A Decade Developing the
UK/European Centre of Excellence for ME

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IiMER’s vision has always extended beyond the UK, emphasising European collaboration – and the centre also has links to European institutes and is working on collaborative applications.

• European ME Research Group (EMERG): IiMER helped establish EMERG to bring together researchers across Europe to share knowledge and standardise research approaches.
• Advancing Clinical and Research Guidelines: Through the formation of the European Clinicians Council (EMECC) and Young EMERG, efforts are underway to harmonise clinical guidelines, diagnostic criteria, and research methodologies, aligning with NIH initiatives.
• Recognition and Advocacy: As a founding member of the European ME Alliance (EMEA), a coalition of national ME patient organisations and charities, IiMER has played a significant role in advocating for ME research across Europe. The recent accreditation of EMEA by WHO Europe as a Non-State Actor highlights the longstanding advocacy efforts that have been made by IiMER and EMEA colleagues.

EMEA has embraced the vision of establishing European Centres of Excellence for ME, optimising resources across the continent, which was highlighted in recent statements to WHO.

With all of these initiatives in place, what is needed now is scaling up through adequate funding and capacity to ensure the Centre thrives as the premier UK Centre of Excellence for ME and a key partner for similar European centres.

What remains absent is sufficient funding.

The achievements of Invest in ME Research supporters are particularly significant given that it is a small, volunteer-led charity where passion and commitment drive progress—without reliance on salaries or large overheads. This focus on dedication rather than compensation highlights the charity's approach to ME advocacy.

However, much of this progress has gone unacknowledged, often overlooked by those who claim to champion ME research. Participation in meetings with the Department of Health and Social Care (DHSC) led to frustration, as the charity's proposals were ignored, wasting two years of effort with little to show for it following a process that was lacklustre and without ambition or direction. Despite the Medical Research Council (MRC) holding a highlight notice for ME for 13 years, it has failed to pursue necessary evaluations or advancements, as highlighted during DHSC meetings – something we pointed out in input to DHSC working group meetings.

From the outset of the DHSC process, IiMER proposed funding the Norwich Centre of Excellence as the most direct route to advancing ME research and expanding research capacity. Despite presenting a practical and expedited path forward, this suggestion was never seriously considered, hindered by the group's inflexible approach.

The charity even advocated for a collaborative research strategy, suggesting that other UK research sites could partner with the Norwich Centre, following a model similar to the NIH's approach in the USA. This would allow the Norwich Centre to take the lead in coordinating biomedical research, drawing on existing European collaborations to strengthen the initiative.

Sadly, there was no tangible support or follow-up on these proposals.

Following the DHSC's final meeting, IiMER suggested that researchers from the working group meet with MRC and NIHR representatives during the charity’s international ME conference in June 2024, even offering to cover expenses. Yet, no response was ever received.