News in Brief - September 2024

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

 

Week beginning 1st September 2024

News, advocacy and articles

BMJ Evidence-Based Nursing - Building an NHS that truly supports people living with long COVID and ME: government action needed now, Twycross A, Hughes B, Hargrove K.
Excellent editorial presenting a policy brief which is part of the #ThereForME campaign which is calling for an NHS that is there for people with Long Covid and ME.
Editorial l Thread

Teach ME Treat ME This campaign from #MillionsMissing to educate clinicians and medical students about ME has achieved several milestones in US and UK and is still ongoing. Learn more and how to get involved by following the link.
More information l Thread

The ME Association has awarded Kristian Sommerfelt, Trude Schei and Arild Angelsen the Howes Goudsmit Award for their research study "Severe and Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care".
Article l Thread

USA Stanford ME/CFS Collaborative Research Center held a closed Zoom researchers working group meeting 3-6 September with scientists and clinicians from around the world.
Tweet | Thread

Catastrophizing, time to ditch the term?
In a new blog post, ME/CFS Skeptic looks at the evidence behind 'catastrophizing', a cognitive distortion that amplifies the perceived threat of symptoms that has been at the center of cognitive-behavioral models of pain and fatigue.
Article | Thread

UK Action for ME has withdrawn a problematic Care and Support Plan Template from the Bristol Clinic in response to criticism from people with ME/CFS, including a detailed complaint from some S4ME members (see last week's news). In her published response, Chief Executive Sonya Chowdhury agreed with criticisms, and said "As part of our resources review, we will look at how we meaningfully consult on, test and gather feedback on new/revised resources, to ensure this process is fit for purpose and engages with a cross-section of the ME community."
The Canary An ME/CFS charity has just shamed itself again. So why do people still support it?
Hannah Sharland reports on this story and related issues with AfME and BACME.
AfME response | Canary article | Thread

USA The Santa Clara County Health and Hospital Committee has held a hearing on long COVID and ME/CFS with panelists including Bela Chheda, John Chia, Melanie Hoppers, Supriya Narasimhana and Angela Suarez.
YouTube l Thread
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In memory

Sammy Lincroft, founder and writer of the blog "ME and more", cofounder of @mutualaidforme and from the instagram account @m.e_and_more has died at only 25 years old in Melbourne, Australia. A virtual memorial and celebration of her life will be taking place.
Thread (members only)
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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

UK Action for ME AGM
"You are invited to our 2024 Annual General Meeting (AGM) where you can hear about how we’ve worked with and supported people in the last financial year. Please join us from 2pm on Friday 13 September, online via Zoom. All are welcome, and registration is free". Questions can be submitted in advance.
AfME with links | Thread

UK ME/CFS biobank September 19th, join the CureME team at LSHTM from 5 PM to 8 PM for a research exchange. We invite ME/CFS patients and researchers to share insights and connect!
Registration | 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
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Research

ME/CFS research

International Journal of Molecular Sciences
Identifying microRNAs Possibly Implicated in [ME/CFS] and Fibromyalgia: A Review - Tsamou et al
"Dysregulated miRNAs in ME/CFS and FM may serve as promising biomarkers for these diseases."
Article | Thread

Uppsala University Doctoral thesis
Exploring the role of tryptophan metabolites [ME/CFS]: Development and application of high resolution mass spectrometry methods - Abujrais, Sandy
Thesis | Thread | Thread on published research

Research Square
Stroop and practice effects in cognitive dysfunction of Long COVID and Myalgic Encephalomyelitis / Chronic Fatigue Syndrome - Braniuk et al.
Using the Stroop task, the authors found that ME/CFS and Long Covid patients have global slowing of response times that cannot be overcome by practice suggesting slower neurotransmission or white matter conduction between network nodes during problem solving.
Article | Thread

