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News in Brief - August 2024
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Week beginning 29th July 2024
News
UK Inquest Warning: upsetting content
The second 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 was more evidence from clinicians which exposed the lack of specialist hospital provision for ME/CFS, and problems with attitudes of clinicians who believed wrongly that it is a mental illness, adversely impacting medical and care decisions. On Thursday Maeve's parents, Sarah Boothby and Sean O'Neill gave their courageous and devastating statements.
The coroner will deliver her findings next Friday, 9th August.
ME Research UK article | Thread
Media coverage included:
The Times Wednesday: ME patient ‘would have received better care if she had eating disorder’
The Times Thursday: ME patient wanted a loving hug but it hurt too much, inquest told
The Times Friday: Doctors didn't accept ME was a medical condition, inquest told
Telegraph Tuesday, Wednesday, Friday | BBC Saturday, Thursday | ITV Wednesday, Thursday | Guardian Thursday, Friday | Belfast Telegraph Thursday | Independent Thursday | Observer letters Sunday
Trial by Error by David Tuller
Guardian Published Response to Boothby O´Neill Inquest from Ranking Member of the CBT/GET Ideological Brigades
On an opinion piece by physician and CBT/GET proponent Alastair Miller about the inquest of Maeve Boothby O´Neill's death. "This essay reads like it was written to justify the fatal mistreatment suffered by Maeve at the hands of health care providers who unwittingly bought into the PACE and CBT/GET propaganda. It is a disgraceful display of ignorance, hypocrisy, and historical revisionism."
Article l Thread
Dr Weir's Letters on Treatment of Maeve Boothby O´Neill
A publication of two letters from physician William Weir to a consultant at the Royal Devon and Exeter Hospital and to the former CEO of the Royal Devon University Healthcare NHS Foundation Trust. These were read out during the inquest.
Article l Thread
United States Senate Long Covid Moonshot Bill
Senator Bernie Sanders introduces historic Moonshot legislation to address the long COVID crisis. The Long COVID Research Moonshot Act of 2024 provides $1 billion in mandatory funding per year for 10 years to the National Institutes of Health (NIH) to support long COVID research, the urgent pursuit of treatments, and the expansion of care for patients across the country.
Senate Press Release | Bill | Thread
Sweden The journal of the Swedish Medical Association reports on the lack of clinics for long Covid in the country. Region Stockholm is however an exception and the article mentions they also accept ME/CFS and other similar postinfectious diseases.
Article l Thread
...............
Research news
Australia Government announces Medical Research Future Fund
14 projects funded with a $15m total investment. $5m for "Optimising supportive consumer and provider journeys through the postacute sequelae of COVID-19 (PASC)" and $2m for "Understanding the impacts of postacute sequelae of COVID-19 on the Australian healthcare system and workforce, and modelling the impact of prevention strategies to inform policy". A number of biological studies also funded up to the $1m level.
Announcement | Reddit Thread | Forum Thread
..............
Research
ME/CFS research
Preprint
Efficacy of Repeat Immunoadsorption in Post-COVID ME/CFS Patients with Elevated B2-Adrenergic Receptor Autoantibodies: A Prospective Cohort Study - Stein et al.
20 post-COVID ME/CFS patients found to have elevated β2 AR-AB received five immunoadsorption sessions. Participants reported some significant improvements but "In most patients symptoms worsened again after six months."
Article | Thread
Medicina
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Impact on Quality of Life (QoL) of Persons with ME/CFS - Muirhead et al.
876 participants from 26 countries who reported a health care professional diagnosis of ME/CFS, completed the EuroQoL questionnaire (EQ-5D-3L). "Contrary to popular misconception, anxiety and depression are the least often affected areas in persons with ME/CFS who are most impacted by their inability to perform usual activities."
Article | Thread
Archives of Disease in Childhood
A quest to manage CYP with ME/CFS and long covid under one MDT service – evaluation of a regional centre for CYP ME/CFS and long covid services - Abu & Begum
The authors argue that it would be valuable to merge both the services and manage ME/CFS and Long Covid patients under the same multidisciplinary team.
Article | Thread
Preprints.org
Overrepresentation of TTMV9 in a Subgroup of Patients with ME/CFS - Gimenez Orenga et al.
The Spanish research team of Elisa Oltra found an overexpression of the Torque Teno Mini Virus 9 (TTMV9) in a subgroup of ME/CFS patients.
Article | Thread
Microbiome
Systemic antibody responses against gut microbiota flagellins implicate shared and divergent immune reactivity in Crohn’s disease and chronic fatigue syndrome - Bourgonje et al.
The authors argue that both Crohn's disease and ME/CFS patients exhibit elevated antibody responses against distinct regions of flagellins compared to healthy individuals.
Article | Thread
Long Covid research
New England Journal of Medicine
Long Covid Defined — E. Wesley Ely et al.
Commentary describing the development of the recently published NASEM Long Covid definition. "the committee adopted the patient-coined term “long Covid” as a simple, well understood, and readily communicated label for this condition and urged its uniform use."
Article | Thread
The Lancet
Long COVID: a clinical update — Trisha Greenhalgh et al.
"although there is extensive evidence to support multiple interacting biological mechanisms in the pathogenesis of long COVID, most current clinical management is not derived from these biological mechanisms. We believe there is potential for targeted research to close this gap and combat what has been described as the “mass disabling event” of long COVID."
Article | Thread
Journal of Clinical Medicine
Exercise Intolerance Is Associated with Cardiovascular Dysfunction in Long COVID-19 Syndrome — Vontetsianos et al.
"In this study, we have demonstrated that cardiovascular dysfunction at rest was associated with exercise intolerance in long COVID-19 patients. Specifically, impaired left and right ventricular performance was associated with reduced peak VO 2 during incremental exercise in patients with long COVID-19 syndrome when compared with age-matched healthy controls."
Article | Thread
Journal of Personalized Medicine
Deciphering Alveolo-Capillary Gas Transfer Disturbances in Patients Recovering from COVID-19 Lung Disease — Hua-Huy et al.
"Our study confirmed that lung gas transfer impairment is present in all COVID-19 patients, even in the mildest form of the disease when the alveolar volume is still normal. The pulmonary capillary volume (VC) is the most affected parameter, with severe impairment starting in patients with moderately (but not severely) impaired lung volumes. An alteration of VC, as an early and sensitive marker of altered lung gas exchange, suggests a pivotal role of vascular abnormality in COVID-19 and post-COVID-19 lung disease."
Article | Thread
Viruses
Sex Modifies the Effect of COVID-19 on Arterial Elasticity — Durieux et al.
"To our knowledge, this is the first study to establish that sex is an effect modifier of SARS‑CoV‑2 infection on arterial elasticity among COVID‑survivors with PASC."
Article | Thread
Cardiovascular Research
COVID-19 related myocardial injury is associated with immune dysregulation in symptomatic patients with cardiac MRI abnormalities — Ćorović et al.
"We found that increased CCL7 levels and decreased CD8 TEM cells, with reduced expression of inhibitory receptors and increased cytotoxic phenotype, were strongly associated with the presence of cardiac MRI abnormalities in patients after COVID-infection."
Article | Thread
The Lancet Psychiatry
Cognitive and psychiatric symptom trajectories 2–3 years after hospital admission for COVID-19: a longitudinal, prospective cohort study in the UK — Maxime Taquet et al.
"Psychiatric and cognitive symptoms appear to increase over the first 2–3 years post-hospitalisation due to both worsening of symptoms already present at 6 months and emergence of new symptoms."
Article | Thread
Brain-X
COVID-19 and cognitive impairment: From evidence to SARS-CoV-2 mechanism — Haodong Pan et al.
"Neuroinflammation may be a crossing point and target, and hypoxia-related brain pathology may be its main trigger. Therefore, the widespread changes observed in the brains of patients with COVID-19-associated CI result from the combined effects of multiple pathogenic factors, both central (e.g., neuroinflammation, BBB disruption, and brain WM injury) and peripheral."
Article | Thread
Journal of Internal Medicine
SARS-CoV-2 spike protein acts as a β-adrenergic receptor agonist: A potential mechanism for cardiac sequelae of long COVID — Xiangning Deng et al.
"we recruited patients with asymptomatic or mild COVID-19 infection, with an elapsed time of 40 ± 10 days from recovery" "patients with high plasma S1 levels exhibited elevated HR and [Normalised Low Frequency] of HRV"
Article | Thread
International Journal of Molecular Sciences
SARS-CoV-2 Rapidly Infects Peripheral Sensory and Autonomic Neurons, Contributing to Central Nervous System Neuroinvasion before Viremia — Joyce et al.
Mouse study. "The presence of infectious virus in these tissues preceding viremia shows that neuroinvasion occurs early in infection via peripheral neural pathways."
Article | Thread
Viruses
Prevalence and Symptom Profile of Long COVID among Schoolchildren in Vietnam — Vu et al.
"Among 1507 children with confirmed SARS-CoV-2 infection ≥ 5 months prior, 85 (5.6%) had long COVID. Memory loss (85.9%), poor concentration capacity (58.8%), and fatigue (57.6%) were their most common symptoms."
Article | Thread
Nature Communications
Modifiable lifestyle factors and the risk of post-COVID-19 multisystem sequelae, hospitalization, and death — Wang et al.
"This study evaluated the association of modifiable lifestyle factors (smoking, alcohol intake, BMI, physical activity, sedentary time, sleep duration, and dietary habits) with COVID-19 multisystem sequelae, death, and hospitalization in the UK Biobank cohort (n = 68,896)."
Article | Thread
Frontiers in Rehabilitation Sciences
Resonant breathing improves self-reported symptoms and wellbeing in people with Long COVID — Polizzi et al.
Retrospective study. "Resonant breathing (breathing slowly at a defined rate of breaths per minute) requires less exertion and can potentially improve autonomic function. The objective of this work was to report on the impact of a resonant breathing program on self-reported symptoms and wellbeing in people with Long COVID."
Article | Thread
Journal of Personalized Medicine
Long COVID Is Not a Functional Neurologic Disorder — Davenport et al.
Perspective article attempting to demonstrate clinical and research differences between Long Covid and FND.
Article | Thread
..........
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News
UK Inquest Warning: upsetting content
The second 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 was more evidence from clinicians which exposed the lack of specialist hospital provision for ME/CFS, and problems with attitudes of clinicians who believed wrongly that it is a mental illness, adversely impacting medical and care decisions. On Thursday Maeve's parents, Sarah Boothby and Sean O'Neill gave their courageous and devastating statements.
The coroner will deliver her findings next Friday, 9th August.
ME Research UK article | Thread
Media coverage included:
The Times Wednesday: ME patient ‘would have received better care if she had eating disorder’
The Times Thursday: ME patient wanted a loving hug but it hurt too much, inquest told
The Times Friday: Doctors didn't accept ME was a medical condition, inquest told
Telegraph Tuesday, Wednesday, Friday | BBC Saturday, Thursday | ITV Wednesday, Thursday | Guardian Thursday, Friday | Belfast Telegraph Thursday | Independent Thursday | Observer letters Sunday
Trial by Error by David Tuller
Guardian Published Response to Boothby O´Neill Inquest from Ranking Member of the CBT/GET Ideological Brigades
On an opinion piece by physician and CBT/GET proponent Alastair Miller about the inquest of Maeve Boothby O´Neill's death. "This essay reads like it was written to justify the fatal mistreatment suffered by Maeve at the hands of health care providers who unwittingly bought into the PACE and CBT/GET propaganda. It is a disgraceful display of ignorance, hypocrisy, and historical revisionism."
Article l Thread
Dr Weir's Letters on Treatment of Maeve Boothby O´Neill
A publication of two letters from physician William Weir to a consultant at the Royal Devon and Exeter Hospital and to the former CEO of the Royal Devon University Healthcare NHS Foundation Trust. These were read out during the inquest.
Article l Thread
United States Senate Long Covid Moonshot Bill
Senator Bernie Sanders introduces historic Moonshot legislation to address the long COVID crisis. The Long COVID Research Moonshot Act of 2024 provides $1 billion in mandatory funding per year for 10 years to the National Institutes of Health (NIH) to support long COVID research, the urgent pursuit of treatments, and the expansion of care for patients across the country.
Senate Press Release | Bill | Thread
Sweden The journal of the Swedish Medical Association reports on the lack of clinics for long Covid in the country. Region Stockholm is however an exception and the article mentions they also accept ME/CFS and other similar postinfectious diseases.
Article l Thread
...............
Research news
Australia Government announces Medical Research Future Fund
14 projects funded with a $15m total investment. $5m for "Optimising supportive consumer and provider journeys through the postacute sequelae of COVID-19 (PASC)" and $2m for "Understanding the impacts of postacute sequelae of COVID-19 on the Australian healthcare system and workforce, and modelling the impact of prevention strategies to inform policy". A number of biological studies also funded up to the $1m level.
