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 Children’s National Hospital and National Institute of Allergy and Infectious Diseases co-hosted a symposium in September in Washington DC. “A New Paradigm: Infection-Associated Chronic Illnesses Affecting Children” featured speakers such as Avindra Nath and David Putrino. The recording is available on their website:
https://research.childrensnational.org/news-and-events/cnh-niaid-symposium-2024 - US Stanford ME/CFS Collaborative Research Center held a closed working group meeting with researchers from around the world. Chris Armstrong, Katherine Huang and Neil McGregor from University of Melbourne presented. Jarred Younger provided a video update on the meeting:
https://youtu.be/QzM38jppvZ4?si=yXdEn1alfyawjf36 - The Swedish ME/CFS Association (Riksförbundet för ME-patienter (RME) hosted a conference in October. “Circulation in ME/CFS and POSTCOVID” featured presenters such as Resia Pretorius, David Systrom, Suzanne Vernon and Jonas Bergquist. Recordings are available to watch:
https://youtube.com/playlist?list=PLrkHVAO9gPB_YaTctjXLBPcgsCDGLcu0S&si=Zbw9qFbJnrR6aeGU
Clinical Care
- Medscape has published a new education module on ME/CFS, called “A Fresh Look at Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Diagnosis and Management of a Multisystem Illness”.
https://www.medscape.org/viewarticle/964157 - ANZMES (Associated New Zealand ME Society) has released a brief guide for healthcare professionals to manage hospital stays for people with severe ME/CFS or long COVID. The guide covers recommendations for sensory adjustments, medication and nutrition, activity and rest, communication and cognitive support, and care and support.
https://anzmes.org.nz/press-release-anzmes-releases-essential-resource-for-healthcare-professionals-to-manage-hospital-stays-of-severe-me-cfs-and-long-covid-patients/ - UK ME Association is funding a study to develop a clinical assessment toolkit for ME/CFS. The toolkit is being developed by Professor Sarah Tyson (who lives with ME/CFS) from the University of Manchester, in collaboration with people with ME/CFS and clinicians.
https://meassociation.org.uk/2024/09/research-the-index-of-me-symptoms-times-for-me-cfs/ - #MEAction and the long COVID Patient-led Research Collaborative have developed four videos focussing on post-exertional malaise. Each video includes an expert speaker, including Todd Davenport (Workwell Foundation) talking about pacing and PEM, and Katherine Rowe (Royal Children’s Hospital) talking about PEM and young people. https://youtube.com/playlist?list=PLhO4nWkiP5QT7UwpByIztcJAjbdSU7SJD&si=xdV7_5aSOb_rNzTY
Advocacy
- US Senator Bernie Sanders introduced the Long COVID Research Moonshot Act to the US Senate. The Bill, if passed, would inject USD1bn per year for 10 years into long COVID research.
https://www.sanders.senate.gov/press-releases/news-sanders-introduces-historic-moonshot-legislation-to-address-the-long-covid-crisis/ - US Congresswoman Ilhan Omar introduced a companion bill to Senator Sander’s Long COVID Research Moonshot Act to the US Congress. Congresswoman Omar’s bill would allocate USD10bn to researching long COVID, as well as related conditions like ME/CFS and POTS.
https://omar.house.gov/media/in-the-news/rep-ilhan-omar-introduce-major-long-covid-bill - World ME Alliance ran a Safer Hospital Care for Severe ME/CFS campaign for Severe ME Day on August 8. The campaign was driven by the UK Inquest into the death of severe ME/CFS patient, Maeve Boothby-O’Neill. The campaign called for hospitalised ME/CFS patients to be listened to and believed, rest to be safeguarded as a vital management strategy, reasonable adjustments made to ensure a low-stimulus environment, advocates allowed to stay with patients, and for hospital staff to receive education about ME/CFS.
https://worldmealliance.org/2024/08/safer-hospital-care-for-severe-me-severemeday-2024/ - A group of leading ME/CFS researchers sent an open letter to the US NIH Director, Dr Monica Bertagnolli, asking her to include ME/CFS in the NIH’s long COVID RECOVER initiative, to ensure that similarities and differences between the two conditions are examined and to provide insight into clinical management. The letter was signed by Ian Lipkin, Derya Unutmaz, Anthony Komaroff, Susan Levine, Nancy Klimas, Jose Montoya, Lucinda Bateman, Daniel Peterson and Maureen Hanson.
https://x.com/DeryaTR_/status/1835773643764256957 - The UK ME Association is conducting a 6 month campaign to raise awareness of ME/CFS with GPs. They will send posters and leaflets to 3000 GP clinics around the UK, and will also be running ads on in-clinic screens to encourage people to speak to their doctor if they have symptoms commonly associated with ME/CFS.
https://meassociation.org.uk/2024/10/recognise-me-raising-awareness-in-gp-practices/ - The UK #ThereForME campaign sent an open letter to the UK government Health and Social Care Committee calling for the Committee to establish an inquiry into the historical neglect of people with ME/CFS and, more recently, long COVID, and the impact on health inequalities, economic growth and pandemic preparedness. The letter was signed by 28 ME/CFS and long COVID organisations across the UK.
https://www.thereforme.uk/p/thereforme-letter-to-the-health-and
