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
- The 1st International Conference on Clinical and Scientific Advances in ME/CFS and long COVID took place in Portugal on 3-4 April 2024. Speakers included Dr Susan Levine, Dr David Systrom, Dr Elizabeth Unger, Dr Lucinda Bateman, Dr Luis Nacul and Professor Jonas Bergquist. Recordings of the conference are available: https://www.youtube.com/@ConferenciaEMSFCCovidLonga/streams
- The European ME Alliance (EMEA) released the results of its Pan-European ME Patient Survey. The survey had more than 11,000 respondents with ME/CFS from across Europe.
Key results:
– ME /CFS is profoundly disabling
– Myths persist that ME/CFS “burns out” and people recover over time
– There are huge unmet healthcare needs
– Pacing was by far the most helpful strategy
– Activity-based therapies do more harm than good
– Early diagnosis and education about pacing are key to preventing disease progression
https://europeanmealliance.org/emea-pan-european-survey-pr-uk.shtml - The US National Institutes of Health (NIH) has made the de-identified data of 14,000 people with long COVID available to authorised researchers through Biodata Catalyst (BDC), a cloud-based system developed by the NIH. It is hoped that access to this data will help accelerate long COVID research.
https://www.nih.gov/news-events/news-releases/nih-recover-makes-long-covid-data-easier-access
Clinical Care
- Physios for ME released a one page handout for clinicians to help them understand how to work with people with ME/CFS. The handout explains what post-exertional malaise is and offers suggestions for how to adapt clinical practise to accommodate people with ME/CFS.
https://www.physiosforme.com/onesheetprintout - UK’s Royal College of Anaesthetists, in conjunction with the ME Association, has produced a leaflet for people with ME/CFS who are preparing to have anaesthesia.
https://www.rcoa.ac.uk/patients/patient-information-resources/factsheets-medical-conditions-relating-anaesthesia/me-cfs-anaesthesia - The Dutch government voted to allocate €27m for long COVID clinics:
https://nos.nl/artikel/2508975-longcovidklinieken-kunnen-toch-van-start-kamer-maakt-miljoenen-vrij
Advocacy
- Solve ME/CFS Initiative’s annual Advocacy Week took place on 15-19 April. Solve offered training sessions to help patients prepare for the week, and to learn how to tell their story and lobby effectively. Activities were planned across the week that ranged from low to high energy, to allow for as many people with ME/CFS as possible to participate.
https://solvecfs.org/advocacy/advocacy-week/advocacyweek2024/ - World ME Alliance’s World ME Day theme is “Become a #GlobalVoiceForME”. They encourage people to create their own poster and post on social media, and to “never underestimate the power of a share”.
https://worldmealliance.org/worldmeday/ - US Senator Bernie Sanders published a long COVID Moonshot legislative proposal, which would see $1bn invested in long COVID research per year for ten years. The draft legislation was open for public consultation until April 23. Senator Sanders has met with Director of NIH to discuss the need for more research into long COVID.
https://www.sanders.senate.gov/press-releases/news-chairman-bernie-sanders-releases-long-covid-moonshot-legislative-proposal/
