News in Brief - August 2026
- Thread starter S4ME News
- Start date
Week beginning 3rd August 2026
News, advocacy and articles
UK Action for ME “The more ill you become, the less care you receive” - Severe ME Inquiry Report
"A major new report from Action for ME and the 25% ME Group exposes the devastating reality facing people with severe and very severe ME, revealing systemic failures in health and social care and calling for urgent action from Government, the NHS and public services."
Article | Report | Thread
A Life Hidden The Burden of Chronic Illness That I Rarely Talk About
Naomi Whittingham writes beautifully and insightfully on the harsh existence of chronic illness:
"Those who see me at my laughing, smiling best could never imagine the delicate balancing act behind every moment. The impossible decisions over what is too much or not enough; the silent background calculations as to how close I might be to collapse. There is always sacrifice: always a demand from past or future that necessitates a scaling back in the present."
Article l Thread
Long COVID The Answers Biological evidence for Long COVID, post-exertional malaise (Part I)
Dr Funmi Okunola interviews Professor Rob Wüst & Professor Mark Faghy about their work. Duration: 33 minutes. Part one of a two part podcast special.
Video l Thread
Petition to pause the McMaster's Lightning Process (FALCON) trial "until an independent scientific, ethical, and patient-led review has addressed serious concerns regarding the study's design, transparency, participant protections, conflicts of interest, commercial relationships, and use of objective outcome measures."
Petition l Thread
#MEAction Honoring Severe ME Day & Sharing our Severe ME Artists Project 2026
The Severe ME Artists Project for 2026 has been posted on the #MEAction website.
Article | Gallery | Thread
ME Global Chronicle Filmmaker Rolf Orthel: The price of independence, the burden of ME
"To mark Severe ME Day 2026, the Dutch ME-info channel ME Centraal asked several national and international bloggers to contribute a piece in honor of the day. Dutch blogger Anil van der Zee responded and offered them this poignant account of what might have been."
Article | Thread
.........
Coming events
Bateman Horne Center "Coffee" with a Clinician
Wednesday, August 12, 10 am MDT (9 am PT / 11 am CT / 12 pm ET)
Topic: Severe ME/CFS
"Presented in collaboration with Solve ME/CFS, Open Medicine Foundation, #MEAction, and writers of the What is Myalgic Encephalomyelitis like? book in recognition of Severe ME/CFS Awareness Month."
Free to attend, optional $5 donation.
Registration | Thread
PAIS conference Amsterdam 26 - 29 August.
Speakers include Danny Altmann, Eva Untermayr, Carmen Scheibenbogen, Rob Wüst and Mark Faghy.
Website l Thread
Solve ME Webinar A Safe, Accessible Treatment for ME/CFS? The Mitochondrial Stabilizer IVO-21 Study
Tuesday, September 8, 3:00 pm - 4:00 pm PDT
Dr. Jay H. Chung from the NIH (National Institutes of Health) will discuss his research.
Announcement | Registration | Thread
..........
Research news and commentary
UK DecodeME One year after the preprint publication further data analysis is delayed by the UK Biobank temporary shutdown following a data breach. Prof Chris Ponting reports on Bluesky that they now expect to provide and update on the research in 2027.
The team continue to work on SequenceME, sequencing the whole genomes of 6000 people with ME/CFS.
Bluesky | Fundraising | Action for ME | Thread
USA - NIH New curriculum empowers future healthcare providers to recognize and treat Long COVID
A new online curriculum provides free Long COVID education for healthcare providers.
Article | Thread
USA - NIH RECOVER launches new funding opportunity for pathobiology research
"For the first time, researchers can apply for funding to use RECOVER clinical trials data and biosamples to uncover the biological mechanisms of Long COVID."
Article | Full Announcement | Thread
UK Invest in ME Conference 2026 The first 5 videos from the conference are now available on YouTube. They include talks on clinical trials and wearable data.
Videos | Thread
..........
Research
ME/CFS research
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) gene expression signatures for the identification of compounds targeting metabolism — Dehlia et al
"analysis identified networks involved in cytokine/growth factor signalling, infection and immunity, metabolism and cell growth, lipid metabolism, ubiquitination, nucleotide metabolism, and redox regulation."
Preprint | Thread
Cerebrospinal fluid opening pressure in relation to symptomatology and craniocervical anatomy in patients with myalgic encephalomyelitis/chronic fatigue syndrome — Jolley et al
"based on our radiological examinations, we could not identify any specific deviation in craniocervical anatomy that explained alterations in [opening pressure] among our individuals."
Article | Thread
Long Covid research
Virus reactivation in acute and long COVID-19 — Maguire et al
Nature. "Notably, our results raise the possibility that viral reactivation may contribute to the development of severe acute COVID-19 and long COVID." "Our data highlight the need for future research to dissect the role of Anelloviridae in patients with long COVID."
Article | Thread
Haptoglobin Phenotypes Stratify Post-Exertional Cognitive Dysfunction Associated with Altered Cerebral Oxygenation and Metabolic Signatures in Long COVID — Moezzi et al
"BrainCheck analysis demonstrated a significant reduction in total BrainCheck scores following the post-exertional challenge in patients with the Hp2-2 phenotype."
Article | Thread
The Mammillary Body-Fornix Gate in Long COVID An exploratory structural and diffusion MRI study of tremor-like symptoms, internal vibrations, and neuromuscular fatigue — Ziaja et al
"This exploratory study identified a pattern of structural and diffusion abnormalities centred on the mammillary body-fornix-superior tuberal hypothalamic interface, with additional abnormalities in brainstem and cerebellar pathways." "The imaging findings do not provide a diagnostic biomarker at present, but they identify candidate regions for prospective validation."
Preprint | Thread
Subclinical neurovascular and immune correlates of post-COVID-19 syndrome detected by retinal imaging — Wunderle et al
"OCT-based structural parameters such as pRNFL, GCIP, and TMV were significantly reduced in PCS patients and showed associations with validated symptom scores." "the absence of OCTA abnormalities […] suggests that retinal blood flow at rest may be preserved"
Article | Thread
Minimum important difference for the incremental shuttle walk test in long covid rehabilitation — Baldwin et al
"an MID of 60.7 m corresponded to participants reporting a ‘slight improvement’." "Based on our findings, we propose an MID range of 35–60.7 m."
Article | Thread
Night work, sleep disruption and long-COVID risk: a population-based cohort study — K et al
"Among participants with a SARS-CoV-2 infection, working night shifts at baseline was associated with higher risk of developing long-COVID (RR 1.88; 95% CI 1.29–2.72) compared to day work, after adjusting for potential confounders."
Article | Thread
The use of patient-reported outcome questionnaires in patients with post-COVID-19 condition: a systematic review and meta-analysis — Khawandi et al
"The overall certainty of the evidence was low due to the high risk of bias, indirectness, and imprecision."
Article | Thread
VSL#3® supplementation improves fatigue in long COVID: results from the DELong#3 randomized placebo-controlled trial — Amoroso et al
"the change in [Chalder Fatigue Scale] score was greater in the VSL#3® group compared to placebo"
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
UK Action for ME “The more ill you become, the less care you receive” - Severe ME Inquiry Report
"A major new report from Action for ME and the 25% ME Group exposes the devastating reality facing people with severe and very severe ME, revealing systemic failures in health and social care and calling for urgent action from Government, the NHS and public services."
Article | Report | Thread
A Life Hidden The Burden of Chronic Illness That I Rarely Talk About
Naomi Whittingham writes beautifully and insightfully on the harsh existence of chronic illness:
"Those who see me at my laughing, smiling best could never imagine the delicate balancing act behind every moment. The impossible decisions over what is too much or not enough; the silent background calculations as to how close I might be to collapse. There is always sacrifice: always a demand from past or future that necessitates a scaling back in the present."
Article l Thread
Long COVID The Answers Biological evidence for Long COVID, post-exertional malaise (Part I)
Dr Funmi Okunola interviews Professor Rob Wüst & Professor Mark Faghy about their work. Duration: 33 minutes. Part one of a two part podcast special.
Video l Thread
Petition to pause the McMaster's Lightning Process (FALCON) trial "until an independent scientific, ethical, and patient-led review has addressed serious concerns regarding the study's design, transparency, participant protections, conflicts of interest, commercial relationships, and use of objective outcome measures."
Petition l Thread
#MEAction Honoring Severe ME Day & Sharing our Severe ME Artists Project 2026
The Severe ME Artists Project for 2026 has been posted on the #MEAction website.
Article | Gallery | Thread
ME Global Chronicle Filmmaker Rolf Orthel: The price of independence, the burden of ME
"To mark Severe ME Day 2026, the Dutch ME-info channel ME Centraal asked several national and international bloggers to contribute a piece in honor of the day. Dutch blogger Anil van der Zee responded and offered them this poignant account of what might have been."
Article | Thread
.........
Coming events
Bateman Horne Center "Coffee" with a Clinician
Wednesday, August 12, 10 am MDT (9 am PT / 11 am CT / 12 pm ET)
Topic: Severe ME/CFS
"Presented in collaboration with Solve ME/CFS, Open Medicine Foundation, #MEAction, and writers of the What is Myalgic Encephalomyelitis like? book in recognition of Severe ME/CFS Awareness Month."
Free to attend, optional $5 donation.
Registration | Thread
PAIS conference Amsterdam 26 - 29 August.
Speakers include Danny Altmann, Eva Untermayr, Carmen Scheibenbogen, Rob Wüst and Mark Faghy.
Website l Thread
Solve ME Webinar A Safe, Accessible Treatment for ME/CFS? The Mitochondrial Stabilizer IVO-21 Study
Tuesday, September 8, 3:00 pm - 4:00 pm PDT
Dr. Jay H. Chung from the NIH (National Institutes of Health) will discuss his research.
Announcement | Registration | Thread
..........
Research news and commentary
UK DecodeME One year after the preprint publication further data analysis is delayed by the UK Biobank temporary shutdown following a data breach. Prof Chris Ponting reports on Bluesky that they now expect to provide and update on the research in 2027.
The team continue to work on SequenceME, sequencing the whole genomes of 6000 people with ME/CFS.
Bluesky | Fundraising | Action for ME | Thread
USA - NIH New curriculum empowers future healthcare providers to recognize and treat Long COVID
A new online curriculum provides free Long COVID education for healthcare providers.
Article | Thread
USA - NIH RECOVER launches new funding opportunity for pathobiology research
"For the first time, researchers can apply for funding to use RECOVER clinical trials data and biosamples to uncover the biological mechanisms of Long COVID."
Article | Full Announcement | Thread
UK Invest in ME Conference 2026 The first 5 videos from the conference are now available on YouTube. They include talks on clinical trials and wearable data.
Videos | Thread
..........
Research
ME/CFS research
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) gene expression signatures for the identification of compounds targeting metabolism — Dehlia et al
"analysis identified networks involved in cytokine/growth factor signalling, infection and immunity, metabolism and cell growth, lipid metabolism, ubiquitination, nucleotide metabolism, and redox regulation."
Preprint | Thread
Cerebrospinal fluid opening pressure in relation to symptomatology and craniocervical anatomy in patients with myalgic encephalomyelitis/chronic fatigue syndrome — Jolley et al
"based on our radiological examinations, we could not identify any specific deviation in craniocervical anatomy that explained alterations in [opening pressure] among our individuals."
Article | Thread
Long Covid research
Virus reactivation in acute and long COVID-19 — Maguire et al
Nature. "Notably, our results raise the possibility that viral reactivation may contribute to the development of severe acute COVID-19 and long COVID." "Our data highlight the need for future research to dissect the role of Anelloviridae in patients with long COVID."
Article | Thread
Haptoglobin Phenotypes Stratify Post-Exertional Cognitive Dysfunction Associated with Altered Cerebral Oxygenation and Metabolic Signatures in Long COVID — Moezzi et al
"BrainCheck analysis demonstrated a significant reduction in total BrainCheck scores following the post-exertional challenge in patients with the Hp2-2 phenotype."
Article | Thread
The Mammillary Body-Fornix Gate in Long COVID An exploratory structural and diffusion MRI study of tremor-like symptoms, internal vibrations, and neuromuscular fatigue — Ziaja et al
"This exploratory study identified a pattern of structural and diffusion abnormalities centred on the mammillary body-fornix-superior tuberal hypothalamic interface, with additional abnormalities in brainstem and cerebellar pathways." "The imaging findings do not provide a diagnostic biomarker at present, but they identify candidate regions for prospective validation."
Preprint | Thread
Subclinical neurovascular and immune correlates of post-COVID-19 syndrome detected by retinal imaging — Wunderle et al
"OCT-based structural parameters such as pRNFL, GCIP, and TMV were significantly reduced in PCS patients and showed associations with validated symptom scores." "the absence of OCTA abnormalities […] suggests that retinal blood flow at rest may be preserved"
Article | Thread
Minimum important difference for the incremental shuttle walk test in long covid rehabilitation — Baldwin et al
"an MID of 60.7 m corresponded to participants reporting a ‘slight improvement’." "Based on our findings, we propose an MID range of 35–60.7 m."
Article | Thread
Night work, sleep disruption and long-COVID risk: a population-based cohort study — K et al
"Among participants with a SARS-CoV-2 infection, working night shifts at baseline was associated with higher risk of developing long-COVID (RR 1.88; 95% CI 1.29–2.72) compared to day work, after adjusting for potential confounders."
Article | Thread
The use of patient-reported outcome questionnaires in patients with post-COVID-19 condition: a systematic review and meta-analysis — Khawandi et al
"The overall certainty of the evidence was low due to the high risk of bias, indirectness, and imprecision."
Article | Thread
VSL#3® supplementation improves fatigue in long COVID: results from the DELong#3 randomized placebo-controlled trial — Amoroso et al
"the change in [Chalder Fatigue Scale] score was greater in the VSL#3® group compared to placebo"
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 10th August 2026
News, advocacy and articles
Science for ME Fact Sheet 4: Management of severe and very severe ME/CFS
by Jonathan CW Edwards, Professor in Connective Tissue Medicine, University College London and members of the Science for ME Forum
Includes recommendations for annual medical assessment by specialist physician; home based care by a specialist nurse as the clinical point of contact, liaising directly with the same physician; preventing deterioration; and nutritional support.
