Our International Roundup provides a brief snapshot of some of the ME/CFS research funding, clinical care and advocacy actions around the world in the last few months.
Research
- US pharmaceutical company BioVie has been granted up to USD13m by the US Department of Defence for a clinical trial into Bezisterim for treating neurological symptoms associated with long COVID. Bezisterim is an insulin sensitiser with anti-inflammatory properties. The trial will start in 2025 and is expected to include 200 participants.
https://www.proactiveinvestors.com/companies/news/1046368/biovie-secures-13-1m-funding-from-us-department-of-defense-for-long-covid-treatment-1046368.html - The Unite to Fight 2024 crowd-funded ME/CFS and Long COVID conference took place on 15-16 May. The conference was free and held entirely online. The conference included speakers from around the world, including Australian Senator Jordon Steele-John. All sessions were recorded and are available on YouTube: https://youtube.com/@unitetofight2024
- The UK DecodeME study, a large genome-wide association study, provided an update on the progress of the study. To date, they have collected DNA samples from 18,000 participants, and DecodeME data is being provided to other researchers to facilitate even more studies.
https://youtu.be/UnZ7L905y6M?si=fM3MumfZnshK3QjG - The US National Institutes of Health’s (NIH’s) has presented its ME/CFS Research Roadmap, which provides a guide for ME/CFS research, to facilitate scientific understanding of the condition, improve diagnostic strategies and develop personalised treatments. The roadmap was developed following a series of webinars and public consultation and focusses on eight topic areas: chronic infection, immune system, central and peripheral nervous system, cardiovascular circulation, metabolism, physiology, less studied pathologies (such as hypermobility and connective tissue disorders, spinal compression syndromes, and neuroendocrine disorders), and genomics/genetic susceptibility.
https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-council/nandsc-mecfs-research-roadmap-working-group - The US NIH’s Recover Initiative will undertake four clinical trials into sleep disturbance, exercise intolerance and post-exertional malaise in long COVID. The trial interventions include two sleep medications, melatonin and light therapy for sleep disturbances; cardiopulmonary rehabilitation for exercise intolerance; and structured pacing for post-exertional malaise.
https://www.nih.gov/news-events/news-releases/nih-open-long-covid-clinical-trials-study-sleep-disturbances-exercise-intolerance-post-exertional-malaise - The UK Clinical Research Collaboration held a series of webinars to raise awareness of ME/CFS among researchers. The webinars addressed clinical trial design, drug repurposing, and research in underserved groups (such as severe ME/CFS), and were intended to increase collaboration and attract new researchers to the field.
https://meassociation.org.uk/2024/05/research-working-together-to-find-answers-to-me-cfs/ - The Dutch government has announced a second round of funding for biomedical research into ME/CFS. The first round resulted in 2 research consortia receiving funding for a total of 10 subprojects. This funding round, for a total of €2.5m emphasises both the biomedical nature of the condition and collaborative projects, with applicants being expected to partner with one of the two consortia funded in the first round.
https://www.zonmw.nl/nl/nieuws/oproeptekst-tweede-subsidieronde-biomedisch-onderzoek-mecvs - The US National Academies of Sciences, Engineering and Medicine (NASEM) has published a report into the long term health effects of COVID-19. NASEM convened a committee to provide an overview on the current status of the diagnosis, treatment and prognosis of long COVID. The report reflects the committee’s conclusions.
https://nap.nationalacademies.org/catalog/27756/long-term-health-effects-of-covid-19-disability-and-function - The Organisation for Economic Co-operation and Development (OECD) has published a report into the impact of long COVID in OECD countries. The report examines the economic burden of long COVID, the impact of the condition on the health of individuals and economic productivity and the workforce, as well as actions being taken to address the condition in each country.
https://www.oecd.org/content/dam/oecd/en/publications/reports/2024/06/the-impacts-of-long-covid-across-oecd-countries_f662b21c/8bd08383-en.pdf - The 16th Invest in ME research conference took place in the UK on 28 June. Speakers included Avindra Nath, Simon Carding, Vicky Whittemore, Maureen Hanson, Rob Wüst, Nancy Klimas and Ron Davis.
https://www.investinme.org/IIMEC16.shtml
Clinical Care
- The US Bateman Horne Center has released a new video on post-exertional malaise. This is the second in their ‘The Basics for Patients’ series of videos; the first was on orthostatic intolerance. https://youtu.be/UkS6L3Klc00?si=CS8iveqvmM5yL1FA
- The US Bateman Horne Center has released a new video on staying within your energy envelope by modifying tasks. Hosted by occupational therapist Amy Mooney, the video runs for 50 minutes.
https://youtu.be/RVJG6t1tjbE?si=C9wszEee_klXr5R5
Advocacy
- A parliamentary debate on ME/CFS was held in the UK for World ME Day. The need to fully implement the updated NICE clinical guidelines, inappropriate hospital treatment, current ME/CFS research, and the experiences of people living with the condition were discussed.
https://www.actionforme.org.uk/news/westminster-hall-debate-an-update-and-statement/ - Four hundred people participated in a protest for better care for people with ME/CFS at the Federal Square in Bern, Switzerland, as part of ME/CFS Awareness Day.
https://www.rts.ch/info/suisse/2024/article/manifestation-a-berne-pour-une-meilleure-prise-en-charge-du-syndrome-de-fatigue-chronique-28499381.html - #MEAction ran a #TeachMETreatME campaign for ME/CFS Awareness Day, with clinical educational events for GPs and medical students in the US and UK.
https://www.meaction.net/2024/05/17/teachmetreatme-celebrating-an-impactful-campaign/ - The Austrian ME/CFS society, WE&ME Foundation, organised billboards in Vienna to raise awareness of ME/CFS during ME/CFS Awareness month.
https://x.com/weandmecfs/status/1793882506477080955?s=61&t=b9Vqd3KzHLWAa–KvLht3w - The Coroner’s Inquest into the death of severe ME/CFS patient Maeve Boothby-O’Neill took place in the UK. Maeve tragically died in 2021 following hospitalisation for tube-feeding. The inquest ran for two weeks and received considerable media attention in the UK.
Warning: this content may be distressing.
https://www.meresearch.org.uk/how-coroners-inquiry-into-death-of-maeve-boothby-oneill-unfolds-in-quotes-with-media-links/
