Journal of IiMER June 2024 European Infrastructure for ME The charity has instigated several initiatives to begin to build this presence in the absence of any official European strategy - a European ME Alliance of ME Patient Groups, a European ME Research Group, a European ME Clinicians Group and a European Young ME Researchers Network. Researchers, clinicians and carers – coming together. Young EMERG The European ME Research Group early career researcher network, formed last year, brings together the new wave of researchers to form a European support base that can facilitate collaboration with early career investigators in other continents. This group published a well-received paper last year – Advancing Research and Treatment: An Overview of Clinical Trials in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Future Perspectives - https://www.mdpi.com/2077-0383/13/2/325 Advocacy The charity has not forgotten the need for advocacy and has regularly commented and acted on issues affecting ME - in parliament, CMO, UKRI, NHS, DHSC. NICE, and abroad. In the 2018/2019 UK parliamentary debates on ME, Invest in ME Research produced a document that summarised the status of ME. It also laid out a bold vision for research - proposing that £20 million be allocated every year for five years to kick-start biomedical research and support the foundations that this small charity has laid. More recently, the charity was involved in the DHSC/UKCRC Delivery Plan for ME that was set up by an ex-health minister – some time after he left that position, where he actually could have made a difference. Sadly, our final report from that two-year project is not optimistic for any breakthrough. The charity had submitted proposals at the first meeting that we attended – proposals meant to take rapid action and address existing issues - but these proposals were not even discussed as the working group exhibited limited vision or ambition and a continual lack of urgency. A two-year project seemed far too long to determine already known issues and provide resolutions – until one realises that two years ago it was well known that a general election would be coming in exactly two years, allowing this particular can to be well and truly kicked down the road on its continuing odyssey to nowhere. Our comments on this initiative are under our Campaigning web page. During the hiatus caused by the pandemic we updated our 5-year plan – leaving major funding now the one missing element. Invest in ME Research Page 9 of 32
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