Announcement | Reddit Thread | Forum Thread
..............
Research
ME/CFS research
Preprint
Efficacy of Repeat Immunoadsorption in Post-COVID ME/CFS Patients with Elevated B2-Adrenergic Receptor Autoantibodies: A Prospective Cohort Study - Stein et al.
20 post-COVID ME/CFS patients found to have elevated β2 AR-AB received five immunoadsorption sessions. Participants reported some significant improvements but "In most patients symptoms worsened again after six months."
Article | Thread
Medicina
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Impact on Quality of Life (QoL) of Persons with ME/CFS - Muirhead et al.
876 participants from 26 countries who reported a health care professional diagnosis of ME/CFS, completed the EuroQoL questionnaire (EQ-5D-3L). "Contrary to popular misconception, anxiety and depression are the least often affected areas in persons with ME/CFS who are most impacted by their inability to perform usual activities."
Article | Thread
Archives of Disease in Childhood
A quest to manage CYP with ME/CFS and long covid under one MDT service – evaluation of a regional centre for CYP ME/CFS and long covid services - Abu & Begum
The authors argue that it would be valuable to merge both the services and manage ME/CFS and Long Covid patients under the same multidisciplinary team.
Article | Thread
Preprints.org
Overrepresentation of TTMV9 in a Subgroup of Patients with ME/CFS - Gimenez Orenga et al.
The Spanish research team of Elisa Oltra found an overexpression of the Torque Teno Mini Virus 9 (TTMV9) in a subgroup of ME/CFS patients.
Article | Thread
Microbiome
Systemic antibody responses against gut microbiota flagellins implicate shared and divergent immune reactivity in Crohn’s disease and chronic fatigue syndrome - Bourgonje et al.
The authors argue that both Crohn's disease and ME/CFS patients exhibit elevated antibody responses against distinct regions of flagellins compared to healthy individuals.
Article | Thread
Long Covid research
New England Journal of Medicine
Long Covid Defined — E. Wesley Ely et al.
Commentary describing the development of the recently published NASEM Long Covid definition. "the committee adopted the patient-coined term “long Covid” as a simple, well understood, and readily communicated label for this condition and urged its uniform use."
Article | Thread
The Lancet
Long COVID: a clinical update — Trisha Greenhalgh et al.
"although there is extensive evidence to support multiple interacting biological mechanisms in the pathogenesis of long COVID, most current clinical management is not derived from these biological mechanisms. We believe there is potential for targeted research to close this gap and combat what has been described as the “mass disabling event” of long COVID."
Article | Thread
Journal of Clinical Medicine
Exercise Intolerance Is Associated with Cardiovascular Dysfunction in Long COVID-19 Syndrome — Vontetsianos et al.
"In this study, we have demonstrated that cardiovascular dysfunction at rest was associated with exercise intolerance in long COVID-19 patients. Specifically, impaired left and right ventricular performance was associated with reduced peak VO 2 during incremental exercise in patients with long COVID-19 syndrome when compared with age-matched healthy controls."
Article | Thread
Journal of Personalized Medicine
Deciphering Alveolo-Capillary Gas Transfer Disturbances in Patients Recovering from COVID-19 Lung Disease — Hua-Huy et al.
"Our study confirmed that lung gas transfer impairment is present in all COVID-19 patients, even in the mildest form of the disease when the alveolar volume is still normal. The pulmonary capillary volume (VC) is the most affected parameter, with severe impairment starting in patients with moderately (but not severely) impaired lung volumes. An alteration of VC, as an early and sensitive marker of altered lung gas exchange, suggests a pivotal role of vascular abnormality in COVID-19 and post-COVID-19 lung disease."
Article | Thread
Viruses
Sex Modifies the Effect of COVID-19 on Arterial Elasticity — Durieux et al.
"To our knowledge, this is the first study to establish that sex is an effect modifier of SARS‑CoV‑2 infection on arterial elasticity among COVID‑survivors with PASC."
Article | Thread
Cardiovascular Research
COVID-19 related myocardial injury is associated with immune dysregulation in symptomatic patients with cardiac MRI abnormalities — Ćorović et al.
"We found that increased CCL7 levels and decreased CD8 TEM cells, with reduced expression of inhibitory receptors and increased cytotoxic phenotype, were strongly associated with the presence of cardiac MRI abnormalities in patients after COVID-infection."
Article | Thread
The Lancet Psychiatry
Cognitive and psychiatric symptom trajectories 2–3 years after hospital admission for COVID-19: a longitudinal, prospective cohort study in the UK — Maxime Taquet et al.
"Psychiatric and cognitive symptoms appear to increase over the first 2–3 years post-hospitalisation due to both worsening of symptoms already present at 6 months and emergence of new symptoms."
Article | Thread
Brain-X
COVID-19 and cognitive impairment: From evidence to SARS-CoV-2 mechanism — Haodong Pan et al.
"Neuroinflammation may be a crossing point and target, and hypoxia-related brain pathology may be its main trigger. Therefore, the widespread changes observed in the brains of patients with COVID-19-associated CI result from the combined effects of multiple pathogenic factors, both central (e.g., neuroinflammation, BBB disruption, and brain WM injury) and peripheral."
Article | Thread
Journal of Internal Medicine
SARS-CoV-2 spike protein acts as a β-adrenergic receptor agonist: A potential mechanism for cardiac sequelae of long COVID — Xiangning Deng et al.
"we recruited patients with asymptomatic or mild COVID-19 infection, with an elapsed time of 40 ± 10 days from recovery" "patients with high plasma S1 levels exhibited elevated HR and [Normalised Low Frequency] of HRV"
Article | Thread
International Journal of Molecular Sciences
SARS-CoV-2 Rapidly Infects Peripheral Sensory and Autonomic Neurons, Contributing to Central Nervous System Neuroinvasion before Viremia — Joyce et al.
Mouse study. "The presence of infectious virus in these tissues preceding viremia shows that neuroinvasion occurs early in infection via peripheral neural pathways."
Article | Thread
Viruses
Prevalence and Symptom Profile of Long COVID among Schoolchildren in Vietnam — Vu et al.
"Among 1507 children with confirmed SARS-CoV-2 infection ≥ 5 months prior, 85 (5.6%) had long COVID. Memory loss (85.9%), poor concentration capacity (58.8%), and fatigue (57.6%) were their most common symptoms."
Article | Thread
Nature Communications
Modifiable lifestyle factors and the risk of post-COVID-19 multisystem sequelae, hospitalization, and death — Wang et al.
"This study evaluated the association of modifiable lifestyle factors (smoking, alcohol intake, BMI, physical activity, sedentary time, sleep duration, and dietary habits) with COVID-19 multisystem sequelae, death, and hospitalization in the UK Biobank cohort (n = 68,896)."
Article | Thread
Frontiers in Rehabilitation Sciences
Resonant breathing improves self-reported symptoms and wellbeing in people with Long COVID — Polizzi et al.
Retrospective study. "Resonant breathing (breathing slowly at a defined rate of breaths per minute) requires less exertion and can potentially improve autonomic function. The objective of this work was to report on the impact of a resonant breathing program on self-reported symptoms and wellbeing in people with Long COVID."
Article | Thread
Journal of Personalized Medicine
Long COVID Is Not a Functional Neurologic Disorder — Davenport et al.
Perspective article attempting to demonstrate clinical and research differences between Long Covid and FND.
Article | Thread
..........
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 5th August 2024
UK Inquest
As we reported in the last two weeks' news, the inquest has been held into the death of Maeve Boothby O'Neill and covered widely in UK media. Further articles this week before the coroner reported her findings on Friday included:
Trial by Error by David Tuller
A publishing of the heartbreaking and loving statements from the parents of Maeve Boothby O´Neill given at the inquest of her death.
Sarah Boothby's Statement to the Inquest
Article l Thread
Sean O´Neill's Inquest Statement
Article l Thread
A life Hidden Why Maeve's Death Must Bring Change
Thoughtful reflections by Naomi Whittingham on the inquest of Maeve Boothby O'Neill's death.
"It is small consolation, but I hope there will be some comfort for them in knowing that Maeve has touched the world. Her strength and courage have moved so many of us, and she will never be forgotten. And maybe, thanks to all her parents have done, she will prove to be the catalyst for meaningful change. She and we deserve nothing less."
Article l Thread
The Times ‘I lived, Maeve died’: ME patient who got help writes to coroner
US patient Whitney Dafoe has written to the coroner describing ten years of parenteral and enteral nutrition at home.
Article | Archived article | Thread
Other media
BBC Radio Friday radio 1pm news (5 minutes) | The Week Thursday (not a recommendation)
_________
The coroner's findings The coroner, Deborah Archer, read out her findings on Friday afternoon. The conclusions have not been published in full, but media reports include key points. The cause of death was determined to be natural causes. The coroner said she died of malnutrition caused by her severe ME.
A hearing will be held next month into whether the coroner will issue a prevention of future deaths report.
Action for ME provides a brief report
" Repeatedly through her reading of findings, the coroner outlined her hope that the inquest will lead to improved care and support for people with ME in the future."
Article | Thread
The Times ME sufferer 'fell through cracks of d'ismissive NHS', says minister
"The assistant coroner said she found none of the clinicians who gave evidence during the two-week inquest “didn’t believe ME was a true illness” and found they were “respectful and compassionate”.
However Maeve's father, Sean O'Neill is quoted:
“Several professionals did not believe her illness was ‘real’. At the end of her life palliative care was delayed because of that disbelief."
Government public health minister Andrew Gwynne is quoted:
“Maeve and her family were forced to battle the disease alongside the healthcare system which repeatedly misunderstood and dismissed her.”
Gwynne, who suffers from long Covid, a post-viral illness likened to ME, said the government would publish its “final delivery plan” for ME this winter which would “focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease”.
Article | Archived article | Thread
There are also two articles in Saturday's print edition of the Times.
Other media coverage included:
The Guardian Devon woman died from malnutrition due to severe ME, coroner concludes
The Guardian What is ME and why is the NHS being criticised
The Guardian ‘I’ve been tired since I was 13’: ME patients hope harrowing inquest will change perceptions - Maeve Boothby O’Neill’s parents tell of desperate efforts to find help and their desire to improve treatment for others
BBC spotlight (7 minutes) | Channel 4 (10 minutes) | The Standard | ITV News | The Mirror
............
Other news, advocacy and articles
Severe ME Day 2024 August 8th is the annual awareness day for severe ME. Some of the different ways this day was marked internationally have been shared in the forum's thread dedicated to the day.
The World ME Alliance campaigned for Safer Hospital Care for severe ME.
Safer Hospital Care Campaign l Thread
Aotearoa New Zealand Critical Reforms Needed For ME/CFS Patients In Aotearoa
A coalition of NZ patient advocacy groups calls on Health and Disability Commissioner for action
Press Release | Thread
Science for ME and Cochrane Exercise therapy for CFS review.
Nearly a year ago the Science for ME committee first wrote to Cochrane to request that the flawed and harmful Larun et al 2019 review be withdrawn. There is still no sign of progress on the new review, and no substantive response to our requests and complaints. The S4ME committee has again written to Cochrane with specific questions on progress, and deadlines by which we expect action including withdrawal of the 2019 review by 2nd October 2024, five years after publication.
Letter | Petition | Thread
The Times My husband is bedbound with ME at 37. I grieve for the life we had
About Karen Hargrave whose husband has very severe ME/CFS following Covid infection. She is co-leader of #ThereForME, campaigning for better NHS care and research funding.
Article | Thread
The Herald Chronic fatigue, 'mass hysteria', and Dr Melvin Ramsay
Health correspondent Helen McArdle writes about the history of the first diagnostic criteria for ME published by Dr Ramsay in 1986, and that the field then got derailed. "If he were alive today, he would no doubt be saddened by the dispiriting lack of progress."
Article l Thread
................
Resources for clinicians
Learna Study PRN "For Severe ME Awareness Day, we're providing all healthcare professionals with free educational content via our 'Question of the Day' Campaign to challenge and improve clinical knowledge, understanding and patient management of ME/CFS."
Course | Thread
Medscape CPD course: A Fresh Look at ME/CFS: Diagnosis and Management of a Multisystem Illness, Natelson et al.
"The goal of this activity is to increase awareness of the symptoms, diagnosis, and management of ME/CFS."
Course | Thread
.................
Research news
PolyBio $1M PolyBio donation will expand UCSF LIINC study to ME/CFS
PolyBio Research Foundation donates $1M to the University of California San Francisco for research into ME. "Advanced technologies will be used to study critically important – yet understudied – biological factors in ME/CFS patients whose illness began before 2019. These include enterovirus tissue persistence and T cell brain & spinal cord immune activation."
Article l Thread
..........
Research
ME/CFS research
MedArchiv
The cardiac output – cerebral blood flow relation is abnormal in most ME/CFS patients with a normal heart rate and blood pressure response during a tilt test - van Campen et al.
