News in Brief - July 2024

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

 

Week beginning 1st July 2024

Part 1 of 2

News, advocacy and articles

#MEAction - Northern New England Video from the Dartmouth Medical Education Event is now available on #MEAction's YouTube channel, broken into multiple sections. The day-long event featured Lucinda Bateman of the Bateman Horne Center, Lisa McCorkell of the Patient-Led Research Collaborative, and two panels with clinicians and patients. See thread for links to all videos.
Opening Remarks Video | Thread

Physics Girl fundraiser for the Open Medicine Foundation. A day long livestream on Dianna Cowern's YouTube Physics Girl channel was held on Saturday 6th July. Dianna Cowern has very severe Long Covid / ME/CFS and was seen lying in bed while her husband and experts held discussions. With an initial goal of $10,000, the event raised over $120,000.
Open Medicine Foundation Canada on Twitter: "In the coming weeks, we'll be sharing how your amazing support will be put into action. Stay tuned to see how we leverage this incredible day of giving to accelerate our research efforts."
YouTube | Thread

Sweden Patient advocate Mitt Eremitage writes that Stockholm region has updated the clinical programme to include recommendations of CBT and GET as ME treatments. One of the people responsible for this programme is also part of the psychosocial "Oslo Consortium". With use of Wayback Machines Mitt Eremitage has found and documents subtle but important changes in the programme.
Article 1 l Article 2 l Thread

PEM An informative article on ME and PEM by the Norwegian science news site forskning.no has now been translated into English.
Article l Thread

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Research news and commentary

Video of a roundtable on T-cell dysfunction in ME/CFS and Long Covid, held in May. Speakers include Liisa K. Selin and Anna Gil, viral immunologists from the University of Massachusetts, and Roshan Kumar from HiFiBiO Therapeutics. The two teams are working together on immune mechanisms, biomarkers and possible treatments.
Video | Thread

Trial by Error by David Tuller New Paper Seeks to Reframe Poor Findings in CODES Trial of CBT for Non-Epileptic Seizures
Despite the null results of the CODES trial on CBT as treatment for dissociative seizures, the investigators (including Stone, Carson and Chalder) argue in a new paper that the results really weren't that bad. Tuller walks us through their argumentation and concludes: "The whole thing reads like a desperate attempt to portray their intervention as having had some meaningful effect. The CODES data tell a different story."
Article l Thread
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Coming events

Long Covid Web - "Update from Long Covid Research in the USA"
Tuesday, July 16
10 am Pacific / 1 pm Eastern
Free online event, registration required.
Announcement | Registration | Thread

Bateman Horne Center - Free Online Support Groups
Tuesday, July 16, 1:00 - 2:00 PM Mountain Time
Topic: Grief & Ambiguous Loss
Tuesday, July 30, 1:00 - 2:00 PM Mountain Time
Topic: Reinvesting in Our Lives
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread

Conference The Swedish ME organisation RME and The Swedish COVID Association are organising a conference titled "Circulation in ME/CFS and Postcovid". The conference will take place in Stockholm and in digital version October 9th 2024. Lecturers are Dr. Rekeland, professor Pretorius, professor Fedorowski, professor Systrom, Dr. Vernon and professor Bergquist.
More information l Thread

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For part 2, ME/CFS and Long Covid research, go to the next post.

 

Week beginning 1st July 2024

Part 2 of 2

Research

ME/CFS research

University of Surrey, UK
Thesis abstract: Characterising the Electrophysiological Properties of Cells in Health and Disease - Krista Clarke
"These studies demonstrate novel applications of dielectrophoresis and ζ-potential analysis – to quantitatively diagnose ME/CFS, identify changes in PBMCs following COVID-exposure, and changes in chondrocyte electrophysiology during dedifferentiation."
Thesis embargoed until July 2025
Abstract | Thread

Journal of Translational Medicine
Potential pathophysiological role of the ion channel TRPM3 in ME/CFS and the therapeutic effect of low-dose naltrexone - Lohn et al
The authors explain the role of the Transient receptor potential melastatin 3 (TRPM3) channel. "TRPM3 dysfunction in NK cells can be improved by naltrexone in vitro and ex vivo, which may explain the moderate clinical efficacy of low-dose naltrexone (LDN) treatment. [...] This paper discusses TRPM3’s expression in various organs and its potential impact on ME/CFS symptoms, with a focus on small nerve fibers and the brain, where TRPM3 is involved in presynaptic GABA release."
Article | Thread

Psychoneuroendocrinology
Lower hair cortisol concentration in adolescent and young adult patients with ME/CFS & Q-Fever Fatigue Syndrome compared to controls - Vroegindeweij et al
"Baseline HCC did not predict fatigue improvement during the RCT (p=.449), and HCC increased during the trial (Mdif=.076, p=.021) regardless of clinically relevant fatigue improvement (p=.658)."
Article | Thread

Journal of Exercise Sciences and Physical Activity Reviews
Prediction of myalgic chronic fatigue syndrome disorder with machine learning approach - Yagin & Georgian
"Utilizing open-access metabolomics data from 26 ME/CFS patients and 26 controls, we implemented a comprehensive data preprocessing and modeling framework." Despite this very small sample, the authors claim "high efficacy in identifying positive cases of ME/CFS".
Article | Thread

Fatigue: Biomedicine, Health & Behavior
Symptom-based survey diagnoses may serve to identify more homogenous sub-groups of fatigue and postviral diseases - Bjørn et al.
2362 Norwegian patients responded to a survey using the DePaul Symptom Questionnaires. 1904 respondents had Fatigue or Postviral disease.
Article | Thread

Journal of Critical Psychology, Counselling and Psychotherapy
Reflections on gendered disability denial: The case of energy limiting conditions - Joanne Elizabeth Hunt
A group of debilitating health conditions disproportionately impacting women, increasingly known as ‘energy limiting conditions’, is associated with a long history of medical and societal disability denial. This article offers reflections on socio-cultural, bio-political and intrapsychic contributors to this denial, employing thinking consistent with critical psychology.
Article | Thread

Quality of Life Research
Illness presentation and quality of life in myalgic encephalomyelitis/chronic fatigue syndrome and post COVID-19 condition: a pilot Australian cross-sectional study - Weigel et al.
This Australian study compared 61 patients with ME/CFS with 31 patients with Long Covid and found few differences in symptoms between the two groups.
Article | Thread

Journal of Translational Medicine
Cardiopulmonary and metabolic responses during a 2-day CPET in myalgic encephalomyelitis/chronic fatigue syndrome: translating reduced oxygen consumption to impairment status to treatment considerations - Keller et al.
84 patient with ME/CFS and 71 sedentary controls completed two cardiopulmonary exercise tests (CPET). In contrast to the controls, ME/CFS patients failed to reproduce CPET-1 measures during CPET-2 with significant declines at peak exertion in work, exercise time and other measurements.
Article | Thread

Long Covid research

Science Translational Medicine
Tissue-based T cell activation and viral RNA persist for up to 2 years after SARS-CoV-2 infection — Michael J. Peluso et al.
"We performed whole-body positron emission tomography imaging in a well-characterized cohort of 24 participants at time points ranging from 27 to 910 days after acute SARS-CoV-2 infection using the radiopharmaceutical agent [18 F]F-AraG, a selective tracer that allows for anatomical quantitation of activated T lymphocytes."
Article | Thread

Preprint: MedRxiv
Relationship between acute SARS-CoV-2 viral clearance with Long COVID Symptoms: a cohort study — Carly B Herbert et al.
"our study of adults with mild to moderate infections offers an important lens into the longitudinal course of SARS-CoV-2 infections occurring outside the clinical setting." "Our results add to evidence showing an association between delayed viral clearance and long COVID." "We also observed that the association between viral clearance and long COVID differed between men and women."
Article | Thread

Journal of Translational Medicine
Targeted metabolomics identifies accurate CSF metabolite biomarkers for the differentiation between COVID-19 with neurological involvement and CNS infections with neurotropic viral pathogens — Neu et al.
"The observed metabolic alterations in CSF, combined with changes in standard CSF parameters, lend further support to the notion that neurological deficits in neuro-COVID patients are mediated by host-derived factors rather than viral replication in CNS." "the reduced concentration of triglycerides (TG[20:1_32:3]) in CSF of patients with neuro-COVID proved to be an excellent biomarker"
Article | Thread

ACM Conferences
The Unanticipated Use of Fitness Tracking Technologies During Post-COVID Syndrome | Proceedings of the 2024 ACM Designing Interactive Systems Conference — Sarah Homewood et al.
"We found that people with long COVID are using commercial fitness tracking technologies in unanticipated ways to collect data such as heart rate, number of steps and sleep quality. These technologies were used to understand the enigmatic long COVID illness and manage symptoms through pacing energy through finding correlations between activities and their impact on their self-tracked data."
Article | Thread

Current Problems in Cardiology
Reduced autonomic function in patients with long-COVID-19 syndrome is mediated by cardiorespiratory fitness — Oscoz-Ochandorena et al.
"our study establishes that patients with LCS exhibit lower absolute and relative HRV values compared to controls, with peak VO2max emerging as a significant mediator in this relationship."
Article | Thread

Preprint: MedRxiv
An HERV-W ENV transcription in atypical memory B cells linked to COVID-19 evolution and risk for long COVID can express the encoded protein from a ribosome readthrough of mRNA from chromosome X — Joanna Brunel et al.
"Results not only confirm HERV-W ENV RNA origin in these patients, but show for the first time how a defective HERV copy can be translated into a complete protein when specific factors make it possible at the ribosome level. The present proof of concept now requires further studies to identify the factors involved in this newly understood mechanism, following SARS-CoV-2 exposure."
Article | Thread

The Journal of Rheumatology
Prevalence and Risk Factors of Post-Acute Sequela of COVID-19 in Adults with Systemic Autoimmune Rheumatic Diseases — Mayan S. Teles et al.
"PASC was reported by 89/299 (29.8%) participants. The most commonly reported symptoms included fatigue (70.8%), loss of concentration/brain fog (68.5%), and joint pain/swelling (38.2%). The most common symptom domain was neurological/psychological (83.1%)."
Article | Thread

Preprint: Research Square
Circulating microclots are structurally associated with Neutrophil Extracellular Traps and their amounts are strongly elevated in long COVID patients — Etheresia Pretorius et al.
"Our study revealed that NETs may be a component of circulating FAM, suggesting that higher NETs formation promotes the stabilization of FAM in the circulation, leading to deleterious effects which (in part) may contribute to the symptoms of LC."
Article | Thread

Advanced Healthcare Materials
Interventional Removal of Travelling Microthrombi Using Targeted Magnetic Microbubble — Yongjian Li et al.
"In this work, an interventional method is developed to identify and remove the traveling microthrombi using targeted-magnetic microbubbles (TMMBs) and an interventional magnetic catheter." "in the rat models, the concentration of microthrombus is reduced by more than 60% in 3 minutes"
Article | Thread
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