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
- As part of its ME/CFS Research Roadmap project, the US National Institutes of Health (NIH), is delivering a series of webinars on different ME/CFS research topics, to identify both progress and areas for further research. Topics include nervous system, immune system, metabolism, genomics and genetic susceptibilities, chronic infections, and circulation. The webinars are open to the public and free to attend. Registration for upcoming webinars and recordings of past webinars are available on the ME/CFS Research Roadmap Working Group’s website.
https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-council/nandsc-mecfs-research-roadmap-working-group - The US NIH has announced a series of clinical trials for potential long COVID treatments through its RECOVER Initiative, including RECOVER-VITAL (focusses on viral persistence and will test antiviral Paxlovid), RECOVER-NEURO (focusses on cognitive dysfunction and will test a web-based brain training program), RECOVER-SLEEP (focusses on changes in sleep patterns and will test two wakefulness-promoting drugs and other interventions), RECOVER-AUTONOMIC (focusses on postural orthostatic intolerance syndrome (POTS) and evaluate an immune treatment). A final arm is focussed on exercise intolerance and fatigue and is in development with input from the patient community and researchers. https://www.nih.gov/news-events/news-releases/nih-launches-long-covid-clinical-trials-through-recover-initiative-opening-enrollment
- Germany’s Federal Ministry of Education and Research has announced guidelines for new ME/CFS research funding of up to €15m (AUD25m). The “guideline for the promotion of interdisciplinary collaborations to research the pathomechanisms of ME/CFS” encourages partnerships between institutions, emphasises the need for patient involvement in research, and seeks to advance the diagnosis and treatment of ME/CFS. https://www.meresearch.org.uk/german-guideline-promotes-interdisciplinary-me-cfs-research/
- US Yale School of Medicine (YSM) launched its new Center for Infection & Immunity (CII) which will focus on studying post-infection diseases such as long COVID, ME/CFS and post-treatment Lyme disease. The centre will be lead by Yale Professor of Immunobiology, Akiko Iwasaki. https://medicine.yale.edu/news-article/post-acute-infection-syndromes-will-be-the-focus-of-new-ysm-center/
- US PolyBio group held a symposium in October to provide an update on their research projects. Speakers included Amy Proal, Michael VanElzakker, Akiko Iwasaki, David Putrino and Resia Pretorius. The session was recorded and is available to watch:
https://youtu.be/278vwGkFXRM?feature=shared - A new ME/CFS biobank is being established in Austria. The biobank will be led by Professor Untersmayr-Elsenhuber and its focus will be to participate in large international collaborative projects. https://www.weandmecfs.org/research/me-cfs-biobank-austria-establishment-of-the-first-austrian-biobank-for-me-cfs-patient-samples
Clinical Care
- UK Physios4ME launched a new book, “A Physiotherapist’s Guide to Understanding and Managing ME/CFS”. The book includes an in depth explanation of ME/CFS and varying degrees of severity, and how to manage ME/CFS in adults and children.
https://www.booktopia.com.au/a-physiotherapist-s-guide-to-understanding-and-managing-me-cfs-nicola-clague-baker/book/9781839971433.html - A new concise guide to diagnosis and treatment of ME/CFS has been published in the prestigious journal Mayo Clinic Proceedings. The article, written specifically for clinicians, is a joint project between #MEAction and the Mayo Clinic, and is one of the outcomes of the grant the two groups received to develop tools to assist in the diagnosis and management of ME/CFS.
https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext
Advocacy
- The UK government released “My full reality: the interim delivery plan on ME/CFS” in early August. The plan arose out of a government pledge to “improve experiences and outcomes” of people living with ME/CFS, acknowledging that government “must trust and listen to those with lived experience of ME/CFS.” The government undertook a series of roundtable discussions with the ME/CFS community, out of which the plan was developed. The plan addresses three key themes – research, attitudes and education of professionals, and living with ME/CFS – and was open for consultation until early October.
https://www.gov.uk/government/consultations/improving-the-experiences-of-people-with-mecfs-interim-delivery-plan/my-full-reality-the-interim-delivery-plan-on-mecfs - In Germany a walk of mourning was held on Severe ME Day, August 8. Participants dressed in black, wore sunglasses to signify the sensory sensitivities of severe ME/CFS, and walked in memory of those who had lost their lives to ME/CFS and those who were too unwell to walk themselves. The walk ended with a lie in. The walk attracted media attention, including an evening news report in Germany.
- The New Zealand government Health Committee has considered the petition by NZ’s Associated NZ ME Society (ANZMES) to have ME/CFS classified as a disability. In its petition, ANZMES argued that, while ME/CFS meets the definition of a disability, in NZ it is instead classified as a chronic illness. ANZMES argued that classification as a disability would enable access to greater funding and support. In its response to the petition, the Committee acknowledged that ME/CFS does not meet the current eligibility requirements of Whaikaha, NZ’s Ministry of Disabled People, and recommended that Whaikaha amend its eligibility criteria to include ME/CFS. https://anzmes.org.nz/press-release-anzmes-welcomes-hsc-recommendations-for-improved-access-to-disability-services-for-people-with-me-cfs/
- The Science for ME forum wrote an open letter to Cochrane about the progress on the development of the new exercise and ME/CFS Cochrane review. The new review was expected to be published in 2022, but there have been no progress updates for two years. The open letter was later developed into a petition, which has more than 9000 signatures. The open letter and petition called on Cochrane to withdraw the outdated 2019 review and provide updates on the development of the new review. Cochrane has responded refusing to withdraw the 2019 review, but promising updates on the new review.
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review - The UK ME Association lodged a complaint with the UK Advertising Standards Authority (ASA) about advertising claiming that the Chrysalis Effect could cure ME/CFS. The Chrysalis Effect claims to offer a “supported recovery programme” for ME/CFS. The ASA upheld the complaint, indicating the clinic should “ensure they did not make claims that their programme could aid in ME/CFS recovery, or full clinical recovery from ME/CFS, unless they held sufficient evidence to support the claims”. https://meassociation.org.uk/2023/09/advertising-standards-chrysalis-effect-cannot-claim-me-cfs-recovery/
