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January 2023 International Research and Advocacy Roundup

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. 


The US Centers for Disease control published its long-awaited evidence review of ME/CFS diagnosis and management. The report followed an extensive public consultation process, with submissions from individuals and organisations around the world, including Emerge Australia.  

Read the CDC report here

Read Emerge Australia’s submission here 

The Patient-Led Research Collaborative announced the recipients of its US4.8m funding, which were awarded to study Long COVID and ME/CFS. Recipients include some well-known ME/CFS researchers, such as Chris Armstrong, Jonas Bergquist, Wenzhong Xiao and Jarred Younger.  

More information here

AimImmunoTech has announced a Phase 2 trial of Ampligen for Long COVID. Ampligen has been used for ME/CFS, but has struggled to obtain regulatory approval in many countries, including the US, UK and Australia.  

Researchers in Germany have formed a National Clinical Study Group to undertake clinical trials of potential treatments for ME/CFS and Long COVID. The group has received government funding of €10m (approximately AUD15m). 

Horizon Europe, the EU’s key research funding program, has announced funding for high-burden, under-researched medical conditions like ME/CFS. The funding will consist of four grants, each of €6-7m (approximately AUD9-10m). This funding was the result of extensive lobbying by European advocates, including a petition signed by more than 14,000 people worldwide and a speech to the EU parliament by Dutch bedbound patient Evelien Van Den Brink. More information can be found here 


Clinical care 

The Workwell Foundation, known for their pioneering work on PEM and the two-day cardiopulmonary exercise test (CPET), have launched Workwell Health, which aims to improve medical care for people who experience PEM. They offer a virtual clinic for patients and a learning community for health professionals.  

Visit their website here



#MillionsMissing events took place with large protests outside parliamentary buildings in Washington, London and Edinburgh in September and October. The protests gained some media attention.

More information can be found here

A silent protest was held outside the Bundestag (German parliament), while ME/CFS was being debated in the parliament. The lawn outside the Bundestag was filled with empty camp beds filling each bed representing 10,000 ME/CFS patients, and patients shared photos of empty shoes on social media to highlight being part of the #MillionsMissing. 

NZ’s Associated Myalgic Encephalomyelitis Incorporated (ANZMES) submitted a petition (along with extensive supporting evidence) to NZ parliament, seeking to have ME/CFS classified as a disability in NZ. Read the full submission here

UK’s ME Association sent information packs, including NICE guidelines, and information on ME/CFS and Long COVID, to all GPs in the UK… more than 8000 packages! 

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