Fact sheet thread
UK Wales Petition Take urgent action so those with Severe Myalgic Encephalomyelitis in Wales are no longer left without vital medical care
"We urge the government to implement both immediate and long-term support for those in desperate need." Co-produced by: SMEDC, WAMES, AfME, LC Support.
Demands include appointment of clinical leads and development of a delivery plan.
Petition | Thread
Trial by Error by David Tuller CFS "Recovery" Findings Might Be "Suppressed," Says Report
A critical analysis of a recent publication on "CFS and/or Related Illnesses" recovery stories.
Tuller writes: "The Recovery Report is saying, in essence, 'Hey, these recovery narratives prove people can heal themselves if they do x, y and z.' That logic doesn’t wash, given that many, many people—millions?—have done x, y and z and remain sick."
Article l Thread
ME/CFS Research Review On BPS & disease causation: George Davey Smith's cautionary tale - by professor Chris Ponting
"A guide to the Biopsychosocial model recently put out by Long Covid Advocacy ultimately brought me to a 2005 book chapter, written by Professor George Davey Smith, entitled The biopsychosocial approach: a note of caution in Biopsychosocial Medicine: An Integrated Approach to Understanding Illness ..."
Article l Thread
The Sick Times VIPER aims to fast track Long COVID biomarkers. Here's how it works - by David Tuller
On the recently launched VIPER program and how it will work to coordinate and accelerate the search for a biomarker. VIPER = Viral Immunopathogenesis and Persistence Repeat Donor Cohort.
Article l Thread
The Economics of Survival by Fred Rossi Twelve Percent
Subtitle: "A year with Breath of the Wild, and what it actually costs to play a video game" A beautifully written article on the constant adjustments required by living with severe illness.
Article l Thread
France
The French social security website Ameli has updated its guideline on ME/CFS. It now gives a more accurate description of post-exertional malaise and the impact of the illness. It also adds critical remarks regarding CBT, stating, "It is wrong to assume that the illness is the result of the affected person's thoughts or behaviors."
Website | Article | Thread
........
Coming events
Bateman Horne Center Free Online Support Group
Tuesday, September 1, 1 - 2 pm MDT
Topic: Emotional Freedom While Experiencing Illness – Avoiding Thinking Traps that Make Us Suffer
Advance registration required, registration link shows time in your time zone.
Registration | Thread
NIH webinar From Mechanisms to Medicine: Rethinking the Discovery-to-Care Continuum in Multi-System Disorders
September 23-24, in person and virtual
Announcement | Registration | Thread
........
Research news and commentary
WE&ME Emerging Leader Award
The WE&ME Foundation has created this award to recognise outstanding early-career researchers in the field of ME/CFS and related post-infectious diseases. Applications have to be nominated by someone else. The budget is 5000 euros; the deadline 15th October 2026.
Article | Thread
........
Research
ME/CFS research
Experimental hypoxia to probe neuro-metabolic and vascular dysregulation in ME/CFS: a multimodal proof-of-concept MRI study — Bader et al
"These preliminary findings inform us on a potential bioenergetic / “virtual hypoxia” component in the pathogenesis of ME/CFS and warrant validation as metrics for patient stratification and treatment monitoring."
Preprint | Thread
ME/CFS and the emotional toll of persistent disbelief: from epistemic to affective injustice — Walter
"Improving care for people with ME/CFS requires more than better diagnostics and treatment: clinicians and institutions must also recognize that anger, grief, fear, mistrust, or exhaustion may be fitting responses to illness and prolonged disbelief rather than signs of poor coping or therapeutic resistance."
Article | Thread
The ones progress forgot: medically unexplained conditions and the myth of recovery — Sirotiak
"This essay explores the chronic marginalization of medically unexplained chronic health conditions, using myalgic encephalomyelitis and long COVID as examples of conditions facing broad systemic medical neglect."
Article | Thread
Long Covid research
Multiomic and Spatial Profiling of Colorectal Tissue Reveals Viral Persistence and Immune Dysregulation in Long COVID — LaFranchi et al
"Overall, these findings suggest that Long COVID is defined by a tissue-based transcriptional environment in which SARS-CoV-2 activates innate myeloid immune signaling, driving chronic inflammation while leading to dysregulation of pathways responsible for immune-mediated clearance of infected cells."
Preprint | Thread
Identifying EEG biomarkers of fatigue and brain fog in long COVID: insights from rest and movement-related brain activity — Sánchez et al
"findings highlight disrupted inhibitory processes and an imbalance between excitation and inhibition, likely involving thalamocortical and basal ganglia circuits."
Article | Thread
Peripheral metabolic signatures in patients with neuropsychiatric long COVID syndrome — Bergmann et al
"We revealed subtle, but biologically coherent alterations, with increases in tri- and diacylglycerides as compared to healthy survivors and a decrease in several acylcarnitines, including acetylcarnitine."
Preprint | Thread
Postural control and trunk mobility impairments in adults with long COVID: A cross-sectional study using computerized posturography and clinical biomechanical tools — Alshahrani et al
"analysis showed significant deficits in static balance performance" "balance issues were also linked to reduced trunk range of motion and decreased isometric trunk muscle strength"
Article | Thread
Healthcare utilisation and cost among individuals with Long COVID in England and Wales: potential value of specialised post-COVID services — Dashtban et al
"This robust health economic evaluation confirms LC costs exceed pre-pandemic and contemporary benchmarks in both absolute and relative terms, providing – for the first time – direct quantitative comparisons between England and Wales."
Article | Thread
Impact of immunoadsorption on autoantibodies and physical performance in post-COVID patients: a prospective exploratory study of 18 participants — Wossidlo et al
"Objective determinations of physical performance showed no significant improvement following immunoadsorption." "Self-reported evaluation revealed a slight improvement in pain and fatigue."
Article | Thread
Additional effects of group training and online exercise to a 12-week online pacing and education module on health-related quality of life in adult patients with post COVID-19: a randomized controlled trial — Gartemann and Luedtke
"No sustained effect was observed at follow-up [18 weeks]"
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
Science for ME Fact Sheet 4: Management of severe and very severe ME/CFS
by Jonathan CW Edwards, Professor in Connective Tissue Medicine, University College London and members of the Science for ME Forum
Includes recommendations for annual medical assessment by specialist physician; home based care by a specialist nurse as the clinical point of contact, liaising directly with the same physician; preventing deterioration; and nutritional support.
Fact sheet thread
UK Wales Petition Take urgent action so those with Severe Myalgic Encephalomyelitis in Wales are no longer left without vital medical care
"We urge the government to implement both immediate and long-term support for those in desperate need." Co-produced by: SMEDC, WAMES, AfME, LC Support.
Demands include appointment of clinical leads and development of a delivery plan.
