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
Week beginning 13th July 2026
News, advocacy and articles
UK Local ME/CFS groups respond to the Royal College of Psychiatrists
Dr Mark Harper and three ME/CFS/LongCovid support groups have written to the RCPsych, with clear rebuttal of the College's reply to the Long Covid Advocacy led open letter about the Post-COVID Condition session at Congress 2026.
"We ask that [RCPsych] cease to lend [biopsychosocial] theories the prestige of “expertise” and the shelter of an unfalsifiable framework; that it align its programming and outputs with NICE guideline NG206 and the current biomedical evidence base; and that it ensure these conditions are not presented through interpretive models with little or no evidence to support them."
Open letter | Thread
UK Parliament Video highlights of Action for ME’s Clare Ogden giving evidence to the UK Parliament’s Women and Equalities Committee inquiry into flexible working and disability (9 mins)
Video | Thread
The Sick Times What can professional athletes teach us about Long COVID and rest?
Excellent podcast interview with former professional athlete Oonagh Cousins on Long Covid, ME/CFS, pacing and rest versus exercise, harmful "brain retraining" programs and more.
Interview l Thread
Canada - ICanCME ME Stars of Tomorrow Scholarship Program
Scholarship program for "graduate students who are conducting Myalgic Encephalomyelitis research as part of their research project." See website for full details.
Website | Thread
..........
Coming events
Unfixed Media Unbound: World Premiere on July 29 at 6:30 PM EDT
"Unbound is a short dance film created by individuals living with ME/CFS and/or Long COVID, exploring the tension between constraint and expression, stillness and vitality." Forum thread has a link to a short clip from the film.
Website | Register (free) | Thread
.........
Research news and commentary
Solve ME Repurposing Rapamycin: A Report On the First Biomarker-Driven Treatment Trial for ME/CFS
A recording of this webinar is now available on YouTube. Duration about one hour.
Video | Thread
..........
Research
ME/CFS research
Perioperative outcomes in patients with myalgic encephalomyelitis/chronic fatigue syndrome undergoing general anesthesia: a retrospective matched-pair study — Steinkirchner et al
"In this small exploratory cohort, general anesthesia was not associated with clinically relevant hemodynamic instability in patients with ME/CFS." "Postoperative pain scores and opioid rescue requirements were higher in the ME/CFS group." "Post-exertional malaise, a key disease feature with potentially delayed onset and significant impact, was not captured and remains an important target for future research."
Article | Thread
Microstructural alterations in brain tissue of ME/CFS and long COVID using diffusion tensor imaging and diffusion kurtosis imaging — Singh et al
"We found significant uncorrected correlations between DTI, DKI metrics and clinical measures in ME/CFS and long COVID. However, we did not find any significant differences between these metrics after adjusting for multiple comparisons."
Article | Thread
Association of rapamycin treatment with the modulation of purine metabolism, reduced microglial inflammatory responses, improved mitochondrial energy metabolism, and alleviation of fatigue symptoms in ME/CFS subjects: pilot findings from phase-II observational study — Gile et al
Article | Thread
Handgrip strength in children, adolescents, and young adults with suspected myalgic encephalomyelitis/chronic fatigue syndrome — Mihatsch et al
"The HGS parameters correlated modestly with overall physical status, suggesting general functional impairment rather than ME/CFS-specific pathology." "Their role in ME/CFS diagnostics proved limited."
Article | Thread
Australian registry reports poor health and wellbeing in people living with ME/CFS — Eaton-Fitch and Marshall-Gradisnik
"This large-scale investigation provides further evidence of the profound consequences of ME/CFS on HRQoL outcomes" "While fatigue was a significant predictor of poor HRQoL outcomes, muscle weaknesses, cognitive impairment, pain, gastrointestinal and cardiovascular manifestations were also contributors."
Article | Thread
Long Covid research
Distinct Regulatory DNA Methylation Signatures Across Multiple Sclerosis, Neuromyelitis Optica, and Neurological Post-Acute Sequelae of COVID-19 — Munzir et al
"In neuro-PASC, the leading pathways included Cytoskeleton in muscle cells, Integrin signaling, Pathways in cancer, IgSF CAM signaling, Rap1 signaling pathway, Focal adhesion, Axon guidance, Platelet activation, and Phospholipase D signaling pathway."
Article | Thread
Fatigue after COVID-19 infection is associated with peripheral immunometabolic alterations affecting neuroimmune responses in the hippocampus — Mariani et al
"This is, to our knowledge, the first evidence that serum from individuals with past COVID-19 infection is associated with changes in human hippocampal neuronal and astrocytic markers in vitro"
Article | Thread
Longitudinal assessment of SARS-CoV-2 Spike and Nucleocapsid antigenemia in the ORCHESTRA Post-COVID cohort — Coppens et al
"Low-level systemic antigen persistence occurs in a subset of individuals but does not differentiate PCC from recovered controls." "These data argue against persistent circulating antigenemia as a primary, generalizable driver of PCC"
Article | Thread
Recent SARS-CoV-2 infections and increased antibody responses to viral antigens are associated with greater autoantibody reactivity — Egorov et al
"A novel finding of this study was that more than 50% of the observed effect of SARS-CoV-2 infection on the combined autoantibody reactivity was mediated by the increased total serum IgG concentration."
Article | Thread
CD4+ T cell signature in long COVID: insights from an unvaccinated cohort — Cerqueira-Silva et al
Small cohort study. "we provide evidence of transcriptomic alterations in the CD4+ T-cell compartment in LC, characterized by immune activation signatures in antigen-responsive cells that are uncoupled from both clonal expansion and the systemic humoral response."
