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
Week beginning 15th June 2026
News, advocacy and articles
WE&ME Projects: Funding innovative ME/CFS research worldwide in collaboration with Science for ME
The WE&ME Foundation has launched a new call for ME/CFS research in collaboration with the Science for ME forum. They aim to fund 7 projects, each with a budget of €120,000 - 180,000. Researchers from all over the world can apply, the deadline for the first stage is 25 August 2026.
Website | Thread
WE&ME - Austria
The WE&ME press conference for the petition supporting the PAIS Action Plan by the Österreichische Gesellschaft für MECFS brought together patients, experts, advocates, and four former Austrian health ministers, all calling for its implementation.
Website | Article (German) | Thread
The Sick Times The U.K.’s plan for ME has failed us. Members of parliament must step up.
An excellent article by writer Nick Benton who has severe ME/CFS.
"No ring-fenced research funding. No care pathway for the very severe. Hospitalized patients still at risk of malnutrition. What has the delivery plan really changed for people with myalgic encephalomyelitis in the United Kingdom?"
Article | Thread
Science Illustrated People with chronic fatigue have been misunderstood for decades: reputable researcher offers surprising advice to those struggling with the illness
Interview with Chris Ponting on his research into genetic mechanisms underlying ME and the importance of rest.
Article l Thread
UK ME Association New downloadable booklet for Carers!
"The ME Association and the 25% ME Group have worked together to create this new guide for carers, especially carers of people with Severe and Very Severe ME." The information is intended for unpaid family carers with advice and UK specific information on support services.
Article | Thread
Trial by Error by David Tuller The "Wired" Account of Cancelled Exercise Study for Long Covid at University of Virginia
A further look into aspects of a highly criticised article in Wired on mind-body interventions for Long Covid.
Article l Thread
USA - #MEAction Frail and Furious: 10 Things You Need to Know About New Changes to the Medicaid Program
An update on recent changes to the Medicaid program and actions that US residences can take to help.
Article | Thread
USA - #MEAction Millions Missing 2026 Community Meeting
A recording of their June 14 community meeting is now available. Includes updates on work to secure funding for the NIH ME/CFS Research Roadmap, their Frail and Furious campaign, and their Emergency Department project.
Video | Thread
.........
Coming events
Bateman Horne Center Free Online Support Group
Tuesday, July 7, 1 - 2 pm MDT
Topic: Navigating Work Loss and Financial Stress
Advance registration required, registration link shows time in your time zone.
Registration | Thread
Solve ME webinar Repurposing Rapamycin: A Report On the First Biomarker-Driven Treatment Trial for ME/CFS
Tuesday, July 14, 3 - 4 pm PT / 6-7 pm ET
Panelists will discuss the latest learnings from the study and their plan to conduct an NIH exploratory treatment trial based on the data.
Registration | Thread
PRIME International Symposium a two-day hybrid event exploring the latest developments in ME/CFS research.
9 am on 28 September to 2 pm on 29 September at the John McIntyre Conference Centre in Edinburgh, with online attendance also available.
"The PRIME Symposium will see the launch of the new International Genetic Epidemiology of ME/CFS Consortium, as well as provide a platform for Early Career Researchers and the Patient and Public Involvement Research Involvement Hub to present exciting new research and supporting activities."
Article | Preliminary programme | Registration | Thread
.........
Research news and commentary
Germany
The ME/CFS Research Foundation has written an article on the current status of the National Decade against Post-infectious Diseases in Germany. One of the first measures was the creation of a steering committee involving not only experts from the university but also patient representatives.
Article | Thread
Berlin conference
The first videos of talks from the 2026 Berlin conference are now online on the website of the ME/CFS Research Foundation. More will be added gradually throughout June. S4ME members have made summaries of several presentations.
Videos | Thread
UK ME Research UK Founders' Science Writing Award 2026 - “Heterogeneity in ME/CFS research populations – challenges faced, lessons learned, and next steps”
"The competition aims to give early career researchers the opportunity to develop skills in communicating science in a way that is accessible and engaging to the public"
Closing date 13th July 2026 at 5 pm BST, maximum 1000 words, first prize £500
Details | Thread
..........
Research
ME/CFS research
Systems neuroendocrinology in ME/CFS and long COVID: a chronobiological framework for hormone-based research — Thomas et al
"ME/CFS and Long COVID are complex, fluctuating illnesses in which neuroendocrine findings remain inconsistent when examined through isolated, static hormone measurements." "A systems endocrinology framework shifts the focus from single hormone concentrations to the timing, coordination, receptor sensitivity, and tissue-level effects of hormonal signalling."
