News in Brief - October 2026
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Week beginning 5th October 2026
News, advocacy and articles
The Sick Times Biological pathways and mechanistic trials centred at new Long COVID conference in Amsterdam
David Tuller was present at a recent large Long Covid conference in Amsterdam and has written this report. The conference was organised by The International Society for Long COVID and Post-Acute Infections Syndromes.
Article l Thread
Solve ME Applications Open for 2026 Ramsay Research Grants
The Ramsay Research Grant program "supports innovative, early-stage research aimed at advancing the biological understanding of infection-associated chronic conditions and illnesses (IACCIs), with a particular focus on ME/CFS and Long Covid." Applications accepted through Friday, Nov. 13.
Article | Thread
The Sick Times Kids with Long COVID co-created their own superhero comic book
The book, called Long Covid Superheroes, showcases "the bravery of asking for help, resting, and being compassionate with yourself and others."
Article | Thread
Trial by Error by David Tuller Springer Nature Removes Description of "Fatigue" Patients as "Combative" and "Reproachful" - UPDATED
A German paper on chronic fatigue syndrome published by Springer Nature contained derogative language about patients. This resulted into a joint statement with objection from many healthcare providers and scientists. It later turned out the characterisations had been added by a psychiatrist who was responsible editor of the project the paper was part of.
Article l Thread
.......
Coming events
Bateman Horne Center Free Online Support Group
Tuesday, October 20, 1 - 2 pm MDT
Topic: Figuring Out Relationships while Chronically Ill
Advance registration required, registration link shows time in your time zone.
Registration | Thread
Solve ME Webinar The SIGNAL Study: Using Home-Based Treatments to Advance ME/CFS and Long Covid Research
Tuesday, November 10, 3-4 pm Pacific Time / 6-7 pm Eastern Time
Announcement | Thread
.......
Research news and articles
Germany
The German Society for ME/CFS (Deutsche Gesellschaft für ME/CFS) has its own research program to fund smaller exploratory studies.€30,000 is awarded each year. Only researchers affiliated with an institution in Germany can apply. The deadline for applications is 15 November.
Article (German) | Thread
USA - NIH RECOVER New pathobiology studies look to accelerate RECOVER’s progress
"Researchers aim to build on past findings in ways that can help inform future clinical decision-making for people at high risk of or already experiencing Long COVID."
Article | Thread
.......
Research
ME/CFS research
searchMECFS: An online, interactive platform to facilitate secondary use of biospecimens and associated research data from myalgic encephalomyelitis studies — Barnette et al
"This publication introduces searchMECFS, a free, interactive online platform developed by the Data Management and Coordinating Center of the ME/CFS Research Network, with funding from the National Institutes of Health."
Article | Thread
Exploratory clinical and immunological changes following Tixagevimab/Cilgavimab administration in immunodeficient patients with SARS-CoV-2-associated ME/CFS and persistent circulating spike protein — SEIDEL et al
"no conclusive reduction in circulating spike protein or improvement in clinical outcomes was demonstrated."
Article | Thread
Characterizing Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Symptom Burden, Functional Impairment, and Comparison With Adults in the Multi-Site Clinical Assessment of ME/CFS (MCAM) Study — Weaver et al
"Educational disruption was particularly marked. Almost two-thirds of participants received homebound or homeschool instruction, nearly 90% missed school because of illness, and most reported limitations in educational, social, and recreational activities."
Article | Thread
Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis — de Canson
"this understanding is limited, in virtue of the fact that much of the scientific research required to fully elucidate and solve ME cannot be done by people with ME, given the substantial institutional, material, and technical resources it demands."
Article | Thread
Long Covid research
Choroid plexus enlargement in Post-COVID-19 syndrome is linked to Serum-Induced cytokine secretion in human hippocampal progenitors — Martins et al
"By demonstrating that CP enlargement tracks functional immune effects in human neural cells rather than peripheral cytokine concentrations, our findings highlight the importance of moving beyond circulating biomarkers to understand immune–brain coupling in post-infectious syndromes."
Article | Thread
Handgrip strength parameters as predictors of post-COVID syndrome severity and muscle weakness in an observational study — Wallraven et al
"Patients with ME/CFS exhibited lower mean HGS (p = 0.031), greater fatigability (p = 0.042), and poorer recovery (p = 0.048) compared with patients without ME/CFS." "Furthermore, HGS parameters were significantly correlated with PCS severity and patient-reported outcome measures"
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
The Sick Times Biological pathways and mechanistic trials centred at new Long COVID conference in Amsterdam
David Tuller was present at a recent large Long Covid conference in Amsterdam and has written this report. The conference was organised by The International Society for Long COVID and Post-Acute Infections Syndromes.
Article l Thread
Solve ME Applications Open for 2026 Ramsay Research Grants
The Ramsay Research Grant program "supports innovative, early-stage research aimed at advancing the biological understanding of infection-associated chronic conditions and illnesses (IACCIs), with a particular focus on ME/CFS and Long Covid." Applications accepted through Friday, Nov. 13.
Article | Thread
The Sick Times Kids with Long COVID co-created their own superhero comic book
The book, called Long Covid Superheroes, showcases "the bravery of asking for help, resting, and being compassionate with yourself and others."
