News in Brief - August 2024

This thread has a Science for ME 'News in Brief' post for each week in August 2024 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.

 

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
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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
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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
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