Week beginning 27th May 2024
News, advocacy and articles
Australia Emerge presents report to Minister of Health
"Urgent recommendations to improve care for people with ME/CFS and long COVID"
Report |
Press Release |
Thread
Sweden The Patient Complaints Board in Stockholm issued a statement last month concerning political decisions which resulted into ME patients being temporarily left without specialist care. They find the situation worrying and an urgent matter to solve. Sveriges Radio made a short radio segment about ME patients not being able to get hold of necessary medicine because of this situation.
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Sveriges Radio l
Thread
UK Action for ME Supporting people with ME/CFS in hospital
This document provides resources for people with ME/CFS who are going into hospital.
Document |
Thread
Austria
Vienna's city center is currently plastered with #MECFS awareness campaign billboards by the WE&ME Foundation. They are located in some of the most frequently passed pedestrian areas and read: "ME/CFS holds you prisoner".
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Thread
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Research news
DecodeME Applications for access to DecodeME data invited.
"Our ME/CFS data set includes both phenotype and genotype data from thousands of participants, who have consented to us sharing their data on a de-identified basis. In addition, where appropriate and where consent has been given, we can also re-contact participants."
This opportunity closes end of Aug 2025.
Article |
Thread
Long Covid Support Research Involvement Consultancy
"We make it easy to involve people with Long Covid in your research and help ensure your study is relevant, robust and keeps the patient voice at the centre."
"Our research advisers are all people with Long Covid who are trained in Patient Involvement in Research and have practical experience of being involved in various studies. Book a slot in one of our regular scheduled online advice sessions."
Article |
Thread
ME Research UK Report of the ME/CFS Research Roadmap Working Group of Council – May 2024
This article discusses the ME/CFS Research Roadmap Working Group's report published on May 15.
This report "lays out the need for transformative change in ME/CFS research" and lists "27 specific gaps in ME/CFS knowledge/research followed by strategies to defeat these".
Article |
Thread
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Coming events
UK Clinical Research Collaboration workshops
"...a series of online workshops on clinical research in ME/CFS. The workshops are connected with the Research Working Group set up by the UK Clinical Research Collaboration." Two workshops this week, and two more in July.
Clinical Trial Design in People with ME/CFS, 4th June 2024
Details |
Thread |
MEA article
Clinical Trial Platform Studies and Lessons for ME/CFS research, 6th June
Details |
Thread
Bateman Horne Center - Free Online Support Groups
Friday, June 7, 1:00 - 2:00 PM Mountain Time
Topic:
What does it mean to be “chronically ill?”
Friday, June 21, 1:00 - 2:00 PM Mountain Time
Topic:
How labels construct narratives
Advance registration required, see thread for times in your time zone.
Event Calendar |
Thread
Invest in ME Research International ME Conference, 28 June 2024
Wellcome Genome Campus, UK
Advancing Understanding of ME: Bridging Research and Clinical Treatment
Conference speakers include Avindra Nath, Rob Wüst, Simon Carding, Maureen Hanson, David Systrom, Ron Davis.
Research colloquium June 26-27: The infectious aetiology of ME.
Conference |
Colloquium |
Thread
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Research
ME/CFS research
UC Davis
Thesis abstract: Develop Microfluidic-based Diagnostic Approaches for ME/CFS, 2024, Guo
The researchers developed 'a microfluidic platform to measure capillary velocity of red blood cells (RBCs) at controlled oxygen tensions (PO2)'. They were able to distinguish ME/CFS from controls and suggested possible drug treatments. The thesis is not accessible for 2 years. Guo gave a talk in February, available on video.
Thesis |
Thread |
Video |
Thread
Preprints.org
Development of Epidemiological Research Guidelines for ME/CFS in Canada - Chuluunbaatar-Lussier et al.
This preprint publication describes research recommendations made by the Interdisciplinary Canadian Collaborative ME Research Network (ICanCME). For the diagnosis of ME/CFS it recommends using the IOM, CCC or NICE-criteria.
Article |
Thread
Journal of the Royal College of Physicians of Edinburgh
Medical students highlight the importance of medical education, kindness, compassion and belief when learning about patients with myalgic encephalomyelitis/chronic fatigue syndrome - Nina Muirhead.
In this editorial Muirhead gives a brief introduction to ME/CFS. Earlier this year, Scottish medical students were invited to take part in an essay competition, 500 words on the topic of ‘What is your most important learning point about ME/CFS?’ The prize was funded by the Scottish Government’s education project; 'Learn About ME'.
Article |
Thread
Journal of the Royal College of Physicians of Edinburgh
Learning points about myalgic encephalitis/ chronic fatigue syndrome: Bridging the gap between research, clinical practice and awareness -Bhanu Wahi-Singh
In this essay, the author talks about how his aunt suffers from ME/CFS and what he learned about the condition: "My most important learning point about ME/CFS, however, is how it really exemplifies that the best doctors are the ones that listen and form a relationship with patients."
Article |
Thread
Medrxiv
Complex Chronic Diseases Program: Program Description & Health Outcomes Assessment from a Clinical Data Registry - Meagher et al.
This article describes results from the Complex Chronic Diseases Program (CCDP) in Canada. Eighty procent of the 568 patient sample analyzed had a diagnosis of ME/CFS. They reported no improvement in pain, sleep or fatigue.
Article |
Thread
Long Covid research
Journal of Autoimmunity
Diverse immunological dysregulation, chronic inflammation, and impaired erythropoiesis in long COVID patients with chronic fatigue syndrome — Saito et al.
"An unexpected and novel finding was the grouping of ARTN [artemin] with TIGIT, TIM-3, CD160, PD-1, and 2B4 co-expressing CD8+ T cells in LC." "the association between plasma ARTN levels and cognitive impairments score in LC patients suggests a potential role for ARTN in LC pathogenesis"
Article |
Thread
Preprint: BioRxiv
Transfer of IgG from Long COVID patients induces symptomology in mice — Hung-Jen Chen et al.
"Remarkably, IgG transfer from the two subgroups, which are characterized by higher plasma levels of neuronal proteins and leukocyte activation markers, induced pronounced and persistent sensory hypersensitivity with distinct kinetics. Conversely, IgG transfer from the third subgroup, which are characterized by enriched skeletal and cardiac muscle proteome profiles, reduced locomotor activity in mice without affecting their motor coordination."
Article |
Thread
BMC Pulmonary Medicine
Persisting exercise ventilatory inefficiency in subjects recovering from COVID-19. Longitudinal data analysis 34 months post-discharge — Dorelli et al.
"Our study reports a close association between exercise hyperventilation and [Exercise ventilatory inefficiency] as a permanent and distinctive sign of a proportion of asymptomatic survivors after 34 months. Even if this phenomenon has been documented, the pathophysiological mechanism is still unclear."
Article |
Thread
Infection
The roles of the kynurenine pathway in COVID-19 neuropathogenesis — Dehhaghi et al.
Review article. "The sustained activation of the KP [kynurenine pathway], associated with cognitive impairments and chronic fatigue, underscores the potential of KP as a therapeutic target and as a possible biomarker for long COVID in future studies."
Article |
Thread
Journal of Neural Transmission
Psychological outcomes of COVID-19 survivors at sixth months after diagnose: the role of kynurenine pathway metabolites in depression, anxiety, and stress — Kucukkarapinar et al.
"we determined that the metabolites of the kynurenine pathway, specifically KYN, TRP, 3-HK, and the KYN/TRP ratio, have a strong relationship with the symptoms of depression and anxiety that emerge in post-COVID-19 individuals."
Article |
Thread
Lancet: eClinicalMedicine
Association between acquiring SARS-CoV-2 during pregnancy and post-acute sequelae of SARS-CoV-2 infection: RECOVER electronic health record cohort analysis — Ann M. Bruno et al.
"SARS-CoV-2 infection acquired during pregnancy was associated with lower risk of development of PASC at 30–180 days after incident SARS-CoV-2 infection in this nationally representative sample."
Article |
Thread
Nature Medicine
Three-year outcomes of post-acute sequelae of COVID-19 — Cai et al.
"Risks for post-acute sequelae declined over the years, but substantial residual risk remained in the third year, leading to 252.8 sequelae per 1,000 persons and 90.0 DALYs per 1,000 persons."
Article |
Thread
Journal of Integrative Neuroscience
Longitudinal Exploration of Cortical Brain Activity in Cognitive Fog: An EEG Study in Patients with and without Anosmia — Antonio Gangemi et al.
"The results revealed significant differences in the neurophysiological parameters of P300 and beta band rhythms in subjects affected by cognitive fog, and these alterations persist even 8 months after recovery from Covid-19"
Article |
Thread
Journal of Primary Care & Community Health
Longitudinal Progression of Patients with Long COVID Treated in a Post-COVID Clinic: A Cross-Sectional Survey — Ryan T. Hurt et al.
"Self-reported symptoms were all significantly improved (P < .001) from the initial visit to the LCC (baseline) to the time of the follow-up survey. However, only 4.5% (24/536) of patients rated all symptoms low (1-2) at the time of the survey, indicating low levels of full recovery in our cohort."
Article |
Thread
Journal of Pediatric Nursing
Navigating an unfamiliar world – Parents' experiences of having a child with post COVID-19 — Angelhoff et al.
"The parents try to navigate in an unfamiliar world, searching for someone to believe in them and their child, and describe the relief when their child's condition is confirmed. The findings also demonstrate the depth of suffering, not only for the child but also for the whole family."
Article |
Thread
British Journal of General Practice
People from ethnic minorities seeking help for Long Covid: a qualitative study. — Nina Smyth et al.
"Experiences of stigma and discrimination resulted in negative healthcare experiences and mistrust in healthcare, creating barriers to help-seeking. Empathy, validation of experiences, and fairness in recognition and support of healthcare needs are required to restore trust in healthcare."
Article |
Thread
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