Cardiac output for the major part predicted reduced cerebral blood flow in ME/CFS patients, with a limited role for the PetCO2 reduction and the tilt duration.
Article | Thread
Journal of Cerebral Blood Flow & Metabolism
Absence of BOLD adaptation in chronic fatigue syndrome revealed by task functional MRI - Schönberg et al.
In the second block of a cognitive task, ME/CFS participants exhibited increased activation in the right postcentral gyrus, contrasting with decreased activation in multiple regions in healthy controls. Brain activation was measured using blood oxygenation level-dependent (BOLD) signals.
Article | Thread
MedArchiv
Opposite white matter abnormalities in post-infectious vs. gradual onset chronic fatigue syndrome revealed by diffusion MRI - Yu et al.
Post-infectious ME/CFS patients showed significantly higher axial diffusivities (ADs) while gradual onset ME/CFS patients exhibited significantly decreased ADs in the corpus callosum.
Article | Thread
Long Covid research
Journal of Clinical Medicine
Decreased Cerebral Creatine and N-Acetyl Aspartate Concentrations after Severe COVID-19 Infection: A Magnetic Resonance Spectroscopy Study — Ostojic et al.
"findings suggest that the severity of COVID-19 during the acute phase is associated with significant changes in brain metabolism, marked by an increase in Cho/Cr ratios and a reduction in Cr and NAA levels, reflecting substantial metabolic alterations post-recovery."
Article | Thread
Nature
Molecular mimicry in multisystem inflammatory syndrome in children — Bodansky et al.
"We propose that MIS-C may be the result of multiple uncommon events converging. The initial insult is probably the formation of a combined B cell and T cell response that preferentially targets a particular motif within the MADS region of the SARS-CoV-2 nucleocapsid protein. In a subset of individuals, these B cell and T cell responses cross-react to the self-protein SNX8."
Article | Thread
Clinical Rehabilitation
Oculomotor Behaviour in Individuals with Long COVID-19 — L González-Vides et al.
"Data showed a lower performance in oculomotor behaviour in people with long COVID-19, compared to healthy individuals."
Article | Thread
Molecular diagnosis & therapy
Blood Biomarkers of Long COVID: A Systematic Review — Thomas C et al.
"no single biomarker was sufficiently associated with LC prevalence and instead a profile of biomarkers across various physiological systems may be more clinically useful."
Article | Thread
PLOS Pathogens
SARS-CoV-2 spike-induced syncytia are senescent and contribute to exacerbated heart failure — Huilong Li et al.
"Here, we directly linked SARS-2-S-triggered syncytium formation with the ensuing induction of cellular senescence and its pathophysiological contribution to heart failure progression. We found that both SARS-2-S expression and SARS-2-S protein internalization were sufficient to induce senescence in non-senescent ACE2-expressing cells."
Article | Thread
Nature Medicine
Long COVID science, research and policy — Al-Aly et al.
"In this interdisciplinary review, we provide a synthesis of the state of scientific evidence on long COVID, assess the impacts of long COVID on human health, health systems, the economy and global health metrics, and provide a forward-looking research and policy roadmap."
Article | Thread
..........
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
UK Inquest
As we reported in the last two weeks' news, the inquest has been held into the death of Maeve Boothby O'Neill and covered widely in UK media. Further articles this week before the coroner reported her findings on Friday included:
Trial by Error by David Tuller
A publishing of the heartbreaking and loving statements from the parents of Maeve Boothby O´Neill given at the inquest of her death.
Sarah Boothby's Statement to the Inquest
Article l Thread
Sean O´Neill's Inquest Statement
Article l Thread
A life Hidden Why Maeve's Death Must Bring Change
Thoughtful reflections by Naomi Whittingham on the inquest of Maeve Boothby O'Neill's death.
"It is small consolation, but I hope there will be some comfort for them in knowing that Maeve has touched the world. Her strength and courage have moved so many of us, and she will never be forgotten. And maybe, thanks to all her parents have done, she will prove to be the catalyst for meaningful change. She and we deserve nothing less."
Article l Thread
The Times ‘I lived, Maeve died’: ME patient who got help writes to coroner
US patient Whitney Dafoe has written to the coroner describing ten years of parenteral and enteral nutrition at home.
Article | Archived article | Thread
Other media
BBC Radio Friday radio 1pm news (5 minutes) | The Week Thursday (not a recommendation)
_________
The coroner's findings The coroner, Deborah Archer, read out her findings on Friday afternoon. The conclusions have not been published in full, but media reports include key points. The cause of death was determined to be natural causes. The coroner said she died of malnutrition caused by her severe ME.
A hearing will be held next month into whether the coroner will issue a prevention of future deaths report.
Action for ME provides a brief report
" Repeatedly through her reading of findings, the coroner outlined her hope that the inquest will lead to improved care and support for people with ME in the future."
Article | Thread
The Times ME sufferer 'fell through cracks of d'ismissive NHS', says minister
"The assistant coroner said she found none of the clinicians who gave evidence during the two-week inquest “didn’t believe ME was a true illness” and found they were “respectful and compassionate”.
However Maeve's father, Sean O'Neill is quoted:
“Several professionals did not believe her illness was ‘real’. At the end of her life palliative care was delayed because of that disbelief."
Government public health minister Andrew Gwynne is quoted:
“Maeve and her family were forced to battle the disease alongside the healthcare system which repeatedly misunderstood and dismissed her.”
Gwynne, who suffers from long Covid, a post-viral illness likened to ME, said the government would publish its “final delivery plan” for ME this winter which would “focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease”.
Article | Archived article | Thread
There are also two articles in Saturday's print edition of the Times.
Other media coverage included:
The Guardian Devon woman died from malnutrition due to severe ME, coroner concludes
The Guardian What is ME and why is the NHS being criticised
The Guardian ‘I’ve been tired since I was 13’: ME patients hope harrowing inquest will change perceptions - Maeve Boothby O’Neill’s parents tell of desperate efforts to find help and their desire to improve treatment for others
BBC spotlight (7 minutes) | Channel 4 (10 minutes) | The Standard | ITV News | The Mirror
............
Other news, advocacy and articles
Severe ME Day 2024 August 8th is the annual awareness day for severe ME. Some of the different ways this day was marked internationally have been shared in the forum's thread dedicated to the day.
The World ME Alliance campaigned for Safer Hospital Care for severe ME.
Safer Hospital Care Campaign l Thread
Aotearoa New Zealand Critical Reforms Needed For ME/CFS Patients In Aotearoa
A coalition of NZ patient advocacy groups calls on Health and Disability Commissioner for action
Press Release | Thread
Science for ME and Cochrane Exercise therapy for CFS review.
Nearly a year ago the Science for ME committee first wrote to Cochrane to request that the flawed and harmful Larun et al 2019 review be withdrawn. There is still no sign of progress on the new review, and no substantive response to our requests and complaints. The S4ME committee has again written to Cochrane with specific questions on progress, and deadlines by which we expect action including withdrawal of the 2019 review by 2nd October 2024, five years after publication.
Letter | Petition | Thread
The Times My husband is bedbound with ME at 37. I grieve for the life we had
About Karen Hargrave whose husband has very severe ME/CFS following Covid infection. She is co-leader of #ThereForME, campaigning for better NHS care and research funding.
Article | Thread
The Herald Chronic fatigue, 'mass hysteria', and Dr Melvin Ramsay
Health correspondent Helen McArdle writes about the history of the first diagnostic criteria for ME published by Dr Ramsay in 1986, and that the field then got derailed. "If he were alive today, he would no doubt be saddened by the dispiriting lack of progress."
Article l Thread
................
Resources for clinicians
Learna Study PRN "For Severe ME Awareness Day, we're providing all healthcare professionals with free educational content via our 'Question of the Day' Campaign to challenge and improve clinical knowledge, understanding and patient management of ME/CFS."
Course | Thread
Medscape CPD course: A Fresh Look at ME/CFS: Diagnosis and Management of a Multisystem Illness, Natelson et al.
"The goal of this activity is to increase awareness of the symptoms, diagnosis, and management of ME/CFS."
Course | Thread
.................
Research news
PolyBio $1M PolyBio donation will expand UCSF LIINC study to ME/CFS
PolyBio Research Foundation donates $1M to the University of California San Francisco for research into ME. "Advanced technologies will be used to study critically important – yet understudied – biological factors in ME/CFS patients whose illness began before 2019. These include enterovirus tissue persistence and T cell brain & spinal cord immune activation."
Article l Thread
..........
Research
ME/CFS research
MedArchiv
The cardiac output – cerebral blood flow relation is abnormal in most ME/CFS patients with a normal heart rate and blood pressure response during a tilt test - van Campen et al.
Cardiac output for the major part predicted reduced cerebral blood flow in ME/CFS patients, with a limited role for the PetCO2 reduction and the tilt duration.
Article | Thread
Journal of Cerebral Blood Flow & Metabolism
Absence of BOLD adaptation in chronic fatigue syndrome revealed by task functional MRI - Schönberg et al.
In the second block of a cognitive task, ME/CFS participants exhibited increased activation in the right postcentral gyrus, contrasting with decreased activation in multiple regions in healthy controls. Brain activation was measured using blood oxygenation level-dependent (BOLD) signals.
Article | Thread
MedArchiv
Opposite white matter abnormalities in post-infectious vs. gradual onset chronic fatigue syndrome revealed by diffusion MRI - Yu et al.
Post-infectious ME/CFS patients showed significantly higher axial diffusivities (ADs) while gradual onset ME/CFS patients exhibited significantly decreased ADs in the corpus callosum.
Article | Thread
Long Covid research
Journal of Clinical Medicine
Decreased Cerebral Creatine and N-Acetyl Aspartate Concentrations after Severe COVID-19 Infection: A Magnetic Resonance Spectroscopy Study — Ostojic et al.
"findings suggest that the severity of COVID-19 during the acute phase is associated with significant changes in brain metabolism, marked by an increase in Cho/Cr ratios and a reduction in Cr and NAA levels, reflecting substantial metabolic alterations post-recovery."
Article | Thread
Nature
Molecular mimicry in multisystem inflammatory syndrome in children — Bodansky et al.
"We propose that MIS-C may be the result of multiple uncommon events converging. The initial insult is probably the formation of a combined B cell and T cell response that preferentially targets a particular motif within the MADS region of the SARS-CoV-2 nucleocapsid protein. In a subset of individuals, these B cell and T cell responses cross-react to the self-protein SNX8."
Article | Thread
Clinical Rehabilitation
Oculomotor Behaviour in Individuals with Long COVID-19 — L González-Vides et al.
"Data showed a lower performance in oculomotor behaviour in people with long COVID-19, compared to healthy individuals."
Article | Thread
Molecular diagnosis & therapy
Blood Biomarkers of Long COVID: A Systematic Review — Thomas C et al.
"no single biomarker was sufficiently associated with LC prevalence and instead a profile of biomarkers across various physiological systems may be more clinically useful."
Article | Thread
PLOS Pathogens
SARS-CoV-2 spike-induced syncytia are senescent and contribute to exacerbated heart failure — Huilong Li et al.
"Here, we directly linked SARS-2-S-triggered syncytium formation with the ensuing induction of cellular senescence and its pathophysiological contribution to heart failure progression. We found that both SARS-2-S expression and SARS-2-S protein internalization were sufficient to induce senescence in non-senescent ACE2-expressing cells."
Article | Thread
Nature Medicine
Long COVID science, research and policy — Al-Aly et al.
"In this interdisciplinary review, we provide a synthesis of the state of scientific evidence on long COVID, assess the impacts of long COVID on human health, health systems, the economy and global health metrics, and provide a forward-looking research and policy roadmap."
Article | Thread
..........
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 12th August 2024
Part 1 of 2
News, advocacy and articles
Aotearoa New Zealand ANZMES Guideline
Severe ME/CFS and long Covid in secondary care: guide to management during patient hospital stays
Press Release | Thread
Sweden The National Board of Health and Welfare has published national guidelines for post covid and other similar conditions and syndromes (including ME/CFS). Both the process and the results are criticised by patients.
Guidelines l Thread
ME/CFS Skeptic
What does deconditioning look like?
This detailed blog post examines what deconditioning looks like and how it differs from ME/CFS.
Article | Thread
Bernie Sanders: America Must Confront Its Long COVID Crisis
Op-Ed in the Daily Beast by Senator Bernie Sanders on the large impacts of Long COVID and why it needs to be treated as a public health emergency. "That is why I recently introduced the Long COVID Research Moonshot Act of 2024. This legislation provides the world’s largest investment into Long COVID and is critical to support research, expand care, and provide relief to the millions of Americans suffering from it."