Article | Thread
Higher-order brain processes, rather than early processing, underlie sensory problems in ME/CFS: evidence from ERPs — Kumar et al
"we asked if the early bottom-up sensory gating, which prevents information overload by suppressing trivial and repetitive sensory information (P50, N100), and/or later cognitive control top-down processes (N200, P300) that regulate sensory processing, may be affected in ME/CFS."
Article | Thread
Disrupted Glymphatic Function and Its Relationship with Sleep and Cognitive Impairment in ME/CFS Assessed via DTI-ALPS — Thapaliya et al
"we found that only the right hemisphere DTI-ALPS index was significantly lower in ME/CFS compared to healthy controls, with no differences observed in the left hemisphere."
Article | Thread
Gastrointestinal symptoms correlate with core clinical features and systemic inflammation in myalgic encephalomyelitis/chronic fatigue syndrome — Brown et al
"Plasma CRP levels were significantly higher in ME/CFS patients with increased GI symptom frequency (combined GI frequency score >10) (P = 0.002)."
Article | Thread
Development and initial content validation of the Vienna Post-Exertional Malaise Questionnaire: an iterative mixed-methods study — Pimminger et al
"Although PEM is often described in clinical criteria as a cardinal symptom of ME/CFS, the feedback obtained in this study suggested that a multidimensional questionnaire approach would be more appropriate than relying on a single symptom item. Rather, PEM represents a dynamic post-exertional deterioration pattern characterised by disproportionate exacerbation of symptoms, functional decline, delayed onset in many cases and impaired or incomplete recovery."
Preprint | Thread
ME/CFS and/or Long Covid in Aotearoa New Zealand: results from a food insecurity survey — Dey et al
"This work supports the need for ME/CFS and LC to be identified as a disability for the purposes of social service and income support provision, which is currently not the case in Aotearoa | New Zealand."
Article | Thread
Long Covid research
Immunoadsorption Versus Sham Treatment for Post-COVID Syndrome: A Randomised Sham-Controlled Crossover Trial — Stortz et al
"No clinically relevant difference was found between IA and sham treatment for changes in either post-COVID symptom severity related to PCFS or the severity of fatigue based on MFI-20, CFS and Bell Scale"
Article | Thread
Persistent Muscle Dysfunction and Symptom Burden in Post-COVID Syndrome: A Prospective Longitudinal Study — Wunderle et al
"patients exhibited significantly lower Fmean, elevated muscular fatigability (Fatigue Ratio), and reduced recovery capacity compared with matched COVID-19 recovered controls at both [Baseline] and [Followup]." "objective muscle impairments remained largely stable over the six-month observation period"
Preprint | Thread
Muscle fatigue in patients with severe long COVID: A 2-year follow-up study — Almeida et al
Follow-up of hospitalised patients. "The dissociation between preserved gross morphology and microscopic pathology suggests that advanced imaging and biopsy techniques may be necessary to fully characterize muscle changes in patients with long COVID, though this was beyond the scope of the present study."
Article | Thread
Identifying electroencephalography (EEG)-based biomarkers of Long COVID — Sánchez
"Following the [Motor Learning] task, Long COVID individuals exhibited a smaller increase in global efficiency and a larger decrease in participation coefficient relative to healthy controls." "This suggests that the brain's ability to reorganize its network in response to cognitive demands may be a sensitive marker of Long COVID-related fatigue and cognitive impairment."
Thesis | Thread
Genetic association between LONG COVID and TMPRSS2 polymorphisms (rs12329760 and rs2070788) in Brazilian healthcare professionals — Telles et al
"carriers of the G allele in this model have an odds ratio of 1.73 times more likely to experience memory and concentration problems." "This result supports the relationship between this polymorphism and the severity of COVID-19 in the acute phase"
Article | Thread
Long COVID risk by pre-infection symptoms and functional status: A retrospective cohort study of data from the All of Us Research Program — Kehl-Floberg et al
"there were no significant differences in risk of long COVID based on either pre-infection total incidences of long COVID symptoms (compared to the average of 4) or pre-infection functional impairment." "This suggests that long COVID was associated with a change from baseline functioning and health, including in people with pre-infection incident symptoms and functional impairments."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
WE&ME Projects: Funding innovative ME/CFS research worldwide in collaboration with Science for ME
The WE&ME Foundation has launched a new call for ME/CFS research in collaboration with the Science for ME forum. They aim to fund 7 projects, each with a budget of €120,000 - 180,000. Researchers from all over the world can apply, the deadline for the first stage is 25 August 2026.