Long Covid research

Lancet: eClinicalMedicine
Characteristics and predictors of Long Covid in children: a 3-year prospective cohort study — Anna Camporesi et al.
"This is the longest follow-up study of children with SARS-CoV-2 infection, showing a significant and long-lasting burden of Long Covid in the pediatric population." "In line with our previous study and others, the most commonly persisting symptoms identified were fatigue, post-exertional dyspnea, headache, and gastrointestinal symptoms."
Article | Thread

Nature
An aberrant immune–epithelial progenitor niche drives viral lung sequelae — Narasimhan et al.
Studying pulmonary fibroproliferative disease. "we found a central role for lung-resident CD8+ T cell–macrophage interactions in impairing alveolar regeneration and driving fibrotic sequelae after acute viral pneumonia. Specifically, IFNγ and TNF derived from CD8+ T cells stimulated local macrophages to chronically release IL-1β"
Article | Thread

European Archives of Psychiatry and Clinical Neuroscience
Long COVID patients’ brain activation is suppressed during walking and severer symptoms lead to stronger suppression — Chen et al.
"Our study supports and strengthens previous conclusions by demonstrating that patients with Long COVID who initially experienced mild symptoms showed greater activation in specific brain regions, including bilateral M1, bilateral S1, left FPA, and right DLPFC, compared to those who initially had moderate symptoms."
Article | Thread

Alzheimer's & Dementia
Parallel electrophysiological abnormalities due to COVID-19 infection and to Alzheimer's disease and related dementia — Yang Jiang et al.
"some individuals with COVID-19 display abnormal intrinsic brain activity and cognitive impairments that resemble those seen in neurodegenerative diseases, particularly ADRD. The evidence presented indicates that COVID-19 and ADRD pathologies share common impacts on synaptic and neurovascular dysfunctions involving astrocyte reactivity and neuroinflammation."
Article | Thread

GeroScience
Resting-state neural dynamics changes in older adults with post-COVID syndrome and the modulatory effect of cognitive training and sex — Nagy et al.
"Our results suggest that in older adults with post-COVID syndrome, there is a pronounced shift from more global to local neural processing, potentially contributing to accelerated neural aging in this condition"
Article | Thread

Nature Scientific Reports
Association of physical symptoms with accelerometer-measured movement behaviors and functional capacity in individuals with Long COVID — Rosa-Souza et al.
"individuals who reported post-exercise malaise demonstrated ~ 3000 fewer steps per day and ~ 41 fewer minutes per week in [moderate to vigorous physical activity]." "the observation that light physical activity levels were comparable between participants with and without this symptom implies that individuals can reduce their MVPA as a protective action against the onset of post-exercise malaise."
Article | Thread

International Journal of Molecular Sciences
Novel Clinical, Immunological, and Metabolic Features Associated with Persistent Post-Acute COVID-19 Syndrome — Santana-de Anda et al.
"The main findings of our study are that higher serum levels of pyruvate and lower serum levels of alpha tocopherol at the time of SARS-CoV-2 acute infection are risk factors for PACS development at 7 months and and beyond."
Article | Thread

Open Forum Infectious Diseases
Association of COVID-19 Vaccination with Risk of Medically-Attended Post-Acute Sequelae of COVID-19 During the Ancestral, Alpha, Delta, and Omicron Variant Eras — Swift et al.
"During the observation period, 6.9% of patients experienced medically-attended and diagnosed PASC. A diagnosis of PASC was associated with older age, female sex, hospitalization for the initial infection, and an increased severity-weighted comorbidity index, and was inversely associated with infection during the Omicron period."
Article | Thread

American Journal of Public Health
Long COVID Among People With Preexisting Disabilities — Jean P. Hall et al.
"The prevalence of long COVID was higher among people with preexisting disabilities than in the general population (40.6% vs 18.9%)."
Article | Thread

Pituitary
Long COVID and pituitary dysfunctions: a bidirectional relationship? — di Filippo et al.
"on the basis of the data available in literature, a bidirectional pathophysiological relationship between pituitary dysfunctions and Long COVID may be currently only hypothesized."
Article | Thread
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