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 US National Institute of Health’s (NIH) Community Advisory Committee for ME/CFS has developed a quick reference guide for researchers designing clinical trials with ME/CFS patients. The guide includes recommendations on diagnostic criteria, measurement tools, general guiding principles to accommodate patients’ limitations and the importance of including severely ill patients in samples.
UK ME/CFS Priority Setting Partnership released its top 10 research priorities for ME/CFS. The top 3 priorities are:
- What is the biological mechanism that causes post-exertional malaise in people with ME/CFS?
- Which existing drugs used to treat other conditions might be useful for treating ME/CFS?
- How can an accurate and reliable diagnostic test be developed for ME/CFS?
The full list of priorities and the Partnership’s report can be found here
Invest in ME’s 11th annual Biomedical Research into ME Research Colloquium, titled “ME and Long Covid: Emerging insights in mechanisms and complexity of post-viral fatigue”, took place in May as a virtual event. Speakers included Sonya Marshall-Gradisnik, Michael VanElzakker, Leonard Jason, Avindra Nath and Ron Davis.
The Bundestag (German Parliament) committed €5m to research into ME/CFS and long COVID, with an emphasis on clinical trials and identification of diagnostic biomarkers. Read in German here
The US Army Combat Readiness – Medical Research Program funds medical research into topics which affect US Army members deployability. A USD10m research grant has been announced, and ME/CFS is one of the focus areas. Read more here
The Patient-Led Research Fund is a USD$5 million fund which will provide grants to long COVID biomedical research projects, awarded by a panel of patient-researchers with expertise in post-viral illnesses and lived experience of long COVID and/or ME/CFS. Biomedical research projects are eligible, including diagnostic devices, test development, and clinical trials. Requests for proposals opened July 25 read more here
Clinical care
NIH’s RECOVER Initiative (REsearching COVID to Enhance Recovery) held a seminar on April 12 titled “Commonalities with Other Disorders and Post-viral Syndromes, Focus on ME/CFS”, featuring David Systrom, Nancy Klimas and Benjamin Natelson. The seminar was recorded and is available here
The webinar is part of the RECOVER Initiative’s regular series of on long COVID. Past webinars can be found here
Advocacy
ME/CFS Awareness Day took place on May 12. Globally, the theme was #LearnFromME, and included a range of activities, including virtual #MillionsMissing events, Blue Sunday Tea Party, and #LightUpTheNight.
Solve ME/CFS Initiative conducted its sixth annual advocacy event of congressional meetings. Over the six years, they have organised more than 900 meetings with politicians. This year the focus was on encouraging members of Congress and the Senate to support two proposed funding bills. Read more here
The UK Secretary of Health and Social Care, Sajid Javid, released a statement in support of ME/CFS in May. The statement welcomed the publication of the top 10 ME/CFS research priorities and indicated the Secretary’s intention to develop a cross-department plan for ME/CFS across England. The statement also committed that the Secretary would lead a round table discussion, including the Chief Scientific Adviser, on how to support high quality research into ME/CFS. The roundtable discussion took place in June, and was described as a constructive meeting by advocates who attended, and resulted in at least one working group being established (Education and Attitudes Working Group). Sadly, Sajid Javid has since resigned as Secretary of Health. The full statement is available here
European ME Alliance (EMEA) held a roundtable discussion for European stakeholders titled “ME/CFS and post COVID in the Balkans” in May. The purpose of the meeting was to discuss ways to raise awareness and tackle misinformation about the conditions in Slovenia, Croatia and Serbia, and the Balkan countries in general. The webinar included clinicians, researchers, policy makers and patient representatives. Read more here