Article | Thread
Trial by Error by David Tuller Springer Nature Removes Description of "Fatigue" Patients as "Combative" and "Reproachful" - UPDATED
A German paper on chronic fatigue syndrome published by Springer Nature contained derogative language about patients. This resulted into a joint statement with objection from many healthcare providers and scientists. It later turned out the characterisations had been added by a psychiatrist who was responsible editor of the project the paper was part of.
Article l Thread
.......
Coming events
Bateman Horne Center Free Online Support Group
Tuesday, October 20, 1 - 2 pm MDT
Topic: Figuring Out Relationships while Chronically Ill
Advance registration required, registration link shows time in your time zone.
Registration | Thread
Solve ME Webinar The SIGNAL Study: Using Home-Based Treatments to Advance ME/CFS and Long Covid Research
Tuesday, November 10, 3-4 pm Pacific Time / 6-7 pm Eastern Time
Announcement | Thread
.......
Research news and articles
Germany
The German Society for ME/CFS (Deutsche Gesellschaft für ME/CFS) has its own research program to fund smaller exploratory studies.€30,000 is awarded each year. Only researchers affiliated with an institution in Germany can apply. The deadline for applications is 15 November.
Article (German) | Thread
USA - NIH RECOVER New pathobiology studies look to accelerate RECOVER’s progress
"Researchers aim to build on past findings in ways that can help inform future clinical decision-making for people at high risk of or already experiencing Long COVID."
Article | Thread
.......
Research
ME/CFS research
searchMECFS: An online, interactive platform to facilitate secondary use of biospecimens and associated research data from myalgic encephalomyelitis studies — Barnette et al
"This publication introduces searchMECFS, a free, interactive online platform developed by the Data Management and Coordinating Center of the ME/CFS Research Network, with funding from the National Institutes of Health."
Article | Thread
Exploratory clinical and immunological changes following Tixagevimab/Cilgavimab administration in immunodeficient patients with SARS-CoV-2-associated ME/CFS and persistent circulating spike protein — SEIDEL et al
"no conclusive reduction in circulating spike protein or improvement in clinical outcomes was demonstrated."
Article | Thread
Characterizing Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Symptom Burden, Functional Impairment, and Comparison With Adults in the Multi-Site Clinical Assessment of ME/CFS (MCAM) Study — Weaver et al
"Educational disruption was particularly marked. Almost two-thirds of participants received homebound or homeschool instruction, nearly 90% missed school because of illness, and most reported limitations in educational, social, and recreational activities."
Article | Thread
Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis — de Canson
"this understanding is limited, in virtue of the fact that much of the scientific research required to fully elucidate and solve ME cannot be done by people with ME, given the substantial institutional, material, and technical resources it demands."
Article | Thread
Long Covid research
Choroid plexus enlargement in Post-COVID-19 syndrome is linked to Serum-Induced cytokine secretion in human hippocampal progenitors — Martins et al
"By demonstrating that CP enlargement tracks functional immune effects in human neural cells rather than peripheral cytokine concentrations, our findings highlight the importance of moving beyond circulating biomarkers to understand immune–brain coupling in post-infectious syndromes."
Article | Thread
Handgrip strength parameters as predictors of post-COVID syndrome severity and muscle weakness in an observational study — Wallraven et al
"Patients with ME/CFS exhibited lower mean HGS (p = 0.031), greater fatigability (p = 0.042), and poorer recovery (p = 0.048) compared with patients without ME/CFS." "Furthermore, HGS parameters were significantly correlated with PCS severity and patient-reported outcome measures"
Article | Thread
............
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 12th October 2026
News - advocacy and research
UK BBC The Olympic sprinter now bedbound for 22 hours a day [ME/CFS]
"Beth Dobbin is so determined to raise awareness of the illness that has decimated her life that she is speaking out, despite knowing it could trigger a brutal deterioration in her health." Excellent article with 2:47 minute video.
Article with link to video | Thread
Austria
The Vienna Science and Technology Fund (WWTF), together with the WE&ME Foundation, is awarding two Consolidation Grants of around one million euros each. The Mayor Michael Ludwig presented the projects on Tuesday, together with WWTF President Michael Häupl and Gerhard Ströck, a board member of the WE&ME Foundation, in the ballroom of Vienna City Hall.
Article | Thread
UK PRIME Symposium
"Researchers, clinicians, industry representatives, charities and people with lived experience came together at the inaugural PRIME International Symposium on 28 and 29 September 2026, a two-day event focused on accelerating progress in ME research through collaboration and shared learning." The 18 videos are now available.
Videos | Article | Thread
.......
Coming events
USA - Solve ME 2026 Community Address: Shaping What Comes Next
Monday, October 20 at 1 PM PT / 4 PM ET
A live conversation to discuss "science and advocacy as we approach the midterms." It will be recorded for later viewing.
Announcement | Thread
UK PRIME Webinar 4 - The Neurology of ME/CFS
Wednesday 28th October, 2-5 pm GMT, online via Zoom
The list of speakers and a link to the webinar programme can be found in the announcement.
Announcement | Registration | Thread
Conference in Iceland - Bridge between continents
Thursday, 29th October
The ME Society of Iceland in collaboration with other groups is holding a conference to bring together "leading Icelandic and international experts in ME, Long COVID, Environmental illness and POTS" to share knowledge from research and clinical practice. The conference will be held in English and will be live-streamed. Registration closes Oct 20th.
