News in Brief - August 2026

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
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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
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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
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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
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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
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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
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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
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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
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S4ME social media: Forum, Mastodon, Bluesky
 
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