Op-Ed l Thread
Iceland An ME clinic has opened in Iceland named The Akureyri clinic. The name is a reference to the outbreak of the "Akureyri disease" 75 years ago which affected 1 400 people and later was recognised as ME/CFS.
Article in Morgunbladid l Thread
UK The Times Are long Covid and ME linked? An Olympic rower is trying to find out
About Oonagh Cousins whose Long Covid prevented Olympic participation, and who is now researching Long Covid.
“This is an illness that is demolishing people’s lives — and then people are going to the doctor and being told it’s in their heads or that the disease isn’t real.” "Cousins has backed a campaign called #ThereForME which is demanding an overhaul in NHS care for patients with long Covid and ME."
Article | Thread
Norway Professor Silje Reme, one of the members of the Oslo Chronic Fatigue Consortium, organised an ME seminar in 2022. She claimed in the newspaper Morgenbladet that the police had to be on standby out of fear that ME patients would try to get them. But this never was a police matter, and the newspaper has now apologised and removed the claim from the article.
Thread
...............
Inquest
ME Research UK Maeve Boothby-O’Neill’s Inquest – Coroner’s conclusions
A helpful article summarising the key findings by the coroner, with reactions by the hospital, Maeve's father Sean O'Neill and a government minister, and a list of media articles.
While criticising some aspects of hospital and care services, the coroner "rejected the request of Ms Boothby-O’Neill’s parents to deem the case a violation of Article 2 of the European Convention on Human Rights, which protects the right to life. She also ruled that Ms Boothby-O’Neill’s death could not be attributed to “neglect” on the part of health care providers."
Article | Thread
ITV Good Morning Britain
An excellent and moving 15 minute interview with Sarah Boothby, mother of Maeve Boothby O'Neill, and Dr Charles Shepherd, medical advisor to the ME Association.
Video | Thread
Trial by Error by David Tuller Valerie Eliot Smith on the Inquest Findings
Tuller has asked barrister Valerie Eliot Smith for a legal perspective on the coroner Archer's findings of the inquest into the death of Maeve Boothby O´Neill.
Article l Thread
The Canary Phantom healthcare for 'real' diseases: when will ME/CFS and long Covid get parity? by Claire Every.
"We see Maeve Boothby O’Neill, Merryn Crofts, Alice Barrett, Carla Naoum, Karen Gordon, Millie McAnish, and Sophia Mizra all refused life-saving medical treatment because doctors convinced themselves that mental and emotional factors were involved in their ME/CFS, and their physical symptoms and personal accounts were disregarded."
Article l Thread
..........
In Memory
Francis Martin
We share the sad news that Francis Martin, a founding member of the European ME Coalition, passed away this week in an accident. "His humor, enthusiasm and compassion will be greatly missed. His tireless advocacy for ME/CFS will not be forgotten." Rest in peace.
EMEC tweets | Thread (Members only)
................
Research news
Invest in ME Research 2024 Conference videos are now available on YouTube. They include talks by Maureen Hanson, Rob Wüst, Ron Davis, David Systrom and Brian Walitt and seven others.
Videos | Thread
MEA and MERUK Research Explaining Electrophysiological Properties of Cells in Health and Disease. Dr Krista Clarke describes her PhD research investigating how the electrophysiological properties of cells can be used to distinguish ME/CFS from healthy white blood cells. Her post doctoral research developing this is funded by the MEA and MERUK.
Article | Thread
...........
Coming events
USA: NIH workshop
RECOVER Treating Long COVID – Navigating the Pathway Forward
National Institutes of Health Campus
Monday, September 23, 2024 - Wednesday, September 25, 2024
Registration now open for in person or virtual attendance. Registration deadline August 30th.
Details | Registration | Thread
...............
Go to the next post for the research section
Part 1 of 2
News, advocacy and articles
Aotearoa New Zealand ANZMES Guideline
Severe ME/CFS and long Covid in secondary care: guide to management during patient hospital stays
Press Release | Thread
Sweden The National Board of Health and Welfare has published national guidelines for post covid and other similar conditions and syndromes (including ME/CFS). Both the process and the results are criticised by patients.
Guidelines l Thread
ME/CFS Skeptic
What does deconditioning look like?
This detailed blog post examines what deconditioning looks like and how it differs from ME/CFS.
Article | Thread
Bernie Sanders: America Must Confront Its Long COVID Crisis
Op-Ed in the Daily Beast by Senator Bernie Sanders on the large impacts of Long COVID and why it needs to be treated as a public health emergency. "That is why I recently introduced the Long COVID Research Moonshot Act of 2024. This legislation provides the world’s largest investment into Long COVID and is critical to support research, expand care, and provide relief to the millions of Americans suffering from it."
Op-Ed l Thread
Iceland An ME clinic has opened in Iceland named The Akureyri clinic. The name is a reference to the outbreak of the "Akureyri disease" 75 years ago which affected 1 400 people and later was recognised as ME/CFS.
Article in Morgunbladid l Thread
UK The Times Are long Covid and ME linked? An Olympic rower is trying to find out
About Oonagh Cousins whose Long Covid prevented Olympic participation, and who is now researching Long Covid.
“This is an illness that is demolishing people’s lives — and then people are going to the doctor and being told it’s in their heads or that the disease isn’t real.” "Cousins has backed a campaign called #ThereForME which is demanding an overhaul in NHS care for patients with long Covid and ME."
Article | Thread
Norway Professor Silje Reme, one of the members of the Oslo Chronic Fatigue Consortium, organised an ME seminar in 2022. She claimed in the newspaper Morgenbladet that the police had to be on standby out of fear that ME patients would try to get them. But this never was a police matter, and the newspaper has now apologised and removed the claim from the article.
Thread
...............
Inquest
ME Research UK Maeve Boothby-O’Neill’s Inquest – Coroner’s conclusions
A helpful article summarising the key findings by the coroner, with reactions by the hospital, Maeve's father Sean O'Neill and a government minister, and a list of media articles.
While criticising some aspects of hospital and care services, the coroner "rejected the request of Ms Boothby-O’Neill’s parents to deem the case a violation of Article 2 of the European Convention on Human Rights, which protects the right to life. She also ruled that Ms Boothby-O’Neill’s death could not be attributed to “neglect” on the part of health care providers."
Article | Thread
ITV Good Morning Britain
An excellent and moving 15 minute interview with Sarah Boothby, mother of Maeve Boothby O'Neill, and Dr Charles Shepherd, medical advisor to the ME Association.
Video | Thread
Trial by Error by David Tuller Valerie Eliot Smith on the Inquest Findings
Tuller has asked barrister Valerie Eliot Smith for a legal perspective on the coroner Archer's findings of the inquest into the death of Maeve Boothby O´Neill.
Article l Thread
The Canary Phantom healthcare for 'real' diseases: when will ME/CFS and long Covid get parity? by Claire Every.
"We see Maeve Boothby O’Neill, Merryn Crofts, Alice Barrett, Carla Naoum, Karen Gordon, Millie McAnish, and Sophia Mizra all refused life-saving medical treatment because doctors convinced themselves that mental and emotional factors were involved in their ME/CFS, and their physical symptoms and personal accounts were disregarded."
Article l Thread
..........
In Memory
Francis Martin
We share the sad news that Francis Martin, a founding member of the European ME Coalition, passed away this week in an accident. "His humor, enthusiasm and compassion will be greatly missed. His tireless advocacy for ME/CFS will not be forgotten." Rest in peace.
EMEC tweets | Thread (Members only)
................
Research news
Invest in ME Research 2024 Conference videos are now available on YouTube. They include talks by Maureen Hanson, Rob Wüst, Ron Davis, David Systrom and Brian Walitt and seven others.
Videos | Thread
MEA and MERUK Research Explaining Electrophysiological Properties of Cells in Health and Disease. Dr Krista Clarke describes her PhD research investigating how the electrophysiological properties of cells can be used to distinguish ME/CFS from healthy white blood cells. Her post doctoral research developing this is funded by the MEA and MERUK.
Article | Thread
...........
Coming events
USA: NIH workshop
RECOVER Treating Long COVID – Navigating the Pathway Forward
National Institutes of Health Campus
Monday, September 23, 2024 - Wednesday, September 25, 2024
Registration now open for in person or virtual attendance. Registration deadline August 30th.
Details | Registration | Thread
...............
Go to the next post for the research section
Week beginning 12th August 2024
Part 2 of 2
Research
ME/CFS research
Bioarchiv
Fast Targeted Metabolomics for Analyzing Metabolic Diversity of Bacterial Indole Derivatives in ME/CFS Gut Microbiome - Tian et al.
"This study investigates whether the metabolic diversity—the concentration distribution—of bacterial indole pathway metabolites can differentiate bacterial strains and classify ME/CFS samples."
Article | Thread
University of Applied Sciences Technikum Wien
Establishment of a primary dorsal root ganglion cell culture to screen for autoantibodies for patients with myalgic encephalomyelitis/chronic fatigue syndrome or Post COVID - Wachutka.
This thesis identified nine patients that showed immunoreactivity in both tissue and cell based essays indicating a role of autoantibodies targeting neuronal antigens of dorsal root ganglia cells.
Thesis | Thread
Long Covid research
Annals of Internal Medicine
Differentiation of Prior SARS-CoV-2 Infection and Postacute Sequelae by Standard Clinical Laboratory Measurements in the RECOVER Cohort — Kristine M. Erlandson et al.
"In summary, our findings suggest that even highly symptomatic PASC may have no clinically observable objective findings on routine laboratory testing. Understanding the basic biological underpinnings of persistent symptoms after SARS-CoV-2 infection will likely require a rigorous focus on investigations beyond routine clinical laboratory studies (for example, transcriptomics, proteomics, metabolomics) to identify novel biomarkers."
Article | Thread
Preprints with the Lancet
Vascular Inflammation in Neuropsychiatric Long Covid — McAlpine et al.
"Alterations in biomarkers of vascular inflammation strongly associate with the presence of N-LC. Biomarkers of endothelial adhesion and vascular calcification are only elevated in N-LC compared to both groups, suggesting a pathophysiology distinct from the resolving effects of [Acute Covid]."
Article | Thread
Experimental Neurology
Insights into COVID-19 pathophysiology from a longitudinal multisystem report during acute infection — Brihmat et al.
"When analyzing the data obtained from the visit that turned out to be performed while the participant was suffering from SARS-CoV-2 infection, relative increases in bilateral sensorimotor activation during handgrip tasks, overall reduced resting-state intra- and interhemispheric functional connectivity between cortical prefrontal, frontal, and parietal regions, increased corticospinal excitability, reduced intracortical inhibition, decreased maximal handgrip and pinch strength and increased autonomic cardiovascular functioning were observed."
Article | Thread
Journal of Translational Medicine
Multi-omics landscapes reveal heterogeneity in long COVID patients characterized with enhanced neutrophil activity — Lin et al.
"We discovered a subgroup of long COVID population characterized by neutrophil activation, which might associate with the development of psychiatric symptoms and indicate a higher inflammatory state."
Article | Thread
Frontiers in Immunology
The longitudinal characterization of immune responses in COVID-19 patients reveals novel prognostic signatures for disease severity, patients’ survival and long COVID — Noviello et al.
"A decision tree including the main clinical, laboratory, and biological variables at admission identified low NK-cell precursors and CD14+CD91+ monocytes, and high CD8+ Effector Memory T cell frequencies as the most robust immunological correlates of COVID-19 severity and reduced survival. Moreover, low regulatory B-cell frequency at one month was associated with the susceptibility to develop long COVID at six months, likely due to their immunomodulatory ability."
Article | Thread
American Journal of Medicine Open
Characterization of change in cognition before and after COVID-19 infection in essential workers at midlife — Sekendiz et al.
"Longitudinal models indicated a significant decline in cognitive throughput (β=-0.168, P=.001) following COVID-19, after adjustment for pre-COVID-19 functioning, demographics, and medical factors. Observed changes in throughput were equivalent to 10.6 years of normal aging. COVID-19 was associated with observed cognitive decline and was worse among patients with PASC or severe COVID-19."
Article | Thread
International Journal of Molecular Sciences
Revealing the Hidden Impacts: Insights into Biological Aging and Long-Term Effects in Pauci- and Asymptomatic COVID-19 Healthcare Workers — Campisi et al.
"We investigated early molecular markers—DNA methylation age (DNAmAge) and telomere length (TL)—in blood leukocytes, nasal cells (NCs), and induced sputum (IS) one year post-infection in pauci- and asymptomatic healthcare workers (HCWs) infected during the first pandemic wave" "Notably, HCWs exhibited accelerated biological aging in IS cells compared to both blood leukocytes (p ≤ 0.05) and NCs (p < 0.001) and were biologically older than COPD patients (p < 0.05)."
Article | Thread
Clinical Pediatrics
Orthostatic Intolerance in Children With Long COVID Utilizing a 10-Minute Passive Standing Test — Amanda K. Morrow et al.
"Our findings suggest that OI is common in pediatric long COVID, necessitating appropriate clinical screening and treatment."
Article | Thread
Life Sciences
Designing and optimizing clinical trials for long COVID — Vogel et al.
"patient-led studies and studies with patient scientists and high patient engagement are most likely to meet these recommendations, and support the design of effective and comprehensive research. With collaborative thoughtful study design and a focus on clinically translational, high-impact research, promising treatments for Long COVID will hopefully emerge."
Article | Thread
The Lancet Digital Health
Physiological presentation and risk factors of long COVID in the UK using smartphones and wearable devices: a longitudinal, citizen science, case–control study — Callum Stewart et al.
"We compared two methods of inferring the presence of long COVID, one of which was based on persistent changes in resting heart rate and the other on persistent self-reported symptoms of COVID-19."
Article | Thread
PLOS ONE
The association between prolonged SARS-CoV-2 symptoms and work outcomes — Arjun K. Venkatesh et al.
"At three months, participants with ≥5 symptoms had a higher adjusted odds ratio of missing ≥10 workdays (2.96, 95% CI 1.81–4.83) and not returning to work (2.44, 95% CI 1.58–3.76) compared to those with no symptoms."
Article | Thread
PLOS ONE
Comparative analysis of financial toxicity between SARS-CoV-2 infection and common comorbidities — Han Su et al.
"American adults with Long COVID […] exhibited a higher prevalence of financial toxicity compared to individuals with common comorbidities." "These findings emphasize the importance of evaluating strategies to reduce economic burden and increase awareness of the effect of Long COVID-related financial toxicity on patient’s healthcare and health status."
Article | Thread
Journal of Infection
Prevalence, risk factors and characterisation of individuals with long COVID using Electronic Health Records in over 1.5 million COVID cases in England — Han-I Wang et al.
"Risk factors associated with long-COVID symptoms were female sex, non-white ethnicity, obesity, and pre-existing medical conditions like anxiety, depression, type II diabetes, and somatic symptom disorders."
Article | Thread
..........
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Part 2 of 2
Research
ME/CFS research
Bioarchiv
Fast Targeted Metabolomics for Analyzing Metabolic Diversity of Bacterial Indole Derivatives in ME/CFS Gut Microbiome - Tian et al.
"This study investigates whether the metabolic diversity—the concentration distribution—of bacterial indole pathway metabolites can differentiate bacterial strains and classify ME/CFS samples."
Article | Thread
University of Applied Sciences Technikum Wien
Establishment of a primary dorsal root ganglion cell culture to screen for autoantibodies for patients with myalgic encephalomyelitis/chronic fatigue syndrome or Post COVID - Wachutka.
This thesis identified nine patients that showed immunoreactivity in both tissue and cell based essays indicating a role of autoantibodies targeting neuronal antigens of dorsal root ganglia cells.
Thesis | Thread
Long Covid research
Annals of Internal Medicine
Differentiation of Prior SARS-CoV-2 Infection and Postacute Sequelae by Standard Clinical Laboratory Measurements in the RECOVER Cohort — Kristine M. Erlandson et al.
"In summary, our findings suggest that even highly symptomatic PASC may have no clinically observable objective findings on routine laboratory testing. Understanding the basic biological underpinnings of persistent symptoms after SARS-CoV-2 infection will likely require a rigorous focus on investigations beyond routine clinical laboratory studies (for example, transcriptomics, proteomics, metabolomics) to identify novel biomarkers."
Article | Thread
Preprints with the Lancet
Vascular Inflammation in Neuropsychiatric Long Covid — McAlpine et al.
"Alterations in biomarkers of vascular inflammation strongly associate with the presence of N-LC. Biomarkers of endothelial adhesion and vascular calcification are only elevated in N-LC compared to both groups, suggesting a pathophysiology distinct from the resolving effects of [Acute Covid]."
Article | Thread
Experimental Neurology
Insights into COVID-19 pathophysiology from a longitudinal multisystem report during acute infection — Brihmat et al.
"When analyzing the data obtained from the visit that turned out to be performed while the participant was suffering from SARS-CoV-2 infection, relative increases in bilateral sensorimotor activation during handgrip tasks, overall reduced resting-state intra- and interhemispheric functional connectivity between cortical prefrontal, frontal, and parietal regions, increased corticospinal excitability, reduced intracortical inhibition, decreased maximal handgrip and pinch strength and increased autonomic cardiovascular functioning were observed."
Article | Thread
Journal of Translational Medicine
Multi-omics landscapes reveal heterogeneity in long COVID patients characterized with enhanced neutrophil activity — Lin et al.
"We discovered a subgroup of long COVID population characterized by neutrophil activation, which might associate with the development of psychiatric symptoms and indicate a higher inflammatory state."
Article | Thread
Frontiers in Immunology
The longitudinal characterization of immune responses in COVID-19 patients reveals novel prognostic signatures for disease severity, patients’ survival and long COVID — Noviello et al.
"A decision tree including the main clinical, laboratory, and biological variables at admission identified low NK-cell precursors and CD14+CD91+ monocytes, and high CD8+ Effector Memory T cell frequencies as the most robust immunological correlates of COVID-19 severity and reduced survival. Moreover, low regulatory B-cell frequency at one month was associated with the susceptibility to develop long COVID at six months, likely due to their immunomodulatory ability."
Article | Thread
American Journal of Medicine Open
Characterization of change in cognition before and after COVID-19 infection in essential workers at midlife — Sekendiz et al.
"Longitudinal models indicated a significant decline in cognitive throughput (β=-0.168, P=.001) following COVID-19, after adjustment for pre-COVID-19 functioning, demographics, and medical factors. Observed changes in throughput were equivalent to 10.6 years of normal aging. COVID-19 was associated with observed cognitive decline and was worse among patients with PASC or severe COVID-19."
Article | Thread
International Journal of Molecular Sciences
Revealing the Hidden Impacts: Insights into Biological Aging and Long-Term Effects in Pauci- and Asymptomatic COVID-19 Healthcare Workers — Campisi et al.
"We investigated early molecular markers—DNA methylation age (DNAmAge) and telomere length (TL)—in blood leukocytes, nasal cells (NCs), and induced sputum (IS) one year post-infection in pauci- and asymptomatic healthcare workers (HCWs) infected during the first pandemic wave" "Notably, HCWs exhibited accelerated biological aging in IS cells compared to both blood leukocytes (p ≤ 0.05) and NCs (p < 0.001) and were biologically older than COPD patients (p < 0.05)."
Article | Thread
Clinical Pediatrics
Orthostatic Intolerance in Children With Long COVID Utilizing a 10-Minute Passive Standing Test — Amanda K. Morrow et al.
"Our findings suggest that OI is common in pediatric long COVID, necessitating appropriate clinical screening and treatment."
Article | Thread
Life Sciences
Designing and optimizing clinical trials for long COVID — Vogel et al.
"patient-led studies and studies with patient scientists and high patient engagement are most likely to meet these recommendations, and support the design of effective and comprehensive research. With collaborative thoughtful study design and a focus on clinically translational, high-impact research, promising treatments for Long COVID will hopefully emerge."
Article | Thread
The Lancet Digital Health
Physiological presentation and risk factors of long COVID in the UK using smartphones and wearable devices: a longitudinal, citizen science, case–control study — Callum Stewart et al.
"We compared two methods of inferring the presence of long COVID, one of which was based on persistent changes in resting heart rate and the other on persistent self-reported symptoms of COVID-19."
Article | Thread
PLOS ONE
The association between prolonged SARS-CoV-2 symptoms and work outcomes — Arjun K. Venkatesh et al.
"At three months, participants with ≥5 symptoms had a higher adjusted odds ratio of missing ≥10 workdays (2.96, 95% CI 1.81–4.83) and not returning to work (2.44, 95% CI 1.58–3.76) compared to those with no symptoms."
Article | Thread
PLOS ONE
Comparative analysis of financial toxicity between SARS-CoV-2 infection and common comorbidities — Han Su et al.
"American adults with Long COVID […] exhibited a higher prevalence of financial toxicity compared to individuals with common comorbidities." "These findings emphasize the importance of evaluating strategies to reduce economic burden and increase awareness of the effect of Long COVID-related financial toxicity on patient’s healthcare and health status."
Article | Thread
Journal of Infection
Prevalence, risk factors and characterisation of individuals with long COVID using Electronic Health Records in over 1.5 million COVID cases in England — Han-I Wang et al.
"Risk factors associated with long-COVID symptoms were female sex, non-white ethnicity, obesity, and pre-existing medical conditions like anxiety, depression, type II diabetes, and somatic symptom disorders."
Article | Thread
..........
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 19th August 2024
News, advocacy and articles
UK Action for ME are promoting a template for a 'care and support plan' designed by physiotherapist Peter Gladwell and some of his patients. Forum discussion has raised serious concerns about the purpose and content of this document, including not being compliant with the 2021 NICE guideline for ME/CFS. Some members have sent a letter spelling out these problems and urging AfME to withdraw the document and make wider changes.
AfME article | Discussion thread | Letter
Boom and bust, another ME/CFS myth? - ME/CFS Skeptic
ME/CFS patients are often said to have an erratic activity pattern, where sudden bursts of activity are followed by prolonged bed rest. This boom and bust pattern is thought to cause crashes and setbacks. Despite the popularity of this view, there is no evidence to support it.
Article | Thread
Science for ME and Cochrane
Our latest petition update covers thanks to our supporters, our latest letter to Cochrane, the broken promises continue, and the harm continues.
We have received a brief reply to our latest letter about our complaints saying they are still investigating and 'will update you as soon as possible'.
Petition update | Petition | Letter from Cochrane | Thread
UK LBC radio phone-in program about ME/CFS and Long Covid presented by Natasha Devon. Wessely's influence and CBT/GET were raised. Callers gave moving accounts of the devastating impact of living with severe ME/CFS while also experiencing gaslighting and appalling treatment by clinicians, neglect, loneliness and lack of support.
Recording (45 minutes) | Thread
..........
Research news
Technology Networks What's the Current State of ME/CFS Research?
"ME Research UK is a UK-based charity that commissions and funds scientific research into the causes, consequences and treatment of ME. Technology Networks caught up with the charity’s resident Science Writer, Dr. Emma Slack, to find out what research it’s currently funding and what promising findings have recently been made."
Article l Thread
..........
Coming events
USA Symposium - A new paradigm: Infection-associated chronic illnesses affecting children
The 7th annual CNH-NIAID Symposium with CME credits takes place September 5th in Washington. Speakers include NIAID Director Marrazzo, Avindra Nath, David Goldstein, Anne Louise Oaklander, David Putrino, Ian Simon, Yaser A. Diab and more
More information l Thread
...........
Research
ME/CFS research
Medicina
A Multimodal Magnetic Resonance Imaging Study on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Feasibility and Clinical Correlation — Kaur et al.
"The study demonstrates the feasibility of combining MRS and fMRI to capture neurochemical and neurophysiological features of ME/CFS in female participants."
Article | Thread
Long Covid research
JAMA
Characterizing Long COVID in Children and Adolescents — Rachel S. Gross et al.
"In models adjusted for sex and race and ethnicity, 14 symptoms in both school-age children and adolescents were more common in those with SARS-CoV-2 infection history compared with those without infection history, with 4 additional symptoms in school-age children only and 3 in adolescents only. These symptoms affected almost every organ system."
Article | Thread
Neurology
Persistent Autonomic and Immunologic Abnormalities in Neurologic Post-Acute Sequelae of SARS-CoV2 Infection — David Goldstein et al.
"A total of 7 patients with Neuro-PASC (6 women, age range 42–63 years) underwent follow-up testing." "Across domains, 71% (range 49%–93%) of the abnormalities noted during the first evaluation were still present at the time of follow-up testing."
Article | Thread
Journal of Cerebral Blood Flow & Metabolism
Cerebral blood flow alterations and host genetic association in individuals with long COVID: A transcriptomic-neuroimaging study — Yao Wang et al.
"Lower CBF in the left frontal-temporal gyrus was associated with higher fatigue and worse cognition in individuals with long COVID. This CBF pattern was spatially associated with the expression of 2,178 genes, which were enriched in the molecular functions and biological pathways of COVID-19."
Article | Thread
Preprint: MedRxiv
Soluble IL-2R contributes to impaired muscle cell mitochondrial respiration in fatigued individuals with post-acute sequelae of COVID — Laura P. Brown et al.
"Despite reporting chronic fatigue and achieving 10% less expected 6-minute walking distance compared to controls, PASC participants showed no apparent differences in muscle size or strength. However, they exhibited significant impairment of mitochondrial respiration across multiple components of the respiratory chain."
Article | Thread
Clinical Epigenetics
Epigenetic patterns, accelerated biological aging, and enhanced epigenetic drift detected 6 months following COVID-19 infection: insights from a genome-wide DNA methylation study — Luciano et al.
"Dysregulated genes highlighted potential links to glutamate/glutamine metabolism, which may be relevant to PASC symptoms. Key genes with potential significance to COVID-19 infection and long-term effects include GLUD1, ATP1A3, and ARRB2. Furthermore, Horvath's epigenetic clock showed a slight but significant age acceleration in post-COVID-19 patients."
Article | Thread
Nature Scientific Reports
Patients recovering from COVID-19 who presented with anosmia during their acute episode have behavioral, functional, and structural brain alterations — Kausel et al.
"Our findings build upon prior research by indicating that the presence of anosmia during the acute phase, despite transient symptoms, indicates possible brain alterations." "Anosmia was associated with decreased BOLD signal during decision-making in specific brain regions"
Article | Thread
Frontiers in Microbiology
Impact of age and sex on neuroinflammation following SARS-CoV-2 infection in a murine model — Krishna et al.
Mouse study. "These findings demonstrate that SARS-CoV-2 infection triggers a neuroinflammatory response, despite the lack of detectable virus in the brain. Aberrant activation of innate immune response, disruption of blood-brain barrier and endothelial cell integrity, and suppression of neuronal activity and axonogenesis underlie the impact of SARS- CoV-2 infection on the brain."
Article | Thread
Neuroepidemiology
Gender Disparities in Neurological Symptoms of Long-COVID: A systematic review and meta-analysis — Gorenshtein et al.
"Our findings suggest that women are at a higher risk for long-COVID neurological symptoms, including fatigue, headaches, brain fog, depression, and anosmia, compared to men."
Article | Thread
The American Journal of Medicine
Adult outpatients with long COVID infected with SARS-CoV-2 Omicron variant. Part 1: Oral microbiota alterations — Jianchao Xu et al.
"There were distinct variations in oral microbiota between COVID-19 patients with and without long COVID. Changes in oral microbiota may indicate long COVID."
Article | Thread
Clinical Medicine
Improving Quality in Adult Long Covid Services: Findings from the LOCOMOTION Quality Improvement Collaborative — Darbyshire et al.
"The goal of successive quality improvement cycles aimed at changing practice to align with evidence was sometimes hard to achieve because definitive evidence did not yet exist in this new condition; many patients had comorbidities; and clinics were practically constrained in various ways. Nevertheless, much progress was made and a series of ‘best practice’ guides was produced"
Article | Thread
The Medical Journal of Australia
The public health and economic burden of long COVID in Australia, 2022–24: a modelling study — Costantino et al.
"Our model projected that the number of people with long COVID following a single infection in 2022 would peak in September 2022, when 310 341–1 374 805 people (1.2–5.4% of Australians) would have symptoms of long COVID, declining to 172 530–872 799 people (0.7–3.4%) in December 2024"
Article | Thread
Infectious Diseases
Interferon gene expression declines over time post-COVID infection and in long COVID patients — A. Gómez-Carballa et al.
"The IFN signal observed in LC is comparable to that seen in matched post-infection controls (non-LC patients) and in samples collected during acute phase of infection (a few days post-infection)."
Article | Thread
Viral Immunology
Cytokine Profile in Patients with Postacute Sequelae of COVID-19 — Nathalie Ghorra et al.
"In our study, the cytokine release after in vitro stimulation of TLRs shows significant differences between the group of healthy volunteers and the group of patients, particularly following TLR4 and TLR7/8 activation."
Article | Thread
Journal of Medical Virology
From human herpes virus-6 reactivation to autoimmune reactivity against tight junctions and neuronal antigens, to inflammation, depression, and chronic fatigue syndrome due to Long COVID — Michael Maes et al.
"IgA/IgM/IgG responses to severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), HHV-6, ZOOC, and neuronal proteins, C-reactive protein (CRP), and advanced oxidation protein products (AOPPs), were measured in 90 Long COVID patients and 90 healthy controls."
Article | Thread
Irish Journal of Medical Science
An investigation into General Practitioners’ experience with Long Covid — Farrell et al.
"81% (43/53) were not confident in treating patients with LC. 70% (37/53) were unaware of indications for referral to secondary care. 38% (20/53) were aware of the referral pathways to local LC clinics. 93% (49/53) agreed there were educational deficits regarding LC."
Article | Thread
..........
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, advocacy and articles
UK Action for ME are promoting a template for a 'care and support plan' designed by physiotherapist Peter Gladwell and some of his patients. Forum discussion has raised serious concerns about the purpose and content of this document, including not being compliant with the 2021 NICE guideline for ME/CFS. Some members have sent a letter spelling out these problems and urging AfME to withdraw the document and make wider changes.
AfME article | Discussion thread | Letter
Boom and bust, another ME/CFS myth? - ME/CFS Skeptic
ME/CFS patients are often said to have an erratic activity pattern, where sudden bursts of activity are followed by prolonged bed rest. This boom and bust pattern is thought to cause crashes and setbacks. Despite the popularity of this view, there is no evidence to support it.
Article | Thread
Science for ME and Cochrane
Our latest petition update covers thanks to our supporters, our latest letter to Cochrane, the broken promises continue, and the harm continues.
We have received a brief reply to our latest letter about our complaints saying they are still investigating and 'will update you as soon as possible'.
Petition update | Petition | Letter from Cochrane | Thread
UK LBC radio phone-in program about ME/CFS and Long Covid presented by Natasha Devon. Wessely's influence and CBT/GET were raised. Callers gave moving accounts of the devastating impact of living with severe ME/CFS while also experiencing gaslighting and appalling treatment by clinicians, neglect, loneliness and lack of support.
Recording (45 minutes) | Thread
..........
Research news
Technology Networks What's the Current State of ME/CFS Research?
"ME Research UK is a UK-based charity that commissions and funds scientific research into the causes, consequences and treatment of ME. Technology Networks caught up with the charity’s resident Science Writer, Dr. Emma Slack, to find out what research it’s currently funding and what promising findings have recently been made."
Article l Thread
..........
Coming events
USA Symposium - A new paradigm: Infection-associated chronic illnesses affecting children
The 7th annual CNH-NIAID Symposium with CME credits takes place September 5th in Washington. Speakers include NIAID Director Marrazzo, Avindra Nath, David Goldstein, Anne Louise Oaklander, David Putrino, Ian Simon, Yaser A. Diab and more
More information l Thread
...........
Research
ME/CFS research
Medicina
A Multimodal Magnetic Resonance Imaging Study on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Feasibility and Clinical Correlation — Kaur et al.
"The study demonstrates the feasibility of combining MRS and fMRI to capture neurochemical and neurophysiological features of ME/CFS in female participants."
Article | Thread
Long Covid research
JAMA
Characterizing Long COVID in Children and Adolescents — Rachel S. Gross et al.
"In models adjusted for sex and race and ethnicity, 14 symptoms in both school-age children and adolescents were more common in those with SARS-CoV-2 infection history compared with those without infection history, with 4 additional symptoms in school-age children only and 3 in adolescents only. These symptoms affected almost every organ system."
Article | Thread
Neurology
Persistent Autonomic and Immunologic Abnormalities in Neurologic Post-Acute Sequelae of SARS-CoV2 Infection — David Goldstein et al.
"A total of 7 patients with Neuro-PASC (6 women, age range 42–63 years) underwent follow-up testing." "Across domains, 71% (range 49%–93%) of the abnormalities noted during the first evaluation were still present at the time of follow-up testing."
Article | Thread
Journal of Cerebral Blood Flow & Metabolism
Cerebral blood flow alterations and host genetic association in individuals with long COVID: A transcriptomic-neuroimaging study — Yao Wang et al.
"Lower CBF in the left frontal-temporal gyrus was associated with higher fatigue and worse cognition in individuals with long COVID. This CBF pattern was spatially associated with the expression of 2,178 genes, which were enriched in the molecular functions and biological pathways of COVID-19."
Article | Thread
Preprint: MedRxiv
Soluble IL-2R contributes to impaired muscle cell mitochondrial respiration in fatigued individuals with post-acute sequelae of COVID — Laura P. Brown et al.
"Despite reporting chronic fatigue and achieving 10% less expected 6-minute walking distance compared to controls, PASC participants showed no apparent differences in muscle size or strength. However, they exhibited significant impairment of mitochondrial respiration across multiple components of the respiratory chain."
Article | Thread
Clinical Epigenetics
Epigenetic patterns, accelerated biological aging, and enhanced epigenetic drift detected 6 months following COVID-19 infection: insights from a genome-wide DNA methylation study — Luciano et al.
"Dysregulated genes highlighted potential links to glutamate/glutamine metabolism, which may be relevant to PASC symptoms. Key genes with potential significance to COVID-19 infection and long-term effects include GLUD1, ATP1A3, and ARRB2. Furthermore, Horvath's epigenetic clock showed a slight but significant age acceleration in post-COVID-19 patients."
Article | Thread
Nature Scientific Reports
Patients recovering from COVID-19 who presented with anosmia during their acute episode have behavioral, functional, and structural brain alterations — Kausel et al.
"Our findings build upon prior research by indicating that the presence of anosmia during the acute phase, despite transient symptoms, indicates possible brain alterations." "Anosmia was associated with decreased BOLD signal during decision-making in specific brain regions"
Article | Thread
Frontiers in Microbiology
Impact of age and sex on neuroinflammation following SARS-CoV-2 infection in a murine model — Krishna et al.
Mouse study. "These findings demonstrate that SARS-CoV-2 infection triggers a neuroinflammatory response, despite the lack of detectable virus in the brain. Aberrant activation of innate immune response, disruption of blood-brain barrier and endothelial cell integrity, and suppression of neuronal activity and axonogenesis underlie the impact of SARS- CoV-2 infection on the brain."
Article | Thread
Neuroepidemiology
Gender Disparities in Neurological Symptoms of Long-COVID: A systematic review and meta-analysis — Gorenshtein et al.
"Our findings suggest that women are at a higher risk for long-COVID neurological symptoms, including fatigue, headaches, brain fog, depression, and anosmia, compared to men."
Article | Thread
The American Journal of Medicine
Adult outpatients with long COVID infected with SARS-CoV-2 Omicron variant. Part 1: Oral microbiota alterations — Jianchao Xu et al.
"There were distinct variations in oral microbiota between COVID-19 patients with and without long COVID. Changes in oral microbiota may indicate long COVID."
Article | Thread
Clinical Medicine
Improving Quality in Adult Long Covid Services: Findings from the LOCOMOTION Quality Improvement Collaborative — Darbyshire et al.
"The goal of successive quality improvement cycles aimed at changing practice to align with evidence was sometimes hard to achieve because definitive evidence did not yet exist in this new condition; many patients had comorbidities; and clinics were practically constrained in various ways. Nevertheless, much progress was made and a series of ‘best practice’ guides was produced"
Article | Thread
The Medical Journal of Australia
The public health and economic burden of long COVID in Australia, 2022–24: a modelling study — Costantino et al.
"Our model projected that the number of people with long COVID following a single infection in 2022 would peak in September 2022, when 310 341–1 374 805 people (1.2–5.4% of Australians) would have symptoms of long COVID, declining to 172 530–872 799 people (0.7–3.4%) in December 2024"
Article | Thread
Infectious Diseases
Interferon gene expression declines over time post-COVID infection and in long COVID patients — A. Gómez-Carballa et al.
"The IFN signal observed in LC is comparable to that seen in matched post-infection controls (non-LC patients) and in samples collected during acute phase of infection (a few days post-infection)."
Article | Thread
Viral Immunology
Cytokine Profile in Patients with Postacute Sequelae of COVID-19 — Nathalie Ghorra et al.
"In our study, the cytokine release after in vitro stimulation of TLRs shows significant differences between the group of healthy volunteers and the group of patients, particularly following TLR4 and TLR7/8 activation."
Article | Thread
Journal of Medical Virology
From human herpes virus-6 reactivation to autoimmune reactivity against tight junctions and neuronal antigens, to inflammation, depression, and chronic fatigue syndrome due to Long COVID — Michael Maes et al.
"IgA/IgM/IgG responses to severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), HHV-6, ZOOC, and neuronal proteins, C-reactive protein (CRP), and advanced oxidation protein products (AOPPs), were measured in 90 Long COVID patients and 90 healthy controls."
Article | Thread
Irish Journal of Medical Science
An investigation into General Practitioners’ experience with Long Covid — Farrell et al.
"81% (43/53) were not confident in treating patients with LC. 70% (37/53) were unaware of indications for referral to secondary care. 38% (20/53) were aware of the referral pathways to local LC clinics. 93% (49/53) agreed there were educational deficits regarding LC."
Article | Thread
..........
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Kalliope
Senior Member (Voting Rights)
Week beginning 26th August 2024
Part 1 of 2
News, advocacy and articles
UK survey MEA article: Help the British Psychological Society develop good practice guidelines for ME/CFS. Survey closes 9th October 2024.
"While ME/CFS is not a psychological condition, many people with ME/CFS see a psychologist to help them learn how best to live with the condition or for other reasons unrelated to ME/CFS. We wish to ensure that these people receive the best current advice, which adheres to the NICE Guideline on ME/CFS, about topics such as pacing and symptom management."
Article | Survey | Thread
UK Excellent segment about ME/CFS on BBC Breakfast with interviews with Dr Binita Kane, Dr William Weir, Karen Hargrove and Oonagh Cousins. Uploaded on YouTube by Broken Battery who summarises: "Mentions symptoms, severity, history, Melvin Ramsay, psychological framing, NICE guidelines, problems receiving care for severe patients, debunked Graded Exercise and pacing."
YouTube video l Thread
Germany
A late night satire show, ZDF Magazin Royale, with Jan Böhmermann had Long Covid and ME/CFS on the agenda and ridiculed the bad advice patients receive in health care.
Video (from 11 minutes) l Thread
YouTuber Doktor Whatson who covers topics as science, has made a video on the pandemic, Long Covid and ME/CFS. Includes an interview with doctor and researcher Professor Carmen Scheibenbogen.
YouTube video l Thread
The Magazine Brigitte has interviewed four ME patients. The article says the number of ME/CFS patients in Germany has doubled from about 250,000 to 500,000 due to the pandemic.
Article l Thread
USA The Wall Street Journal - Long Covid Knocked a Million Americans Off Their Career Paths
"Among Covid’s superlatives is the blow it dealt to people’s career plans en masse.
Never before have so many Americans redrawn their relationships with work as a result of one public-health crisis."
Article (Archived) l Thread
Australia Severe ME Day Webinar Event 2024 Lived Experience Forum
ME Group Australia hosts a webinar featuring patients and family members. Chaired by Nicole Roudenko (immunology specialist). Includes testimony from Helen Donovan, whose son Alem Mathees was instrumental in achieving the court-ordered access to the PACE trial data, leading to its debunking.
Video | Thread
Malta Today New social assistance assessment covers hidden disabilities
"For the first time, people with hidden conditions such as fibromyalgia, ME and autism will be eligible for disability benefits after Malta adopts World Health Organisation functionality assessment."
Article l Thread
Sweden The recent guidelines for Long Covid and related conditions including ME/CFS, which promotes GET, is receiving more criticism. Dr. Lisa Norén from the Covid Association says recommending gradually increased activity can cause iatrogenic harm and Dr. Per Julin says severe setbacks from exercise counteract the healing process. Sweden's National Board of Health and Welfare, who published the guidelines, says there's insufficient support from research to not recommend exercise.
Sveriges Radio l Sveriges Radio l Läkartidningen l Thread
Croatia
The Croatian ME/CFS/Fibromyalgia/Dysautonomia patient organisation has written a facebook post where they invite people to a congress of Slovenian, Serbian and Croatian societies for ME/SKU, which will be held on the 14th. September in Postojna, Slovenia.
Article | Thread
............
Research news
University of Miami webinar Long COVID: An Emerging Global Health Crisis, featuring Klimas, Al-Aly, Palacio and others
Video Duration 1:05h | Thread
............
Coming events
USA The RECOVER initiative
"Two RECOVER study sites – ILLInet RECOVER and RECOVER Boston – collaborate with community-based organizations on Long COVID summit to improve understanding and treatment of the condition."
September 12th, 2024
Article | Agenda | Register | Thread
USA: NIH workshop
RECOVER Treating Long COVID – Navigating the Pathway Forward
National Institutes of Health Campus
Monday, September 23, 2024 - Wednesday, September 25, 2024
Registration closed on August 30th.
Details | Registration | Thread
Bateman Horne Center and Solve ME
Webinar series: Severe ME/CFS: Care, Rights, and Research
Each webinar takes place from 10-11 am PT (11 am – 12 pm MT).
Registration is now open.
October 9: Caregiving; November 13: Legal rights;
December 4: Medical care; January 15: Research
Details | Thread
...............
Go to the next post for the research section
Part 1 of 2
News, advocacy and articles
UK survey MEA article: Help the British Psychological Society develop good practice guidelines for ME/CFS. Survey closes 9th October 2024.
"While ME/CFS is not a psychological condition, many people with ME/CFS see a psychologist to help them learn how best to live with the condition or for other reasons unrelated to ME/CFS. We wish to ensure that these people receive the best current advice, which adheres to the NICE Guideline on ME/CFS, about topics such as pacing and symptom management."
Article | Survey | Thread
UK Excellent segment about ME/CFS on BBC Breakfast with interviews with Dr Binita Kane, Dr William Weir, Karen Hargrove and Oonagh Cousins. Uploaded on YouTube by Broken Battery who summarises: "Mentions symptoms, severity, history, Melvin Ramsay, psychological framing, NICE guidelines, problems receiving care for severe patients, debunked Graded Exercise and pacing."
YouTube video l Thread
Germany
A late night satire show, ZDF Magazin Royale, with Jan Böhmermann had Long Covid and ME/CFS on the agenda and ridiculed the bad advice patients receive in health care.
Video (from 11 minutes) l Thread
YouTuber Doktor Whatson who covers topics as science, has made a video on the pandemic, Long Covid and ME/CFS. Includes an interview with doctor and researcher Professor Carmen Scheibenbogen.
YouTube video l Thread
The Magazine Brigitte has interviewed four ME patients. The article says the number of ME/CFS patients in Germany has doubled from about 250,000 to 500,000 due to the pandemic.
Article l Thread
USA The Wall Street Journal - Long Covid Knocked a Million Americans Off Their Career Paths
"Among Covid’s superlatives is the blow it dealt to people’s career plans en masse.
Never before have so many Americans redrawn their relationships with work as a result of one public-health crisis."
Article (Archived) l Thread
Australia Severe ME Day Webinar Event 2024 Lived Experience Forum
ME Group Australia hosts a webinar featuring patients and family members. Chaired by Nicole Roudenko (immunology specialist). Includes testimony from Helen Donovan, whose son Alem Mathees was instrumental in achieving the court-ordered access to the PACE trial data, leading to its debunking.
Video | Thread
Malta Today New social assistance assessment covers hidden disabilities
"For the first time, people with hidden conditions such as fibromyalgia, ME and autism will be eligible for disability benefits after Malta adopts World Health Organisation functionality assessment."
Article l Thread
Sweden The recent guidelines for Long Covid and related conditions including ME/CFS, which promotes GET, is receiving more criticism. Dr. Lisa Norén from the Covid Association says recommending gradually increased activity can cause iatrogenic harm and Dr. Per Julin says severe setbacks from exercise counteract the healing process. Sweden's National Board of Health and Welfare, who published the guidelines, says there's insufficient support from research to not recommend exercise.
Sveriges Radio l Sveriges Radio l Läkartidningen l Thread
Croatia
The Croatian ME/CFS/Fibromyalgia/Dysautonomia patient organisation has written a facebook post where they invite people to a congress of Slovenian, Serbian and Croatian societies for ME/SKU, which will be held on the 14th. September in Postojna, Slovenia.
Article | Thread
............
Research news
University of Miami webinar Long COVID: An Emerging Global Health Crisis, featuring Klimas, Al-Aly, Palacio and others
Video Duration 1:05h | Thread
............
Coming events
USA The RECOVER initiative
"Two RECOVER study sites – ILLInet RECOVER and RECOVER Boston – collaborate with community-based organizations on Long COVID summit to improve understanding and treatment of the condition."
September 12th, 2024
Article | Agenda | Register | Thread
USA: NIH workshop
RECOVER Treating Long COVID – Navigating the Pathway Forward
National Institutes of Health Campus
Monday, September 23, 2024 - Wednesday, September 25, 2024
Registration closed on August 30th.
Details | Registration | Thread
Bateman Horne Center and Solve ME
Webinar series: Severe ME/CFS: Care, Rights, and Research
Each webinar takes place from 10-11 am PT (11 am – 12 pm MT).
Registration is now open.
October 9: Caregiving; November 13: Legal rights;
December 4: Medical care; January 15: Research
Details | Thread
...............
Go to the next post for the research section
Kalliope
Senior Member (Voting Rights)
Research
Part 2 of 2
ME/CFS research
Medrxiv preprint
Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity - Beentjes, Ponting et al
Some quotes from the abstract: "Here, we use UK Biobank (UKB) data for up to 1,455 ME cases and 131,303 population controls to discover hundreds of molecular and cellular blood traits that differ significantly between cases and controls." "116 of these traits are replicated, as they are significant for both female and male cohorts." "Individually, significant effects on blood traits, however, were not sufficient to cleanly distinguish cases from controls."
Article | Thread
Feminism and Psychology
Toward the emancipation of “medically unexplained” and energy-limiting conditions: Contesting and reimagining psy through the lens of feminist disability studies - Hunt
"I conclude that feminist disability studies can help transform psy in an emancipatory direction through reimagining disability in a socioculturally and biopolitically cognisant, embodied, and maximally inclusive manner. The case of “medically unexplained” and energy-limiting chronic illness exemplifies this assertion."
Article | Thread
BJGP Open
Patient experiences of remote consulting with chronic fatigue syndrome/myalgic encephalomyelitis and fibromyalgia: a qualitative study - Leach et al.
13 interviews were conducted with ME/CFS patients on their experience with remote consultations.
Article | Thread
Advances in Public Health
A Novel Nomogram for Early Identification of CFS-Like Symptoms in University Students with Infectious Mononucleosis - Sun et al. 2024
Tis Chinese research group tried to develop a prediction model for patients with fatigue following infectious mononucleosis in university students.
Article | Thread
Autoimmunity Reviews
Ear abnormalities in chronic fatigue syndrome (CFS), fibromyalgia (FM), Coronavirus-19 infectious disease (COVID) and long-COVID syndrome (PCS), sick-building syndrome (SBS), post-orthostatic tachycardia syndrome (PoTS), and autoimmune/inflammatory syndrome induced by adjuvants (ASIA): A systematic review - Sake et al.
The authors did a literature review regarding to hearing and labyrinthic disturbances in the medical conditions described in the title.
Article | Thread
Medicina
A Multimodal Magnetic Resonance Imaging Study on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Feasibility and Clinical Correlation - Kaur et al.
In this brain imaging study, ME/CFS patients showed higher N-Acetylaspartate in the left dorsolateral prefrontal cortex compared to healthy controls which correlated with poorer fatigue, pain, and sleep quality scores.
Article | Thread
Long Covid research
Nature
Fibrin drives thromboinflammation and neuropathology in COVID-19 — Ryu et al.
"Incubation of spike with healthy donor plasma […] resulted in altered clot structure shown by scanning electron microscopy" "we show that fibrin suppresses transcriptomic and phosphoproteomic signal transduction pathways controlling NK cell cytotoxicity, proliferation and migration." "suggest that fibrin interferes with IL-15 signalling"
Article | Thread
Molecular Medicine
Alterations in plasma proteome during acute COVID-19 and recovery — Suski et al.
"we identified 167 proteins that were differentially regulated between follow-up and hospitalization, which functionally aggregated into immune system activation, complement and coagulation cascades, interleukins signalling, platelet activation, and extracellular matrix organization"
Article | Thread
Journal of Cellular and Molecular Medicine
Impaired instructive and protective barrier functions of the endothelial cell glycocalyx pericellular matrix is impacted in COVID-19 disease — Margaret M. Smith and James Melrose
"A critical role for the evolutionarily conserved Hippo mechanosensory cell signalling pathway has been uncovered in the etiopathogenesis of COVID-19 disease and represents a potential new mechanistic pathway for the development of this disease."
Article | Thread
Journal of Medical Virology
Inflammation-, immunothrombosis,- and autoimmune-feedback loops may lead to persistent neutrophil self-stimulation in long COVID — Alain R. Thierry and Dominique Salmon
"Here, we focus on two hypotheses: first, on the possible implication of formation of NETs (NETosis) in the long COVID pathophysiology; and second, on the possible implication of neutrophils and NETs in long COVID, wherein neutrophils' auto‐stimulation derives from a number of intertwined positive feedback loops."
Article | Thread
European Archives of Psychiatry and Clinical Neuroscience
Subjective and objective measures of cognitive function are correlated in persons with Post-COVID-19 Condition: a secondary analysis of a Randomized Controlled Trial — Kwan et al.
"Herein, we report an association between self-reported cognitive functions (i.e., attention/concentration, retrospective memory, prospective memory, and planning/organization) as measured by the PDQ-20 and objective cognitive functions including processing speed, as measured by the DSST, and sets shifting, as measured by the TMT-B, in persons with PCC."
Article | Thread
Journal of Infection
Prevalence and impact of persistent symptoms following SARS-CoV-2 infection among healthcare workers: a cross-sectional survey in the SIREN cohort — Sarah Foulkes et al.
"The prevalence of persistent symptoms (symptoms lasting over 12 weeks) differed by infection episode; highest for first infections (32.7%; 1,557/4,767) compared to second (21.6%; 214/991) and third infections (21.6%; 16/74)."
Article | Thread
Open Forum Infectious Diseases
Two-Year Longitudinal Study Reveals That Long COVID Symptoms Peak and Quality of Life Nadirs at 6–12 Months Postinfection — Zoe O Demko et al.
"During the study period, 33% of participants experienced long COVID (had not returned to pre-COVID-19 health status and reported at least 1 symptom >90 days postinfection); 8% had not returned to their pre-COVID-19 health status 24 months postinfection. Long COVID symptoms peaked 6 months post-COVID-19, frequently causing activity limitations"
Article | Thread
JRSM Open
Long COVID symptoms and demographic associations: A retrospective case series study using healthcare application data — David Sunkersing et al.
"In this app-based, retrospective study across three waves of the pandemic, we found that pain, neuropsychological symptoms and fatigue were the commonest self-reported symptoms in individuals with LC in England and Wales."
Article | Thread
Open Forum Infectious Diseases
Post-Acute Sequelae of COVID (PASC or Long COVID): An Evidenced-based Approach — Griffin
Review article. "It is expected that this growing understanding of the mechanisms driving PASC, and the benefits seen with certain therapeutics may not only lead to better outcomes for those with PASC but may also have the potential for understanding and treating other post-infectious sequelae."
Article | Thread
Nature Scientific Reports
Long COVID diagnostic with differentiation from chronic lyme disease using machine learning and cytokine hubs — Patterson et al.
"Here, we report a machine‑learning approach to LC/PASC diagnosis on 347 individuals using cytokine hubs that are also capable of differentiating LC from chronic lyme disease (CLD)."
Article | Thread
Brain, Behavior, and Immunity
Association between childhood abuse and risk of post-COVID-19 conditions: Results from three large prospective cohort studies — Vyas et al.
"We observed a dose-dependent relationship between severity of childhood abuse and post-COVID conditions (p-trend:<0.0001)" "Several biological pathways may underlie the association we found between childhood abuse and post-COVID conditions."
Article | Thread
Sleep Medicine
Sleep disorder syndromes of post-acute sequelae of SARS-CoV-2 (PASC) / Long Covid — Coelho et al.
"In 42 patients with PASC, five categories of sleep disorder syndromes were observed following a sleep clinic evaluation, including obstructive sleep apnea, chronic insomnia disorder , primary hypersomnia, REM behavior disorder (RBD), and new onset circadian phase delay."
Article | Thread
Nature Scientific Reports
Individually tailored exercise in patients with postural orthostatic tachycardia syndrome related to post-COVID-19 condition – a feasibility study — Svensson et al.
"Symptoms that were frequently reported, during the intervention as well as at pre- and post-assessment, were mental fatigue and PEM. The only fatigue score that was part of the data collection was FSS—however, the scale did not fully seem to capture the complexity of fatigue."
Article | Thread
Annals of Allergy, Asthma & Immunology
Diagnosing, Managing, and Studying Long-COVID Syndromes in Children & Adolescents in Rural and Underserved Populations — Kathryn Weakley and Jessica Snowden
"Increased frequency and severity of COVID-19 infections; decreased access to healthcare and supporting services; environmental and social structure factors that exacerbate post-acute sequelae of COVID-19 (PASC); and increased baseline frequency of health disorders that may complicate post-COVID issues, such as higher rates of obesity, asthma, diabetes, and mental health disorders all place children and adolescents in under-resourced areas at significant risk."
Article | Thread
The Annals of Family Medicine
Challenges in Receiving Care for Long COVID: A Qualitative Interview Study Among Primary Care Patients About Expectations and Experiences — Elena Gardner et al.
"Primary care patients’ experiences seeking care for long COVID are incongruent with their expectations. Patients must overcome barriers at each level of the health care system and are frustrated by the constant challenges."
Article | Thread
British Medical Bulletin
Long COVID among healthcare workers: a narrative review of definitions, prevalence, symptoms, risk factors and impacts — Dempsey et al.
"LC is prevalent among HCWs who become infected by COVID-19." "Identifying the mechanism(s) responsible for LC is a key priority, as this will inform treatments."
Article | Thread
..........
S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Part 2 of 2
ME/CFS research
Medrxiv preprint
Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity - Beentjes, Ponting et al
Some quotes from the abstract: "Here, we use UK Biobank (UKB) data for up to 1,455 ME cases and 131,303 population controls to discover hundreds of molecular and cellular blood traits that differ significantly between cases and controls." "116 of these traits are replicated, as they are significant for both female and male cohorts." "Individually, significant effects on blood traits, however, were not sufficient to cleanly distinguish cases from controls."
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Feminism and Psychology
Toward the emancipation of “medically unexplained” and energy-limiting conditions: Contesting and reimagining psy through the lens of feminist disability studies - Hunt
"I conclude that feminist disability studies can help transform psy in an emancipatory direction through reimagining disability in a socioculturally and biopolitically cognisant, embodied, and maximally inclusive manner. The case of “medically unexplained” and energy-limiting chronic illness exemplifies this assertion."
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BJGP Open
Patient experiences of remote consulting with chronic fatigue syndrome/myalgic encephalomyelitis and fibromyalgia: a qualitative study - Leach et al.
13 interviews were conducted with ME/CFS patients on their experience with remote consultations.
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Advances in Public Health
A Novel Nomogram for Early Identification of CFS-Like Symptoms in University Students with Infectious Mononucleosis - Sun et al. 2024
Tis Chinese research group tried to develop a prediction model for patients with fatigue following infectious mononucleosis in university students.
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Autoimmunity Reviews
Ear abnormalities in chronic fatigue syndrome (CFS), fibromyalgia (FM), Coronavirus-19 infectious disease (COVID) and long-COVID syndrome (PCS), sick-building syndrome (SBS), post-orthostatic tachycardia syndrome (PoTS), and autoimmune/inflammatory syndrome induced by adjuvants (ASIA): A systematic review - Sake et al.
The authors did a literature review regarding to hearing and labyrinthic disturbances in the medical conditions described in the title.
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Medicina
A Multimodal Magnetic Resonance Imaging Study on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Feasibility and Clinical Correlation - Kaur et al.
In this brain imaging study, ME/CFS patients showed higher N-Acetylaspartate in the left dorsolateral prefrontal cortex compared to healthy controls which correlated with poorer fatigue, pain, and sleep quality scores.
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Long Covid research
Nature
Fibrin drives thromboinflammation and neuropathology in COVID-19 — Ryu et al.
"Incubation of spike with healthy donor plasma […] resulted in altered clot structure shown by scanning electron microscopy" "we show that fibrin suppresses transcriptomic and phosphoproteomic signal transduction pathways controlling NK cell cytotoxicity, proliferation and migration." "suggest that fibrin interferes with IL-15 signalling"
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Molecular Medicine
Alterations in plasma proteome during acute COVID-19 and recovery — Suski et al.
"we identified 167 proteins that were differentially regulated between follow-up and hospitalization, which functionally aggregated into immune system activation, complement and coagulation cascades, interleukins signalling, platelet activation, and extracellular matrix organization"
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Journal of Cellular and Molecular Medicine
Impaired instructive and protective barrier functions of the endothelial cell glycocalyx pericellular matrix is impacted in COVID-19 disease — Margaret M. Smith and James Melrose
"A critical role for the evolutionarily conserved Hippo mechanosensory cell signalling pathway has been uncovered in the etiopathogenesis of COVID-19 disease and represents a potential new mechanistic pathway for the development of this disease."
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Journal of Medical Virology
Inflammation-, immunothrombosis,- and autoimmune-feedback loops may lead to persistent neutrophil self-stimulation in long COVID — Alain R. Thierry and Dominique Salmon
"Here, we focus on two hypotheses: first, on the possible implication of formation of NETs (NETosis) in the long COVID pathophysiology; and second, on the possible implication of neutrophils and NETs in long COVID, wherein neutrophils' auto‐stimulation derives from a number of intertwined positive feedback loops."
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European Archives of Psychiatry and Clinical Neuroscience
Subjective and objective measures of cognitive function are correlated in persons with Post-COVID-19 Condition: a secondary analysis of a Randomized Controlled Trial — Kwan et al.
"Herein, we report an association between self-reported cognitive functions (i.e., attention/concentration, retrospective memory, prospective memory, and planning/organization) as measured by the PDQ-20 and objective cognitive functions including processing speed, as measured by the DSST, and sets shifting, as measured by the TMT-B, in persons with PCC."
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Journal of Infection
Prevalence and impact of persistent symptoms following SARS-CoV-2 infection among healthcare workers: a cross-sectional survey in the SIREN cohort — Sarah Foulkes et al.
"The prevalence of persistent symptoms (symptoms lasting over 12 weeks) differed by infection episode; highest for first infections (32.7%; 1,557/4,767) compared to second (21.6%; 214/991) and third infections (21.6%; 16/74)."
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Open Forum Infectious Diseases
Two-Year Longitudinal Study Reveals That Long COVID Symptoms Peak and Quality of Life Nadirs at 6–12 Months Postinfection — Zoe O Demko et al.
"During the study period, 33% of participants experienced long COVID (had not returned to pre-COVID-19 health status and reported at least 1 symptom >90 days postinfection); 8% had not returned to their pre-COVID-19 health status 24 months postinfection. Long COVID symptoms peaked 6 months post-COVID-19, frequently causing activity limitations"
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JRSM Open
Long COVID symptoms and demographic associations: A retrospective case series study using healthcare application data — David Sunkersing et al.
"In this app-based, retrospective study across three waves of the pandemic, we found that pain, neuropsychological symptoms and fatigue were the commonest self-reported symptoms in individuals with LC in England and Wales."
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Open Forum Infectious Diseases
Post-Acute Sequelae of COVID (PASC or Long COVID): An Evidenced-based Approach — Griffin
Review article. "It is expected that this growing understanding of the mechanisms driving PASC, and the benefits seen with certain therapeutics may not only lead to better outcomes for those with PASC but may also have the potential for understanding and treating other post-infectious sequelae."
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Nature Scientific Reports
Long COVID diagnostic with differentiation from chronic lyme disease using machine learning and cytokine hubs — Patterson et al.
"Here, we report a machine‑learning approach to LC/PASC diagnosis on 347 individuals using cytokine hubs that are also capable of differentiating LC from chronic lyme disease (CLD)."
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Brain, Behavior, and Immunity
Association between childhood abuse and risk of post-COVID-19 conditions: Results from three large prospective cohort studies — Vyas et al.
"We observed a dose-dependent relationship between severity of childhood abuse and post-COVID conditions (p-trend:<0.0001)" "Several biological pathways may underlie the association we found between childhood abuse and post-COVID conditions."
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Sleep Medicine
Sleep disorder syndromes of post-acute sequelae of SARS-CoV-2 (PASC) / Long Covid — Coelho et al.
"In 42 patients with PASC, five categories of sleep disorder syndromes were observed following a sleep clinic evaluation, including obstructive sleep apnea, chronic insomnia disorder , primary hypersomnia, REM behavior disorder (RBD), and new onset circadian phase delay."
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Nature Scientific Reports
Individually tailored exercise in patients with postural orthostatic tachycardia syndrome related to post-COVID-19 condition – a feasibility study — Svensson et al.
"Symptoms that were frequently reported, during the intervention as well as at pre- and post-assessment, were mental fatigue and PEM. The only fatigue score that was part of the data collection was FSS—however, the scale did not fully seem to capture the complexity of fatigue."
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Annals of Allergy, Asthma & Immunology
Diagnosing, Managing, and Studying Long-COVID Syndromes in Children & Adolescents in Rural and Underserved Populations — Kathryn Weakley and Jessica Snowden
"Increased frequency and severity of COVID-19 infections; decreased access to healthcare and supporting services; environmental and social structure factors that exacerbate post-acute sequelae of COVID-19 (PASC); and increased baseline frequency of health disorders that may complicate post-COVID issues, such as higher rates of obesity, asthma, diabetes, and mental health disorders all place children and adolescents in under-resourced areas at significant risk."
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The Annals of Family Medicine
Challenges in Receiving Care for Long COVID: A Qualitative Interview Study Among Primary Care Patients About Expectations and Experiences — Elena Gardner et al.
"Primary care patients’ experiences seeking care for long COVID are incongruent with their expectations. Patients must overcome barriers at each level of the health care system and are frustrated by the constant challenges."
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British Medical Bulletin
Long COVID among healthcare workers: a narrative review of definitions, prevalence, symptoms, risk factors and impacts — Dempsey et al.
"LC is prevalent among HCWs who become infected by COVID-19." "Identifying the mechanism(s) responsible for LC is a key priority, as this will inform treatments."
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