Article | Thread
Agreement and reliability between the two-day 6-minute incremental step test and two-day cardiopulmonary exercise test in post COVID-19 condition for assessing post-exertional malaise: The REVEAL-study — Bomans et al
"Opposite to our hypothesis, we found overall low agreement and low to moderate reliability between the two-day CPET and two-day 6MIST for both objective and subjective outcomes."
Article | Thread
Related Research
Cross-definition GWAS of IBS in 2.8 million individuals reveals cardiometabolic and triglyceride-linked mechanisms — Lorenzo et al
"we identify 35 risk loci and demonstrate a consistent polygenic architecture across different case definitions."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
UK Local ME/CFS groups respond to the Royal College of Psychiatrists
Dr Mark Harper and three ME/CFS/LongCovid support groups have written to the RCPsych, with clear rebuttal of the College's reply to the Long Covid Advocacy led open letter about the Post-COVID Condition session at Congress 2026.
"We ask that [RCPsych] cease to lend [biopsychosocial] theories the prestige of “expertise” and the shelter of an unfalsifiable framework; that it align its programming and outputs with NICE guideline NG206 and the current biomedical evidence base; and that it ensure these conditions are not presented through interpretive models with little or no evidence to support them."
Open letter | Thread
UK Parliament Video highlights of Action for ME’s Clare Ogden giving evidence to the UK Parliament’s Women and Equalities Committee inquiry into flexible working and disability (9 mins)
Video | Thread
The Sick Times What can professional athletes teach us about Long COVID and rest?
Excellent podcast interview with former professional athlete Oonagh Cousins on Long Covid, ME/CFS, pacing and rest versus exercise, harmful "brain retraining" programs and more.
Interview l Thread
Canada - ICanCME ME Stars of Tomorrow Scholarship Program
Scholarship program for "graduate students who are conducting Myalgic Encephalomyelitis research as part of their research project." See website for full details.
Website | Thread
..........
Coming events
Unfixed Media Unbound: World Premiere on July 29 at 6:30 PM EDT
"Unbound is a short dance film created by individuals living with ME/CFS and/or Long COVID, exploring the tension between constraint and expression, stillness and vitality." Forum thread has a link to a short clip from the film.
Website | Register (free) | Thread
.........
Research news and commentary
Solve ME Repurposing Rapamycin: A Report On the First Biomarker-Driven Treatment Trial for ME/CFS
A recording of this webinar is now available on YouTube. Duration about one hour.
Video | Thread
..........
Research
ME/CFS research
Perioperative outcomes in patients with myalgic encephalomyelitis/chronic fatigue syndrome undergoing general anesthesia: a retrospective matched-pair study — Steinkirchner et al
"In this small exploratory cohort, general anesthesia was not associated with clinically relevant hemodynamic instability in patients with ME/CFS." "Postoperative pain scores and opioid rescue requirements were higher in the ME/CFS group." "Post-exertional malaise, a key disease feature with potentially delayed onset and significant impact, was not captured and remains an important target for future research."
Article | Thread
Microstructural alterations in brain tissue of ME/CFS and long COVID using diffusion tensor imaging and diffusion kurtosis imaging — Singh et al
"We found significant uncorrected correlations between DTI, DKI metrics and clinical measures in ME/CFS and long COVID. However, we did not find any significant differences between these metrics after adjusting for multiple comparisons."
Article | Thread
Association of rapamycin treatment with the modulation of purine metabolism, reduced microglial inflammatory responses, improved mitochondrial energy metabolism, and alleviation of fatigue symptoms in ME/CFS subjects: pilot findings from phase-II observational study — Gile et al
Article | Thread
Handgrip strength in children, adolescents, and young adults with suspected myalgic encephalomyelitis/chronic fatigue syndrome — Mihatsch et al
"The HGS parameters correlated modestly with overall physical status, suggesting general functional impairment rather than ME/CFS-specific pathology." "Their role in ME/CFS diagnostics proved limited."
Article | Thread
Australian registry reports poor health and wellbeing in people living with ME/CFS — Eaton-Fitch and Marshall-Gradisnik
"This large-scale investigation provides further evidence of the profound consequences of ME/CFS on HRQoL outcomes" "While fatigue was a significant predictor of poor HRQoL outcomes, muscle weaknesses, cognitive impairment, pain, gastrointestinal and cardiovascular manifestations were also contributors."
Article | Thread
Long Covid research
Distinct Regulatory DNA Methylation Signatures Across Multiple Sclerosis, Neuromyelitis Optica, and Neurological Post-Acute Sequelae of COVID-19 — Munzir et al
"In neuro-PASC, the leading pathways included Cytoskeleton in muscle cells, Integrin signaling, Pathways in cancer, IgSF CAM signaling, Rap1 signaling pathway, Focal adhesion, Axon guidance, Platelet activation, and Phospholipase D signaling pathway."
Article | Thread
Fatigue after COVID-19 infection is associated with peripheral immunometabolic alterations affecting neuroimmune responses in the hippocampus — Mariani et al
"This is, to our knowledge, the first evidence that serum from individuals with past COVID-19 infection is associated with changes in human hippocampal neuronal and astrocytic markers in vitro"
Article | Thread
Longitudinal assessment of SARS-CoV-2 Spike and Nucleocapsid antigenemia in the ORCHESTRA Post-COVID cohort — Coppens et al
"Low-level systemic antigen persistence occurs in a subset of individuals but does not differentiate PCC from recovered controls." "These data argue against persistent circulating antigenemia as a primary, generalizable driver of PCC"
Article | Thread
Recent SARS-CoV-2 infections and increased antibody responses to viral antigens are associated with greater autoantibody reactivity — Egorov et al
"A novel finding of this study was that more than 50% of the observed effect of SARS-CoV-2 infection on the combined autoantibody reactivity was mediated by the increased total serum IgG concentration."