Announcement l Program | Thread
RECOVER Treating Long COVID (TLC) - 3rd Annual Hybrid Workshop
November 4-5 in Bethesda, MD (In-Person or Virtual)
Updates on clinical trials and emerging discoveries in Long COVID research
Announcement | Registration | Thread
.......
Research
ME/CFS research
iPSC-derived myogenic progenitor cells from people with ME/CFS reveal altered genes and pathways with drug repurposing potential — Nguyen et al
"Pathway analysis identified 73 significantly enriched pathways, 96% of which were downregulated in ME/CFS [myogenic progenitors], including pathways related to cell-cycle regulation, DNA replication, immune responses, and muscle cytoskeletal regulation."
Article | Thread
Identification of SGK1 as a candidate regulator associated with myeloid cell senescence in ME/CFS: An integrative transcriptomic and experimental study — Jin et al
"[…] suggests that monocytes and related myeloid populations may represent one immune compartment associated with aging-related alterations in ME/CFS. However, this observation should be interpreted cautiously because the single-cell analysis performed in the present study was exploratory and based on representative samples rather than a population-level validation cohort."
Article | Thread
Measures of Overall Illness Severity and Burden for ME/CFS: A Scoping Review — Cripe et al
"Our review indicates that studies vary widely in how illness severity and burden in ME/CFS are operationalized."
Article | Thread
Long Covid research
Persistently activated virus-specific CD8 T cells indicate antigen-driven immune aberrations in long COVID — Painter et al
"These features are consistent with the presence of exhausted or partially exhausted spike-specific CD8 T cells in a subset of patients with LC and are indicative of chronic stimulation by a persistent reservoir of SARS-CoV2."
Preprint | Thread
Antiviral Antibody Fc Dysfunction Is Linked to Increased IgG1 Fucosylation in Long COVID — Ukey et al
"Our findings thus provide a potential antibody-based mechanism by which an apparently robust humoral response could nevertheless be functionally inadequate for efficient antigen clearance."
Preprint | Thread
Long COVID is associated with lipoxygenase-catalyzed metabolism of essential polyunsaturated fatty acids — Moss et al
"we present data demonstrating that plasma 12-LO-derived metabolites were significantly increased during acute SARS-CoV2 infection in participants who went on to develop LC, and that this […] was independent of initial infection severity."
Article | Thread
Oral Fluid Inflammatory Biomarker Profile in Long COVID: Evaluation of Oral Active and Total MMP-8, MMP-9, and TIMP-1 in Relation to BMI and Disease Status — Aji et al
"These findings suggest altered oral protease regulation in LC, while the concurrent increase in TIMP-1 may reflect a compensatory antiprotease response."
Article | Thread
Sputum and oral microbiota profiles are associated with long COVID severity and phenotype post-hospitalisation: a UK multicentre, prospective cohort study — Headley et al
"the study recruited patients aged 18 years or older who were discharged from one of 83 NHS hospitals in the UK" "We observed distinct oral and sputum microbiota profiles with very severe ongoing health impairments and with Long COVID subgroups."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
News - advocacy and research
UK BBC The Olympic sprinter now bedbound for 22 hours a day [ME/CFS]
"Beth Dobbin is so determined to raise awareness of the illness that has decimated her life that she is speaking out, despite knowing it could trigger a brutal deterioration in her health." Excellent article with 2:47 minute video.
Article with link to video | Thread
Austria
The Vienna Science and Technology Fund (WWTF), together with the WE&ME Foundation, is awarding two Consolidation Grants of around one million euros each. The Mayor Michael Ludwig presented the projects on Tuesday, together with WWTF President Michael Häupl and Gerhard Ströck, a board member of the WE&ME Foundation, in the ballroom of Vienna City Hall.
Article | Thread
UK PRIME Symposium
"Researchers, clinicians, industry representatives, charities and people with lived experience came together at the inaugural PRIME International Symposium on 28 and 29 September 2026, a two-day event focused on accelerating progress in ME research through collaboration and shared learning." The 18 videos are now available.
Videos | Article | Thread
.......
Coming events
USA - Solve ME 2026 Community Address: Shaping What Comes Next
Monday, October 20 at 1 PM PT / 4 PM ET
A live conversation to discuss "science and advocacy as we approach the midterms." It will be recorded for later viewing.
Announcement | Thread
UK PRIME Webinar 4 - The Neurology of ME/CFS
Wednesday 28th October, 2-5 pm GMT, online via Zoom
The list of speakers and a link to the webinar programme can be found in the announcement.
Announcement | Registration | Thread
Conference in Iceland - Bridge between continents
Thursday, 29th October
The ME Society of Iceland in collaboration with other groups is holding a conference to bring together "leading Icelandic and international experts in ME, Long COVID, Environmental illness and POTS" to share knowledge from research and clinical practice. The conference will be held in English and will be live-streamed. Registration closes Oct 20th.
Announcement l Program | Thread
RECOVER Treating Long COVID (TLC) - 3rd Annual Hybrid Workshop
November 4-5 in Bethesda, MD (In-Person or Virtual)
Updates on clinical trials and emerging discoveries in Long COVID research
Announcement | Registration | Thread
.......
Research
ME/CFS research
iPSC-derived myogenic progenitor cells from people with ME/CFS reveal altered genes and pathways with drug repurposing potential — Nguyen et al
"Pathway analysis identified 73 significantly enriched pathways, 96% of which were downregulated in ME/CFS [myogenic progenitors], including pathways related to cell-cycle regulation, DNA replication, immune responses, and muscle cytoskeletal regulation."
Article | Thread
Identification of SGK1 as a candidate regulator associated with myeloid cell senescence in ME/CFS: An integrative transcriptomic and experimental study — Jin et al
"[…] suggests that monocytes and related myeloid populations may represent one immune compartment associated with aging-related alterations in ME/CFS. However, this observation should be interpreted cautiously because the single-cell analysis performed in the present study was exploratory and based on representative samples rather than a population-level validation cohort."
Article | Thread
Measures of Overall Illness Severity and Burden for ME/CFS: A Scoping Review — Cripe et al
"Our review indicates that studies vary widely in how illness severity and burden in ME/CFS are operationalized."
Article | Thread
Long Covid research
Persistently activated virus-specific CD8 T cells indicate antigen-driven immune aberrations in long COVID — Painter et al
"These features are consistent with the presence of exhausted or partially exhausted spike-specific CD8 T cells in a subset of patients with LC and are indicative of chronic stimulation by a persistent reservoir of SARS-CoV2."
Preprint | Thread
Antiviral Antibody Fc Dysfunction Is Linked to Increased IgG1 Fucosylation in Long COVID — Ukey et al
"Our findings thus provide a potential antibody-based mechanism by which an apparently robust humoral response could nevertheless be functionally inadequate for efficient antigen clearance."
Preprint | Thread
Long COVID is associated with lipoxygenase-catalyzed metabolism of essential polyunsaturated fatty acids — Moss et al
"we present data demonstrating that plasma 12-LO-derived metabolites were significantly increased during acute SARS-CoV2 infection in participants who went on to develop LC, and that this […] was independent of initial infection severity."
Article | Thread
Oral Fluid Inflammatory Biomarker Profile in Long COVID: Evaluation of Oral Active and Total MMP-8, MMP-9, and TIMP-1 in Relation to BMI and Disease Status — Aji et al
"These findings suggest altered oral protease regulation in LC, while the concurrent increase in TIMP-1 may reflect a compensatory antiprotease response."
Article | Thread
Sputum and oral microbiota profiles are associated with long COVID severity and phenotype post-hospitalisation: a UK multicentre, prospective cohort study — Headley et al
"the study recruited patients aged 18 years or older who were discharged from one of 83 NHS hospitals in the UK" "We observed distinct oral and sputum microbiota profiles with very severe ongoing health impairments and with Long COVID subgroups."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 19th October 2026
News, advocacy and articles
UK advocacy The groups ThereforME and Action for ME have produced a template letter and briefing for MPs following up on the BBC article and interview with severe ME/CFS sufferer and former Olympian Beth Dobbin that we reported last week. Beth has written to the prime minister asking for more research funding for ME/CFS.
Thread
Iceland A report has just been published on services for patients with ME, LC, POTS, environmental illness and related conditions. The working group behind the report was appointed by the Director of Health in Iceland. The report says insurance protection and services are inadequate and it presents several recommendations as strengthening of the Akureyri Clinic, establishing specialist rehabilitation, home care, research funding and more.
Report (English summary) l News article from Iceland Review (English) l Thread
Anil van der Zee Staying Alive Is My Protest
Wise reflections from patient advocate Anil van der Zee about holding on.
Trigger warning: Discusses suicide and euthanasia.
Article l Thread
KPBS 'Nobody knows what to do': How Long COVID left Physics Girl searching for answers
An update from Dianna Cowern (Physics Girl on YouTube) about her health after Long Covid. She has been diagnosed with ME/CFS and mast cell activation syndrome. Article includes a link to an interview on The Finest podcast.
Article | Podcast | Thread
Canada - CBC Long COVID patients 'devastated' by impending changes to virtual care access in B.C.
The B.C. Centre for Long COVID, ME/CFS, & Fibromyalgia (BC-CLMF) currently provides virtual care to people across the province. Managers at the centre warn that "impending changes to the province's Medical Services Plan are going to make it harder for patients to access care." Changes are due to take effect Nov. 1.
Article | Thread
USA - #MEAction Pace to the Capitol: Our Biggest #MillionsMissing Campaign Yet
The next Millions Missing campaign, which will run from now until May, needs volunteers. See the article for information on how to "organize in your community or show up from home."
Article | Thread
..........
Coming events
Bateman Horne Center Free Online Support Group
Tuesday, November 3, 1 - 2 pm MDT
Topic: Navigating the Healthcare Industry
Advance registration required, registration link shows time in your time zone.
Registration | Thread
OMEGA Event Latest ME Research from Prof Karl Morten and colleagues
Saturday, November 7, 2 PM – 4:30 PM GMT
Register to attend in-person or online
Announcement | Registration | Thread
NIH RECOVER Seminar Understanding Long COVID's impact on the heart and lungs
Tuesday, November 10 at 12:00 pm ET
Announcement | Thread
..........
Research news and commentary
Austria - Medical University of Vienna
Matthias Wielscher's group is recruiting two fully funded PhD candidates to work on ME/CFS through the Medical University of Vienna’s international PhD programme. The project will initially leverage publicly available GWAS summary statistics to investigate the genetic architecture of ME/CFS and related traits.
Article | Thread
NINDS & MECFSnet Persistence of Post-Acute Infection Symptoms: What Causes Them and Why Do They Persist?
A recording of this October 8th webinar is now available.
Video | Thread
........
Research
ME/CFS research
Explaining Fatigue and Post-Exertional Malaise in Long COVID and ME/CFS: From Skeletal Muscle To Exercise Immunology — Charlton
PhD thesis. "When assessing peripheral skeletal muscle alterations, it was apparent that long COVID and ME/CFS exhibited similar adaptations, namely increased proportions of fast-twitch, glycolytic fibres, reduced oxidative phosphorylation capacity (even when normalized to a proxy for mitochondrial content), increased fibrosis surrounding the myofibre, decreased satellite cell populations, reduced oxidative and antioxidant metabolites, and reductions to lipid species associated with cell membrane integrity."
Article | Thread
The Glymphatic–Meningeal Lymphatic System and Autophagy in ME/CFS and Long COVID: A Mechanistic Perspective — Nemat-Gorgani et al
"This perspective extends our earlier proposal that glymphatic dysfunction contributes to ME/CFS."
Article | Thread
Long Covid research
No evidence of hypercoagulability, altered fibrinolysis, or increased fibrin(ogen) microaggregates in never-hospitalized long COVID — Fraser et al
"in never‐hospitalized patients with specialist‐confirmed LC, we found no evidence of persistent prothrombotic activation, impaired fibrinolysis, abnormal fibrin fiber architecture or increased fibrin (ogen) microaggregates, and no meaningful associations with breathlessness, fatigue or pulmonary perfusion and gas transfer metrics."
Article | Thread
Effects of prolonged SARS-CoV2 spike protein exposure in long COVID and a mouse model of the disease — Nuovo et al
"1) the SARS-CoV2 spike glycoprotein is able to persist in endothelia for at least 1.5 months in the CNS microvasculature in mice and probably up to several years in humans; 2) the persistent endothelial cell injury syndrome along with the microvasculature pro-inflammatory milieu associated with the viral spike protein and complement pathway activation can induce a chronic microangiopathy with the thickened vessels exhibiting type I collagen deposition."
Article | Thread
Multi-omic analysis of post-acute sequelae of COVID-19 (PASC) — Beimers et al
"Despite the diversity of complaints our cohort patients expressed, we found a consistent global multi-omic signature that was captured with bulk analyses." "We found that many of the PASC-associated biomolecules are in a transitional state between acute COVID-19 and recovered or healthy, which implies a failure to regain a normal molecular profile in PASC individuals."
Article | Thread
Outcome measures in long COVID clinical trials: a review — Rhijn-Brouwer et al
"Patient-relevant measures such as hours of upright activity and return to work, and clinical measurements such as actimetry can support data from functional capacity PROMs and deserve a more prominent place in clinical trials."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
UK advocacy The groups ThereforME and Action for ME have produced a template letter and briefing for MPs following up on the BBC article and interview with severe ME/CFS sufferer and former Olympian Beth Dobbin that we reported last week. Beth has written to the prime minister asking for more research funding for ME/CFS.
Thread
Iceland A report has just been published on services for patients with ME, LC, POTS, environmental illness and related conditions. The working group behind the report was appointed by the Director of Health in Iceland. The report says insurance protection and services are inadequate and it presents several recommendations as strengthening of the Akureyri Clinic, establishing specialist rehabilitation, home care, research funding and more.
Report (English summary) l News article from Iceland Review (English) l Thread
Anil van der Zee Staying Alive Is My Protest
Wise reflections from patient advocate Anil van der Zee about holding on.
Trigger warning: Discusses suicide and euthanasia.
Article l Thread
KPBS 'Nobody knows what to do': How Long COVID left Physics Girl searching for answers
An update from Dianna Cowern (Physics Girl on YouTube) about her health after Long Covid. She has been diagnosed with ME/CFS and mast cell activation syndrome. Article includes a link to an interview on The Finest podcast.
Article | Podcast | Thread
Canada - CBC Long COVID patients 'devastated' by impending changes to virtual care access in B.C.
The B.C. Centre for Long COVID, ME/CFS, & Fibromyalgia (BC-CLMF) currently provides virtual care to people across the province. Managers at the centre warn that "impending changes to the province's Medical Services Plan are going to make it harder for patients to access care." Changes are due to take effect Nov. 1.
Article | Thread
USA - #MEAction Pace to the Capitol: Our Biggest #MillionsMissing Campaign Yet
The next Millions Missing campaign, which will run from now until May, needs volunteers. See the article for information on how to "organize in your community or show up from home."
Article | Thread
..........
Coming events
Bateman Horne Center Free Online Support Group
Tuesday, November 3, 1 - 2 pm MDT
Topic: Navigating the Healthcare Industry
Advance registration required, registration link shows time in your time zone.