Website | Thread
WE&ME - Austria
The WE&ME press conference for the petition supporting the PAIS Action Plan by the Österreichische Gesellschaft für MECFS brought together patients, experts, advocates, and four former Austrian health ministers, all calling for its implementation.
Website | Article (German) | Thread
The Sick Times The U.K.’s plan for ME has failed us. Members of parliament must step up.
An excellent article by writer Nick Benton who has severe ME/CFS.
"No ring-fenced research funding. No care pathway for the very severe. Hospitalized patients still at risk of malnutrition. What has the delivery plan really changed for people with myalgic encephalomyelitis in the United Kingdom?"
Article | Thread
Science Illustrated People with chronic fatigue have been misunderstood for decades: reputable researcher offers surprising advice to those struggling with the illness
Interview with Chris Ponting on his research into genetic mechanisms underlying ME and the importance of rest.
Article l Thread
UK ME Association New downloadable booklet for Carers!
"The ME Association and the 25% ME Group have worked together to create this new guide for carers, especially carers of people with Severe and Very Severe ME." The information is intended for unpaid family carers with advice and UK specific information on support services.
Article | Thread
Trial by Error by David Tuller The "Wired" Account of Cancelled Exercise Study for Long Covid at University of Virginia
A further look into aspects of a highly criticised article in Wired on mind-body interventions for Long Covid.
Article l Thread
USA - #MEAction Frail and Furious: 10 Things You Need to Know About New Changes to the Medicaid Program
An update on recent changes to the Medicaid program and actions that US residences can take to help.
Article | Thread
USA - #MEAction Millions Missing 2026 Community Meeting
A recording of their June 14 community meeting is now available. Includes updates on work to secure funding for the NIH ME/CFS Research Roadmap, their Frail and Furious campaign, and their Emergency Department project.
Video | Thread
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Coming events
Bateman Horne Center Free Online Support Group
Tuesday, July 7, 1 - 2 pm MDT
Topic: Navigating Work Loss and Financial Stress
Advance registration required, registration link shows time in your time zone.
Registration | Thread
Solve ME webinar Repurposing Rapamycin: A Report On the First Biomarker-Driven Treatment Trial for ME/CFS
Tuesday, July 14, 3 - 4 pm PT / 6-7 pm ET
Panelists will discuss the latest learnings from the study and their plan to conduct an NIH exploratory treatment trial based on the data.
Registration | Thread
PRIME International Symposium a two-day hybrid event exploring the latest developments in ME/CFS research.
9 am on 28 September to 2 pm on 29 September at the John McIntyre Conference Centre in Edinburgh, with online attendance also available.
"The PRIME Symposium will see the launch of the new International Genetic Epidemiology of ME/CFS Consortium, as well as provide a platform for Early Career Researchers and the Patient and Public Involvement Research Involvement Hub to present exciting new research and supporting activities."
Article | Preliminary programme | Registration | Thread
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Research news and commentary
Germany
The ME/CFS Research Foundation has written an article on the current status of the National Decade against Post-infectious Diseases in Germany. One of the first measures was the creation of a steering committee involving not only experts from the university but also patient representatives.
Article | Thread
Berlin conference
The first videos of talks from the 2026 Berlin conference are now online on the website of the ME/CFS Research Foundation. More will be added gradually throughout June. S4ME members have made summaries of several presentations.
Videos | Thread
UK ME Research UK Founders' Science Writing Award 2026 - “Heterogeneity in ME/CFS research populations – challenges faced, lessons learned, and next steps”
"The competition aims to give early career researchers the opportunity to develop skills in communicating science in a way that is accessible and engaging to the public"
Closing date 13th July 2026 at 5 pm BST, maximum 1000 words, first prize £500
Details | Thread
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Research
ME/CFS research
Systems neuroendocrinology in ME/CFS and long COVID: a chronobiological framework for hormone-based research — Thomas et al
"ME/CFS and Long COVID are complex, fluctuating illnesses in which neuroendocrine findings remain inconsistent when examined through isolated, static hormone measurements." "A systems endocrinology framework shifts the focus from single hormone concentrations to the timing, coordination, receptor sensitivity, and tissue-level effects of hormonal signalling."
