WASF3), mapped to genes involved in brain-related functions."
Article | Thread
Retinal microvascular alterations consistent with endothelial dysregulation in paediatric post-COVID-19 syndrome: A prospective matched-cohort study — Lamprecht et al
"Compared with matched healthy peers, children with PCS exhibited a coherent pattern of arteriolar and venular dilation with a disproportionate arteriolar contribution reflected in an elevated arteriovenous ratio."
Article | Thread
Increased anti-nucleocapsid secretory IgA and consumption of complement component 3 in post-COVID syndrome patients — Hai et al
"these results implicate the complement system as a key dysregulated component of the immune response contributing to the pathophysiology of post-COVID syndrome"
Article | Thread
Metformin on the Presence of COVID-19 Symptoms 6 Months after Infection: The ACTIV-6 Randomized Clinical Trial — Bramante et al
"Metformin did not exceed the primary outcome threshold for declaring efficacy for reducing PASC."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
Long Covid Advocacy Commentary on the Long Covid article by Alan Levinovitz in WIRED magazine
Dr Elke Hausmann "examines the controversial WIRED article which has sparked significant concern among patients and advocates for its portrayal of Long Covid, recovery narratives, and brain retraining approaches." "The choice is not between no exercise and getting deconditioned, or exercise and preventing deconditioning; it’s about finding a balance between keeping moving as much as possible without negative consequences so as to keep as conditioned as possible."
Article | Wired article | Thread
The Economics of Survival by Fred Rossi The Patient Who Isn’t Supposed to Exist
"I taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward."
Article | Thread
David Tuller Interview with Professor Chris Ponting about Sequence ME & Long COVID
An interview about "Sequence ME & Long Covid", a multi-phase follow-up project of the UK-based genome wide association study DecodeME. Duration: 20 minutes.
YouTube l Thread
Røysumtunet A Norwegian institution with a ward for severe ME has made a short introduction video about the care they provide for their ME patients. Includes Professor Ola D. Saugstad MD, professional manager Mari Gamme Sollie and occupational therapist Katarina Færøvig.
YouTube (Norwegian) l Video (on Bluesky with English subtitles) l Thread
Bateman Horne Center When “It’s Not POTS” Doesn’t Mean “It’s Not Dysautonomia”
Blog post about orthostatic intolerance in people with ME/CFS and Long Covid. "Orthostatic intolerance is a broader category, and the absence of a POTS diagnosis does not rule out other causes of OI, including other forms of dysautonomia."
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 PRIME Workshop 2 The Similarities and Distinctions between Long Covid & ME/CFS, April 24th 2026
The recording is now available on YouTube. Duration 3 hours.
Speakers included Danny Altmann, Amy Proal and Manoj Sivan.
Abstracts | Video | Thread
ME Research UK Breakthrough magazine, Spring 2026
The spring 2026 issue of this magazine is now available online.
Article | Magazine (PDF) | Thread
USA - NIH RECOVER RECOVER launches second phase of adult observational study
"Fewer in-person study visits and improvements to symptom surveys will help reduce burden for study participants."
Article | Thread
...........
Research
ME/CFS research
Elevated serum levels of interleukin-11 and matrix metalloproteinase-9 in myalgic encephalomyelitis/chronic fatigue syndrome — Chinnappan et al
"In this pilot study, we found significantly elevated levels of IL-11 and MMP-9 in the serum of ME/CFS patients compared to age and gender-matched healthy control subjects."
Article | Thread
Novel activity and participation scales for children, adolescents, and young adults with postacute infection and vaccination syndromes and/or ME/CFS — Weidmann et al
"Both questionnaires were designed to be completed within a few minutes, easily understood, and suitable for screening and serial monitoring."
Article | Thread
Transdisziplinäres Expert:innen-Statement: Pflegeleitfaden für Menschen mit schwerem ME/CFS in der häuslichen Versorgung — Hermisson et al
In German with an English version planned. "The guide is based on a compilation of practice-oriented measures that have proven effective from the perspective of those affected and family caregivers. These were professionally categorized and further developed by experts in nursing science, physical therapy, general practice and public health."
Article | Thread
Long Covid research
Prioritizing long COVID related single nucleotide polymorphisms by mining genome-wide association studies of COVID-19 susceptibility and hospitalization — Cheng
"Furthermore, a unique category comprising 20 SNPs emerged specifically in non-hospitalized COVID-19 cases. These include rs62401842 (KCTD16) and rs56143829 (WASF3), mapped to genes involved in brain-related functions."
Article | Thread
Retinal microvascular alterations consistent with endothelial dysregulation in paediatric post-COVID-19 syndrome: A prospective matched-cohort study — Lamprecht et al
"Compared with matched healthy peers, children with PCS exhibited a coherent pattern of arteriolar and venular dilation with a disproportionate arteriolar contribution reflected in an elevated arteriovenous ratio."
Article | Thread
Increased anti-nucleocapsid secretory IgA and consumption of complement component 3 in post-COVID syndrome patients — Hai et al
"these results implicate the complement system as a key dysregulated component of the immune response contributing to the pathophysiology of post-COVID syndrome"
Article | Thread
Metformin on the Presence of COVID-19 Symptoms 6 Months after Infection: The ACTIV-6 Randomized Clinical Trial — Bramante et al
"Metformin did not exceed the primary outcome threshold for declaring efficacy for reducing PASC."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 8th June 2026
News, advocacy and articles
UK Long Covid Advocacy at the Royal College of Psychiatrists Congress - Now!
#HearOurVoices Campaign: Help us ensure our community is heard
The RCPsych congress is on Monday 15th June. LCA has sent a letter of 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. They urge others to join their campaign and will hand out copies of their letter at the congress.
Article | Thread
Trial by Error by David Tuller The Truth According to Wired (and Alan Levinovitz)
A critical and thorough look at a much debated Wired article on mind-body approaches to Long Covid (see last week's news brief).
Article l Thread
San Can every infection become a chronic disease?
The article asks if the true burden of infectious diseases is larger than previously anticipated. Interviews with among others Ziyad Al-Aly and Amy Proal.
Article l Thread
USA - MEAction Chronically Ill Community Responds to CMS Ruling on Medicaid
Discussion about current ruling which makes it difficult to get an exemption from new Medicaid work requirements.
Article | Thread
USA - Solve ME How to Submit a Public Comment on the Proposed Federal Grant Rule
Solve ME is asking people in the USA to comment on the proposed rule and to call/email Congress.
Article | Thread
.........
Coming events
UK PRIME Webinar 3 on PEM Thursday 30th July, 2026 2-5 pm GMT
Talk 1: Post-Exertional Malaise - a perspective from the online ME/CFS community of Science for ME. Maree Candish
Talk 2: The pathophysiology of PEM, what we know, but importantly, what we don’t? Mark Faghy
Talk 3: Failure to capture PEM distorts evidence in ME/CFS and Long COVID trials. Marjon Wormgoor
Talk 4: How to Eat an Elephant: Contemporary Scientific and Clinical Approaches to Post-Exertional Malaise. Todd Davenport
Talk 5: Molecular signals of PEM. Maureen Hanson
Announcement | Programme (PDF) | Thread
.........
Research news and commentary
Action for ME Sequence ME and Long Covid Webinar May 2026
A recording of this webinar is now available on YouTube. Duration 59:28 minutes.
"This webinar covers the Sequence ME and Long Covid's aims and progress, what the UK government funding means for the next phase of the research, and a Q&A with Action for ME CEO Sonya Chowdhury and Professor Chris Ponting from the University of Edinburgh."
Video | Thread
Solve ME Sequence ME & Long Covid: The Search for ME/CFS and Long Covid Biomarkers and Subtypes
A recording of this webinar is now available on YouTube. Duration about one hour including the Q&A session at the end.
Discussion of how this study "could reveal many more genes, gene-regulation elements, and biological pathways that affect ME/CFS risk, advance efforts to identify new biomarkers for disease subtypes, and ultimately lead to new treatments."
Video | Slides (PDF) | Thread
.........
Research
ME/CFS research
Raman Spectroscopy Combined with Machine Learning Reveals Myalgic Encephalomyelitis–Associated Biomolecular Signatures at Rest and After Standardized Stress — Heidarifard et al
Pilot study. "The observed spectral patterns are consistent with disturbances in amino acid biology, lipid regulation, and energy metabolism that have previously been implicated in ME."
Article | Thread
Two-timepoint multidomain follow-up of post-COVID condition and ME/CFS: overlapping autonomic, small-fiber, and cognitive changes — Azcue et al
"In summary, this two-timepoint follow-up study supports substantial overlap between PCC and ME/CFS across autonomic, small-fiber/sensory, cognitive, and clinical symptom domains." "Among individuals with persistent symptoms, PCC may come to resemble longer-standing ME/CFS across several physiological and cognitive domains."
Article | Thread
Global and local genetic overlap among ME/CFS, irritable bowel syndrome and psychiatric traits: a hypothesis-generating analysis — Lee
"ME/CFS heritability is strongly enriched in inhibitory neurons (P = 1.2 × 10−7) and, with biological coherence, in enteric nervous system neurons (FDR = 0.004), supporting neural and enteric neuronal contributions to disease susceptibility; the absence of peripheral immune cell-type enrichment in this atlas should not be interpreted as excluding immune mechanisms, and microglia did show FDR-significant enrichment"
Preprint | Thread
Benchmarking large language models for cell-free RNA diagnostic biomarker discovery — Gaudio et al
"Convergence among models was strongest in the [Kawasaki Disease] vs. MIS-C and TB cohorts and weakest in ME/CFS, a condition with limited mechanistic consensus and comparatively sparse literature."
Article | Thread
Long Covid research
Single-cell profiling of innate and adaptive immune dysregulation in Long COVID — Satpathy et al
"Collectively, cellular communication analysis highlighted a reprogrammed immune signaling network in Long COVID, defined by selective crosstalk among monocytes, B cells, and NK cells." "higher NK cell abundance correlated with less symptom burden among Long COVID patients."
Preprint | Thread
Persistent Cerebral 18-FDG PET Changes in Patients With Long COVID Presenting With Fatigue and Post Exertional Malaise — Ganesh et al
"The predominance of cerebral hypometabolism in patients with PEM draws important corollaries to similar changes seen in patients with FM and ME/CFS in prior neuroimaging studies."
Article | Thread
Immunothrombosis in hospitalized COVID-19 patients identified by multiomics profiling and linked to postacute complications — Ansone et al
Prospective, longitudinal study of hospitalised patients from admission to 3 months. "patients who developed long COVID exhibited a distinct blood transcriptional signature at three months consistent with an endothelial-associated activation profile, including platelet reactivity, complement dysregulation, and low-grade vascular inflammation, distinguishing them from fully recovered individuals."
Article | Thread
Clinical Utility of SARS-CoV-2 Antibody Titers in the Management of Patients With Long COVID Infected With the Omicron Variant — Kawaguchi et al
"S-antibody titers were not significantly associated with most long COVID symptoms, including fatigue, headache, insomnia, dizziness, dyspnea, dysosmia, and dysgeusia. However, higher S-antibody levels were associated with a lower likelihood of memory disturbance even after multivariable adjustment."
Article | Thread
Transcutaneous Auricular Vagus Nerve Stimulation for Post-COVID-19 Condition: A Systematic Review and Critical Appraisal of Clinical Evidence — Balan et al
"The central finding is that three of five studies (60%) exhibited high overall risk of bias, positive findings were confined exclusively to inadequately blinded or uncontrolled studies, and the two studies with adequate or near-adequate blinding showed null or paradoxically negative results."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
UK Long Covid Advocacy at the Royal College of Psychiatrists Congress - Now!
#HearOurVoices Campaign: Help us ensure our community is heard
The RCPsych congress is on Monday 15th June. LCA has sent a letter of 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. They urge others to join their campaign and will hand out copies of their letter at the congress.
Article | Thread
Trial by Error by David Tuller The Truth According to Wired (and Alan Levinovitz)
A critical and thorough look at a much debated Wired article on mind-body approaches to Long Covid (see last week's news brief).
Article l Thread
San Can every infection become a chronic disease?
The article asks if the true burden of infectious diseases is larger than previously anticipated. Interviews with among others Ziyad Al-Aly and Amy Proal.
Article l Thread
USA - MEAction Chronically Ill Community Responds to CMS Ruling on Medicaid
Discussion about current ruling which makes it difficult to get an exemption from new Medicaid work requirements.
Article | Thread
USA - Solve ME How to Submit a Public Comment on the Proposed Federal Grant Rule
Solve ME is asking people in the USA to comment on the proposed rule and to call/email Congress.
Article | Thread
.........
Coming events
UK PRIME Webinar 3 on PEM Thursday 30th July, 2026 2-5 pm GMT
Talk 1: Post-Exertional Malaise - a perspective from the online ME/CFS community of Science for ME. Maree Candish
Talk 2: The pathophysiology of PEM, what we know, but importantly, what we don’t? Mark Faghy
Talk 3: Failure to capture PEM distorts evidence in ME/CFS and Long COVID trials. Marjon Wormgoor
Talk 4: How to Eat an Elephant: Contemporary Scientific and Clinical Approaches to Post-Exertional Malaise. Todd Davenport
Talk 5: Molecular signals of PEM. Maureen Hanson
Announcement | Programme (PDF) | Thread
.........
Research news and commentary
Action for ME Sequence ME and Long Covid Webinar May 2026
A recording of this webinar is now available on YouTube. Duration 59:28 minutes.
"This webinar covers the Sequence ME and Long Covid's aims and progress, what the UK government funding means for the next phase of the research, and a Q&A with Action for ME CEO Sonya Chowdhury and Professor Chris Ponting from the University of Edinburgh."
Video | Thread
Solve ME Sequence ME & Long Covid: The Search for ME/CFS and Long Covid Biomarkers and Subtypes
A recording of this webinar is now available on YouTube. Duration about one hour including the Q&A session at the end.
Discussion of how this study "could reveal many more genes, gene-regulation elements, and biological pathways that affect ME/CFS risk, advance efforts to identify new biomarkers for disease subtypes, and ultimately lead to new treatments."
Video | Slides (PDF) | Thread
.........
Research
ME/CFS research
Raman Spectroscopy Combined with Machine Learning Reveals Myalgic Encephalomyelitis–Associated Biomolecular Signatures at Rest and After Standardized Stress — Heidarifard et al
Pilot study. "The observed spectral patterns are consistent with disturbances in amino acid biology, lipid regulation, and energy metabolism that have previously been implicated in ME."
Article | Thread
Two-timepoint multidomain follow-up of post-COVID condition and ME/CFS: overlapping autonomic, small-fiber, and cognitive changes — Azcue et al
"In summary, this two-timepoint follow-up study supports substantial overlap between PCC and ME/CFS across autonomic, small-fiber/sensory, cognitive, and clinical symptom domains." "Among individuals with persistent symptoms, PCC may come to resemble longer-standing ME/CFS across several physiological and cognitive domains."
Article | Thread
Global and local genetic overlap among ME/CFS, irritable bowel syndrome and psychiatric traits: a hypothesis-generating analysis — Lee
"ME/CFS heritability is strongly enriched in inhibitory neurons (P = 1.2 × 10−7) and, with biological coherence, in enteric nervous system neurons (FDR = 0.004), supporting neural and enteric neuronal contributions to disease susceptibility; the absence of peripheral immune cell-type enrichment in this atlas should not be interpreted as excluding immune mechanisms, and microglia did show FDR-significant enrichment"
Preprint | Thread
Benchmarking large language models for cell-free RNA diagnostic biomarker discovery — Gaudio et al
"Convergence among models was strongest in the [Kawasaki Disease] vs. MIS-C and TB cohorts and weakest in ME/CFS, a condition with limited mechanistic consensus and comparatively sparse literature."
Article | Thread
Long Covid research
Single-cell profiling of innate and adaptive immune dysregulation in Long COVID — Satpathy et al
"Collectively, cellular communication analysis highlighted a reprogrammed immune signaling network in Long COVID, defined by selective crosstalk among monocytes, B cells, and NK cells." "higher NK cell abundance correlated with less symptom burden among Long COVID patients."
Preprint | Thread
Persistent Cerebral 18-FDG PET Changes in Patients With Long COVID Presenting With Fatigue and Post Exertional Malaise — Ganesh et al
"The predominance of cerebral hypometabolism in patients with PEM draws important corollaries to similar changes seen in patients with FM and ME/CFS in prior neuroimaging studies."
Article | Thread
Immunothrombosis in hospitalized COVID-19 patients identified by multiomics profiling and linked to postacute complications — Ansone et al
Prospective, longitudinal study of hospitalised patients from admission to 3 months. "patients who developed long COVID exhibited a distinct blood transcriptional signature at three months consistent with an endothelial-associated activation profile, including platelet reactivity, complement dysregulation, and low-grade vascular inflammation, distinguishing them from fully recovered individuals."
Article | Thread
Clinical Utility of SARS-CoV-2 Antibody Titers in the Management of Patients With Long COVID Infected With the Omicron Variant — Kawaguchi et al
"S-antibody titers were not significantly associated with most long COVID symptoms, including fatigue, headache, insomnia, dizziness, dyspnea, dysosmia, and dysgeusia. However, higher S-antibody levels were associated with a lower likelihood of memory disturbance even after multivariable adjustment."
Article | Thread
Transcutaneous Auricular Vagus Nerve Stimulation for Post-COVID-19 Condition: A Systematic Review and Critical Appraisal of Clinical Evidence — Balan et al
"The central finding is that three of five studies (60%) exhibited high overall risk of bias, positive findings were confined exclusively to inadequately blinded or uncontrolled studies, and the two studies with adequate or near-adequate blinding showed null or paradoxically negative results."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky