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