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 NIH’s ME/CFS Working Group will deliver its ME/CFS Research Roadmap to NIH leadership on 15 May. As part of the process, the Working Group has been running webinars on a range of research topics, including the nervous system, immune system, genomics and physiology. Recordings and transcripts from each webinar are available on the Working Group’s website. The Working Group, co-chaired by Lucinda Bateman and Maureen Hanson, is now calling for input from the community to help inform the research priorities.
Webinars: https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-council/nandsc-mecfs-research-roadmap-working-group
Public consultation: https://ninds.ideascalegov.com/c/campaigns/1286/about - The US government has announced an intention to establish a Federal Advisory Committee on long COVID to sit within the Department of Health and Human Services. The Committee will “bring perspectives from outside the Government to help inform action of the Executive Branch on long COVID and associated conditions, with a focus on health equity.”
https://www.federalregister.gov/documents/2023/11/17/2023-24586/announcement-of-intent-to-establish-federal-advisory-committee-on-long-covid - Data published by the US Centers for Disease Control and Prevention’s National Center for Health Statistics suggest that approximately 1.3% of people have ME/CFS, and that this figure may be higher due to those undiagnosed. The rates of ME/CFS were higher among women, white non-Hispanics, those with lower socio-economic status and those living in rural areas.
https://www.cdc.gov/nchs/products/databriefs/db488.htm - The Netherlands ME/CFS Cohort and Biobank consortium (NMCB) launched in January. As a coalition of Dutch research institutes, medical centres and patient organisations dedicated to the biomedical study of ME/CFS, the group hopes to build an international hub for ME/CFS research. The NMCB is undertaking six projects: autoimmunity, immune signatures, the link between autoimmunity and changes in metabolism and immune response, combining knowledge of post-infectious syndromes and ME/CFS, brain changes, and muscle changes in ME/CFS.
https://nmcb.eu - Computional biology company Precision Life has received £662,000 (AUD1.28m) for its LOCOME (LOng COvid and Myalgic Encephalomyelitis diagnostics and stratification) project. The company says it will “use its precision medicine and mechanistic patient stratification approach to identify the factors driving disease in different patient subgroups through combinatorial analysis of the DecodeME data.”
https://precisionlife.com/news-and-events/locome-project-to-improve-diagnosis-and-treatment-of-me-cfs-and-long-covid - The German ME/CFS Research Foundation and Lost Voices Foundation will co-fund a new ME/CFS biomarker research project at the Charité Berlin Hospital. The project will explore the potential diagnostic usefulness of cell shape, deformability and microclots.
https://mecfs-research.org/en/researchfunding-charite/
Clinical Care
- The European Medicines Agency held a workshop in November on generating clinical evidence for treatment and prevention options in long COVID. https://www.ema.europa.eu/en/events/workshop-generating-clinical-evidence-treatment-and-prevention-options-long-covid-post-acute-sequelae-condition-pasc
- US Bateman Horne Center held a webinar in December, called “long COVID and Post-Viral Syndromes: When Exercise Doesn’t Help”. The webinar was presented by Amy Mooney (Occupational Therapist) and Clayton Powers (Physical Therapist).
https://youtu.be/9vfOZzILsAU?si=upqvO59z39ZqNSsH
Advocacy
- Cochrane review of Exercise Therapy for CFS update: Hilda Bastian, who leads the Independent Advisory Group involved in the update of the review, has provided updates and details on both the reasons for the delays and a revised timeline for the project. The process to update the review was undertaken in 2019, but there had been no updates on the progress of this project since 2021. This led to community action, led by the Science for ME forum, which sent an open letter and launched a petition calling for a progress report.
https://community.cochrane.org/organizational-info/people/central-executive-team/evidence-production-methods-directorate/stakeholder-engagement-high-profile-reviews-pilot-4 - The long COVID Moon Shot is calling on the US Congress to invest USD1bn in annual funding for long COVID research. They say, “Our campaign’s primary goal is to achieve a minimum of $1B in annual funding for research & therapeutic clinical trials. Consistent research funding means a much better chance of getting us the treatment we need.” A recent campaign involved sending politicians “unhappy cards” at Christmas, highlighting the toll long COVID had on people’s lives.
https://longcovidmoonshot.com - #MEAction announced that the focus for #MillionsMissing in 2024 will be medical education and treatment. The campaign, #TeachMeTreatMe, aims to partner with hospitals and medical schools to create systemic change in medical care for people with ME/CFS and long COVID. Unlike previous #MillionsMissing, this campaign will not take the form of protests, but collaborative partnerships.
https://millionsmissing.meaction.net/mm24/ - The Patient Led Research Collaborative sent an open letter to President Biden, urgently calling on him to address the long COVID crisis by establishing an office within the National Institutes of Health with a budget of billions to coordinate and fund research into long COVID and other post-infection conditions, and to direct other agencies to include responses to long COVID in budgets.
https://patientresearchcovid19.com/urgent-call-to-address-long-covid-crisis-in-fy25-budget-letter-to-president-biden/ - US Senator Bernie Sanders has written an article on the hidden crisis of long COVID and how the US health system is failing people living with the condition. He urges greater investment in long COVID research and for treatments, when found, to be made affordable.
https://www.usatoday.com/story/opinion/voices/2024/01/26/long-covid-paxlovid-costs-plaguing-american-healthcare/72337750007/ - German film production company inselfilm has produced a new documentary, Chronically Ignored, about ME/CFS and what the producers call “a dark chapter in the history of medicine”.
https://www.inselfilm.de/portfolio-item/chronically-ignored/