Registration | Thread
OMEGA Event Latest ME Research from Prof Karl Morten and colleagues
Saturday, November 7, 2 PM – 4:30 PM GMT
Register to attend in-person or online
Announcement | Registration | Thread
NIH RECOVER Seminar Understanding Long COVID's impact on the heart and lungs
Tuesday, November 10 at 12:00 pm ET
Announcement | Thread
..........
Research news and commentary
Austria - Medical University of Vienna
Matthias Wielscher's group is recruiting two fully funded PhD candidates to work on ME/CFS through the Medical University of Vienna’s international PhD programme. The project will initially leverage publicly available GWAS summary statistics to investigate the genetic architecture of ME/CFS and related traits.
Article | Thread
NINDS & MECFSnet Persistence of Post-Acute Infection Symptoms: What Causes Them and Why Do They Persist?
A recording of this October 8th webinar is now available.
Video | Thread
........
Research
ME/CFS research
Explaining Fatigue and Post-Exertional Malaise in Long COVID and ME/CFS: From Skeletal Muscle To Exercise Immunology — Charlton
PhD thesis. "When assessing peripheral skeletal muscle alterations, it was apparent that long COVID and ME/CFS exhibited similar adaptations, namely increased proportions of fast-twitch, glycolytic fibres, reduced oxidative phosphorylation capacity (even when normalized to a proxy for mitochondrial content), increased fibrosis surrounding the myofibre, decreased satellite cell populations, reduced oxidative and antioxidant metabolites, and reductions to lipid species associated with cell membrane integrity."
Article | Thread
The Glymphatic–Meningeal Lymphatic System and Autophagy in ME/CFS and Long COVID: A Mechanistic Perspective — Nemat-Gorgani et al
"This perspective extends our earlier proposal that glymphatic dysfunction contributes to ME/CFS."
Article | Thread
Long Covid research
No evidence of hypercoagulability, altered fibrinolysis, or increased fibrin(ogen) microaggregates in never-hospitalized long COVID — Fraser et al
"in never‐hospitalized patients with specialist‐confirmed LC, we found no evidence of persistent prothrombotic activation, impaired fibrinolysis, abnormal fibrin fiber architecture or increased fibrin (ogen) microaggregates, and no meaningful associations with breathlessness, fatigue or pulmonary perfusion and gas transfer metrics."
Article | Thread
Effects of prolonged SARS-CoV2 spike protein exposure in long COVID and a mouse model of the disease — Nuovo et al
"1) the SARS-CoV2 spike glycoprotein is able to persist in endothelia for at least 1.5 months in the CNS microvasculature in mice and probably up to several years in humans; 2) the persistent endothelial cell injury syndrome along with the microvasculature pro-inflammatory milieu associated with the viral spike protein and complement pathway activation can induce a chronic microangiopathy with the thickened vessels exhibiting type I collagen deposition."
Article | Thread
Multi-omic analysis of post-acute sequelae of COVID-19 (PASC) — Beimers et al
"Despite the diversity of complaints our cohort patients expressed, we found a consistent global multi-omic signature that was captured with bulk analyses." "We found that many of the PASC-associated biomolecules are in a transitional state between acute COVID-19 and recovered or healthy, which implies a failure to regain a normal molecular profile in PASC individuals."
Article | Thread
Outcome measures in long COVID clinical trials: a review — Rhijn-Brouwer et al
"Patient-relevant measures such as hours of upright activity and return to work, and clinical measurements such as actimetry can support data from functional capacity PROMs and deserve a more prominent place in clinical trials."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 26th October 2026
News, advocacy and articles
USA - CDC A recording of the September 18 ME/CFS SEC Conference Call, including a presentation by Dr. Nancy Klimas, is now available. Call transcript and presentation slides are available on the CDC website for ME/CFS meetings.
Video | Thread
UK - The Times I represented Team GB at the Olympics. Now I’m in bed 22 hours a day
Beth Dobbin has written to the prime minister asking for funding for SequenceME and Long Covid, showing how little is spent on ME/CFS research compared with other serious illnesses. “In what other illness would you be sent to a clinic with no doctors? This is a life-debilitating, life-decimating illness. I know people with ME who are tube-fed, who have to be turned. It’s disgraceful not to have anywhere to go on the NHS.”
Article (paywall) | Thread
Aotearoa / New Zealand Denial of Income Protection Insurance for LC and ME/CFS
"Recent reports of insurance claims being declined on mental health grounds raise questions about how insurers assess this disabling physical illness." "Long Covid Support Aotearoa is calling for an investigation into the use of mental health exclusions in Long Covid insurance claims."
Radio New Zealand | The Post | Long Covid Support Aotearoa | Thread
Bateman Horne Center When the Seasons Change: Seasonal Transition as an Exertional Stressor
Blog post about people with ME/CFS and Long Covid who experience a downturn when the season changes.
Article | Thread
USA - Solve M.E. 2026 State of the Union: From Protecting Progress to Building What’s Next
A US based advocacy campaign called "The Long Game: Building Political Power As a Community" was discussed in their October 20 Community Address. To get involved sign up for one or more of the nine training sessions that are scheduled between January and April.
Article | Thread
Trial by Error by David Tuller Some Recent Observations from Alem Matthees
Tuller shares from communication with Alem Matthees, who in 2016 managed to get data from the PACE trial released. He deteriorated dramatically afterwards and is sharing observations and experiences from an existence with very severe ME.
Article l Thread
........
Coming events
Bateman Horne Center Free Online Support Group
Tuesday, November 17, 1 - 2 pm MDT
Topic: Gratitude as a Happiness and Resilience Skill ...
Advance registration required, registration link shows time in your time zone.
Registration | Thread
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Research news and commentary
RME Conference Videos from the "Bridging immunology and genetics in ME/CFS and Long Covid" conference, organised by the Swedish patient organisation RME, are now up with lectures from Jonas Bergquist, David Systrom, Walles/Hejazi, Serena Fineschi, Carmen Scheibenbogen, Maria Lerm, Chris Ponting and Enander/Hempel Svenonius as well as a panel discussion.
Videos l Thread
USA - NIH RECOVER Biosamples from RECOVER’s youngest participants can unlock discoveries about pediatric Long COVID
Discussion of the collection of biosamples from children, teens, and young adults who have Long Covid and how these samples can be used in future research.
Article | Thread
.......
Research
ME/CFS research
Stress-inducible WASF3 regulates brain metabolism and cognitive function — Syed et al
"we investigated the role of WASF3 in brain metabolism and function using WASF3 transgenic and knockout mouse models." "findings demonstrate that WASF3 suppresses oxidative metabolism in the brain and contributes to cognitive dysfunction"
Article | Thread
Treg and Oxidative Stress Biomarker Profiles in Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Todorova et al
"Altered T-cell subsets were strongly associated with markers of oxidative (GPX1) and nitrosative (NOS3) stress but not directly with symptom severity."
Article | Thread
mTORC1 dysregulation and context-dependent mitochondrial dysfunction in ME/CFS: a mechanistic and translational review — Sunseri et al
"This review evaluates the mechanistic target of rapamycin complex 1 (mTORC1) as a dynamic control point that may link mitochondrial signaling, immunometabolism, inflammation, autophagy, and the post-exertional response."
Article | Thread
Long Covid research
Low Dose Naltrexone for Post-COVID Fatigue Syndrome: A Randomized Controlled Trial — Naik et al
"Compared to placebo, LDN at doses up to 4.5 mg/day for 16 weeks was well tolerated but did not improve fatigue severity in people with PCFS." "our results contrast with suggested benefits of LDN in open uncontrolled studies in Long COVID or ME/CFS"
Preprint | Thread
Metformin at the Time of COVID-19 Infection and Risk of Long COVID: A Target Trial Emulation Study — Bramante et al
"Metformin prescription within the week following documented SARS‐CoV‐2 infection was associated with a 53% reduction in [Long Covid or death] over 6 months in this primarily Omicron‐infected sample."
Article | Thread
Real-world effectiveness of Paxlovid in protecting Long COVID for outpatient adult patients: A target trial emulation study from the RECOVER Initiative — Zang et al
"High-risk, nonhospitalized adult patients with COVID-19 who were treated with Paxlovid within 5 days of SARS-CoV-2 infection had a lower risk of Long COVID and all-cause hospitalization or death in the post-acute period." "However, Long COVID risk reduction with Paxlovid was not observed in low-risk patients."
Article | Thread
Strong Protein Responses to Acute Infection Control General Post-Viral Sequelae and SARS-CoV-2-specific Neurocognitive Sequelae — Liou et al
"ADAR stood out in our results, because it had the strongest protective incidence ratio against Neurocognitive Sequelae for patients with SARS-CoV-2 infection and the greatest beneficial incidence ratio against General Sequelae for all patients."
Preprint | Thread
Associations between salivary HHV-6 and long COVID severity in a cross-sectional, case–control analysis — Laxton et al
"whether HHV-6 reactivation is a response to, or a trigger of, increased symptom severity remains to be investigated."
Article | Thread
Multifactorial biomarker profiles in fatigued and non-fatigued post-COVID-19 patients: insights from a one-year follow-up — Barrero-Santiago et al
"Fatigue was associated with variants in COMT, NR3C1, and MMP9, alongside biochemical, inflammatory, and muscle-related alterations" "A notable finding was the significant group × assessment interaction for vastus lateralis thickness, whereas no interaction was observed for rectus femoris, vastus medialis, knee extensor torque, or CPK."
Article | Thread
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S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
USA - CDC A recording of the September 18 ME/CFS SEC Conference Call, including a presentation by Dr. Nancy Klimas, is now available. Call transcript and presentation slides are available on the CDC website for ME/CFS meetings.
Video | Thread
UK - The Times I represented Team GB at the Olympics. Now I’m in bed 22 hours a day
Beth Dobbin has written to the prime minister asking for funding for SequenceME and Long Covid, showing how little is spent on ME/CFS research compared with other serious illnesses. “In what other illness would you be sent to a clinic with no doctors? This is a life-debilitating, life-decimating illness. I know people with ME who are tube-fed, who have to be turned. It’s disgraceful not to have anywhere to go on the NHS.”
Article (paywall) | Thread
Aotearoa / New Zealand Denial of Income Protection Insurance for LC and ME/CFS
"Recent reports of insurance claims being declined on mental health grounds raise questions about how insurers assess this disabling physical illness." "Long Covid Support Aotearoa is calling for an investigation into the use of mental health exclusions in Long Covid insurance claims."
Radio New Zealand | The Post | Long Covid Support Aotearoa | Thread
Bateman Horne Center When the Seasons Change: Seasonal Transition as an Exertional Stressor
Blog post about people with ME/CFS and Long Covid who experience a downturn when the season changes.
Article | Thread
USA - Solve M.E. 2026 State of the Union: From Protecting Progress to Building What’s Next
A US based advocacy campaign called "The Long Game: Building Political Power As a Community" was discussed in their October 20 Community Address. To get involved sign up for one or more of the nine training sessions that are scheduled between January and April.
Article | Thread
Trial by Error by David Tuller Some Recent Observations from Alem Matthees
Tuller shares from communication with Alem Matthees, who in 2016 managed to get data from the PACE trial released. He deteriorated dramatically afterwards and is sharing observations and experiences from an existence with very severe ME.
Article l Thread
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Coming events
Bateman Horne Center Free Online Support Group
Tuesday, November 17, 1 - 2 pm MDT
Topic: Gratitude as a Happiness and Resilience Skill ...
Advance registration required, registration link shows time in your time zone.
Registration | Thread
.......
Research news and commentary
RME Conference Videos from the "Bridging immunology and genetics in ME/CFS and Long Covid" conference, organised by the Swedish patient organisation RME, are now up with lectures from Jonas Bergquist, David Systrom, Walles/Hejazi, Serena Fineschi, Carmen Scheibenbogen, Maria Lerm, Chris Ponting and Enander/Hempel Svenonius as well as a panel discussion.
Videos l Thread
USA - NIH RECOVER Biosamples from RECOVER’s youngest participants can unlock discoveries about pediatric Long COVID
Discussion of the collection of biosamples from children, teens, and young adults who have Long Covid and how these samples can be used in future research.
Article | Thread
.......
Research
ME/CFS research
Stress-inducible WASF3 regulates brain metabolism and cognitive function — Syed et al
"we investigated the role of WASF3 in brain metabolism and function using WASF3 transgenic and knockout mouse models." "findings demonstrate that WASF3 suppresses oxidative metabolism in the brain and contributes to cognitive dysfunction"
Article | Thread
Treg and Oxidative Stress Biomarker Profiles in Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Todorova et al
"Altered T-cell subsets were strongly associated with markers of oxidative (GPX1) and nitrosative (NOS3) stress but not directly with symptom severity."
Article | Thread
mTORC1 dysregulation and context-dependent mitochondrial dysfunction in ME/CFS: a mechanistic and translational review — Sunseri et al
"This review evaluates the mechanistic target of rapamycin complex 1 (mTORC1) as a dynamic control point that may link mitochondrial signaling, immunometabolism, inflammation, autophagy, and the post-exertional response."
Article | Thread
Long Covid research
Low Dose Naltrexone for Post-COVID Fatigue Syndrome: A Randomized Controlled Trial — Naik et al
"Compared to placebo, LDN at doses up to 4.5 mg/day for 16 weeks was well tolerated but did not improve fatigue severity in people with PCFS." "our results contrast with suggested benefits of LDN in open uncontrolled studies in Long COVID or ME/CFS"
Preprint | Thread
Metformin at the Time of COVID-19 Infection and Risk of Long COVID: A Target Trial Emulation Study — Bramante et al
"Metformin prescription within the week following documented SARS‐CoV‐2 infection was associated with a 53% reduction in [Long Covid or death] over 6 months in this primarily Omicron‐infected sample."
Article | Thread
Real-world effectiveness of Paxlovid in protecting Long COVID for outpatient adult patients: A target trial emulation study from the RECOVER Initiative — Zang et al
"High-risk, nonhospitalized adult patients with COVID-19 who were treated with Paxlovid within 5 days of SARS-CoV-2 infection had a lower risk of Long COVID and all-cause hospitalization or death in the post-acute period." "However, Long COVID risk reduction with Paxlovid was not observed in low-risk patients."
Article | Thread
Strong Protein Responses to Acute Infection Control General Post-Viral Sequelae and SARS-CoV-2-specific Neurocognitive Sequelae — Liou et al
"ADAR stood out in our results, because it had the strongest protective incidence ratio against Neurocognitive Sequelae for patients with SARS-CoV-2 infection and the greatest beneficial incidence ratio against General Sequelae for all patients."
Preprint | Thread
Associations between salivary HHV-6 and long COVID severity in a cross-sectional, case–control analysis — Laxton et al
"whether HHV-6 reactivation is a response to, or a trigger of, increased symptom severity remains to be investigated."
Article | Thread
Multifactorial biomarker profiles in fatigued and non-fatigued post-COVID-19 patients: insights from a one-year follow-up — Barrero-Santiago et al
"Fatigue was associated with variants in COMT, NR3C1, and MMP9, alongside biochemical, inflammatory, and muscle-related alterations" "A notable finding was the significant group × assessment interaction for vastus lateralis thickness, whereas no interaction was observed for rectus femoris, vastus medialis, knee extensor torque, or CPK."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky