Research 


The UK DecodeME genome-wide association study is underway and has reported on progress made so far. By the end of 2022, 23,000 participants had registered for the study, more than 17,000 people had completed the survey and about 9,000 samples had been collected. There are still many more needed. This study is only open to UK participants. In March, they also released the analysis plan for the study: https://www.decodeme.org.uk/our-gwas-data-analysis-plan/

Invest in ME is hosting its first in person conference in 4 years on 2 June 2023. Speakers include Vicky Whittemore, Avindra Nath, Bhupesh Prusty, Alain Moreau, David Systrom, Nancy Klimas and Maureen Hanson. https://www.investinme.org/IIMEC15.shtml#home

The Canadian government has announced that it will allocate CAD20m to Post COVID-19 Research Network called long COVID Web. The network will consist of more than 300 researchers across Canada, and will focus on developing accurate diagnostic tools, treatments and rehabilitation strategies. In addition, the Canadian government has also allocated CAD9m for the development of long COVID clinical guidelines. 

The US National Institutes of Health (NIH) has awarded USD9.5m to the Center for Enervating Neuroimmune Disease at Cornell University. Led by Maureen Hanson, the centre is one of the three original Collaborative Research Centres established by the NIH in 2017. This funding secures the centre’s future for the next five years. The grant will fund three key projects: gene expression in muscle and other cells, changes in RNA and extracellular vesicles before and after exercise, and immune system changes. https://news.cornell.edu/stories/2023/04/95m-fund-chronic-fatigue-syndrome-research 

 

Clinical care


The US Centers for Disease Control and Prevention (CDC) commissioned a private consulting firm to develop clinical guidelines for ME/CFS in 2018. The first step in this work was the publication of an evidence review, the draft of which was published for public comment in 2021. Since then, the CDC has concluded that there is insufficient evidence on which to base the development of a clinical guideline and has shelved the project. US advocates plan to use the CDC report to lobby the US Congress for more funds for clinical trials, which are crucial to build the evidence base.

#MEAction and the Patient-Led Research Collaborative have developed a Pacing and Management Guide for ME/CFS and long COVID. This guide is targeted at clinicians and evidence-based: https://www.meaction.net/wp-content/uploads/2023/02/Pacing-Guide-Clincians.FINAL2_.pdf
 
The Welsh government announced increased funding for long COVID clinics, to allow them to be accessible to people with other long term conditions, such as ME/CFS and fibromyalgia.
NZ’s ME Support has developed an online tool for people living with long COVID, and related conditions like ME/CFS. The tool consists of a series of videos and downloadable information, on topics such as pacing, POTS, sleep, pain management, emotions and stress. The tool was developed with funding from the NZ government. https://www.mesupport.org.nz/longcovidhelp 

 

Advocacy


Scottish Parliament held a debate in February on the government’s 2022 commissioned review of ME/CFS services. The review called for improved GP education. During the debate, MPs shared stories of the lives of their constituents living with ME/CFS, and the government reported on progress with GP education and the implementation of the NICE clinical guidelines.  

World ME Alliance’s theme for International ME/CFS Awareness Day: “ME: the disease where pushing harder can make you sicker” https://worldmealliance.org/worldmeday/

A parliamentary seminar was held in the Swedish Parliament on International Women’s Day, to highlight the need for more research. Speakers included Jonas Bergquist and Brian Hughes.