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 German Charité Fatigue Center’s 2nd International Conference was held on 11-12 May. The conference focus was state of the art diagnostics as well as recent insights into the pathomechanisms of ME/CFS, from neurological, immunological, vascular and virological perspectives. Speakers included Carmen Scheibenbogen, Peter Rowe, Anthony Komaroff, Leonard Jason and Bhupesh Prusty. The conference was recorded and presentations can be viewed on the conference website: https://mecfs-research.org/en/conference2023/
Polybio, led by microbiologist Amy Proal and neuroimmunologist Michael van Elzakker, announced the launch of the long COVID Research Consortium. The group received USD15m in funding to establish a long COVID research program. The program will focus on examining possible persistence of the SARS-COV-2 virus in various body cells and tissues.
The Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis (ICanCME) Research Network announced its 2023/2024 New Frontier ME Discovery Grant program. This program will fund 8 Canadian research projects, with a maximum of CAD25,000 each. Each project must include at least one early career researcher and a minimum of 3 Canadian institutions, to foster collaboration.
The US National Institutes of Health (NIH) has established a new working group to develop an ME/CFS Research Roadmap, which will identify research priorities to help move the field towards translational research and clinical trials. The working group consists of ME/CFS researchers and clinicians, leaders of ME/CFS organisations, patients and carers. The roadmap will be delivered in February 2024. https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-council/nandsc-mecfs-research-roadmap-working-group
“Toward a Common Research Agenda in Infection – Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors”, was a two day workshop held by the US National Academies Science, Engineering and Medicine in late June. Recognising that post-infection conditions have been under-researched but share commonalities, this workshop aimed to explore common factors in these conditions and possible paths forward in research. Representatives from the ME/CFS, long COVID, post-treatment Lyme disease and multiple sclerosis research and patient communities attended. https://www.nationalacademies.org/event/06-29-2023/toward-a-common-research-agenda-in-infection-associated-chronic-illnesses-a-workshop-to-examine-common-overlapping-clinical-and-biological-factors
The Associated New Zealand ME Society (ANZMES) has announced a new annual Grants and Scholarships Program for ME/CFS researchers and postgraduate students. There will be two NZD25,000 grants and four NZD5,000 scholarships available each year. Applications close July 31. https://anzmes.org.nz/research-funding-programme/
Clinical care
- The Icelandic government has announced the establishment of a specialist ME/CFS clinic at a hospital in Akureyri. The clinic will allow GPs to refer patients for accurate diagnosis and treatment recommendations. Akureyri is the site of a significant outbreak of ME/CFS in the 1940s, which led to the coining of the names “Icelandic disease” and “Akureyri disease”.
- The US Bateman Horne Center has produced a new fact sheet, called “Push/Crash Cycle and Triggers in ME/CFS and long COVID”. https://batemanhornecenter.org/wp-content/uploads/2023/05/Push-Crash-Cycle-05_2023.pdf
- The Associated New Zealand ME Society (ANZMES) has produced two new 1-page resources to help guide the diagnosis and management of ME/CFS and long COVID. https://anzmes.org.nz/anzmes-release-resources-for-primary-care/
Advocacy
- The Swedish government is planning to develop new guidelines for the diagnosis and treatment of long COVID. The government has allocated $1.6m krona (approx AUD220,000) for the compilation of review of existing knowledge and $3.5m krona (approx AUD450,000) to develop clinical guidelines. These are due by August 2024.
- #MEAction installed 300 cots on the National Mall in Washington DC for the #MillionsMissing event on May 12. Each cot represented the millions of people missing from their lives due to ME/CFS and long COVID. Each cot had a pillow case which decorated by someone living with ME/CFS to represent their lives. Watch video of the art installation here: https://youtu.be/IFbscw_BTsQ
- The World ME Alliance launched its new Myalgic Encephalomyelitis fact sheet on May 12. The fact sheet is available in four languages, and can be downloaded here: https://worldmealliance.org/2023/04/new-factsheet-on-me-available-in-multiple-languages-for-world-me-day/
- A complaint was lodged with the Dutch Advertising Code Commission against the Dutch Knowledge Center for Chronic Fatigue (NKCV), which had the claim that CBT for ME/CFS “is not harmful” on its website. The Commission found that this statement lacked nuance and that “the average consumer is given an incorrect impression about the risks and the results that can be expected from the touted treatment”. It ruled that NKCV should not advertise its treatments in this way in future.
- A petition to the Austrian government, calling for increased research funding, improved healthcare, more education for healthcare professionals and better access to social security for people with ME/CFS, was sent to the parliamentary Health Committee. The Committee raised a motion calling on the government to improve care for people with ME/CFS.
