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 UK ME/CFS Priority Setting Partnership (PSP), facilitated by the James Lind Alliance (JLA), is coming to a conclusion.
The aim of the PSP is to provide a voice in research funding priorities to people living with an illness, their carers and clinicians, and includes wide-ranging consultation, typically taking 12-18 months. The JLA has facilitated PSPs for a range of illnesses, including multiple sclerosis, cystic fibrosis, and dementia. The final outcome of the process will be a list of 10 priority areas for UK ME/CFS research, which can be used to influence funding decisions.
ZonMW, the Netherlands Organisation for Scientific Research, published its first call for applications for part of the agreed €28.5m funding which will be delivered over ten years.
The intention is to establish a biomedical research program into ME/CFS in the Netherlands. The priority for this funding call is for a biobank and patient registry, and international collaboration. Read more here
US National Institutes of Health (NIH) announced that funding for its ME/CFS Collaborative Research Centers (CRC) program will be extended. The new funding will again be for 5 years, and current CRCs would need to re-apply.
Funding is expected to commence in April 2023 Read more here
DecodeME, the UK genome-wide association study (GWAS), has begun to collect samples from a small group of participants, after a thorough patient-centred design process. It is hoped that the study will have 20,000 participants, which would make it the largest ever ME/CFS study.
The study is only open to UK patients Read more here
Clinical care
The Bateman Horne Center produced a guide for treating COVID-19 in patients with underlying ME/CFS or severe fibromyalgia.
A new online learning module has been developed in the UK to help UK health professionals understand and use the new NICE clinical guidelines for ME/CFS.
Professor Todd Davenport (scientific advisor to the Workwell Foundation) has a new one-hour webinar for health professionals, titled Lessons from Myalgic Encephalomyelitis for long COVID.
Advocacy
A petition to the German parliament calling for healthcare, research and political support for people living with ME/CFS, garnered more than 97,000 signatures in just 28 days (50,000 signatures were required in order for parliament to hold a hearing). As a result, a hearing was held on Feb 14, during which patient advocate Daniel Loy and researcher Carmen Scheibenbogen spoke about the needs facing German ME/CFS patients and called for the establishment of a working group on ME/CFS. In addition, messages from more than 200 patients were submitted.
View the English transcript here
A follow-up meeting was held in the European Parliament on Evelien Van Den Brink’s 2019 petition. Evelien’s original speech to the EU parliament resulted in the passing of a resolution to prioritise biomedical research into ME/CFS and increase research funding. At the follow-up meeting, Evelien lamented the lack of progress on research funding. Several MEPs also urged the European Parliament to increase funding.
The CARE (Comprehensive Access to Resources and Education) for long COVID Act has been introduced to the US senate, calling for accelerated research, improved education for health professionals, greater interagency cooperation, and more partnerships on long COVID and ME/CFS. US advocacy groups are lobbying members of Congress and Senators to support the bill.
The German ME/CFS Society and long COVID Germany successfully lobbied to have ME/CFS and long COVID included as part of the coalition government’s agreement. The groups have now developed a national action plan for ME/CFS and Post-COVID Syndrome, which has been submitted to the federal government. The plan highlights the need for more research into pathophysiology, diagnosis, treatments and appropriate health services, and proposes a network of centres for the diagnosis and treatment of post-infectious diseases.