Article | Thread
Higher-order brain processes, rather than early processing, underlie sensory problems in ME/CFS: evidence from ERPs — Kumar et al
"we asked if the early bottom-up sensory gating, which prevents information overload by suppressing trivial and repetitive sensory information (P50, N100), and/or later cognitive control top-down processes (N200, P300) that regulate sensory processing, may be affected in ME/CFS."
Article | Thread
Disrupted Glymphatic Function and Its Relationship with Sleep and Cognitive Impairment in ME/CFS Assessed via DTI-ALPS — Thapaliya et al
"we found that only the right hemisphere DTI-ALPS index was significantly lower in ME/CFS compared to healthy controls, with no differences observed in the left hemisphere."
Article | Thread
Gastrointestinal symptoms correlate with core clinical features and systemic inflammation in myalgic encephalomyelitis/chronic fatigue syndrome — Brown et al
"Plasma CRP levels were significantly higher in ME/CFS patients with increased GI symptom frequency (combined GI frequency score >10) (P = 0.002)."
Article | Thread
Development and initial content validation of the Vienna Post-Exertional Malaise Questionnaire: an iterative mixed-methods study — Pimminger et al
"Although PEM is often described in clinical criteria as a cardinal symptom of ME/CFS, the feedback obtained in this study suggested that a multidimensional questionnaire approach would be more appropriate than relying on a single symptom item. Rather, PEM represents a dynamic post-exertional deterioration pattern characterised by disproportionate exacerbation of symptoms, functional decline, delayed onset in many cases and impaired or incomplete recovery."
Preprint | Thread
ME/CFS and/or Long Covid in Aotearoa New Zealand: results from a food insecurity survey — Dey et al
"This work supports the need for ME/CFS and LC to be identified as a disability for the purposes of social service and income support provision, which is currently not the case in Aotearoa | New Zealand."
Article | Thread
Long Covid research
Immunoadsorption Versus Sham Treatment for Post-COVID Syndrome: A Randomised Sham-Controlled Crossover Trial — Stortz et al
"No clinically relevant difference was found between IA and sham treatment for changes in either post-COVID symptom severity related to PCFS or the severity of fatigue based on MFI-20, CFS and Bell Scale"
Article | Thread
Persistent Muscle Dysfunction and Symptom Burden in Post-COVID Syndrome: A Prospective Longitudinal Study — Wunderle et al
"patients exhibited significantly lower Fmean, elevated muscular fatigability (Fatigue Ratio), and reduced recovery capacity compared with matched COVID-19 recovered controls at both [Baseline] and [Followup]." "objective muscle impairments remained largely stable over the six-month observation period"
Preprint | Thread
Muscle fatigue in patients with severe long COVID: A 2-year follow-up study — Almeida et al
Follow-up of hospitalised patients. "The dissociation between preserved gross morphology and microscopic pathology suggests that advanced imaging and biopsy techniques may be necessary to fully characterize muscle changes in patients with long COVID, though this was beyond the scope of the present study."
Article | Thread
Identifying electroencephalography (EEG)-based biomarkers of Long COVID — Sánchez
"Following the [Motor Learning] task, Long COVID individuals exhibited a smaller increase in global efficiency and a larger decrease in participation coefficient relative to healthy controls." "This suggests that the brain's ability to reorganize its network in response to cognitive demands may be a sensitive marker of Long COVID-related fatigue and cognitive impairment."
Thesis | Thread
Genetic association between LONG COVID and TMPRSS2 polymorphisms (rs12329760 and rs2070788) in Brazilian healthcare professionals — Telles et al
"carriers of the G allele in this model have an odds ratio of 1.73 times more likely to experience memory and concentration problems." "This result supports the relationship between this polymorphism and the severity of COVID-19 in the acute phase"
Article | Thread
Long COVID risk by pre-infection symptoms and functional status: A retrospective cohort study of data from the All of Us Research Program — Kehl-Floberg et al
"there were no significant differences in risk of long COVID based on either pre-infection total incidences of long COVID symptoms (compared to the average of 4) or pre-infection functional impairment." "This suggests that long COVID was associated with a change from baseline functioning and health, including in people with pre-infection incident symptoms and functional impairments."
Article | Thread
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