JOURNAL OF IIMER May 2026 It is worth reflecting on how progress of this kind is made. The networks, research relationships, and institutional infrastructure that now exist were built here - collaboratively, persistently, and without public support - over twenty years. That is not a complaint; it is context. Public funding, when it has materialised, has too often been directed towards familiar recipients and familiar approaches, at times reconstructing what already existed rather than building upon it. The effect has been to introduce delay where there was opportunity for acceleration, and to consume resource that might otherwise have gone directly to research. This may not be unique to ME; it is a pattern well recognised across many fields. But for a condition where patients have waited long enough, the cost is felt particularly keenly. Influence over the research agenda is not the same as advancing it. Administrative overhead is not the same as doing the work. And the structures this community has spent twenty years building do not need to be replicated elsewhere - they need to be resourced. Control is not progress. Administration is not research. The wheel does not need reinventing - it needs funding and support. The Centre at Norwich Research Park stands as one of the clearest expressions of what vision, commitment, and genuine collaboration can produce. The scientific and institutional infrastructure is in place. The missing ingredient has been consistent, adequate funding from those with both the means and the mandate to provide it. Twenty years have shown that persistence, integrity, and collaboration yield results. Yet, as a small, entirely volunteer-run charity - no salaries, every donation directed to biomedical research - we continue to swim against the tide with continuing missed opportunities at the policy level demonstrating that, in the UK at least, rapid progress will come primarily through the efforts of the biomedical research community that has been built here, not through the goodwill of institutions that have repeatedly shown their preference for a status quo or strategic indecision. Our great thanks to conference sponsors the Irish ME Trust, Quadram Institute Bioscience, Terra Biological LLC, PrecisionLife, and Vazyme, and to The Hendrie Foundation and LunaNova for their immense and valued commitment to our research. As we open this conference week, we invite all delegates - researchers, clinicians, patients, early-career scientists, and supporters - to engage fully with the presentations, participate in the discussions, and build the connections that will carry ME research forward into its next chapter. Welcome to International ME Conference Week 2026. Kathleen McCall Chairman, Invest in ME Research Invest in ME Research Page 3 of 35
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