Petition | Thread
Trial by Error by David Tuller CFS "Recovery" Findings Might Be "Suppressed," Says Report
A critical analysis of a recent publication on "CFS and/or Related Illnesses" recovery stories.
Tuller writes: "The Recovery Report is saying, in essence, 'Hey, these recovery narratives prove people can heal themselves if they do x, y and z.' That logic doesn’t wash, given that many, many people—millions?—have done x, y and z and remain sick."
Article l Thread
ME/CFS Research Review On BPS & disease causation: George Davey Smith's cautionary tale - by professor Chris Ponting
"A guide to the Biopsychosocial model recently put out by Long Covid Advocacy ultimately brought me to a 2005 book chapter, written by Professor George Davey Smith, entitled The biopsychosocial approach: a note of caution in Biopsychosocial Medicine: An Integrated Approach to Understanding Illness ..."
Article l Thread
The Sick Times VIPER aims to fast track Long COVID biomarkers. Here's how it works - by David Tuller
On the recently launched VIPER program and how it will work to coordinate and accelerate the search for a biomarker. VIPER = Viral Immunopathogenesis and Persistence Repeat Donor Cohort.
Article l Thread
The Economics of Survival by Fred Rossi Twelve Percent
Subtitle: "A year with Breath of the Wild, and what it actually costs to play a video game" A beautifully written article on the constant adjustments required by living with severe illness.
Article l Thread
France
The French social security website Ameli has updated its guideline on ME/CFS. It now gives a more accurate description of post-exertional malaise and the impact of the illness. It also adds critical remarks regarding CBT, stating, "It is wrong to assume that the illness is the result of the affected person's thoughts or behaviors."
Website | Article | Thread
........
Coming events
Bateman Horne Center Free Online Support Group
Tuesday, September 1, 1 - 2 pm MDT
Topic: Emotional Freedom While Experiencing Illness – Avoiding Thinking Traps that Make Us Suffer
Advance registration required, registration link shows time in your time zone.
Registration | Thread
NIH webinar From Mechanisms to Medicine: Rethinking the Discovery-to-Care Continuum in Multi-System Disorders
September 23-24, in person and virtual
Announcement | Registration | Thread
........
Research news and commentary
WE&ME Emerging Leader Award
The WE&ME Foundation has created this award to recognise outstanding early-career researchers in the field of ME/CFS and related post-infectious diseases. Applications have to be nominated by someone else. The budget is 5000 euros; the deadline 15th October 2026.
Article | Thread
........
Research
ME/CFS research
Experimental hypoxia to probe neuro-metabolic and vascular dysregulation in ME/CFS: a multimodal proof-of-concept MRI study — Bader et al
"These preliminary findings inform us on a potential bioenergetic / “virtual hypoxia” component in the pathogenesis of ME/CFS and warrant validation as metrics for patient stratification and treatment monitoring."
Preprint | Thread
ME/CFS and the emotional toll of persistent disbelief: from epistemic to affective injustice — Walter
"Improving care for people with ME/CFS requires more than better diagnostics and treatment: clinicians and institutions must also recognize that anger, grief, fear, mistrust, or exhaustion may be fitting responses to illness and prolonged disbelief rather than signs of poor coping or therapeutic resistance."
Article | Thread
The ones progress forgot: medically unexplained conditions and the myth of recovery — Sirotiak
"This essay explores the chronic marginalization of medically unexplained chronic health conditions, using myalgic encephalomyelitis and long COVID as examples of conditions facing broad systemic medical neglect."
Article | Thread
Long Covid research
Multiomic and Spatial Profiling of Colorectal Tissue Reveals Viral Persistence and Immune Dysregulation in Long COVID — LaFranchi et al
"Overall, these findings suggest that Long COVID is defined by a tissue-based transcriptional environment in which SARS-CoV-2 activates innate myeloid immune signaling, driving chronic inflammation while leading to dysregulation of pathways responsible for immune-mediated clearance of infected cells."
Preprint | Thread
Identifying EEG biomarkers of fatigue and brain fog in long COVID: insights from rest and movement-related brain activity — Sánchez et al
"findings highlight disrupted inhibitory processes and an imbalance between excitation and inhibition, likely involving thalamocortical and basal ganglia circuits."
Article | Thread
Peripheral metabolic signatures in patients with neuropsychiatric long COVID syndrome — Bergmann et al
"We revealed subtle, but biologically coherent alterations, with increases in tri- and diacylglycerides as compared to healthy survivors and a decrease in several acylcarnitines, including acetylcarnitine."
Preprint | Thread
Postural control and trunk mobility impairments in adults with long COVID: A cross-sectional study using computerized posturography and clinical biomechanical tools — Alshahrani et al
"analysis showed significant deficits in static balance performance" "balance issues were also linked to reduced trunk range of motion and decreased isometric trunk muscle strength"
Article | Thread
Healthcare utilisation and cost among individuals with Long COVID in England and Wales: potential value of specialised post-COVID services — Dashtban et al
"This robust health economic evaluation confirms LC costs exceed pre-pandemic and contemporary benchmarks in both absolute and relative terms, providing – for the first time – direct quantitative comparisons between England and Wales."
Article | Thread
Impact of immunoadsorption on autoantibodies and physical performance in post-COVID patients: a prospective exploratory study of 18 participants — Wossidlo et al
"Objective determinations of physical performance showed no significant improvement following immunoadsorption." "Self-reported evaluation revealed a slight improvement in pain and fatigue."
Article | Thread
Additional effects of group training and online exercise to a 12-week online pacing and education module on health-related quality of life in adult patients with post COVID-19: a randomized controlled trial — Gartemann and Luedtke
"No sustained effect was observed at follow-up [18 weeks]"
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 17th August 2026
News, advocacy and articles
Action for ME PRIME webinar on Post-exertional malaise (PEM) is now available on YouTube. It starts with an excellent presentation by Maree Candish based on the forum's PEM fact sheet. Other presentations are by Marjon Wormgoor and professors Faghy, Davenport and Hanson.
Video | Fact Sheet | Thread
WIMEL Writers When My Myalgic Encephalomyelitis Was Severe
Lisa Marie, a member of the WIMEL Writers group, shares an excerpt from her essay "When My Myalgic Encephalomyelitis Was Severe." WIMEL Writers is an international group of writers suffering from Myalgic Encephalomyelitis (ME) and/or Long COVID. They write to answer the question, "What Is Myalgic Encephalomyelitis Like?"
Video | Website | Thread
The Sick Times Congress’s 2027 budget could include new funding for Long COVID and ME
Advocates are calling on senators and representatives to include the ME/CFS Research Roadmap and new Long COVID funding in the fiscal year 2027 budget.
Article | Thread
Anil van der Zee blog Not an Advocate. Not Your Silver Lining Porn. Just Desperation.
"I’m not a patient advocate. I’m not an activist. I’m just a patient that shares out of sheer desperation as much about my disease, or rather the whole shit show circus surrounding it, so I can hopefully, one day, return to a more normal life."
Article | Thread
.........
Coming events
PAIS conference Amsterdam 26 - 29 August.
Speakers include Danny Altmann, Eva Untermayr, Carmen Scheibenbogen, Rob Wüst and Mark Faghy.
Website l Thread
UK ME Local Network First Annual General Meeting, Friday 4th September, 12.00 to 13.00.
Meeting will be held online (Zoom), all are welcome.
Thread with link to register
.........
Research news and commentary
Trial by Error by David Tuller Canada's McMaster University Launches Trial of Lightning Process for Long Covid
A critical look at several problematic aspects on this planned study of the alternative and contested method Lightning Process.
Article l Thread
ME/CFS Australia 2026 Scholarship/Grant recipients
Tara Sallows: LaTrobe University (Dr Sarah Annesley)
Wenjie Shan: University of Melbourne (Dr Chris Armstrong)
Urooj Ishrat: Griffith University (Professor Sonya Marshall-Gradisnik, Dr Natalie Eaton-Fitch, Dr Kiran Thapaliya)
Announcement | Thread
.........
Research
ME/CFS research
Microvascular remodeling and endothelial dysfunction across the post-COVID-19 spectrum: a prospective observational case-control study — Wallraven et al
"patients with PCS exhibit persistent functional and structural alterations of the retinal microvasculature, indicating ongoing endothelial and NV dysfunction." "Retinal ED is most pronounced in patients with higher symptom burden and in those fulfilling ME/CFS criteria, and is accompanied by sustained inflammatory and endothelial activation, as reflected by elevated IL-6, ICAM-1, and VCAM-1."
Article | Thread
A cardiometabolic perspective on post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID — Westermeier et al
Editorial. "One possibility is that recurrent episodes of PEM are accompanied by disruption of the coordinated physiological responses required for post-exertional adaptation." "A growing body of evidence implicates abnormalities involving endothelial function, oxygen extraction, autonomic regulation, lactate metabolism, coagulation pathways, metabolic flexibility, glucose homeostasis, and lipid metabolism"
Article | Thread
Long Covid research
EBV Reprograms B Cells in an Autoimmune-Like Fashion in Patients with COVID-19 — Chen et al
"We find EBV+ B cells provide stimulatory signals to bystander B and CD4+ T cells." "SARS-CoV-2 infected participants exhibiting elevated fractions of EBV+ B cells present, at convalescence, with dysregulated lipid profiles, increased autoantibody titers, and post-acute symptomology likely reflective of this metabolic reprogramming and cell-cell interactions."
Preprint | Thread
Persistent Mitochondrial and Endothelial Dysfunction in Non-Hospitalized Patients with Long COVID — Ono et al
"this exploratory study demonstrated that in patients with mild acute-phase COVID-19 who do not require hospitalization, serum GDF-15 and VCAM-1 levels remain persistently elevated in those with Long COVID"
Article | Thread
Behavioral and electrophysiological evidence of residual cognitive impairment in post-covid brain fog: a visual P300 study — Wilson et al
"findings provide preliminary electrophysiological evidence that COVID-19-related brain fog may be associated with lasting reductions in neural resource allocation during task-relevant stimulus processing"
Article | Thread
Immunopharmacological mechanisms underlying SARS-CoV-2 spike-induced persistent pain in mice — Almeida et al
"Peripheral exposure to the SARS-CoV-2 Spike protein induces persistent pain-like states through a TLR4-dependent neuroimmune cascade involving mononuclear phagocytes, T cells, and IFN-γ."
Article | Thread
Perivascular spaces in neuropsychiatric post-COVID syndrome — Bernal et al
"these findings point to age- and duration-related differences in [centrum semiovale] PVS burden and a potentially clinically relevant relationship between CSO PVS burden and functional impairment, particularly physical functioning."
Preprint | Thread
Circulating MicroRNA ratios as diagnostic biomarkers for long COVID with an independent validation cohort — Han et al
"We identified differentially expressed miRNAs in long COVID patients following initial mild COVID-19 disease, with hsa-miR-484, hsa-miR-3455p and hsa-miR-126-3p being implicated across multiple detection modalities." "The control design did not include time-matched post infection controls, so some differences may reflect the post infection status rather than long COVID-specific biology."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
Action for ME PRIME webinar on Post-exertional malaise (PEM) is now available on YouTube. It starts with an excellent presentation by Maree Candish based on the forum's PEM fact sheet. Other presentations are by Marjon Wormgoor and professors Faghy, Davenport and Hanson.
Video | Fact Sheet | Thread
WIMEL Writers When My Myalgic Encephalomyelitis Was Severe
Lisa Marie, a member of the WIMEL Writers group, shares an excerpt from her essay "When My Myalgic Encephalomyelitis Was Severe." WIMEL Writers is an international group of writers suffering from Myalgic Encephalomyelitis (ME) and/or Long COVID. They write to answer the question, "What Is Myalgic Encephalomyelitis Like?"
Video | Website | Thread
The Sick Times Congress’s 2027 budget could include new funding for Long COVID and ME
Advocates are calling on senators and representatives to include the ME/CFS Research Roadmap and new Long COVID funding in the fiscal year 2027 budget.
Article | Thread
Anil van der Zee blog Not an Advocate. Not Your Silver Lining Porn. Just Desperation.
"I’m not a patient advocate. I’m not an activist. I’m just a patient that shares out of sheer desperation as much about my disease, or rather the whole shit show circus surrounding it, so I can hopefully, one day, return to a more normal life."
Article | Thread
.........
Coming events
PAIS conference Amsterdam 26 - 29 August.
Speakers include Danny Altmann, Eva Untermayr, Carmen Scheibenbogen, Rob Wüst and Mark Faghy.
Website l Thread
UK ME Local Network First Annual General Meeting, Friday 4th September, 12.00 to 13.00.
Meeting will be held online (Zoom), all are welcome.
Thread with link to register
.........
Research news and commentary
Trial by Error by David Tuller Canada's McMaster University Launches Trial of Lightning Process for Long Covid
A critical look at several problematic aspects on this planned study of the alternative and contested method Lightning Process.
Article l Thread
ME/CFS Australia 2026 Scholarship/Grant recipients
Tara Sallows: LaTrobe University (Dr Sarah Annesley)
Wenjie Shan: University of Melbourne (Dr Chris Armstrong)
Urooj Ishrat: Griffith University (Professor Sonya Marshall-Gradisnik, Dr Natalie Eaton-Fitch, Dr Kiran Thapaliya)
Announcement | Thread
.........
Research
ME/CFS research
Microvascular remodeling and endothelial dysfunction across the post-COVID-19 spectrum: a prospective observational case-control study — Wallraven et al
"patients with PCS exhibit persistent functional and structural alterations of the retinal microvasculature, indicating ongoing endothelial and NV dysfunction." "Retinal ED is most pronounced in patients with higher symptom burden and in those fulfilling ME/CFS criteria, and is accompanied by sustained inflammatory and endothelial activation, as reflected by elevated IL-6, ICAM-1, and VCAM-1."
Article | Thread
A cardiometabolic perspective on post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID — Westermeier et al
Editorial. "One possibility is that recurrent episodes of PEM are accompanied by disruption of the coordinated physiological responses required for post-exertional adaptation." "A growing body of evidence implicates abnormalities involving endothelial function, oxygen extraction, autonomic regulation, lactate metabolism, coagulation pathways, metabolic flexibility, glucose homeostasis, and lipid metabolism"
Article | Thread
Long Covid research
EBV Reprograms B Cells in an Autoimmune-Like Fashion in Patients with COVID-19 — Chen et al
"We find EBV+ B cells provide stimulatory signals to bystander B and CD4+ T cells." "SARS-CoV-2 infected participants exhibiting elevated fractions of EBV+ B cells present, at convalescence, with dysregulated lipid profiles, increased autoantibody titers, and post-acute symptomology likely reflective of this metabolic reprogramming and cell-cell interactions."
Preprint | Thread
Persistent Mitochondrial and Endothelial Dysfunction in Non-Hospitalized Patients with Long COVID — Ono et al
"this exploratory study demonstrated that in patients with mild acute-phase COVID-19 who do not require hospitalization, serum GDF-15 and VCAM-1 levels remain persistently elevated in those with Long COVID"
Article | Thread
Behavioral and electrophysiological evidence of residual cognitive impairment in post-covid brain fog: a visual P300 study — Wilson et al
"findings provide preliminary electrophysiological evidence that COVID-19-related brain fog may be associated with lasting reductions in neural resource allocation during task-relevant stimulus processing"
Article | Thread
Immunopharmacological mechanisms underlying SARS-CoV-2 spike-induced persistent pain in mice — Almeida et al
"Peripheral exposure to the SARS-CoV-2 Spike protein induces persistent pain-like states through a TLR4-dependent neuroimmune cascade involving mononuclear phagocytes, T cells, and IFN-γ."
Article | Thread
Perivascular spaces in neuropsychiatric post-COVID syndrome — Bernal et al
"these findings point to age- and duration-related differences in [centrum semiovale] PVS burden and a potentially clinically relevant relationship between CSO PVS burden and functional impairment, particularly physical functioning."
Preprint | Thread
Circulating MicroRNA ratios as diagnostic biomarkers for long COVID with an independent validation cohort — Han et al
"We identified differentially expressed miRNAs in long COVID patients following initial mild COVID-19 disease, with hsa-miR-484, hsa-miR-3455p and hsa-miR-126-3p being implicated across multiple detection modalities." "The control design did not include time-matched post infection controls, so some differences may reflect the post infection status rather than long COVID-specific biology."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 24th August 2026
News, advocacy and articles
Netherlands
ME/CFS patient and advocate Anil Van Der Zee was appointed a Knight of the Order of Orange-Nassau for his valuable contributions to society. Van der Zee has lived in isolation for more than 10 years. He received the royal honour from Amsterdam mayor Halsema. The news was reported on the website of the Dutch National Broadcast NOS.
Article | Thread
Edzard Ernst, a German professor emeritus of Complementary Medicine, has written a short and critical article on his blog about a planned study in Canada on the alternative method Lightning Process as LC-treatment. He writes: "By investigating a proprietary, fee-based intervention without incorporating objective biological markers, the trial risks lending academic legitimacy to bogus quackery."
Article l Thread
Bateman Horne Center Listen. Believe. Do No Harm.
This blog has "an occupational therapist’s guidance for caring well for people with severe ME/CFS." Amy Mooney, occupational therapist and caregiver, shares her thoughts.
Article | Thread
USA - NIH RECOVER Representatives create resources for people living with Long COVID
Practical resources are now available to help people navigate life with Long COVID. The four tools available are a symptom tracker, a workplace resource guide, a mental health resource guide, and a financial resource guide. These tools may also be useful for people with ME/CFS and other chronic illnesses.
Article | Thread
Sweden The health magazine "Må Bra" writes about Jennie Carlsson, how ME has severely impacted her life and her meeting with a health care system that lacks knowledge about the illness. There is also an interview with researcher professor Niklas Arneberg on postinfectious illnesses.
Article (Swedish) l Thread
ME Research UK The experience and impact of post-exertional malaise in ME/CFS
Article discussing responses to the ME Research UK survey about post-exertional malaise (PEM). "Whilst every individual’s experience is unique, it is striking how many shared themes emerge across the PEM survey responses."
Article | Thread
........
In Memory
Jo Cambridge professor of rheumatology and inflammation, died in July 2026.
The Guardian obituary by Linda Wilkinson starts:
"My friend and former colleague, Jo Cambridge, who has died aged 73 of acute myeloid leukaemia, challenged the prevailing thinking about rheumatoid arthritis; her research led to immunotherapies that have improved the lives of countless individuals globally." The article explains this work was part of a 40 year collaboration with Professor Jonathan Edwards. "...when she died she was investigating the origins of myalgic encephalomyelitis (ME/CFS)."
Obituary | Thread (members only)
...................
Coming events
ME/CFS charity & awareness event in Cologne, Germany
On Sunday, September 6th, an event called “Freu dich nicht zu spät” will be held in Cologne, Germany. It’s organized by two close friends of Kathi, a woman with ME/CFS who sadly died in March because of the illness.
Article | Thread
NIH RECOVER Webinar Growing up with Long COVID—Risk factors and school impacts
Tuesday, September 15 at noon EDT
Researchers will share recent findings from the RECOVER pediatric observational study.
Announcement | Thread
Young EMERG International Workshop in Valencia, Spain
The second Young EMERG International Workshop will take place in Valencia from 7-8 October. It focuses on scientific & personal development of young ME/CFS researchers, exploring leading collaborations and PI Speed Dating.
Announcement | Bluesky | Thread
........
Research news and commentary
USA - NIH RECOVER Biosamples from RECOVER clinical trials offer expanded opportunities for Long COVID research
Nearly 60,000 biosamples collected from more than 3,000 clinical trial participants will provide valuable information to researchers about how people’s bodies respond to study treatments.
Article | Thread
........
Research
ME/CFS research
Epigenome-wide profiling identifies distinct DNA methylation architecture underlying ME/CFS and fibromyalgia symptom burden — Polli et al
"Peripheral blood DNA methylation profiles identified partly distinct but overlapping DNA methylation axes in ME/CFS and fibromyalgia." "PC5 was aligned with postexertional malaise and cognitive symptoms, whereas PC6 was aligned with broader pain-related multisystem burden."
Article | Thread
Functional enrichment of immune targeted gut microbiota in post-infectious myalgic encephalomyelitis/chronic fatigue syndrome — McCauley et al
"These findings suggest that functional features of immune-recognized microbes, rather than taxonomy alone, may contribute to disease processes in PI-ME/CFS."
Article | Thread
Beyond genes: EpiSwitch® and Orion platform-powered 3D genome architecture biomarkers reveal shared biology across ME/CFS, long COVID, PTSD, rheumatoid arthritis, and multiple sclerosis — Hunter et al
"Direct overlap between disease-associated genes was limited; however, higher-order network analyses revealed substantial interconnectivity and convergence across conditions."
Article | Thread
Medical invalidation is associated with structural barriers in postacute immune mediated syndromes based on patient perspectives in Germany — Saad et al
"The findings provide clear evidence of structural deficiencies" "In particular, insufficient clinical knowledge and institutional barriers likely contribute to the inadequate recognition and misclassification of symptoms."
Article | Thread
Development and Content Validity of the Clinical Needs Assessment for Myalgic Encephalomyelitis (CNAME) — Tyson and Fleming
"Our sample was predominantly middle‐aged women with prolonged lived experience who are moderately affected."
Article | Thread
Long Covid research
A distinct effector B cell population drives autoantibody production in SARS-CoV-2 infection — Yuan et al
"CD11c+ AtMs (double-negative 2, DN2s) in autoAb-high individuals exhibited increased TLR7 signaling, oxidative stress, and isotype switching, regulated by transcription factors T-bet and XBP1."
Article | Thread
Early HHV-6 IgG and IgA responses during acute SARS-CoV-2 infection in relation to long COVID: a multicohort observational study — Choudhury et al
"Our findings reveal early IgA-focused antibody patterns driven by high-responder subsets directed against specific epitopes that are largely undetectable using conventional serologic approaches."
Article | Thread
Metabolic, viral, and immune phenotypes in long COVID — Emery et al
"the selective elevation in uncoupled extracellular acidification rates in highly symptomatic individuals may point to a preferential reliance on glycolytic flux and inefficient energy transduction during T cell activation."
Article | Thread
Abnormal post-exercise depression of corticomotor excitability is associated with fatigue in post-COVID-19 condition — Sebastianelli et al
"After the pinching task, patients showed a significantly smaller reduction in [Motor-Evoked Potential] amplitude compared with HCs, with some patients even showing a paradoxical increase in MEP amplitude."
Article | Thread
Comparative analysis of SNPs associated with COVID-19 and chronic liver disease identifies DPP9 as a candidate genetic marker for Long COVID — Silva et al
"This study suggests that host genetic factors may contribute to susceptibility to Long COVID, highlighting the DPP9 rs12610495 variant as the main finding, as it remained significantly associated with Long COVID after adjustment for potential confounding factors."
Article | Thread
Persistent Redox Imbalance in Post-COVID-19 Syndrome: Lipid Peroxidation, Antioxidant Enzyme Depletion, and Reduced Nitric Oxide Availability in an Amazonian Population — Silva et al
"a marked decrease in superoxide dismutase (SOD), catalase (CAT), and glutathione peroxidase (GPx) activities was observed, all of which were significantly reduced in the PCS group compared with the controls (p < 0.0001), with large effect sizes"
Article | Thread
SARS-CoV-2 disrupts the integrity of a human blood-brain barrier model in the absence of infection — Jmii et al
"We observed increased permeability in our BBB model following inoculation from the luminal or ‘blood’ side and the abluminal or ‘brain’ side with the infectious virus or spike protein, despite the absence of viral infection of BBB forming cells."
Article | Thread
Clinical-cognitive profiles in long COVID and their associations with inflammatory-endothelial biomarkers and vascular measures — Arjol et al
"The consistency of the ICAM-1 association supports its prioritisation in future confirmatory studies, whereas the endothelin-1 finding should be regarded as method-dependent and requires replication."
Article | Thread
eNOS Uncoupling, Shear-Stress Tolerance, and the Two-Threshold Model of Post-Exertional Malaise in Long COVID: A Mechanistic Hypothesis With Implications for Physiotherapy and Recovery Protocols — Karipidis and Karipidis
Hypothesis. "Within the proposed framework, PEM severity may depend not only on the initiating exertional load, but also on the biochemical and hemodynamic environment during the subsequent 24–48 h recovery period."
Article | Thread
Gut microbiota dysbiosis in Post-COVID condition symptoms: relation with chronic fatigue and functional limitation — Carpallo-Porcar et al
"this pilot study found that individuals with PCC show taxon-level gut microbiota differences compared to healthy controls, with further differentiation according to ME/CFS status and functional capacity." "These associations are exploratory; causality cannot be inferred from a cross-sectional design, and confounding variables could not be fully controlled."
Article | Thread
Individual Participant Data Meta-Analysis (IPDMA) of long-term COVID-19 outcomes in a systematic review-informed, international, multidisciplinary database — Ali et al
"Notably, at least 38.4% of people assessed beyond 12 months of initial infection had a FAS score ≥ 22, indicating significant fatigue." "We observed that fatigue significantly affected younger people, which may also have an impact on functioning, work, ADL and QoL."
Article | Thread
Changes in Healthcare Utilization up to 12 Months After COVID-19 Infection — Becker et al
"patients not hospitalized for their COVID-19 experience sustained increases in hospitalization risk for up to 12 months post-infection, along with smaller relative increases in most types of ambulatory care except for physical therapy."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
Netherlands
ME/CFS patient and advocate Anil Van Der Zee was appointed a Knight of the Order of Orange-Nassau for his valuable contributions to society. Van der Zee has lived in isolation for more than 10 years. He received the royal honour from Amsterdam mayor Halsema. The news was reported on the website of the Dutch National Broadcast NOS.
Article | Thread
Edzard Ernst, a German professor emeritus of Complementary Medicine, has written a short and critical article on his blog about a planned study in Canada on the alternative method Lightning Process as LC-treatment. He writes: "By investigating a proprietary, fee-based intervention without incorporating objective biological markers, the trial risks lending academic legitimacy to bogus quackery."
Article l Thread
Bateman Horne Center Listen. Believe. Do No Harm.
This blog has "an occupational therapist’s guidance for caring well for people with severe ME/CFS." Amy Mooney, occupational therapist and caregiver, shares her thoughts.
Article | Thread
USA - NIH RECOVER Representatives create resources for people living with Long COVID
Practical resources are now available to help people navigate life with Long COVID. The four tools available are a symptom tracker, a workplace resource guide, a mental health resource guide, and a financial resource guide. These tools may also be useful for people with ME/CFS and other chronic illnesses.
Article | Thread
Sweden The health magazine "Må Bra" writes about Jennie Carlsson, how ME has severely impacted her life and her meeting with a health care system that lacks knowledge about the illness. There is also an interview with researcher professor Niklas Arneberg on postinfectious illnesses.
Article (Swedish) l Thread
ME Research UK The experience and impact of post-exertional malaise in ME/CFS
Article discussing responses to the ME Research UK survey about post-exertional malaise (PEM). "Whilst every individual’s experience is unique, it is striking how many shared themes emerge across the PEM survey responses."
Article | Thread
........
In Memory
Jo Cambridge professor of rheumatology and inflammation, died in July 2026.
The Guardian obituary by Linda Wilkinson starts:
"My friend and former colleague, Jo Cambridge, who has died aged 73 of acute myeloid leukaemia, challenged the prevailing thinking about rheumatoid arthritis; her research led to immunotherapies that have improved the lives of countless individuals globally." The article explains this work was part of a 40 year collaboration with Professor Jonathan Edwards. "...when she died she was investigating the origins of myalgic encephalomyelitis (ME/CFS)."
Obituary | Thread (members only)
...................
Coming events
ME/CFS charity & awareness event in Cologne, Germany
On Sunday, September 6th, an event called “Freu dich nicht zu spät” will be held in Cologne, Germany. It’s organized by two close friends of Kathi, a woman with ME/CFS who sadly died in March because of the illness.
Article | Thread
NIH RECOVER Webinar Growing up with Long COVID—Risk factors and school impacts
Tuesday, September 15 at noon EDT
Researchers will share recent findings from the RECOVER pediatric observational study.
Announcement | Thread
Young EMERG International Workshop in Valencia, Spain
The second Young EMERG International Workshop will take place in Valencia from 7-8 October. It focuses on scientific & personal development of young ME/CFS researchers, exploring leading collaborations and PI Speed Dating.
Announcement | Bluesky | Thread
........
Research news and commentary
USA - NIH RECOVER Biosamples from RECOVER clinical trials offer expanded opportunities for Long COVID research
Nearly 60,000 biosamples collected from more than 3,000 clinical trial participants will provide valuable information to researchers about how people’s bodies respond to study treatments.
Article | Thread
........
Research
ME/CFS research
Epigenome-wide profiling identifies distinct DNA methylation architecture underlying ME/CFS and fibromyalgia symptom burden — Polli et al
"Peripheral blood DNA methylation profiles identified partly distinct but overlapping DNA methylation axes in ME/CFS and fibromyalgia." "PC5 was aligned with postexertional malaise and cognitive symptoms, whereas PC6 was aligned with broader pain-related multisystem burden."
Article | Thread
Functional enrichment of immune targeted gut microbiota in post-infectious myalgic encephalomyelitis/chronic fatigue syndrome — McCauley et al
"These findings suggest that functional features of immune-recognized microbes, rather than taxonomy alone, may contribute to disease processes in PI-ME/CFS."
Article | Thread
Beyond genes: EpiSwitch® and Orion platform-powered 3D genome architecture biomarkers reveal shared biology across ME/CFS, long COVID, PTSD, rheumatoid arthritis, and multiple sclerosis — Hunter et al
"Direct overlap between disease-associated genes was limited; however, higher-order network analyses revealed substantial interconnectivity and convergence across conditions."
Article | Thread
Medical invalidation is associated with structural barriers in postacute immune mediated syndromes based on patient perspectives in Germany — Saad et al
"The findings provide clear evidence of structural deficiencies" "In particular, insufficient clinical knowledge and institutional barriers likely contribute to the inadequate recognition and misclassification of symptoms."
Article | Thread
Development and Content Validity of the Clinical Needs Assessment for Myalgic Encephalomyelitis (CNAME) — Tyson and Fleming
"Our sample was predominantly middle‐aged women with prolonged lived experience who are moderately affected."
Article | Thread
Long Covid research
A distinct effector B cell population drives autoantibody production in SARS-CoV-2 infection — Yuan et al
"CD11c+ AtMs (double-negative 2, DN2s) in autoAb-high individuals exhibited increased TLR7 signaling, oxidative stress, and isotype switching, regulated by transcription factors T-bet and XBP1."
Article | Thread
Early HHV-6 IgG and IgA responses during acute SARS-CoV-2 infection in relation to long COVID: a multicohort observational study — Choudhury et al
"Our findings reveal early IgA-focused antibody patterns driven by high-responder subsets directed against specific epitopes that are largely undetectable using conventional serologic approaches."
Article | Thread
Metabolic, viral, and immune phenotypes in long COVID — Emery et al
"the selective elevation in uncoupled extracellular acidification rates in highly symptomatic individuals may point to a preferential reliance on glycolytic flux and inefficient energy transduction during T cell activation."
Article | Thread
Abnormal post-exercise depression of corticomotor excitability is associated with fatigue in post-COVID-19 condition — Sebastianelli et al
"After the pinching task, patients showed a significantly smaller reduction in [Motor-Evoked Potential] amplitude compared with HCs, with some patients even showing a paradoxical increase in MEP amplitude."
Article | Thread
Comparative analysis of SNPs associated with COVID-19 and chronic liver disease identifies DPP9 as a candidate genetic marker for Long COVID — Silva et al
"This study suggests that host genetic factors may contribute to susceptibility to Long COVID, highlighting the DPP9 rs12610495 variant as the main finding, as it remained significantly associated with Long COVID after adjustment for potential confounding factors."
Article | Thread
Persistent Redox Imbalance in Post-COVID-19 Syndrome: Lipid Peroxidation, Antioxidant Enzyme Depletion, and Reduced Nitric Oxide Availability in an Amazonian Population — Silva et al
"a marked decrease in superoxide dismutase (SOD), catalase (CAT), and glutathione peroxidase (GPx) activities was observed, all of which were significantly reduced in the PCS group compared with the controls (p < 0.0001), with large effect sizes"
Article | Thread
SARS-CoV-2 disrupts the integrity of a human blood-brain barrier model in the absence of infection — Jmii et al
"We observed increased permeability in our BBB model following inoculation from the luminal or ‘blood’ side and the abluminal or ‘brain’ side with the infectious virus or spike protein, despite the absence of viral infection of BBB forming cells."
Article | Thread
Clinical-cognitive profiles in long COVID and their associations with inflammatory-endothelial biomarkers and vascular measures — Arjol et al
"The consistency of the ICAM-1 association supports its prioritisation in future confirmatory studies, whereas the endothelin-1 finding should be regarded as method-dependent and requires replication."
Article | Thread
eNOS Uncoupling, Shear-Stress Tolerance, and the Two-Threshold Model of Post-Exertional Malaise in Long COVID: A Mechanistic Hypothesis With Implications for Physiotherapy and Recovery Protocols — Karipidis and Karipidis
Hypothesis. "Within the proposed framework, PEM severity may depend not only on the initiating exertional load, but also on the biochemical and hemodynamic environment during the subsequent 24–48 h recovery period."
Article | Thread
Gut microbiota dysbiosis in Post-COVID condition symptoms: relation with chronic fatigue and functional limitation — Carpallo-Porcar et al
"this pilot study found that individuals with PCC show taxon-level gut microbiota differences compared to healthy controls, with further differentiation according to ME/CFS status and functional capacity." "These associations are exploratory; causality cannot be inferred from a cross-sectional design, and confounding variables could not be fully controlled."
Article | Thread
Individual Participant Data Meta-Analysis (IPDMA) of long-term COVID-19 outcomes in a systematic review-informed, international, multidisciplinary database — Ali et al
"Notably, at least 38.4% of people assessed beyond 12 months of initial infection had a FAS score ≥ 22, indicating significant fatigue." "We observed that fatigue significantly affected younger people, which may also have an impact on functioning, work, ADL and QoL."
Article | Thread
Changes in Healthcare Utilization up to 12 Months After COVID-19 Infection — Becker et al
"patients not hospitalized for their COVID-19 experience sustained increases in hospitalization risk for up to 12 months post-infection, along with smaller relative increases in most types of ambulatory care except for physical therapy."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky