News in Brief - July 2026
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Week beginning 6th July 2026
News including research news
Australia Count ME: A Milestone for ME/CFS Recognition in Australia
ME/CFS will be included in the upcoming Australian Burden of Disease Study (ABDS), set to be released by the Australian Institute of Health and Welfare (AIHW) in December 2026. This marks the first time since 2003 that ME/CFS will be recognised as a separate condition within the national health framework.
Emerge Announcement | Thread
WE&ME Foundation
Thanks to the WE&ME Award, granted through the Austrian Science Fund (FWF) alpha+ Foundation, epidemiologist Matthias Wielscher will be able to investigate why ME/CFS does not progress the same way for everyone. The WE&ME Foundation is providing 450,000 euros for this project. In addition, the Austrian Science Fund is funding three other ME/CFS projects in Vienna and Innsbruck with 1.3 million euros.
Article | Thread
WE&ME Projects: Funding innovative ME/CFS research worldwide in collaboration with Science for ME
The new call for ME/CFS research proposals aims to fund 7 projects, each with a budget of €120,000 - 180,000. Researchers from all over the world can apply, the deadline for the first stage is 25 August 2026.
Website | Thread
..........
Coming events
July
USA - NIH R3 Seminar: RECOVER clinical trial results and the pursuit of Long COVID treatments
Tuesday, July 14, 12:00–1:30 pm ET
Website | Registration | Thread
Solve ME webinar Repurposing Rapamycin: A Report On the First Biomarker-Driven Treatment Trial for ME/CFS
Tuesday, July 14, 3 - 4 pm PT / 6-7 pm ET
Panelists will discuss the latest learnings from the study and their plan to conduct an NIH exploratory treatment trial based on the data.
Registration | Thread
USA RECOVER-TLC webinar Thursday, July 16, 2026, from 1:00-2:00 pm ET
"NIH and FNIH leaders will discuss how RECOVER-TLC will test the safety and effectiveness of possible treatments for Long COVID." They will also report on the current status of 4 trials.
Article | Registration | Thread
Bateman Horne Center Free Online Support Group
Tuesday, July 21, 1 - 2 pm MDT
Topic: Limits, Wants, Boundaries and Needs: Taking Care of Ourselves While Chronically Ill
Advance registration required, registration link shows time in your time zone.
Registration | Thread
UK PRIME Webinar 3 on PEM Thursday 30th July, 2026 2-5 pm GMT
Talk 1: Post-Exertional Malaise - a perspective from the online ME/CFS community of Science for ME. Maree Candish
Talk 2: The pathophysiology of PEM, what we know, but importantly, what we don’t? Mark Faghy
Talk 3: Failure to capture PEM distorts evidence in ME/CFS and Long COVID trials. Marjon Wormgoor
Talk 4: How to Eat an Elephant: Contemporary Scientific and Clinical Approaches to Post-Exertional Malaise. Todd Davenport
Talk 5: Molecular signals of PEM. Maureen Hanson
Announcement | Programme (PDF) | Thread
August
PAIS conference Amsterdam
The program for the PAIS conferences in Amsterdam has been published. Speakers include Danny Altmann, Eva Untermayr, Carmen Scheibenbogen, Rob Wüst and Mark Faghy. The conference will take place from 26 - 29 August.
Website l Thread
September
PRIME International Symposium a two-day hybrid event exploring the latest developments in ME/CFS research.
9 am on 28 September to 2 pm on 29 September at the John McIntyre Conference Centre in Edinburgh, with online attendance also available.
"The PRIME Symposium will see the launch of the new International Genetic Epidemiology of ME/CFS Consortium, as well as provide a platform for Early Career Researchers and the Patient and Public Involvement Research Involvement Hub to present exciting new research and supporting activities."
Article | Preliminary programme | Registration | Thread
.........
Research
ME/CFS research
Metabolomic Classification of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome via Explainable Ensemble Learning and Pareto-Guided Feature Selection — Yagin et al
"pairwise metabolite co-variation contributes additional discriminative value beyond individual metabolite levels, implicating amino acid catabolism, tryptophan–kynurenine pathway dysregulation, mitochondrial energy impairment, and lipid remodelling as central pathophysiological features."
Article | Thread
Development and validation of the Tiredness Identification Index (TIDI): a combined scale for the assessment of fatigue and sleepiness — Reeve et al
"Tiredness is understood to reflect sleepiness (i.e. wanting to go to sleep) or fatigue (i.e. physical exhaustion) or both, but assessment has been limited by difficulty in discriminating sleepiness and fatigue. This paper reports a new measure that enables discrimination between sleepiness and fatigue"
Article | Thread
Overcoming barriers in myalgic encephalomyelitis/chronic fatigue syndrome research: the CureME participatory model — Abken et al
"In this commentary we highlight key methodological and practical barriers in ME/CFS research and propose the ‘CureME Framework’ as a way to address them."
Article | Thread
Evaluation of an Invisible Illness Communication Strategy Curriculum Among Internal Medicine Interns — Zambrano et al
"Following the workshop, interns reported a statistically significant reduction in perceived communication difficulty (4.09 vs. 3.51, p < 0.01) and a statistically significant increase in looking forward to working with patients with invisible illness (2.23 vs. 3.20, p < 0.01)."
Article | Thread
Long Covid research
Long-term ocular symptoms following COVID-19 linked to immune dysregulation, dysautonomia and peripheral neuropathy — Moustardas et al
"[Symptoms] lead to significant vision disability and are linked to clinical findings not detectable in routine exams but only with specialized tests."
Article | Thread
Persistent impairments in muscle function and symptom burden in post-COVID syndrome: a prospective longitudinal study — Wunderle et al
"objective muscle impairments remained largely stable over the six-month observation period" "patients exhibited significantly lower Fmean, elevated muscular fatigability (Fatigue Ratio), and reduced recovery capacity compared with matched COVID-19 recovered controls at both [Baseline] and [Followup]."
Article | Thread
Vagal cholinergic denervation of the gastric mucosa in Long-COVID-19: in vivo evidence of structural autonomic dysfunction — Acanfora et al
"A central finding of this study is the marked reduction in mucosal nerve fiber density, particularly affecting cholinergic (VIP-positive) fibers." "it suggests that autonomic dysfunction in Long-COVID-19 is not merely a functional disturbance but may reflect an underlying structural lesion."
Article | Thread
Efficacy and safety of rivaroxaban, colchicine, and famotidine–loratadine with specialist supportive clinical care for fatigue in patients with post-COVID-19 condition in the UK: a multisite, open-label, randomised controlled trial — Wall et al
"In 778 adults, the primary outcome of self-reported fatigue, as measured with the Fatigue Assessment Scale, decreased across all participants in the first 3 months, including those assigned no drug" "No substantial differences in fatigue scores between groups were found at 24 weeks, 12 weeks after drug cessation."
Article | Thread
Temelimab versus placebo in patients with post-COVID condition — Nehme et al
"In this trial involving 203 patients with post-COVID condition, there was no improvement in fatigue in the group of individuals who received Temelimab compared to placebo."
Article | Thread
Implications of RNA virus persistence for post-acute sequelae and chronic inflammatory syndromes — Vidal et al
Review. "beyond the acute phase, common RNA viruses leave molecular footprints that have functional consequences in contributing to chronic inflammation, immune dysregulation and long-term organ dysfunction."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News including research news
Australia Count ME: A Milestone for ME/CFS Recognition in Australia
ME/CFS will be included in the upcoming Australian Burden of Disease Study (ABDS), set to be released by the Australian Institute of Health and Welfare (AIHW) in December 2026. This marks the first time since 2003 that ME/CFS will be recognised as a separate condition within the national health framework.
Emerge Announcement | Thread
WE&ME Foundation
Thanks to the WE&ME Award, granted through the Austrian Science Fund (FWF) alpha+ Foundation, epidemiologist Matthias Wielscher will be able to investigate why ME/CFS does not progress the same way for everyone. The WE&ME Foundation is providing 450,000 euros for this project. In addition, the Austrian Science Fund is funding three other ME/CFS projects in Vienna and Innsbruck with 1.3 million euros.
Article | Thread
WE&ME Projects: Funding innovative ME/CFS research worldwide in collaboration with Science for ME
The new call for ME/CFS research proposals aims to fund 7 projects, each with a budget of €120,000 - 180,000. Researchers from all over the world can apply, the deadline for the first stage is 25 August 2026.
Website | Thread
..........
Coming events
July
USA - NIH R3 Seminar: RECOVER clinical trial results and the pursuit of Long COVID treatments
Tuesday, July 14, 12:00–1:30 pm ET
Website | Registration | Thread
Solve ME webinar Repurposing Rapamycin: A Report On the First Biomarker-Driven Treatment Trial for ME/CFS
Tuesday, July 14, 3 - 4 pm PT / 6-7 pm ET
Panelists will discuss the latest learnings from the study and their plan to conduct an NIH exploratory treatment trial based on the data.
Registration | Thread
USA RECOVER-TLC webinar Thursday, July 16, 2026, from 1:00-2:00 pm ET
"NIH and FNIH leaders will discuss how RECOVER-TLC will test the safety and effectiveness of possible treatments for Long COVID." They will also report on the current status of 4 trials.
Article | Registration | Thread
Bateman Horne Center Free Online Support Group
Tuesday, July 21, 1 - 2 pm MDT
Topic: Limits, Wants, Boundaries and Needs: Taking Care of Ourselves While Chronically Ill
Advance registration required, registration link shows time in your time zone.
Registration | Thread
UK PRIME Webinar 3 on PEM Thursday 30th July, 2026 2-5 pm GMT
Talk 1: Post-Exertional Malaise - a perspective from the online ME/CFS community of Science for ME. Maree Candish
Talk 2: The pathophysiology of PEM, what we know, but importantly, what we don’t? Mark Faghy
Talk 3: Failure to capture PEM distorts evidence in ME/CFS and Long COVID trials. Marjon Wormgoor
Talk 4: How to Eat an Elephant: Contemporary Scientific and Clinical Approaches to Post-Exertional Malaise. Todd Davenport
Talk 5: Molecular signals of PEM. Maureen Hanson
Announcement | Programme (PDF) | Thread
August
PAIS conference Amsterdam
The program for the PAIS conferences in Amsterdam has been published. Speakers include Danny Altmann, Eva Untermayr, Carmen Scheibenbogen, Rob Wüst and Mark Faghy. The conference will take place from 26 - 29 August.
Website l Thread
September
PRIME International Symposium a two-day hybrid event exploring the latest developments in ME/CFS research.
9 am on 28 September to 2 pm on 29 September at the John McIntyre Conference Centre in Edinburgh, with online attendance also available.
"The PRIME Symposium will see the launch of the new International Genetic Epidemiology of ME/CFS Consortium, as well as provide a platform for Early Career Researchers and the Patient and Public Involvement Research Involvement Hub to present exciting new research and supporting activities."
Article | Preliminary programme | Registration | Thread
.........
Research
ME/CFS research
Metabolomic Classification of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome via Explainable Ensemble Learning and Pareto-Guided Feature Selection — Yagin et al
"pairwise metabolite co-variation contributes additional discriminative value beyond individual metabolite levels, implicating amino acid catabolism, tryptophan–kynurenine pathway dysregulation, mitochondrial energy impairment, and lipid remodelling as central pathophysiological features."
Article | Thread
Development and validation of the Tiredness Identification Index (TIDI): a combined scale for the assessment of fatigue and sleepiness — Reeve et al
"Tiredness is understood to reflect sleepiness (i.e. wanting to go to sleep) or fatigue (i.e. physical exhaustion) or both, but assessment has been limited by difficulty in discriminating sleepiness and fatigue. This paper reports a new measure that enables discrimination between sleepiness and fatigue"
Article | Thread
Overcoming barriers in myalgic encephalomyelitis/chronic fatigue syndrome research: the CureME participatory model — Abken et al
"In this commentary we highlight key methodological and practical barriers in ME/CFS research and propose the ‘CureME Framework’ as a way to address them."
Article | Thread
Evaluation of an Invisible Illness Communication Strategy Curriculum Among Internal Medicine Interns — Zambrano et al
"Following the workshop, interns reported a statistically significant reduction in perceived communication difficulty (4.09 vs. 3.51, p < 0.01) and a statistically significant increase in looking forward to working with patients with invisible illness (2.23 vs. 3.20, p < 0.01)."
Article | Thread
Long Covid research
Long-term ocular symptoms following COVID-19 linked to immune dysregulation, dysautonomia and peripheral neuropathy — Moustardas et al
"[Symptoms] lead to significant vision disability and are linked to clinical findings not detectable in routine exams but only with specialized tests."
Article | Thread
Persistent impairments in muscle function and symptom burden in post-COVID syndrome: a prospective longitudinal study — Wunderle et al
"objective muscle impairments remained largely stable over the six-month observation period" "patients exhibited significantly lower Fmean, elevated muscular fatigability (Fatigue Ratio), and reduced recovery capacity compared with matched COVID-19 recovered controls at both [Baseline] and [Followup]."
Article | Thread
Vagal cholinergic denervation of the gastric mucosa in Long-COVID-19: in vivo evidence of structural autonomic dysfunction — Acanfora et al
"A central finding of this study is the marked reduction in mucosal nerve fiber density, particularly affecting cholinergic (VIP-positive) fibers." "it suggests that autonomic dysfunction in Long-COVID-19 is not merely a functional disturbance but may reflect an underlying structural lesion."
Article | Thread
Efficacy and safety of rivaroxaban, colchicine, and famotidine–loratadine with specialist supportive clinical care for fatigue in patients with post-COVID-19 condition in the UK: a multisite, open-label, randomised controlled trial — Wall et al
"In 778 adults, the primary outcome of self-reported fatigue, as measured with the Fatigue Assessment Scale, decreased across all participants in the first 3 months, including those assigned no drug" "No substantial differences in fatigue scores between groups were found at 24 weeks, 12 weeks after drug cessation."
Article | Thread
Temelimab versus placebo in patients with post-COVID condition — Nehme et al
"In this trial involving 203 patients with post-COVID condition, there was no improvement in fatigue in the group of individuals who received Temelimab compared to placebo."
Article | Thread
Implications of RNA virus persistence for post-acute sequelae and chronic inflammatory syndromes — Vidal et al
Review. "beyond the acute phase, common RNA viruses leave molecular footprints that have functional consequences in contributing to chronic inflammation, immune dysregulation and long-term organ dysfunction."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky