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News in Brief - July 2024
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Week beginning 1st July 2024
Part 1 of 2
News, advocacy and articles
#MEAction - Northern New England Video from the Dartmouth Medical Education Event is now available on #MEAction's YouTube channel, broken into multiple sections. The day-long event featured Lucinda Bateman of the Bateman Horne Center, Lisa McCorkell of the Patient-Led Research Collaborative, and two panels with clinicians and patients. See thread for links to all videos.
Opening Remarks Video | Thread
Physics Girl fundraiser for the Open Medicine Foundation. A day long livestream on Dianna Cowern's YouTube Physics Girl channel was held on Saturday 6th July. Dianna Cowern has very severe Long Covid / ME/CFS and was seen lying in bed while her husband and experts held discussions. With an initial goal of $10,000, the event raised over $120,000.
Open Medicine Foundation Canada on Twitter: "In the coming weeks, we'll be sharing how your amazing support will be put into action. Stay tuned to see how we leverage this incredible day of giving to accelerate our research efforts."
YouTube | Thread
Sweden Patient advocate Mitt Eremitage writes that Stockholm region has updated the clinical programme to include recommendations of CBT and GET as ME treatments. One of the people responsible for this programme is also part of the psychosocial "Oslo Consortium". With use of Wayback Machines Mitt Eremitage has found and documents subtle but important changes in the programme.
Article 1 l Article 2 l Thread
PEM An informative article on ME and PEM by the Norwegian science news site forskning.no has now been translated into English.
Article l Thread
...........
Research news and commentary
Video of a roundtable on T-cell dysfunction in ME/CFS and Long Covid, held in May. Speakers include Liisa K. Selin and Anna Gil, viral immunologists from the University of Massachusetts, and Roshan Kumar from HiFiBiO Therapeutics. The two teams are working together on immune mechanisms, biomarkers and possible treatments.
Video | Thread
Trial by Error by David Tuller New Paper Seeks to Reframe Poor Findings in CODES Trial of CBT for Non-Epileptic Seizures
Despite the null results of the CODES trial on CBT as treatment for dissociative seizures, the investigators (including Stone, Carson and Chalder) argue in a new paper that the results really weren't that bad. Tuller walks us through their argumentation and concludes: "The whole thing reads like a desperate attempt to portray their intervention as having had some meaningful effect. The CODES data tell a different story."
Article l Thread
..........
Coming events
Long Covid Web - "Update from Long Covid Research in the USA"
Tuesday, July 16
10 am Pacific / 1 pm Eastern
Free online event, registration required.
Announcement | Registration | Thread
Bateman Horne Center - Free Online Support Groups
Tuesday, July 16, 1:00 - 2:00 PM Mountain Time
Topic: Grief & Ambiguous Loss
Tuesday, July 30, 1:00 - 2:00 PM Mountain Time
Topic: Reinvesting in Our Lives
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
Conference The Swedish ME organisation RME and The Swedish COVID Association are organising a conference titled "Circulation in ME/CFS and Postcovid". The conference will take place in Stockholm and in digital version October 9th 2024. Lecturers are Dr. Rekeland, professor Pretorius, professor Fedorowski, professor Systrom, Dr. Vernon and professor Bergquist.
More information l Thread
...........
For part 2, ME/CFS and Long Covid research, go to the next post.
Part 1 of 2
News, advocacy and articles
#MEAction - Northern New England Video from the Dartmouth Medical Education Event is now available on #MEAction's YouTube channel, broken into multiple sections. The day-long event featured Lucinda Bateman of the Bateman Horne Center, Lisa McCorkell of the Patient-Led Research Collaborative, and two panels with clinicians and patients. See thread for links to all videos.
Opening Remarks Video | Thread
Physics Girl fundraiser for the Open Medicine Foundation. A day long livestream on Dianna Cowern's YouTube Physics Girl channel was held on Saturday 6th July. Dianna Cowern has very severe Long Covid / ME/CFS and was seen lying in bed while her husband and experts held discussions. With an initial goal of $10,000, the event raised over $120,000.
Open Medicine Foundation Canada on Twitter: "In the coming weeks, we'll be sharing how your amazing support will be put into action. Stay tuned to see how we leverage this incredible day of giving to accelerate our research efforts."
YouTube | Thread
Sweden Patient advocate Mitt Eremitage writes that Stockholm region has updated the clinical programme to include recommendations of CBT and GET as ME treatments. One of the people responsible for this programme is also part of the psychosocial "Oslo Consortium". With use of Wayback Machines Mitt Eremitage has found and documents subtle but important changes in the programme.
Article 1 l Article 2 l Thread
PEM An informative article on ME and PEM by the Norwegian science news site forskning.no has now been translated into English.
Article l Thread
...........
Research news and commentary
Video of a roundtable on T-cell dysfunction in ME/CFS and Long Covid, held in May. Speakers include Liisa K. Selin and Anna Gil, viral immunologists from the University of Massachusetts, and Roshan Kumar from HiFiBiO Therapeutics. The two teams are working together on immune mechanisms, biomarkers and possible treatments.
Video | Thread
Trial by Error by David Tuller New Paper Seeks to Reframe Poor Findings in CODES Trial of CBT for Non-Epileptic Seizures
Despite the null results of the CODES trial on CBT as treatment for dissociative seizures, the investigators (including Stone, Carson and Chalder) argue in a new paper that the results really weren't that bad. Tuller walks us through their argumentation and concludes: "The whole thing reads like a desperate attempt to portray their intervention as having had some meaningful effect. The CODES data tell a different story."
Article l Thread
..........
Coming events
Long Covid Web - "Update from Long Covid Research in the USA"
Tuesday, July 16
10 am Pacific / 1 pm Eastern
Free online event, registration required.
Announcement | Registration | Thread
Bateman Horne Center - Free Online Support Groups
Tuesday, July 16, 1:00 - 2:00 PM Mountain Time
Topic: Grief & Ambiguous Loss
Tuesday, July 30, 1:00 - 2:00 PM Mountain Time
Topic: Reinvesting in Our Lives
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
Conference The Swedish ME organisation RME and The Swedish COVID Association are organising a conference titled "Circulation in ME/CFS and Postcovid". The conference will take place in Stockholm and in digital version October 9th 2024. Lecturers are Dr. Rekeland, professor Pretorius, professor Fedorowski, professor Systrom, Dr. Vernon and professor Bergquist.
More information l Thread
...........
For part 2, ME/CFS and Long Covid research, go to the next post.
Week beginning 1st July 2024
Part 2 of 2
Research
ME/CFS research
University of Surrey, UK
Thesis abstract: Characterising the Electrophysiological Properties of Cells in Health and Disease - Krista Clarke
"These studies demonstrate novel applications of dielectrophoresis and ζ-potential analysis – to quantitatively diagnose ME/CFS, identify changes in PBMCs following COVID-exposure, and changes in chondrocyte electrophysiology during dedifferentiation."
Thesis embargoed until July 2025
Abstract | Thread
Journal of Translational Medicine
Potential pathophysiological role of the ion channel TRPM3 in ME/CFS and the therapeutic effect of low-dose naltrexone - Lohn et al
The authors explain the role of the Transient receptor potential melastatin 3 (TRPM3) channel. "TRPM3 dysfunction in NK cells can be improved by naltrexone in vitro and ex vivo, which may explain the moderate clinical efficacy of low-dose naltrexone (LDN) treatment. [...] This paper discusses TRPM3’s expression in various organs and its potential impact on ME/CFS symptoms, with a focus on small nerve fibers and the brain, where TRPM3 is involved in presynaptic GABA release."
Article | Thread
Psychoneuroendocrinology
Lower hair cortisol concentration in adolescent and young adult patients with ME/CFS & Q-Fever Fatigue Syndrome compared to controls - Vroegindeweij et al
"Baseline HCC did not predict fatigue improvement during the RCT (p=.449), and HCC increased during the trial (Mdif=.076, p=.021) regardless of clinically relevant fatigue improvement (p=.658)."
Article | Thread
Journal of Exercise Sciences and Physical Activity Reviews
Prediction of myalgic chronic fatigue syndrome disorder with machine learning approach - Yagin & Georgian
"Utilizing open-access metabolomics data from 26 ME/CFS patients and 26 controls, we implemented a comprehensive data preprocessing and modeling framework." Despite this very small sample, the authors claim "high efficacy in identifying positive cases of ME/CFS".
Article | Thread
Fatigue: Biomedicine, Health & Behavior
Symptom-based survey diagnoses may serve to identify more homogenous sub-groups of fatigue and postviral diseases - Bjørn et al.
2362 Norwegian patients responded to a survey using the DePaul Symptom Questionnaires. 1904 respondents had Fatigue or Postviral disease.
Article | Thread
Journal of Critical Psychology, Counselling and Psychotherapy
Reflections on gendered disability denial: The case of energy limiting conditions - Joanne Elizabeth Hunt
A group of debilitating health conditions disproportionately impacting women, increasingly known as ‘energy limiting conditions’, is associated with a long history of medical and societal disability denial. This article offers reflections on socio-cultural, bio-political and intrapsychic contributors to this denial, employing thinking consistent with critical psychology.
Article | Thread
Quality of Life Research
Illness presentation and quality of life in myalgic encephalomyelitis/chronic fatigue syndrome and post COVID-19 condition: a pilot Australian cross-sectional study - Weigel et al.
This Australian study compared 61 patients with ME/CFS with 31 patients with Long Covid and found few differences in symptoms between the two groups.
Article | Thread
Journal of Translational Medicine
Cardiopulmonary and metabolic responses during a 2-day CPET in myalgic encephalomyelitis/chronic fatigue syndrome: translating reduced oxygen consumption to impairment status to treatment considerations - Keller et al.
84 patient with ME/CFS and 71 sedentary controls completed two cardiopulmonary exercise tests (CPET). In contrast to the controls, ME/CFS patients failed to reproduce CPET-1 measures during CPET-2 with significant declines at peak exertion in work, exercise time and other measurements.
Article | Thread
Long Covid research
Science Translational Medicine
Tissue-based T cell activation and viral RNA persist for up to 2 years after SARS-CoV-2 infection — Michael J. Peluso et al.
"We performed whole-body positron emission tomography imaging in a well-characterized cohort of 24 participants at time points ranging from 27 to 910 days after acute SARS-CoV-2 infection using the radiopharmaceutical agent [18 F]F-AraG, a selective tracer that allows for anatomical quantitation of activated T lymphocytes."
Article | Thread
Preprint: MedRxiv
Relationship between acute SARS-CoV-2 viral clearance with Long COVID Symptoms: a cohort study — Carly B Herbert et al.
"our study of adults with mild to moderate infections offers an important lens into the longitudinal course of SARS-CoV-2 infections occurring outside the clinical setting." "Our results add to evidence showing an association between delayed viral clearance and long COVID." "We also observed that the association between viral clearance and long COVID differed between men and women."
Article | Thread
Journal of Translational Medicine
Targeted metabolomics identifies accurate CSF metabolite biomarkers for the differentiation between COVID-19 with neurological involvement and CNS infections with neurotropic viral pathogens — Neu et al.
"The observed metabolic alterations in CSF, combined with changes in standard CSF parameters, lend further support to the notion that neurological deficits in neuro-COVID patients are mediated by host-derived factors rather than viral replication in CNS." "the reduced concentration of triglycerides (TG[20:1_32:3]) in CSF of patients with neuro-COVID proved to be an excellent biomarker"
Article | Thread
ACM Conferences
The Unanticipated Use of Fitness Tracking Technologies During Post-COVID Syndrome | Proceedings of the 2024 ACM Designing Interactive Systems Conference — Sarah Homewood et al.
"We found that people with long COVID are using commercial fitness tracking technologies in unanticipated ways to collect data such as heart rate, number of steps and sleep quality. These technologies were used to understand the enigmatic long COVID illness and manage symptoms through pacing energy through finding correlations between activities and their impact on their self-tracked data."
Article | Thread
Current Problems in Cardiology
Reduced autonomic function in patients with long-COVID-19 syndrome is mediated by cardiorespiratory fitness — Oscoz-Ochandorena et al.
"our study establishes that patients with LCS exhibit lower absolute and relative HRV values compared to controls, with peak VO2max emerging as a significant mediator in this relationship."
Article | Thread
Preprint: MedRxiv
An HERV-W ENV transcription in atypical memory B cells linked to COVID-19 evolution and risk for long COVID can express the encoded protein from a ribosome readthrough of mRNA from chromosome X — Joanna Brunel et al.
"Results not only confirm HERV-W ENV RNA origin in these patients, but show for the first time how a defective HERV copy can be translated into a complete protein when specific factors make it possible at the ribosome level. The present proof of concept now requires further studies to identify the factors involved in this newly understood mechanism, following SARS-CoV-2 exposure."
Article | Thread
The Journal of Rheumatology
Prevalence and Risk Factors of Post-Acute Sequela of COVID-19 in Adults with Systemic Autoimmune Rheumatic Diseases — Mayan S. Teles et al.
"PASC was reported by 89/299 (29.8%) participants. The most commonly reported symptoms included fatigue (70.8%), loss of concentration/brain fog (68.5%), and joint pain/swelling (38.2%). The most common symptom domain was neurological/psychological (83.1%)."
Article | Thread
Preprint: Research Square
Circulating microclots are structurally associated with Neutrophil Extracellular Traps and their amounts are strongly elevated in long COVID patients — Etheresia Pretorius et al.
"Our study revealed that NETs may be a component of circulating FAM, suggesting that higher NETs formation promotes the stabilization of FAM in the circulation, leading to deleterious effects which (in part) may contribute to the symptoms of LC."
Article | Thread
Advanced Healthcare Materials
Interventional Removal of Travelling Microthrombi Using Targeted Magnetic Microbubble — Yongjian Li et al.
"In this work, an interventional method is developed to identify and remove the traveling microthrombi using targeted-magnetic microbubbles (TMMBs) and an interventional magnetic catheter." "in the rat models, the concentration of microthrombus is reduced by more than 60% in 3 minutes"
Article | Thread
...............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Part 2 of 2
Research
ME/CFS research
University of Surrey, UK
Thesis abstract: Characterising the Electrophysiological Properties of Cells in Health and Disease - Krista Clarke
"These studies demonstrate novel applications of dielectrophoresis and ζ-potential analysis – to quantitatively diagnose ME/CFS, identify changes in PBMCs following COVID-exposure, and changes in chondrocyte electrophysiology during dedifferentiation."
Thesis embargoed until July 2025
Abstract | Thread
Journal of Translational Medicine
Potential pathophysiological role of the ion channel TRPM3 in ME/CFS and the therapeutic effect of low-dose naltrexone - Lohn et al
The authors explain the role of the Transient receptor potential melastatin 3 (TRPM3) channel. "TRPM3 dysfunction in NK cells can be improved by naltrexone in vitro and ex vivo, which may explain the moderate clinical efficacy of low-dose naltrexone (LDN) treatment. [...] This paper discusses TRPM3’s expression in various organs and its potential impact on ME/CFS symptoms, with a focus on small nerve fibers and the brain, where TRPM3 is involved in presynaptic GABA release."
Article | Thread
Psychoneuroendocrinology
Lower hair cortisol concentration in adolescent and young adult patients with ME/CFS & Q-Fever Fatigue Syndrome compared to controls - Vroegindeweij et al
"Baseline HCC did not predict fatigue improvement during the RCT (p=.449), and HCC increased during the trial (Mdif=.076, p=.021) regardless of clinically relevant fatigue improvement (p=.658)."
Article | Thread
Journal of Exercise Sciences and Physical Activity Reviews
Prediction of myalgic chronic fatigue syndrome disorder with machine learning approach - Yagin & Georgian
"Utilizing open-access metabolomics data from 26 ME/CFS patients and 26 controls, we implemented a comprehensive data preprocessing and modeling framework." Despite this very small sample, the authors claim "high efficacy in identifying positive cases of ME/CFS".
Article | Thread
Fatigue: Biomedicine, Health & Behavior
Symptom-based survey diagnoses may serve to identify more homogenous sub-groups of fatigue and postviral diseases - Bjørn et al.
2362 Norwegian patients responded to a survey using the DePaul Symptom Questionnaires. 1904 respondents had Fatigue or Postviral disease.
Article | Thread
Journal of Critical Psychology, Counselling and Psychotherapy
Reflections on gendered disability denial: The case of energy limiting conditions - Joanne Elizabeth Hunt
A group of debilitating health conditions disproportionately impacting women, increasingly known as ‘energy limiting conditions’, is associated with a long history of medical and societal disability denial. This article offers reflections on socio-cultural, bio-political and intrapsychic contributors to this denial, employing thinking consistent with critical psychology.
Article | Thread
Quality of Life Research
Illness presentation and quality of life in myalgic encephalomyelitis/chronic fatigue syndrome and post COVID-19 condition: a pilot Australian cross-sectional study - Weigel et al.
This Australian study compared 61 patients with ME/CFS with 31 patients with Long Covid and found few differences in symptoms between the two groups.
Article | Thread
Journal of Translational Medicine
Cardiopulmonary and metabolic responses during a 2-day CPET in myalgic encephalomyelitis/chronic fatigue syndrome: translating reduced oxygen consumption to impairment status to treatment considerations - Keller et al.
84 patient with ME/CFS and 71 sedentary controls completed two cardiopulmonary exercise tests (CPET). In contrast to the controls, ME/CFS patients failed to reproduce CPET-1 measures during CPET-2 with significant declines at peak exertion in work, exercise time and other measurements.
Article | Thread
Long Covid research
Science Translational Medicine
Tissue-based T cell activation and viral RNA persist for up to 2 years after SARS-CoV-2 infection — Michael J. Peluso et al.
"We performed whole-body positron emission tomography imaging in a well-characterized cohort of 24 participants at time points ranging from 27 to 910 days after acute SARS-CoV-2 infection using the radiopharmaceutical agent [18 F]F-AraG, a selective tracer that allows for anatomical quantitation of activated T lymphocytes."
Article | Thread
Preprint: MedRxiv
Relationship between acute SARS-CoV-2 viral clearance with Long COVID Symptoms: a cohort study — Carly B Herbert et al.
"our study of adults with mild to moderate infections offers an important lens into the longitudinal course of SARS-CoV-2 infections occurring outside the clinical setting." "Our results add to evidence showing an association between delayed viral clearance and long COVID." "We also observed that the association between viral clearance and long COVID differed between men and women."
Article | Thread
Journal of Translational Medicine
Targeted metabolomics identifies accurate CSF metabolite biomarkers for the differentiation between COVID-19 with neurological involvement and CNS infections with neurotropic viral pathogens — Neu et al.
"The observed metabolic alterations in CSF, combined with changes in standard CSF parameters, lend further support to the notion that neurological deficits in neuro-COVID patients are mediated by host-derived factors rather than viral replication in CNS." "the reduced concentration of triglycerides (TG[20:1_32:3]) in CSF of patients with neuro-COVID proved to be an excellent biomarker"
Article | Thread
ACM Conferences
The Unanticipated Use of Fitness Tracking Technologies During Post-COVID Syndrome | Proceedings of the 2024 ACM Designing Interactive Systems Conference — Sarah Homewood et al.
"We found that people with long COVID are using commercial fitness tracking technologies in unanticipated ways to collect data such as heart rate, number of steps and sleep quality. These technologies were used to understand the enigmatic long COVID illness and manage symptoms through pacing energy through finding correlations between activities and their impact on their self-tracked data."
Article | Thread
Current Problems in Cardiology
Reduced autonomic function in patients with long-COVID-19 syndrome is mediated by cardiorespiratory fitness — Oscoz-Ochandorena et al.
"our study establishes that patients with LCS exhibit lower absolute and relative HRV values compared to controls, with peak VO2max emerging as a significant mediator in this relationship."
Article | Thread
Preprint: MedRxiv
An HERV-W ENV transcription in atypical memory B cells linked to COVID-19 evolution and risk for long COVID can express the encoded protein from a ribosome readthrough of mRNA from chromosome X — Joanna Brunel et al.
"Results not only confirm HERV-W ENV RNA origin in these patients, but show for the first time how a defective HERV copy can be translated into a complete protein when specific factors make it possible at the ribosome level. The present proof of concept now requires further studies to identify the factors involved in this newly understood mechanism, following SARS-CoV-2 exposure."
Article | Thread
The Journal of Rheumatology
Prevalence and Risk Factors of Post-Acute Sequela of COVID-19 in Adults with Systemic Autoimmune Rheumatic Diseases — Mayan S. Teles et al.
"PASC was reported by 89/299 (29.8%) participants. The most commonly reported symptoms included fatigue (70.8%), loss of concentration/brain fog (68.5%), and joint pain/swelling (38.2%). The most common symptom domain was neurological/psychological (83.1%)."
Article | Thread
Preprint: Research Square
Circulating microclots are structurally associated with Neutrophil Extracellular Traps and their amounts are strongly elevated in long COVID patients — Etheresia Pretorius et al.
"Our study revealed that NETs may be a component of circulating FAM, suggesting that higher NETs formation promotes the stabilization of FAM in the circulation, leading to deleterious effects which (in part) may contribute to the symptoms of LC."
Article | Thread
Advanced Healthcare Materials
Interventional Removal of Travelling Microthrombi Using Targeted Magnetic Microbubble — Yongjian Li et al.
"In this work, an interventional method is developed to identify and remove the traveling microthrombi using targeted-magnetic microbubbles (TMMBs) and an interventional magnetic catheter." "in the rat models, the concentration of microthrombus is reduced by more than 60% in 3 minutes"
Article | Thread
...............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 8th July 2024
News, advocacy and articles
UK Inquest Maeve Boothby O'Neill, daughter of Sarah Boothby and Sean O'Neill, who had very severe ME/CFS, died in 2021. A two week full inquest hearing into her death begins at 10am on Mon 22 July 2024. See thread for HM Coroner's contact details if you wish to support Maeve's family and attend remotely.
Twitter | Thread
BBC 'I'm scared my daughter will die in hospital'
An article and video segment on the desperate situation for severe ME patient Carla who is badly deteriorating in hospital due to failure of care. Carla's parents are terrified she will die. Dr. Charles Shepherd from the ME Association says the lack of specialist ME/CFS treatment centres means patients with severe ME and feeding problems are often being admitted to hospitals and health care workers with no knowledge of severe ME.
Content warning of distressing details.
Article l Video segment l Thread
UK APPG Action for ME and ME Association jointly act as secretriat to the All Party Parliamentary Group (APPG) for ME/CFS.
"Sadly, the APPG’s previous Chair, Carol Monaghan, was not re-elected as MP for Glasgow North West and therefore, we will now work to identify and secure a new Chair."
Article | Thread
UK FOI decision Information Commissioners Office Decision notice: Misuse of influence and NICE Guidelines
Previous FOI requests to NICE for correspondence shortly before publication of the NICE ME/CFS guideline revealed troubling attempts by individuals to persuade NICE managers to stop the guideline and/or the evidence review being published. NICE redacted the individuals' names from the documents. The complainant to the ICO requested the names be revealed. The ICO refused this, saying 'NICE is entitled to withhold personal data requested'.
ICO Document | Thread (members only)
European Federation of Neurological Associations (EFNA)
EFNA has started a new survey called 'The invisible issues of neurological conditions'. The aim is to identify invisible issues (for example pain, fatigue, or gender-related issues) as faced by those affected by neurological conditions, either as patients or caregivers. The survey is available in 8 languages and will be open until 30/08/2024.
Article | Thread
Reminder: #MEAction has announced their Severe ME Artists Project for 2024 in recognition of Severe ME Day on August 8th. Anyone who identifies as having severe ME can participate. Submissions are due by July 25.
Article | Thread
The Lancet Long COVID politics and activism.
Excellent book review by medical anthropologist Emily Mendenhall in the Lancet of the paperback edition of Ryan Prior's book "The Long Haul". She says Long COVID "shines a light on a new era in medicine" and that there "is an opportunity to not only rethink how people are diagnosed and treated, but also how health systems and clinics are organised and staffed to promote more interdisciplinary teams, thinking, and care".
Review l Thread
................
Useful resources
PEM A Norwegian science news site has written two informative articles on PEM which have been translated into English and shared via Science Norway. The first article was shared in last week's news brief. The second article is now out in English and titled: Why does physical activity exacerbate symptoms in ME/CFS and long Covid patients?
Article l Thread
Bateman Horne Center 'Staying within Your Energy Envelope by Modifying Tasks'
In this video (about 50 minutes) occupational therapist Amy Mooney discusses pacing strategies for ME/CFS patients.
Video | Thread
A 2-page document from the Bateman Horne Center with tips on conserving energy to prevent PEM has been added to the resources section of the forum.
Document | Thread
............
Research news and commentary
ME Research UK - Research grants
ME Research UK currently has an open call for applications for research grants to investigate the causes, consequences and treatment of ME/CFS. The call is for biomedical research, is worldwide, and includes PhD-level research. The deadline for outline proposals is Friday 23 August 2024.
Details | Thread
Sweden The Oslo Chronic Fatigue Consortium member Elin Lindsäter is performing a trial titled "Psychological Treatment for Persistent Fatigue: a Feasibility Study" which will involve treatment with GET and CBT. Not a recommendation.
Thread with more information
...........
Coming events
Washington Post Live: 'Long Covid: Where Things Stand'
Thursday, July 25
6 AM Pacific / 9 AM Eastern / 2 PM BST
"Influential policymakers and medical researchers explore the causes, prevalence and long-term impacts of long covid four years after the pandemic." Jaime Seltzer from #MEAction will be one of the speakers. An in-person event will be held in Washington, DC, along with a virtual event. Sponsored by Moderna.
Registration | Thread
...........
Research
ME/CFS research
Neurological Sciences
Cerebral blood flow and end-tidal CO2 predict lightheadedness during head-up tilt in patients with orthostatic intolerance - Coelho et al.
This small study by the team of Peter Novak found that cerebral blood flow predicted orthostatic lightheadedness while orthostatic heart rate and blood pressure did not.
Article | Thread
Long Covid research
Obstetrics & Gynecology
Post–Acute Sequelae of Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) After Infection During Pregnancy — Metz, Torri D. et al.
"The prevalence of PASC at a median time of 10.3 months after SARS-CoV-2 infection during pregnancy was 9.3% in the NIH RECOVER-Pregnancy Cohort. The predominant symptoms were postexertional malaise, fatigue, and gastrointestinal symptoms."
Article | Thread
Nature Communications Medicine
Insights from an N3C RECOVER EHR-based cohort study characterizing SARS-CoV-2 reinfections and Long COVID — Hadley et al.
"The largest proportion of Long COVID diagnoses occur among individuals with a first reinfection in the Delta epoch. The rate of Long COVID diagnoses has been increasing with each successive Omicron variant"
Article | Thread
Nature Communications Medicine
Complex patterns of multimorbidity associated with severe COVID-19 and long COVID — Pietzner et al.
"Here we identify 679 diseases associated with an increased risk for severe COVID-19 (n = 672) and/or Long COVID (n = 72) that span almost all clinical specialties and are strongly enriched in clusters of cardio-respiratory and endocrine-renal diseases."
Article | Thread
Preprint: MedRxiv
MENSA, a Media Enriched with Newly Synthesized Antibodies, to Identify SARS-CoV-2 Persistence and Latent Viral Reactivation in Long-COVID — Natalie S. Haddad et al.
"Combined, a total of 60% of PASC patients have a positive MENSA for SARS2, EBV, CMV, and/or HSV2. MENSA offers a unique antibody snapshot to reveal the underlying viral drivers in long-COVID thus demonstrating the persistence of SARS2 and reactivation of viral herpes in 60% of PASC patients."
Article | Thread
Frontiers in Immunology
Autoantibodies in COVID-19 survivors with post-COVID symptoms: a systematic review — Notarte et al.
Review. "Although evidence suggests that persistent autoantibodies can be associated with post-COVID symptoms, the clinical relevance of their presence seems modest at this stage."
Article | Thread
Experimental Brain Research
Frontal-striatal glucose metabolism and fatigue in patients with multiple sclerosis, long COVID, and COVID-19 recovered controls — Rudroff
"The finding that patients with Long COVID show more comparable brain glucose metabolism to controls in the frontal cortex and basal ganglia subregions suggests that the pathophysiology of Long COVID fatigue may involve different biological systems beyond the central nervous system."
Article | Thread
Nature Aging
Tracking cognitive trajectories in older survivors of COVID-19 up to 2.5 years post-infection — Liu et al.
"We show that the overall incidence of cognitive impairment among older COVID-19 survivors was 19.1% at 2.5 years after infection and hospitalization" "Cognitive decline primarily manifested in individuals with severe COVID-19 during the initial year of infection, after which the rate of decline decelerated."
Article | Thread
Annals of Geriatric Medicine and Research
Follow-up of Cardiopulmonary Responses Using Submaximal Exercise Test in Older Adults with Post-COVID-19 — Amput and Wongphon
"Post-COVID-19, older adults showed statistically significant differences in HR, SBP, DBP, O2 sat, RPE, leg fatigue, 6MWT time, and 1-min-STST step numbers at 3, 6, and 12 months (P < 0.001)."
Article | Thread
Journal of Medical Economics
Impact of COVID-19 on Work Loss in the United States- A Retrospective Database Analysis — Jennifer Judy et al.
"Our results highlight the ongoing and substantial impact of COVID-19 on work absence benefit utilization beyond the acute phase. This analysis demonstrates the need for employers and researchers to review all available medical, pharmacy, and disability claims to assess the acute and long-term impact of COVID-19 on employees and prioritize mitigation strategies to reduce the burden of the virus to their employees."
Article | Thread
Preprint: MedRxiv
New-onset chronic musculoskeletal pain following COVID-19 infection fulfil the Fibromyalgia clinical syndrome criteria — Omar Khoja et al.
"The study found that 72.2% of the patients with new-onset chronic MSK pain following COVID-19 infection met the criteria for FMS. These findings support the hypothesis that FMS may develop as a long-term sequela of a viral infection"
Article | Thread
Bratislavske lekarske listy
Baseline capillaroscopy provides no evidence of microvascular changes to predict long-COVID syndrome — Ulusoy et al.
"There were 35 individuals (66%) with long-COVID syndrome. The most common symptoms related to long-COVID were fatigue (43.4%), myalgia (34%), arthralgia (20.8%), dyspnea (20.8%)." "Like other baseline characteristics, the proportion of patients with abnormal capillaroscopic findings (40% vs 44%, p=0.76) was similar between patients with and without long-COVID syndrome."
Article | Thread
............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, advocacy and articles
UK Inquest Maeve Boothby O'Neill, daughter of Sarah Boothby and Sean O'Neill, who had very severe ME/CFS, died in 2021. A two week full inquest hearing into her death begins at 10am on Mon 22 July 2024. See thread for HM Coroner's contact details if you wish to support Maeve's family and attend remotely.
Twitter | Thread
BBC 'I'm scared my daughter will die in hospital'
An article and video segment on the desperate situation for severe ME patient Carla who is badly deteriorating in hospital due to failure of care. Carla's parents are terrified she will die. Dr. Charles Shepherd from the ME Association says the lack of specialist ME/CFS treatment centres means patients with severe ME and feeding problems are often being admitted to hospitals and health care workers with no knowledge of severe ME.
Content warning of distressing details.
Article l Video segment l Thread
UK APPG Action for ME and ME Association jointly act as secretriat to the All Party Parliamentary Group (APPG) for ME/CFS.
"Sadly, the APPG’s previous Chair, Carol Monaghan, was not re-elected as MP for Glasgow North West and therefore, we will now work to identify and secure a new Chair."
Article | Thread
UK FOI decision Information Commissioners Office Decision notice: Misuse of influence and NICE Guidelines
Previous FOI requests to NICE for correspondence shortly before publication of the NICE ME/CFS guideline revealed troubling attempts by individuals to persuade NICE managers to stop the guideline and/or the evidence review being published. NICE redacted the individuals' names from the documents. The complainant to the ICO requested the names be revealed. The ICO refused this, saying 'NICE is entitled to withhold personal data requested'.
ICO Document | Thread (members only)
European Federation of Neurological Associations (EFNA)
EFNA has started a new survey called 'The invisible issues of neurological conditions'. The aim is to identify invisible issues (for example pain, fatigue, or gender-related issues) as faced by those affected by neurological conditions, either as patients or caregivers. The survey is available in 8 languages and will be open until 30/08/2024.
Article | Thread
Reminder: #MEAction has announced their Severe ME Artists Project for 2024 in recognition of Severe ME Day on August 8th. Anyone who identifies as having severe ME can participate. Submissions are due by July 25.
Article | Thread
The Lancet Long COVID politics and activism.
Excellent book review by medical anthropologist Emily Mendenhall in the Lancet of the paperback edition of Ryan Prior's book "The Long Haul". She says Long COVID "shines a light on a new era in medicine" and that there "is an opportunity to not only rethink how people are diagnosed and treated, but also how health systems and clinics are organised and staffed to promote more interdisciplinary teams, thinking, and care".
Review l Thread
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Useful resources
PEM A Norwegian science news site has written two informative articles on PEM which have been translated into English and shared via Science Norway. The first article was shared in last week's news brief. The second article is now out in English and titled: Why does physical activity exacerbate symptoms in ME/CFS and long Covid patients?
Article l Thread
Bateman Horne Center 'Staying within Your Energy Envelope by Modifying Tasks'
In this video (about 50 minutes) occupational therapist Amy Mooney discusses pacing strategies for ME/CFS patients.
Video | Thread
A 2-page document from the Bateman Horne Center with tips on conserving energy to prevent PEM has been added to the resources section of the forum.
Document | Thread
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Research news and commentary
ME Research UK - Research grants
ME Research UK currently has an open call for applications for research grants to investigate the causes, consequences and treatment of ME/CFS. The call is for biomedical research, is worldwide, and includes PhD-level research. The deadline for outline proposals is Friday 23 August 2024.
Details | Thread
Sweden The Oslo Chronic Fatigue Consortium member Elin Lindsäter is performing a trial titled "Psychological Treatment for Persistent Fatigue: a Feasibility Study" which will involve treatment with GET and CBT. Not a recommendation.
Thread with more information
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Coming events
Washington Post Live: 'Long Covid: Where Things Stand'
Thursday, July 25
6 AM Pacific / 9 AM Eastern / 2 PM BST
"Influential policymakers and medical researchers explore the causes, prevalence and long-term impacts of long covid four years after the pandemic." Jaime Seltzer from #MEAction will be one of the speakers. An in-person event will be held in Washington, DC, along with a virtual event. Sponsored by Moderna.
Registration | Thread
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Research
ME/CFS research
Neurological Sciences
Cerebral blood flow and end-tidal CO2 predict lightheadedness during head-up tilt in patients with orthostatic intolerance - Coelho et al.
This small study by the team of Peter Novak found that cerebral blood flow predicted orthostatic lightheadedness while orthostatic heart rate and blood pressure did not.
Article | Thread
Long Covid research
Obstetrics & Gynecology
Post–Acute Sequelae of Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) After Infection During Pregnancy — Metz, Torri D. et al.
"The prevalence of PASC at a median time of 10.3 months after SARS-CoV-2 infection during pregnancy was 9.3% in the NIH RECOVER-Pregnancy Cohort. The predominant symptoms were postexertional malaise, fatigue, and gastrointestinal symptoms."
Article | Thread
Nature Communications Medicine
Insights from an N3C RECOVER EHR-based cohort study characterizing SARS-CoV-2 reinfections and Long COVID — Hadley et al.
"The largest proportion of Long COVID diagnoses occur among individuals with a first reinfection in the Delta epoch. The rate of Long COVID diagnoses has been increasing with each successive Omicron variant"
Article | Thread
Nature Communications Medicine
Complex patterns of multimorbidity associated with severe COVID-19 and long COVID — Pietzner et al.
"Here we identify 679 diseases associated with an increased risk for severe COVID-19 (n = 672) and/or Long COVID (n = 72) that span almost all clinical specialties and are strongly enriched in clusters of cardio-respiratory and endocrine-renal diseases."
Article | Thread
Preprint: MedRxiv
MENSA, a Media Enriched with Newly Synthesized Antibodies, to Identify SARS-CoV-2 Persistence and Latent Viral Reactivation in Long-COVID — Natalie S. Haddad et al.
"Combined, a total of 60% of PASC patients have a positive MENSA for SARS2, EBV, CMV, and/or HSV2. MENSA offers a unique antibody snapshot to reveal the underlying viral drivers in long-COVID thus demonstrating the persistence of SARS2 and reactivation of viral herpes in 60% of PASC patients."
Article | Thread
Frontiers in Immunology
Autoantibodies in COVID-19 survivors with post-COVID symptoms: a systematic review — Notarte et al.
Review. "Although evidence suggests that persistent autoantibodies can be associated with post-COVID symptoms, the clinical relevance of their presence seems modest at this stage."
Article | Thread
Experimental Brain Research
Frontal-striatal glucose metabolism and fatigue in patients with multiple sclerosis, long COVID, and COVID-19 recovered controls — Rudroff
"The finding that patients with Long COVID show more comparable brain glucose metabolism to controls in the frontal cortex and basal ganglia subregions suggests that the pathophysiology of Long COVID fatigue may involve different biological systems beyond the central nervous system."
Article | Thread
Nature Aging
Tracking cognitive trajectories in older survivors of COVID-19 up to 2.5 years post-infection — Liu et al.
"We show that the overall incidence of cognitive impairment among older COVID-19 survivors was 19.1% at 2.5 years after infection and hospitalization" "Cognitive decline primarily manifested in individuals with severe COVID-19 during the initial year of infection, after which the rate of decline decelerated."
Article | Thread
Annals of Geriatric Medicine and Research
Follow-up of Cardiopulmonary Responses Using Submaximal Exercise Test in Older Adults with Post-COVID-19 — Amput and Wongphon
"Post-COVID-19, older adults showed statistically significant differences in HR, SBP, DBP, O2 sat, RPE, leg fatigue, 6MWT time, and 1-min-STST step numbers at 3, 6, and 12 months (P < 0.001)."
Article | Thread
Journal of Medical Economics
Impact of COVID-19 on Work Loss in the United States- A Retrospective Database Analysis — Jennifer Judy et al.
"Our results highlight the ongoing and substantial impact of COVID-19 on work absence benefit utilization beyond the acute phase. This analysis demonstrates the need for employers and researchers to review all available medical, pharmacy, and disability claims to assess the acute and long-term impact of COVID-19 on employees and prioritize mitigation strategies to reduce the burden of the virus to their employees."
Article | Thread
Preprint: MedRxiv
New-onset chronic musculoskeletal pain following COVID-19 infection fulfil the Fibromyalgia clinical syndrome criteria — Omar Khoja et al.
"The study found that 72.2% of the patients with new-onset chronic MSK pain following COVID-19 infection met the criteria for FMS. These findings support the hypothesis that FMS may develop as a long-term sequela of a viral infection"
Article | Thread
Bratislavske lekarske listy
Baseline capillaroscopy provides no evidence of microvascular changes to predict long-COVID syndrome — Ulusoy et al.
"There were 35 individuals (66%) with long-COVID syndrome. The most common symptoms related to long-COVID were fatigue (43.4%), myalgia (34%), arthralgia (20.8%), dyspnea (20.8%)." "Like other baseline characteristics, the proportion of patients with abnormal capillaroscopic findings (40% vs 44%, p=0.76) was similar between patients with and without long-COVID syndrome."
Article | Thread
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S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 15th July 2024
News, advocacy and articles
UK: The Times ‘My child died of ME’: a scandal waiting for its Post Office moment
"Sean O’Neill is dreading his daughter’s inquest but hopes it will show the nation how people with the condition are routinely stigmatised and ignored by the NHS."
Article | Thread
The Times Sajid Javid: Labour must deliver on ME as patients suffer without a cure
"Javid’s intervention comes ahead of a landmark inquest which begins on Monday into the death of Maeve Boothby O’Neill, who suffered from ME and died aged 27 in October 2021."
Article | Thread
The Telegraph NHS treatment for ME patients to be examined - Michael Searles
"Maeve Boothby-O’Neill, 27, who died in October 2021, faced barriers to receiving proper care"
Article | Thread
STAT Functional neurological disorder is not an appropriate diagnosis for people with long Covid - by David Tuller, Mady Hornig, and David Putrino
A well written opinion piece warning against labelling long Covid as a functional neurological disorder. "To address this urgent medical issue, it is unnecessary and unhelpful to resort to categorical diagnostic assertions largely based — as was conversion disorder — on questionable arguments and unconvincing research claims."
Article l Thread
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Research news and commentary
Trial by Error by David Tuller More Debate About Treatment of Severe ME/CFS
A group of parents and carers have published an open response to Professor Jonathan Edwards' recent article on managing nutrition of severely ill patients. "The response from the group of parents and carers acknowledges the value of Professor Edwards’ efforts. But the authors also take exception to his views about the evidence base for some of the available approaches for treatment and management of symptoms—or rather, his views about the lack of a reliable evidence base."
Article l Thread
Medscape UK Long COVID & Chronic Fatigue Syndrome: The Similarities are Uncanny - Annie Lennon
Outlines current ME/CFS research in the UK, the delays to the government plans for implementation of the NICE ME/CFS guideline, and the need for more research funding.
Article | Thread
Australia RRR's science programme Einstein A Go-Go
Forum member Dr. Daniel Missailidis from La Trobe University discusses research into infection-associated chronic diseases, including long COVID and ME/CFS.
Podcast | Thread
USA - CDC A transcript and slideshow from the May 6th ME/CFS Stakeholder Engagement and Communication (SEC) Call (Deep Phenotyping of Post-Infection Syndromes and the Way Forward) has been posted on the CDC website. The video for this meeting is not yet posted.
Website | Thread
USA - NIH A recording from the July 17 meeting (Virtual Webinar & Listening Session on Clinical Research Engagement) has been posted on the NIH website along with the agenda and slides from the meeting.
Website | Thread
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Research
ME/CFS research
Workwell Foundation
Blood Flow To The Head Is Reduced in a Patient With Myalgic Encephalomyelitis With Confirmed Post-Exertional Malaise
This poster presentation presents a novel in-ear device provided by Lumia Health to measure blood flow to the head via the external carotid artery as a proxy for cerebral blood flow.
Poster | Thread
BMJ Paediatrics Open
OP-103 Severe ME/CFS in children: a British paediatric surveillance unit study
In a prospective surveillance study conducted by the British Paediatric Surveillance Unit, the estimated prevalence of severe ME/CFS in children was 3.3 in one million. Only 64% of confirmed severe ME/CFS cases had been referred to specialist services.
Article | Thread
Journal of Infection and Public Health
Increased risk of chronic fatigue syndrome following pneumonia: A population-based Cohort study - Hsu et al.
The authors used the National Health Insurance Research Database of Taiwan to estimate the risk of CFS following pneumonia. The incidence density rates were 6.13 and 8.70 per 1000 person‐years among the non‐pulmonary infection and pulmonary infection populations.
Article | Thread
Long Covid research
Allergy
Differential decline of SARS-CoV-2-specific antibody levels, innate and adaptive immune cells, and shift of Th1/inflammatory to Th2 serum cytokine levels long after first COVID-19 — Bernhard Kratzer et al.
"Along with the reductions of neutrophils, monocytes and NK cells, it thus seems that a single SARS- CoV-2 infection may cause a long-lasting impact on the cells of the innate and adaptive immune system" "it seems more likely that the infection-induced cell damage may indeed occur rather at the stem cell level but further investigations will be necessary"
Article | Thread
Preprint: MedRxiv
Altered spike IgG Fc N-linked glycans are associated with hyperinflammatory state in adult COVID and Multisystem Inflammatory Syndrome in Children — Jacob D. Sherman et al.
"We identified previously undescribed relationships between spike IgG glycan modifications and inflammatory cytokines/chemokines that expand our understanding of IgG glycosylation changes that may impact COVID and MIS-C immunopathology."
Article | Thread
Lancet: eBioMedicine
Blood DNA methylation in post-acute sequelae of COVID-19 (PASC): a prospective cohort study — Joseph Balnis et al.
"we show that patients with PASC display a blood DNA methylation profile that is different from age-matched healthy participants." "Our data suggests that there is a common biological process that underpins PASC that supersedes single organ dysfunctions."
Article | Thread
European Archives of Psychiatry and Clinical Neuroscience
Molecular overlaps of neurological manifestations of COVID-19 and schizophrenia from a proteomic perspective — Antunes et al.
"Proteomics revealed distinct patterns of metabolic dysregulation in schizophrenia and COVID-19. Carbohydrate metabolism showed alterations in both conditions, while amino acid metabolism was predominantly affected in schizophrenia alone."
Article | Thread
Nature Scientific Reports
Preferential and sustained platelet activation in COVID-19 survivors with mental disorders — Maugeri et al.
"We investigated platelet activation in 141 COVID‑19 survivors at one month after clearance of the virus, comparing subjects with or without an established pre‑existing diagnosis of mental disorder according to the DSM‑5. We found that platelets from patients with a positive history of psychiatric disorder underwent unconventional activation more frequently than conventional activation or no activation at all."
Article | Thread
The Pediatric Infectious Disease Journal
Circulating Activated Platelets in Children With Long Covid: A Case-Controlled Preliminary Observation — Buonsenso, Danilo et al.
"These data demonstrate that platelets in children with Long Covid circulate in an activated state, as shown by increased expression of P-selectin"
Article | Thread
Pulmonary Circulation
Quantifying the impact of post-acute sequelae of coronavirus on the cardiopulmonary endurance of athletes — Daniel Lubarsky et al.
"PASC not only leads to a significant symptomatic burden for several months following acute infection, but also impacts athletes' ability to engage in exercise as a whole, leads to worse dyspnea with everyday activities, and impairs athletes’ mobility and ability to engage in usual activities such as work, study, and housework." "Nearly one‐third of high performing athletes with PASC experienced debilitating symptoms resulting in a complete inability to engage in any cardiovascular endurance exercise at 3 months post‐COVID."
Article | Thread
Journal of Exercise Science & Fitness
Physical exercise-related manifestations of long COVID: A systematic review and meta-analysis — Zheng et al.
"The 6-min walk test, maximal oxygen consumption (VO2max), and anaerobic threshold were impaired in COVID-19 survivors 3 months post-infection compared with non-COVID-19 controls in exercise testing, while VO2 were comparable between the two groups at rest."
Article | Thread
Journal of Exercise Science & Fitness
SARS-CoV-2 infection decreases cardiorespiratory fitness and time-trial performance even two months after returning to regular training — Insights from a longitudinal case series of well-trained kayak athletes — Deng et al.
"There were significant decreases in peak oxygen uptake (− 9.7 %; effect size [ES] = 1.38), peak oxygen pulse (− 5.7 %; ES = 0.96), and peak heart rate (− 1.9 %; ES = 0.61)."
Article | Thread
New England Journal of Medicine
Postacute Sequelae of SARS-CoV-2 Infection in the Pre-Delta, Delta, and Omicron Eras — Yan Xie et al.
Study of US veterans, predominantly older and male. "The cumulative incidence of PASC during the first year after SARS-CoV-2 infection decreased over the course of the pandemic, but the risk of PASC remained substantial even among vaccinated persons who had SARS-CoV-2 infection in the omicron era."
Article | Thread
The Lancet Regional Health - Americas
Prevalence, risk factors, and impact of long COVID in a socially vulnerable community in Brazil: a prospective cohort study — Azambuja et al.
"Our findings reveal a high burden of severe and persistent physical and mental health sequelae in a socially vulnerable community following COVID-19."
Article | Thread
Computational and Structural Biotechnology Journal
CORACLE (COVID-19 liteRAture CompiLEr): A platform for efficient tracking and extraction of SARS-CoV-2 and COVID-19 literature, with examples from post-COVID with respiratory involvement — Kristina Piontkovskaya et al.
"CORACLE is an effective tool for the extraction and analysis of literature. Its functionalities, including the MeSH trends and customizable citation mapping, facilitate the discovery of emerging trends in COVID-19 and PASC research."
Article | Thread
The Clinical Neuropsychologist
Neuropsychological functioning after COVID-19: minor differences between individuals with and without persistent complaints after SARS-CoV-2 infection — Anouk Verveen et al.
"individuals with persistent complaints had an increased likelihood of slower information processing speed performance on the Stroop word reading (OR = 2.45, 95%CI = 1.02–5.84) compared to those without persistent complaints."
Article | Thread
............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, advocacy and articles
UK: The Times ‘My child died of ME’: a scandal waiting for its Post Office moment
"Sean O’Neill is dreading his daughter’s inquest but hopes it will show the nation how people with the condition are routinely stigmatised and ignored by the NHS."
Article | Thread
The Times Sajid Javid: Labour must deliver on ME as patients suffer without a cure
"Javid’s intervention comes ahead of a landmark inquest which begins on Monday into the death of Maeve Boothby O’Neill, who suffered from ME and died aged 27 in October 2021."
Article | Thread
The Telegraph NHS treatment for ME patients to be examined - Michael Searles
"Maeve Boothby-O’Neill, 27, who died in October 2021, faced barriers to receiving proper care"
Article | Thread
STAT Functional neurological disorder is not an appropriate diagnosis for people with long Covid - by David Tuller, Mady Hornig, and David Putrino
A well written opinion piece warning against labelling long Covid as a functional neurological disorder. "To address this urgent medical issue, it is unnecessary and unhelpful to resort to categorical diagnostic assertions largely based — as was conversion disorder — on questionable arguments and unconvincing research claims."
Article l Thread
.............
Research news and commentary
Trial by Error by David Tuller More Debate About Treatment of Severe ME/CFS
A group of parents and carers have published an open response to Professor Jonathan Edwards' recent article on managing nutrition of severely ill patients. "The response from the group of parents and carers acknowledges the value of Professor Edwards’ efforts. But the authors also take exception to his views about the evidence base for some of the available approaches for treatment and management of symptoms—or rather, his views about the lack of a reliable evidence base."
Article l Thread
Medscape UK Long COVID & Chronic Fatigue Syndrome: The Similarities are Uncanny - Annie Lennon
Outlines current ME/CFS research in the UK, the delays to the government plans for implementation of the NICE ME/CFS guideline, and the need for more research funding.
Article | Thread
Australia RRR's science programme Einstein A Go-Go
Forum member Dr. Daniel Missailidis from La Trobe University discusses research into infection-associated chronic diseases, including long COVID and ME/CFS.
Podcast | Thread
USA - CDC A transcript and slideshow from the May 6th ME/CFS Stakeholder Engagement and Communication (SEC) Call (Deep Phenotyping of Post-Infection Syndromes and the Way Forward) has been posted on the CDC website. The video for this meeting is not yet posted.
Website | Thread
USA - NIH A recording from the July 17 meeting (Virtual Webinar & Listening Session on Clinical Research Engagement) has been posted on the NIH website along with the agenda and slides from the meeting.
Website | Thread
............
Research
ME/CFS research
Workwell Foundation
Blood Flow To The Head Is Reduced in a Patient With Myalgic Encephalomyelitis With Confirmed Post-Exertional Malaise
This poster presentation presents a novel in-ear device provided by Lumia Health to measure blood flow to the head via the external carotid artery as a proxy for cerebral blood flow.
Poster | Thread
BMJ Paediatrics Open
OP-103 Severe ME/CFS in children: a British paediatric surveillance unit study
In a prospective surveillance study conducted by the British Paediatric Surveillance Unit, the estimated prevalence of severe ME/CFS in children was 3.3 in one million. Only 64% of confirmed severe ME/CFS cases had been referred to specialist services.
Article | Thread
Journal of Infection and Public Health
Increased risk of chronic fatigue syndrome following pneumonia: A population-based Cohort study - Hsu et al.
The authors used the National Health Insurance Research Database of Taiwan to estimate the risk of CFS following pneumonia. The incidence density rates were 6.13 and 8.70 per 1000 person‐years among the non‐pulmonary infection and pulmonary infection populations.
Article | Thread
Long Covid research
Allergy
Differential decline of SARS-CoV-2-specific antibody levels, innate and adaptive immune cells, and shift of Th1/inflammatory to Th2 serum cytokine levels long after first COVID-19 — Bernhard Kratzer et al.
"Along with the reductions of neutrophils, monocytes and NK cells, it thus seems that a single SARS- CoV-2 infection may cause a long-lasting impact on the cells of the innate and adaptive immune system" "it seems more likely that the infection-induced cell damage may indeed occur rather at the stem cell level but further investigations will be necessary"
Article | Thread
Preprint: MedRxiv
Altered spike IgG Fc N-linked glycans are associated with hyperinflammatory state in adult COVID and Multisystem Inflammatory Syndrome in Children — Jacob D. Sherman et al.
"We identified previously undescribed relationships between spike IgG glycan modifications and inflammatory cytokines/chemokines that expand our understanding of IgG glycosylation changes that may impact COVID and MIS-C immunopathology."
Article | Thread
Lancet: eBioMedicine
Blood DNA methylation in post-acute sequelae of COVID-19 (PASC): a prospective cohort study — Joseph Balnis et al.
"we show that patients with PASC display a blood DNA methylation profile that is different from age-matched healthy participants." "Our data suggests that there is a common biological process that underpins PASC that supersedes single organ dysfunctions."
Article | Thread
European Archives of Psychiatry and Clinical Neuroscience
Molecular overlaps of neurological manifestations of COVID-19 and schizophrenia from a proteomic perspective — Antunes et al.
"Proteomics revealed distinct patterns of metabolic dysregulation in schizophrenia and COVID-19. Carbohydrate metabolism showed alterations in both conditions, while amino acid metabolism was predominantly affected in schizophrenia alone."
Article | Thread
Nature Scientific Reports
Preferential and sustained platelet activation in COVID-19 survivors with mental disorders — Maugeri et al.
"We investigated platelet activation in 141 COVID‑19 survivors at one month after clearance of the virus, comparing subjects with or without an established pre‑existing diagnosis of mental disorder according to the DSM‑5. We found that platelets from patients with a positive history of psychiatric disorder underwent unconventional activation more frequently than conventional activation or no activation at all."
Article | Thread
The Pediatric Infectious Disease Journal
Circulating Activated Platelets in Children With Long Covid: A Case-Controlled Preliminary Observation — Buonsenso, Danilo et al.
"These data demonstrate that platelets in children with Long Covid circulate in an activated state, as shown by increased expression of P-selectin"
Article | Thread
Pulmonary Circulation
Quantifying the impact of post-acute sequelae of coronavirus on the cardiopulmonary endurance of athletes — Daniel Lubarsky et al.
"PASC not only leads to a significant symptomatic burden for several months following acute infection, but also impacts athletes' ability to engage in exercise as a whole, leads to worse dyspnea with everyday activities, and impairs athletes’ mobility and ability to engage in usual activities such as work, study, and housework." "Nearly one‐third of high performing athletes with PASC experienced debilitating symptoms resulting in a complete inability to engage in any cardiovascular endurance exercise at 3 months post‐COVID."
Article | Thread
Journal of Exercise Science & Fitness
Physical exercise-related manifestations of long COVID: A systematic review and meta-analysis — Zheng et al.
"The 6-min walk test, maximal oxygen consumption (VO2max), and anaerobic threshold were impaired in COVID-19 survivors 3 months post-infection compared with non-COVID-19 controls in exercise testing, while VO2 were comparable between the two groups at rest."
Article | Thread
Journal of Exercise Science & Fitness
SARS-CoV-2 infection decreases cardiorespiratory fitness and time-trial performance even two months after returning to regular training — Insights from a longitudinal case series of well-trained kayak athletes — Deng et al.
"There were significant decreases in peak oxygen uptake (− 9.7 %; effect size [ES] = 1.38), peak oxygen pulse (− 5.7 %; ES = 0.96), and peak heart rate (− 1.9 %; ES = 0.61)."
Article | Thread
New England Journal of Medicine
Postacute Sequelae of SARS-CoV-2 Infection in the Pre-Delta, Delta, and Omicron Eras — Yan Xie et al.
Study of US veterans, predominantly older and male. "The cumulative incidence of PASC during the first year after SARS-CoV-2 infection decreased over the course of the pandemic, but the risk of PASC remained substantial even among vaccinated persons who had SARS-CoV-2 infection in the omicron era."
Article | Thread
The Lancet Regional Health - Americas
Prevalence, risk factors, and impact of long COVID in a socially vulnerable community in Brazil: a prospective cohort study — Azambuja et al.
"Our findings reveal a high burden of severe and persistent physical and mental health sequelae in a socially vulnerable community following COVID-19."
Article | Thread
Computational and Structural Biotechnology Journal
CORACLE (COVID-19 liteRAture CompiLEr): A platform for efficient tracking and extraction of SARS-CoV-2 and COVID-19 literature, with examples from post-COVID with respiratory involvement — Kristina Piontkovskaya et al.
"CORACLE is an effective tool for the extraction and analysis of literature. Its functionalities, including the MeSH trends and customizable citation mapping, facilitate the discovery of emerging trends in COVID-19 and PASC research."
Article | Thread
The Clinical Neuropsychologist
Neuropsychological functioning after COVID-19: minor differences between individuals with and without persistent complaints after SARS-CoV-2 infection — Anouk Verveen et al.
"individuals with persistent complaints had an increased likelihood of slower information processing speed performance on the Stroop word reading (OR = 2.45, 95%CI = 1.02–5.84) compared to those without persistent complaints."
Article | Thread
............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 22nd July 2024
News
UK Inquest Warning: upsetting content
The first week of a two week inquest into the death of Maeve Boothby O'Neill who had very severe ME/CFS was held this week. There has been wide coverage on media and social media. Most articles have been accurate and sympathetic. Sadly there have been some inaccurate articles which we have not linked here.
This article from The Times summarises clearly key points from the first week of the inquest: Killed by ME, the terrible illness that divides doctors
More media articles:
The Times 22nd July ME patient’s GP had ‘never seen anyone so poorly treated’, inquest told
23rd July ME patients are failed by lack of wards and woeful research, inquest told
24th July NHS staff thought patient’s illness was self-inflicted, inquest told
BBC 22nd July Woman died after begging GP for help
23rd July ME patients face specialist bed shortage
24th July Doctors held 'outdated' ME views, inquest hears
The Independent | Daily Mail | Yahoo News | Express | Irish News | The Canary | The Guardian | The Telegraph | The Standard
TV: Channel 4 News
ME Association | Action for ME
Thread
Trial by Error by David Tuller
Maeve Boothby O´Neill Inquest Highlights Major Systemic Failures at UK's National Health Service and in Medical Education
Tuller has followed the first days of the inquest into Maeve's death. "The medical-academic-industrial complex failed Maeve, and is currently failing many other patients with ME – some of them in dire straits. And the gaping holes that the inquest has already revealed in the tattered patchwork of care must be fixed if such terrible outcomes are to be prevented in the future."
Article l Thread
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Advocacy
UK #ThereforME campaign Building an NHS that’s there for Long Covid and ME
Set up by two carers and supported by UK national ME/CFS and Long Covid organisations, the website includes a report of a survey, and an open letter to Wes Streeting, Secretary of State for Health and Social Care, inviting signatures by 2nd August. Aims include implementation of the NICE guideline, more research, and use of technology.
Website with link to letter | Thread
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Research commentary
ME Research UK reports on Invest in ME Research Conference 2024
The report provides brief outlines of presentations, including plans for new research.
Article | Thread
Trial by Error by David Tuller
"Effort Preference"? WTF?
About the discussion on the NIH Intramural ME/CFS study's claim of "effort preference" being the reason behind the profound fatigue in ME/CFS. Tuller comments: "It is hard to fathom how those leading this research team could be so out of touch and tone-deaf".
Article l Thread
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Coming events
USA: RECOVER The Long Covid research initiative RECOVER is planning a kick-off meeting September 23-25 for a new program titled RECOVER - Treating Long COVID. Meeting agenda and registration will be coming soon.
Thread
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Research
ME/CFS research
PLOS ONE
Determining the societal value of a prospective drug for ME/CFS in Germany - Afschin Gandjour
"The anticipated introduction of a prospective drug is estimated to yield a quality-adjusted life year (QALY) gain of approximately 29,000 and a societal value of about €2.6 billion. The optimal R&D investment in Germany is estimated at €676 million."
Article | Thread
PLOS ONE
Six-year follow-up of participants in two clinical trials of rituximab or cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Rekeland et al.
This follow-up study suggests that cyclophosphamide might lead to improvements in a subgroup of patients, but due to the high toxicity, the authors argue the drug should not be used for ME/CFS patients outside clinical trials.
Article | Thread
Quality in Sport
Chronic fatigue syndrome related to herpes simplex viruses infection, a narrative review - Bienkowski et al.
This Polish research team argues that HSV, particularly HSV-1 and HSV-2, may contribute to CFS development although more research is needed.
Article | Thread
Chronobiology International
Sleep and circadian rhythm alterations in myalgic encephalomyelitis/chronic fatigue syndrome and post-COVID fatigue syndrome and its association with cardiovascular risk factors: A prospective cohort study - Zerón-Rugerio et al.
This Spanish study suggests that lipid profiles in ME/CFS are linked to disrupted circadian rhythms and sleep patterns, possibly due to endothelial dysfunction.
Article | Thread
Long Covid research
Brain, Behavior, and Immunity
SARS-CoV-2 S1 subunit produces a protracted priming of the neuroinflammatory, physiological, and behavioral responses to a remote immune challenge: A role for corticosteroids — Frank et al.
Rodent study. "findings provide evidence that the SARS-CoV-2 S1 antigen produces a protracted priming or sensitization of neuroinflammatory processes, which lowers the threshold for activation"
Article | Thread
Nature Scientific Reports
Inflammation in the COVID-19 airway is due to inhibition of CFTR signaling by the SARS-CoV-2 spike protein — Caohuy et al.
"We found that CFTR protein expression and CFTR cAMP-activated chloride channel activity were lost when the model epithelium was exposed to SARS-CoV-2 spike proteins."
Article | Thread
Preprint: MedRxiv
Identification of SARS-CoV-2 Persistent Infectious Epithelial Syndrome (SPIES) as a Novel Disease Entity using Clinical, Histologic, and RNA Programmatic Data — Thomas Wallach et al.
"we present clear clinical, histologic, and RNA transcriptomic evidence of a novel SARS-CoV-2 syndrome predicated on a local inflammatory response to persistent viral presence in the intestinal epithelium"
Article | Thread
JACC: Advances
Clinical Implications of COVID-19-Related Endothelial Dysfunction — Aljadah et al.
"Clearer connection of PASC symptoms to endothelial dysfunction will require multidisciplinary approaches, including input from research-focused and clinical experts in infectious disease, neurology, pulmonology, and vascular physiology."
Article | Thread
Immunogenetics
Bioinformatic analysis predicts the regulatory function of noncoding SNPs associated with Long COVID-19 syndrome — Maiti
"All these three SNPs reside in noncoding regions implying their regulatory function in the genome. In silico dissection suggests that rs10999901 and rs1868001 physically interact with the CDH23 and C10orf105 genes. Both SNPs act as distant enhancers and bind with several transcription factors"
Article | Thread
Frontiers in Medicine
Long COVID: cognitive, balance, and retina manifestations — Carmona-Cervelló et al.
"In our study, patients showed impairments in several cognitive domains, including executive functions, attention, speed processing, and memory."
Article | Thread
JAMA Network Open
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome After SARS-CoV-2 Infection — Elizabeth R. Unger et al.
"[patients who] had self-reported symptoms suggestive of acute SARS-CoV-2 infection at the time of their SARS-CoV-2 test." "Our findings suggest that COVID-19 is no more likely than other acute infections to be associated with ME/CFS and that acute illnesses more broadly may be associated with chronic symptom burden from ME/CFS."
Article | Thread
Nature Scientific Reports
Clinical and endocrine features of orthostatic intolerance detected in patients with long COVID — Kato et al.
"Serum cortisol levels in the ST-positive patients aged over 20 years were higher and growth hormone levels in the patients under 20 years of age were lower than those in the ST-negative group. Autonomous nervous symptoms, transient DBP rise with increasing HR after standing, and endocrine dysfunctions are helpful for detecting OI related to long COVID."
Article | Thread
Sociology of Health & Illness
Working knowledge, uncertainty and ontological politics: An ethnography of UK long covid clinics — Trisha Greenhalgh et al.
Describes clinics that take a broadly biomedical view and those that take a psychosocal view.
Article | Thread
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S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News
UK Inquest Warning: upsetting content
The first week of a two week inquest into the death of Maeve Boothby O'Neill who had very severe ME/CFS was held this week. There has been wide coverage on media and social media. Most articles have been accurate and sympathetic. Sadly there have been some inaccurate articles which we have not linked here.
This article from The Times summarises clearly key points from the first week of the inquest: Killed by ME, the terrible illness that divides doctors
More media articles:
The Times 22nd July ME patient’s GP had ‘never seen anyone so poorly treated’, inquest told
23rd July ME patients are failed by lack of wards and woeful research, inquest told
24th July NHS staff thought patient’s illness was self-inflicted, inquest told
BBC 22nd July Woman died after begging GP for help
23rd July ME patients face specialist bed shortage
24th July Doctors held 'outdated' ME views, inquest hears
The Independent | Daily Mail | Yahoo News | Express | Irish News | The Canary | The Guardian | The Telegraph | The Standard
TV: Channel 4 News
ME Association | Action for ME
Thread
Trial by Error by David Tuller
Maeve Boothby O´Neill Inquest Highlights Major Systemic Failures at UK's National Health Service and in Medical Education
Tuller has followed the first days of the inquest into Maeve's death. "The medical-academic-industrial complex failed Maeve, and is currently failing many other patients with ME – some of them in dire straits. And the gaping holes that the inquest has already revealed in the tattered patchwork of care must be fixed if such terrible outcomes are to be prevented in the future."
Article l Thread
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Advocacy
UK #ThereforME campaign Building an NHS that’s there for Long Covid and ME
Set up by two carers and supported by UK national ME/CFS and Long Covid organisations, the website includes a report of a survey, and an open letter to Wes Streeting, Secretary of State for Health and Social Care, inviting signatures by 2nd August. Aims include implementation of the NICE guideline, more research, and use of technology.
Website with link to letter | Thread
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Research commentary
ME Research UK reports on Invest in ME Research Conference 2024
The report provides brief outlines of presentations, including plans for new research.
Article | Thread
Trial by Error by David Tuller
"Effort Preference"? WTF?
About the discussion on the NIH Intramural ME/CFS study's claim of "effort preference" being the reason behind the profound fatigue in ME/CFS. Tuller comments: "It is hard to fathom how those leading this research team could be so out of touch and tone-deaf".
Article l Thread
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Coming events
USA: RECOVER The Long Covid research initiative RECOVER is planning a kick-off meeting September 23-25 for a new program titled RECOVER - Treating Long COVID. Meeting agenda and registration will be coming soon.
Thread
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Research
ME/CFS research
PLOS ONE
Determining the societal value of a prospective drug for ME/CFS in Germany - Afschin Gandjour
"The anticipated introduction of a prospective drug is estimated to yield a quality-adjusted life year (QALY) gain of approximately 29,000 and a societal value of about €2.6 billion. The optimal R&D investment in Germany is estimated at €676 million."
Article | Thread
PLOS ONE
Six-year follow-up of participants in two clinical trials of rituximab or cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Rekeland et al.
This follow-up study suggests that cyclophosphamide might lead to improvements in a subgroup of patients, but due to the high toxicity, the authors argue the drug should not be used for ME/CFS patients outside clinical trials.
Article | Thread
Quality in Sport
Chronic fatigue syndrome related to herpes simplex viruses infection, a narrative review - Bienkowski et al.
This Polish research team argues that HSV, particularly HSV-1 and HSV-2, may contribute to CFS development although more research is needed.
Article | Thread
Chronobiology International
Sleep and circadian rhythm alterations in myalgic encephalomyelitis/chronic fatigue syndrome and post-COVID fatigue syndrome and its association with cardiovascular risk factors: A prospective cohort study - Zerón-Rugerio et al.
This Spanish study suggests that lipid profiles in ME/CFS are linked to disrupted circadian rhythms and sleep patterns, possibly due to endothelial dysfunction.
Article | Thread
Long Covid research
Brain, Behavior, and Immunity
SARS-CoV-2 S1 subunit produces a protracted priming of the neuroinflammatory, physiological, and behavioral responses to a remote immune challenge: A role for corticosteroids — Frank et al.
Rodent study. "findings provide evidence that the SARS-CoV-2 S1 antigen produces a protracted priming or sensitization of neuroinflammatory processes, which lowers the threshold for activation"
Article | Thread
Nature Scientific Reports
Inflammation in the COVID-19 airway is due to inhibition of CFTR signaling by the SARS-CoV-2 spike protein — Caohuy et al.
"We found that CFTR protein expression and CFTR cAMP-activated chloride channel activity were lost when the model epithelium was exposed to SARS-CoV-2 spike proteins."
Article | Thread
Preprint: MedRxiv
Identification of SARS-CoV-2 Persistent Infectious Epithelial Syndrome (SPIES) as a Novel Disease Entity using Clinical, Histologic, and RNA Programmatic Data — Thomas Wallach et al.
"we present clear clinical, histologic, and RNA transcriptomic evidence of a novel SARS-CoV-2 syndrome predicated on a local inflammatory response to persistent viral presence in the intestinal epithelium"
Article | Thread
JACC: Advances
Clinical Implications of COVID-19-Related Endothelial Dysfunction — Aljadah et al.
"Clearer connection of PASC symptoms to endothelial dysfunction will require multidisciplinary approaches, including input from research-focused and clinical experts in infectious disease, neurology, pulmonology, and vascular physiology."
Article | Thread
Immunogenetics
Bioinformatic analysis predicts the regulatory function of noncoding SNPs associated with Long COVID-19 syndrome — Maiti
"All these three SNPs reside in noncoding regions implying their regulatory function in the genome. In silico dissection suggests that rs10999901 and rs1868001 physically interact with the CDH23 and C10orf105 genes. Both SNPs act as distant enhancers and bind with several transcription factors"
Article | Thread
Frontiers in Medicine
Long COVID: cognitive, balance, and retina manifestations — Carmona-Cervelló et al.
"In our study, patients showed impairments in several cognitive domains, including executive functions, attention, speed processing, and memory."
Article | Thread
JAMA Network Open
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome After SARS-CoV-2 Infection — Elizabeth R. Unger et al.
"[patients who] had self-reported symptoms suggestive of acute SARS-CoV-2 infection at the time of their SARS-CoV-2 test." "Our findings suggest that COVID-19 is no more likely than other acute infections to be associated with ME/CFS and that acute illnesses more broadly may be associated with chronic symptom burden from ME/CFS."
Article | Thread
Nature Scientific Reports
Clinical and endocrine features of orthostatic intolerance detected in patients with long COVID — Kato et al.
"Serum cortisol levels in the ST-positive patients aged over 20 years were higher and growth hormone levels in the patients under 20 years of age were lower than those in the ST-negative group. Autonomous nervous symptoms, transient DBP rise with increasing HR after standing, and endocrine dysfunctions are helpful for detecting OI related to long COVID."
Article | Thread
Sociology of Health & Illness
Working knowledge, uncertainty and ontological politics: An ethnography of UK long covid clinics — Trisha Greenhalgh et al.
Describes clinics that take a broadly biomedical view and those that take a psychosocal view.
Article | Thread
............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
For next week's news go to this thread:
News in Brief - August 2024
News in Brief - August 2024