Article | Thread
CD4+ T cell signature in long COVID: insights from an unvaccinated cohort — Cerqueira-Silva et al
Small cohort study. "we provide evidence of transcriptomic alterations in the CD4+ T-cell compartment in LC, characterized by immune activation signatures in antigen-responsive cells that are uncoupled from both clonal expansion and the systemic humoral response."
Article | Thread
Agreement and reliability between the two-day 6-minute incremental step test and two-day cardiopulmonary exercise test in post COVID-19 condition for assessing post-exertional malaise: The REVEAL-study — Bomans et al
"Opposite to our hypothesis, we found overall low agreement and low to moderate reliability between the two-day CPET and two-day 6MIST for both objective and subjective outcomes."
Article | Thread
Related Research
Cross-definition GWAS of IBS in 2.8 million individuals reveals cardiometabolic and triglyceride-linked mechanisms — Lorenzo et al
"we identify 35 risk loci and demonstrate a consistent polygenic architecture across different case definitions."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 20th July 2026
News, advocacy and articles
The Sick Times How to interpret clinical trial results for Long COVID
Includes a section called "a crash course in statistics." Also links to this resource: Questions to ask when evaluating evidence from clinical trials.
Article | Thread
UK Broken Battery Update from forum member Adam pwme about an ME/CFS video he posted a year ago
"My 27-minute #MECFS Medical Scandal Explainer video has now passed 300,000 views on YouTube. There are over 3100 comments. YouTube's AI summary found the most common themes were medical gaslighting and harm from graded exercise therapy".
Video | Bluesky | Article | Thread
NeurologistMom When Doctors Suspect the Parent Instead of the Disease: Parents Silenced Under Threat
A substack post from May on a family's unsafe experiences with a healthcare system blaming the parents for the child's illness.
Article l Thread
.............
Coming events
UK PRIME Webinar 3 on PEM Thursday 30th July, 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
Bateman Horne Center Free Online Support Group
Tuesday, August 4, 1 - 2 pm MDT
Topic: Caretaking While Chronically Ill: Parenting or Caring for Aging Family Members
Advance registration required, registration link shows time in your time zone.
Registration | Thread
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
.............
Research news and commentary
ME/CFS Science Cell and tissue enrichment in ME/CFS
Forum member ME/CFS Science Blog has written an article on cell and tissue enrichment. By matching DNA results with gene expression databases researchers can determine the tissues and cell types involved in various diseases. For ME/CFS, the results strongly point to neurons.
Article | Thread
Germany Rehabilitation for ME/CFS carries a high risk of worsening the condition
An article by the German ME/CFS Society (Deutsche gesellschaft für ME/CFS) argues that rehabilitation for ME/CFS carries a high risk of worsening the illness.
Article (German) | Thread
ME/CFS Research Foundation
The ME/CFS Research Foundation has invested €2.4 million in 7 new research projects. It includes a treatment trial of tafasitamab, which targets B-cells, and a genetic study of families with multiple members affected by ME/CFS.
Article (German) | Thread
............
Research
Long Covid research
Persistent neuromuscular dysfunction in long COVID: A quantitative and single fiber EMG follow-up study — Khan et al
"Although SFEMG abnormalities persisted in the majority of patients, 40% showed normalization of objective neurophysiological parameters despite unchanged subjective fatigue symptoms, highlighting the discrepancy between electrophysiological recovery and patient-reported outcomes."
Article | Thread
Plasma Cytokine and Caspase-1p20 Profiles in Pre-Pandemic and Long COVID-Associated Postural Orthostatic Tachycardia Syndrome — Gunning et al
The notable performance of IL-18 is supported by concurrent elevations of the active Capase-1 p20 subunit and IL-1β." "Together, this triad of circulating biomarkers are suggestive of activation of canonical inflammasome pathways, most notably the NLRP3 inflammasome."
Article | Thread
Small extracellular vesicles proteome reveals persistent inflammatory and coagulopathic dysregulation in long-COVID — Chandran et al
"this study highlights a potential role of SEVs and their molecular cargo in the inflammatory, thrombotic, coagulopathic, and endothelial abnormalities characteristic of PASC."
Article | Thread
Understanding neuroinflammation in post-COVID-19 syndrome: biological mechanisms, diagnostic biomarkers, and therapeutic prospects — Martins et al
"we highlight converging neuroimaging biomarkers derived from PET and MRI studies." "These include increased TSPO-PET binding in limbic and frontal regions, alterations in cerebral blood flow and oxygen metabolism, neurometabolic changes detected via MR spectroscopy […], and increased free water content on diffusion imaging - each suggestive of glial activation and network-level dysfunction."
Article | Thread
Cerebral gray matter volumes in long-term post-COVID patients are associated with peripheral kynurenine pathway metabolites and the severity of depressive symptoms — Matits et al
"Although no significant group-level GMV differences were observed, a higher peripheral kynurenic acid/ quinolinic acid ratio was associated with a higher GMV in the right parietal lobe and right cingulate gyrus in patients with PCC"
Article | Thread
An exploratory exome-wide machine learning analysis identifies candidate host gene signatures associated with Long COVID in a large admixed Brazilian cohort — Zetum et al
"this study provides a hypothesis-generating integrative framework for investigating host genetic contributions to LC in an underrepresented admixed population."
Article | Thread
Altered TRPM3-Dependent Cytosolic and Mitochondrial Calcium Influx in Natural Killer Cells of Post-COVID-19 Condition Patients — Magawa et al
"this study provided new evidence that demonstrate that TRPM3 ion channel dysfunction has a significant impact on cytoplasmic and Ca2+ mobilization in the mitochondria in PCC." "In addition, this study highlighted potential overcompensatory mechanisms in the mitochondria, possibly arising from altered Ca2+ signalling processes."
Article | Thread
Estimating the Quality-Adjusted Life-Year Loss due to Fatal and Nonfatal COVID-19 Outcomes across US States and Counties, July 2020 to December 2022 — Mikdashi et al
"The quality-of-life burden of nonfatal COVID-19 outcomes, particularly long COVID, is on the same scale as that of major chronic and infectious diseases."
Article | Thread
Item comprehension and content coverage of patient-reported outcome measures for long COVID: a qualitative study — Zigler et al
"Overall, these results support the use of this set of modified PROMs in the phase 2 RECOVER-CT trials."
Article | Thread
Efficacy of a psychotherapeutic group intervention for patients with Post-COVID-19 condition: a randomized controlled trial (PsyLoCo study) — Rometsch et al
"In this exploratory randomized controlled trial, the intervention did not show significant superiority over the control condition"
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
The Sick Times How to interpret clinical trial results for Long COVID
Includes a section called "a crash course in statistics." Also links to this resource: Questions to ask when evaluating evidence from clinical trials.
Article | Thread
UK Broken Battery Update from forum member Adam pwme about an ME/CFS video he posted a year ago
"My 27-minute #MECFS Medical Scandal Explainer video has now passed 300,000 views on YouTube. There are over 3100 comments. YouTube's AI summary found the most common themes were medical gaslighting and harm from graded exercise therapy".
Video | Bluesky | Article | Thread
NeurologistMom When Doctors Suspect the Parent Instead of the Disease: Parents Silenced Under Threat
A substack post from May on a family's unsafe experiences with a healthcare system blaming the parents for the child's illness.
Article l Thread
.............
Coming events
UK PRIME Webinar 3 on PEM Thursday 30th July, 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
Bateman Horne Center Free Online Support Group
Tuesday, August 4, 1 - 2 pm MDT
Topic: Caretaking While Chronically Ill: Parenting or Caring for Aging Family Members
Advance registration required, registration link shows time in your time zone.
Registration | Thread
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
.............
Research news and commentary
ME/CFS Science Cell and tissue enrichment in ME/CFS
Forum member ME/CFS Science Blog has written an article on cell and tissue enrichment. By matching DNA results with gene expression databases researchers can determine the tissues and cell types involved in various diseases. For ME/CFS, the results strongly point to neurons.
Article | Thread
Germany Rehabilitation for ME/CFS carries a high risk of worsening the condition
An article by the German ME/CFS Society (Deutsche gesellschaft für ME/CFS) argues that rehabilitation for ME/CFS carries a high risk of worsening the illness.
Article (German) | Thread
ME/CFS Research Foundation
The ME/CFS Research Foundation has invested €2.4 million in 7 new research projects. It includes a treatment trial of tafasitamab, which targets B-cells, and a genetic study of families with multiple members affected by ME/CFS.
Article (German) | Thread
............
Research
Long Covid research
Persistent neuromuscular dysfunction in long COVID: A quantitative and single fiber EMG follow-up study — Khan et al
"Although SFEMG abnormalities persisted in the majority of patients, 40% showed normalization of objective neurophysiological parameters despite unchanged subjective fatigue symptoms, highlighting the discrepancy between electrophysiological recovery and patient-reported outcomes."
Article | Thread
Plasma Cytokine and Caspase-1p20 Profiles in Pre-Pandemic and Long COVID-Associated Postural Orthostatic Tachycardia Syndrome — Gunning et al
The notable performance of IL-18 is supported by concurrent elevations of the active Capase-1 p20 subunit and IL-1β." "Together, this triad of circulating biomarkers are suggestive of activation of canonical inflammasome pathways, most notably the NLRP3 inflammasome."
Article | Thread
Small extracellular vesicles proteome reveals persistent inflammatory and coagulopathic dysregulation in long-COVID — Chandran et al
"this study highlights a potential role of SEVs and their molecular cargo in the inflammatory, thrombotic, coagulopathic, and endothelial abnormalities characteristic of PASC."
Article | Thread
Understanding neuroinflammation in post-COVID-19 syndrome: biological mechanisms, diagnostic biomarkers, and therapeutic prospects — Martins et al
"we highlight converging neuroimaging biomarkers derived from PET and MRI studies." "These include increased TSPO-PET binding in limbic and frontal regions, alterations in cerebral blood flow and oxygen metabolism, neurometabolic changes detected via MR spectroscopy […], and increased free water content on diffusion imaging - each suggestive of glial activation and network-level dysfunction."
Article | Thread
Cerebral gray matter volumes in long-term post-COVID patients are associated with peripheral kynurenine pathway metabolites and the severity of depressive symptoms — Matits et al
"Although no significant group-level GMV differences were observed, a higher peripheral kynurenic acid/ quinolinic acid ratio was associated with a higher GMV in the right parietal lobe and right cingulate gyrus in patients with PCC"
Article | Thread
An exploratory exome-wide machine learning analysis identifies candidate host gene signatures associated with Long COVID in a large admixed Brazilian cohort — Zetum et al
"this study provides a hypothesis-generating integrative framework for investigating host genetic contributions to LC in an underrepresented admixed population."
Article | Thread
Altered TRPM3-Dependent Cytosolic and Mitochondrial Calcium Influx in Natural Killer Cells of Post-COVID-19 Condition Patients — Magawa et al
"this study provided new evidence that demonstrate that TRPM3 ion channel dysfunction has a significant impact on cytoplasmic and Ca2+ mobilization in the mitochondria in PCC." "In addition, this study highlighted potential overcompensatory mechanisms in the mitochondria, possibly arising from altered Ca2+ signalling processes."
Article | Thread
Estimating the Quality-Adjusted Life-Year Loss due to Fatal and Nonfatal COVID-19 Outcomes across US States and Counties, July 2020 to December 2022 — Mikdashi et al
"The quality-of-life burden of nonfatal COVID-19 outcomes, particularly long COVID, is on the same scale as that of major chronic and infectious diseases."
Article | Thread
Item comprehension and content coverage of patient-reported outcome measures for long COVID: a qualitative study — Zigler et al
"Overall, these results support the use of this set of modified PROMs in the phase 2 RECOVER-CT trials."
Article | Thread
Efficacy of a psychotherapeutic group intervention for patients with Post-COVID-19 condition: a randomized controlled trial (PsyLoCo study) — Rometsch et al
"In this exploratory randomized controlled trial, the intervention did not show significant superiority over the control condition"
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 27th July 2026
Part 1 of 2 parts
News, advocacy and articles
UK Forward ME Briefing Paper on Clinical assessment of people with very severe ME/CFS
This paper has been well received by the DHSC but unfortunately any implementation has been delayed until after April 2027. This paper may also be useful for people with very severe ME/CFS and their carers when they have to deal with health professionals and hospital services.
Article | Briefing Paper (PDF) | Thread
UK ME Association NHS England’s ME/CFS e-Learning Modules FOI Results reveal lack of uptake
@Lucibee submitted Freedom of Information requests to find out how many people with government, NHS, academic and other email addresses have accessed or completed these learning modules. Only a tiny fraction of NHS staff and other relevant people have accessed and completed the modules, especially the severe ME/CFS modules.
Article | Thread
UK Action for ME ME: A Guide for Educators
A useful document outlining the symptoms and impact of ME/CFS, and adaptations and support that teachers and schools should provide for pupils with ME/CFS.
Article | Thread
Mike's European Marathons Iceland
Before attending Reykjavik Marathon to raise money for research into ME, Mike Harley has interviewed Fanny and Lilja about the situation for ME/CFS and Long Covid patients in Iceland.
Article l Fundraising l Thread
USA #MEAction "But you don't look sick." New Medicaid rules deepen stigma against people with ME and Long COVID.
The #MEAction group has submitted an official public comment to the Centers for Medicare and Medicaid Services (CMS) about their new Medicaid work requirements regulations.
Article | Thread
Long Covid Advocacy 101: 03. The Biopsychosocial Model
A thorough and critical look at the origin of the biopsychosocial model and its devastating consequences. The article has an excellent visual summary of its key points.
Article l Thread
Unfixed Media Unbound: Illness is not the end of dance
"Unbound is a short dance film created by individuals living with ME/CFS and/or Long COVID, exploring the tension between constraint and expression, stillness and vitality." About 6 1/2 minutes long.
Video | Website | Thread
...........
Coming events
Bateman Horne Center - Free Online Support Groups
Tuesday, August 4, 1:00 - 2:00 PM Mountain Time
Topic: Caretaking While Chronically Ill: Parenting or Caring for Aging Family Members
Tuesday, August 18, 1:00 - 2:00 PM Mountain Time
Topic: Dealing with the Harsh Inner Critic
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
ISLC-PAIS Conference in Amsterdam
August 26 - 29
On Saturday 29 August, a Patient Conference Recap will take place, designed specifically for people living with PAIS, including Long COVID. More information coming soon.
Website l Thread
...........
Research news and commentary
Solve ME Research 1st Roundup: July 2026
Summary listing highlights from several ME/CFS and Long Covid research studies supported by Ramsay Research Grants.
Article | Thread
..........
Go to the next post for the section on research.
Part 1 of 2 parts
News, advocacy and articles
UK Forward ME Briefing Paper on Clinical assessment of people with very severe ME/CFS
This paper has been well received by the DHSC but unfortunately any implementation has been delayed until after April 2027. This paper may also be useful for people with very severe ME/CFS and their carers when they have to deal with health professionals and hospital services.
Article | Briefing Paper (PDF) | Thread
UK ME Association NHS England’s ME/CFS e-Learning Modules FOI Results reveal lack of uptake
@Lucibee submitted Freedom of Information requests to find out how many people with government, NHS, academic and other email addresses have accessed or completed these learning modules. Only a tiny fraction of NHS staff and other relevant people have accessed and completed the modules, especially the severe ME/CFS modules.
Article | Thread
UK Action for ME ME: A Guide for Educators
A useful document outlining the symptoms and impact of ME/CFS, and adaptations and support that teachers and schools should provide for pupils with ME/CFS.
Article | Thread
Mike's European Marathons Iceland
Before attending Reykjavik Marathon to raise money for research into ME, Mike Harley has interviewed Fanny and Lilja about the situation for ME/CFS and Long Covid patients in Iceland.
Article l Fundraising l Thread
USA #MEAction "But you don't look sick." New Medicaid rules deepen stigma against people with ME and Long COVID.
The #MEAction group has submitted an official public comment to the Centers for Medicare and Medicaid Services (CMS) about their new Medicaid work requirements regulations.
Article | Thread
Long Covid Advocacy 101: 03. The Biopsychosocial Model
A thorough and critical look at the origin of the biopsychosocial model and its devastating consequences. The article has an excellent visual summary of its key points.
Article l Thread
Unfixed Media Unbound: Illness is not the end of dance
"Unbound is a short dance film created by individuals living with ME/CFS and/or Long COVID, exploring the tension between constraint and expression, stillness and vitality." About 6 1/2 minutes long.
Video | Website | Thread
...........
Coming events
Bateman Horne Center - Free Online Support Groups
Tuesday, August 4, 1:00 - 2:00 PM Mountain Time
Topic: Caretaking While Chronically Ill: Parenting or Caring for Aging Family Members
Tuesday, August 18, 1:00 - 2:00 PM Mountain Time
Topic: Dealing with the Harsh Inner Critic
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
ISLC-PAIS Conference in Amsterdam
August 26 - 29
On Saturday 29 August, a Patient Conference Recap will take place, designed specifically for people living with PAIS, including Long COVID. More information coming soon.
Website l Thread
...........
Research news and commentary
Solve ME Research 1st Roundup: July 2026
Summary listing highlights from several ME/CFS and Long Covid research studies supported by Ramsay Research Grants.
Article | Thread
..........
Go to the next post for the section on research.
Week beginning 27th July 2026
Part 2 of 2 parts
Research
ME/CFS research
Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest — Charlton et al
"Long-term (60 days) bed rest induced severe muscle atrophy, which was not observed in patients" "Instead, both patient groups displayed a lower proportion of type I fibers, whereas only patients with ME/CFS exhibited lower capillary-to-fiber ratios and type I specific atrophy." "the lower oxidative phosphorylation capacity in both patient groups did not correlate with 2, in contrast to bed rest participants, suggesting that physiological impairments distinct from inactivity drive reduced exercise capacity in patients."
Article | Thread
ME/CFS and Long COVID Demonstrate Similar Bioenergetic Impairment and Recovery Failure on Two-Day Cardiopulmonary Exercise Testing — Davenport et al
"In both males and females, VO2 and workload were significantly different between patients and non-disabled controls, and with larger effect sizes at [Ventilatory Anaerobic Threshold] than at maximal exertion."
Article | Thread
Central origin of fatigability in Myalgic encephalomyelitis/chronic fatigue syndrome revealed by multimodal neuroimaging — Bedard et al
"Our most novel results relate to the lack of neuromuscular adaptation in ME/CFS compared to the [Healthy Volunteers]." "ME/CFS did not change their muscular and brain activity as measured via DI, EEG, BOLD, and CMC, and as a result, they demonstrated fatigue earlier than HV"
Article | Thread
Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement — Hermisson et al
"The guide is based on a compilation of practice-oriented measures that have proven effective from the perspective of patients and family caregivers." "These were professionally categorized and further developed by experts in nursing science, physical therapy, general medicine and public health." "Palliative care specialists from various professional fields have expertise that can support people with severe ME/CFS."
Article | Thread
Circulating extracellular vesicles-microRNAs as potential biomarkers for the identification of ME/CFS: differentiating fatigue-related conditions — Eguchi et al
"Circulating EVs from ME/CFS (n = 6), ICF (n = 6), and depression (n = 8) patients were analyzed using flow cytometry, nano-tracking analysis, and comprehensive miRNA analysis."
Article | Thread
Sex- and menopause-related differences in immune and gastrointestinal symptom architecture in ME/CFS: evidence from factor analysis and structural equation modeling — Habermann-Horstmeier and Horstmeier
"Women demonstrate two partially separable but related symptom domains, whereas men show a more integrated immunegastrointestinal architecture." "menopausal status appears to selectively modulate immune-related symptom expression while leaving gastrointestinal symptom patterns comparatively stable."
Article | Thread
Long Covid research
Longitudinal immune profiling of Long COVID phenotypes reveals a shared persistent IL-17F-centered immune signature — Kumar-Singh et al
"Importantly, the persistence of these highly coordinated immune alterations occurred in parallel with the normalization of conventional acute-phase inflammatory markers." "This divergence indicates a fundamental pathophysiological transition: chronic symptom persistence in fatigue-like LC is likely driven by a self-sustaining, maladaptive tissue-repair program rather than an unresolved acute inflammatory state."
Preprint | Thread
Beneficial Effect of COVID-19 Vaccination on Decreased Pulmonary Vascular and Airway Volumes of Patients with Long-COVID Syndrome — Samaha et al
"findings indicate that patients with long COVID exhibit persistent reductions in pulmonary blood and airway volumes despite normal conventional imaging and pulmonary function tests, suggesting the presence of subtle microvascular and small-airway abnormalities"
Article | Thread
Persistent cytolytic CD8+ T cells recognize SARS-CoV-2 and herpesvirus epitopes in long COVID — Ma et al
"Our findings support the hypothesis that LC entails a prolonged cytolytic CD8+ T cell response against SARS-CoV-2 and resident herpesviruses."
Article | Thread
Associations Between Pre-Quarantine Exercise and Persistent Symptoms After SARS-CoV-2 Infection — Schmidt et al
"In our study, neither [Physical Activity] intensity nor duration showed an association with the presence or absence of long-term symptoms."
Article | Thread
Baroreflex sensitivity impairment in Long-COVID patients: a diagnostic tool for classifying the autonomic dysfunction spectrum — Sáinz-Jiménez et al
"We identified a significant decrease in the BRS function in patients with Long-COVID, which was more pronounced during the orthostatic position and was accompanied by a higher heart rate and lower heart rate variability."
Article | Thread
Wearable Heart Rate Variability Monitoring, Autonomic Dysfunction and Post-exertional Malaise in Long COVID: An Observational Study — Ruijgt et al
"Our findings provide further evidence of physiological alterations during and after physical exercise in patients with long COVID that are distinct from healthy controls." "Autonomic dysfunction and impaired recovery in HRV in patients with long COVID contribute to our understanding of abnormal exercise responses in long COVID, and likely also patients with […] ME/ CFS)"
Article | Thread
Integrated care pathway in individuals with Long COVID: STIMULATE-ICP, a cluster-randomized, phase 3 trial
"we report an overall decrease in reported fatigue with specialist LC care. Additional diagnostic information from multi-organ MRI did not impact fatigue or quality of life at 12 or 24 weeks." "There was no additional improvement in fatigue with digital rehabilitation versus usual care at 12 weeks, but a small subsequent improvement in the secondary outcome of fatigue and quality of life at 24 weeks was seen, which is of uncertain clinical significance."
Article | Thread
Neuroretinal Alterations in Persistent COVID-19: A Two-Year OCT Follow-Up — Artiaga et al
"The results of this study suggest the presence of region-specific inner retinal changes in PC patients when compared with control subjects."
Article | Thread
Long COVID symptom profiles, workforce participation, and working hours among adults in England: a population-based cohort study — Gravio et al
"participants with unresolved Long COVID had 38% lower odds of being in paid work at follow-up" "These results suggest potential long-term disruptions to employment in people with Long COVID contributing to productivity losses and workforce changes."
Article | Thread
Long COVID affects working memory: assessment using a single rapid online test — Asghar et al
"Our results link working memory deficits to “brain fog,” a hallmark of long COVID" "Objective memory scores negatively correlated with brain fog severity, which was highest in the diagnosed group, followed by self-reported and non-long COVID groups."
Article | Thread
The Burden of Long-COVID-19 Among Pediatric Subjects: A Systematic Review and Meta-Analysis — Cioni et al
"52 cohort studies and 960,089 subjects were included. The pooled rate of LC was 18.1% […] ranging from 16.2% to 21.6%, according to NIH or WHO diagnostic criteria, respectively." "Fatigue, respiratory and neurological symptoms were most commonly reported by LC patients."
Article | Thread
Characterization and Validation of EHR Computable Phenotypes for Long COVID Using Patient-Reported Symptoms: Insights from the Nationwide RECOVER Program — Castro et al
"Despite the undercoding of Long COVID diagnoses, a computable phenotype algorithm integrating demographics, symptoms, diagnoses, medications, procedures, laboratory results, and vital signs demonstrated high discrimination and calibration."
Article | Thread
Immunotherapies for postural orthostatic tachycardia syndrome, other common autonomic disorders, and Long COVID: current state and future direction — Blitshteyn et al
"In this narrative review, we summarize the literature available on the topic of immunotherapies for POTS, other common autonomic disorders, and Long COVID." "We also highlight the need for large, multicenter, placebo-controlled trials of immunoglobulin, plasmapheresis, intermittent corticosteroids, and other repurposed immunotherapies in patients with common autonomic disorders who have significant functional impairment."
Article | Thread
The Use of a Handheld Non-Invasive Vagal Nerve Stimulation (nVNS) Device for the Treatment of Long COVID: A Pilot Randomized Controlled Trial — Ganesh et al
"neither primary or secondary outcomes reached statistical significance"
Article | Thread
Related research
The genetic architecture of fibromyalgia across 2.5 million individuals — Kerrebijn et al
"we identified 26 genetic risk loci for fibromyalgia, providing robust characterization of its genetic architecture. These findings establish a firm biological basis for a long-debated condition." "Despite several-fold-higher prevalence in females, we found no sex difference in the genetic architecture of fibromyalgia."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
Part 2 of 2 parts
Research
ME/CFS research
Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest — Charlton et al
"Long-term (60 days) bed rest induced severe muscle atrophy, which was not observed in patients" "Instead, both patient groups displayed a lower proportion of type I fibers, whereas only patients with ME/CFS exhibited lower capillary-to-fiber ratios and type I specific atrophy." "the lower oxidative phosphorylation capacity in both patient groups did not correlate with 2, in contrast to bed rest participants, suggesting that physiological impairments distinct from inactivity drive reduced exercise capacity in patients."
Article | Thread
ME/CFS and Long COVID Demonstrate Similar Bioenergetic Impairment and Recovery Failure on Two-Day Cardiopulmonary Exercise Testing — Davenport et al
"In both males and females, VO2 and workload were significantly different between patients and non-disabled controls, and with larger effect sizes at [Ventilatory Anaerobic Threshold] than at maximal exertion."
Article | Thread
Central origin of fatigability in Myalgic encephalomyelitis/chronic fatigue syndrome revealed by multimodal neuroimaging — Bedard et al
"Our most novel results relate to the lack of neuromuscular adaptation in ME/CFS compared to the [Healthy Volunteers]." "ME/CFS did not change their muscular and brain activity as measured via DI, EEG, BOLD, and CMC, and as a result, they demonstrated fatigue earlier than HV"
Article | Thread
Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement — Hermisson et al
"The guide is based on a compilation of practice-oriented measures that have proven effective from the perspective of patients and family caregivers." "These were professionally categorized and further developed by experts in nursing science, physical therapy, general medicine and public health." "Palliative care specialists from various professional fields have expertise that can support people with severe ME/CFS."
Article | Thread
Circulating extracellular vesicles-microRNAs as potential biomarkers for the identification of ME/CFS: differentiating fatigue-related conditions — Eguchi et al
"Circulating EVs from ME/CFS (n = 6), ICF (n = 6), and depression (n = 8) patients were analyzed using flow cytometry, nano-tracking analysis, and comprehensive miRNA analysis."
Article | Thread
Sex- and menopause-related differences in immune and gastrointestinal symptom architecture in ME/CFS: evidence from factor analysis and structural equation modeling — Habermann-Horstmeier and Horstmeier
"Women demonstrate two partially separable but related symptom domains, whereas men show a more integrated immunegastrointestinal architecture." "menopausal status appears to selectively modulate immune-related symptom expression while leaving gastrointestinal symptom patterns comparatively stable."
Article | Thread
Long Covid research
Longitudinal immune profiling of Long COVID phenotypes reveals a shared persistent IL-17F-centered immune signature — Kumar-Singh et al
"Importantly, the persistence of these highly coordinated immune alterations occurred in parallel with the normalization of conventional acute-phase inflammatory markers." "This divergence indicates a fundamental pathophysiological transition: chronic symptom persistence in fatigue-like LC is likely driven by a self-sustaining, maladaptive tissue-repair program rather than an unresolved acute inflammatory state."
Preprint | Thread
Beneficial Effect of COVID-19 Vaccination on Decreased Pulmonary Vascular and Airway Volumes of Patients with Long-COVID Syndrome — Samaha et al
"findings indicate that patients with long COVID exhibit persistent reductions in pulmonary blood and airway volumes despite normal conventional imaging and pulmonary function tests, suggesting the presence of subtle microvascular and small-airway abnormalities"
Article | Thread
Persistent cytolytic CD8+ T cells recognize SARS-CoV-2 and herpesvirus epitopes in long COVID — Ma et al
"Our findings support the hypothesis that LC entails a prolonged cytolytic CD8+ T cell response against SARS-CoV-2 and resident herpesviruses."
Article | Thread
Associations Between Pre-Quarantine Exercise and Persistent Symptoms After SARS-CoV-2 Infection — Schmidt et al
"In our study, neither [Physical Activity] intensity nor duration showed an association with the presence or absence of long-term symptoms."
Article | Thread
Baroreflex sensitivity impairment in Long-COVID patients: a diagnostic tool for classifying the autonomic dysfunction spectrum — Sáinz-Jiménez et al
"We identified a significant decrease in the BRS function in patients with Long-COVID, which was more pronounced during the orthostatic position and was accompanied by a higher heart rate and lower heart rate variability."
Article | Thread
Wearable Heart Rate Variability Monitoring, Autonomic Dysfunction and Post-exertional Malaise in Long COVID: An Observational Study — Ruijgt et al
"Our findings provide further evidence of physiological alterations during and after physical exercise in patients with long COVID that are distinct from healthy controls." "Autonomic dysfunction and impaired recovery in HRV in patients with long COVID contribute to our understanding of abnormal exercise responses in long COVID, and likely also patients with […] ME/ CFS)"
Article | Thread
Integrated care pathway in individuals with Long COVID: STIMULATE-ICP, a cluster-randomized, phase 3 trial
"we report an overall decrease in reported fatigue with specialist LC care. Additional diagnostic information from multi-organ MRI did not impact fatigue or quality of life at 12 or 24 weeks." "There was no additional improvement in fatigue with digital rehabilitation versus usual care at 12 weeks, but a small subsequent improvement in the secondary outcome of fatigue and quality of life at 24 weeks was seen, which is of uncertain clinical significance."
Article | Thread
Neuroretinal Alterations in Persistent COVID-19: A Two-Year OCT Follow-Up — Artiaga et al
"The results of this study suggest the presence of region-specific inner retinal changes in PC patients when compared with control subjects."
Article | Thread
Long COVID symptom profiles, workforce participation, and working hours among adults in England: a population-based cohort study — Gravio et al
"participants with unresolved Long COVID had 38% lower odds of being in paid work at follow-up" "These results suggest potential long-term disruptions to employment in people with Long COVID contributing to productivity losses and workforce changes."
Article | Thread
Long COVID affects working memory: assessment using a single rapid online test — Asghar et al
"Our results link working memory deficits to “brain fog,” a hallmark of long COVID" "Objective memory scores negatively correlated with brain fog severity, which was highest in the diagnosed group, followed by self-reported and non-long COVID groups."
Article | Thread
The Burden of Long-COVID-19 Among Pediatric Subjects: A Systematic Review and Meta-Analysis — Cioni et al
"52 cohort studies and 960,089 subjects were included. The pooled rate of LC was 18.1% […] ranging from 16.2% to 21.6%, according to NIH or WHO diagnostic criteria, respectively." "Fatigue, respiratory and neurological symptoms were most commonly reported by LC patients."
Article | Thread
Characterization and Validation of EHR Computable Phenotypes for Long COVID Using Patient-Reported Symptoms: Insights from the Nationwide RECOVER Program — Castro et al
"Despite the undercoding of Long COVID diagnoses, a computable phenotype algorithm integrating demographics, symptoms, diagnoses, medications, procedures, laboratory results, and vital signs demonstrated high discrimination and calibration."
Article | Thread
Immunotherapies for postural orthostatic tachycardia syndrome, other common autonomic disorders, and Long COVID: current state and future direction — Blitshteyn et al
"In this narrative review, we summarize the literature available on the topic of immunotherapies for POTS, other common autonomic disorders, and Long COVID." "We also highlight the need for large, multicenter, placebo-controlled trials of immunoglobulin, plasmapheresis, intermittent corticosteroids, and other repurposed immunotherapies in patients with common autonomic disorders who have significant functional impairment."
Article | Thread
The Use of a Handheld Non-Invasive Vagal Nerve Stimulation (nVNS) Device for the Treatment of Long COVID: A Pilot Randomized Controlled Trial — Ganesh et al
"neither primary or secondary outcomes reached statistical significance"
Article | Thread
Related research
The genetic architecture of fibromyalgia across 2.5 million individuals — Kerrebijn et al
"we identified 26 genetic risk loci for fibromyalgia, providing robust characterization of its genetic architecture. These findings establish a firm biological basis for a long-debated condition." "Despite several-fold-higher prevalence in females, we found no sex difference in the genetic architecture of fibromyalgia."
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky