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