The Quadram Institute on the Norwich Research Park has responded to a Department of Health and Social Care consultation on its interim plan on ME/CFS in relation to research.
The Department of Health and Social Care’s interim plan identifies key problems surrounding low capacity and capability to respond to research needs, low awareness of need of research in ME/CFS, and low levels of funded research.
Six rapid actions are proposed as part of the interim delivery plan. Working groups will develop case studies of research, engage with the initiatives to educate clinicians and practitioners about ME/CFS research and support funders to raise awareness of opportunities for research funding and how to involve patient and public involvement and engagement in research for ME/CFS.
The Quadram Institute, under Professor Simon Carding, has developed research expertise on ME/CFS over many years. This body of research builds from our wider science programmes working on the gut microbiome and its contribution to human health and diseases such as ME/CFS. These programmes are part of a UK science national capability, strategically funded through UKRI.
Professor Simon Carding said: “We support the broad thrust of the interim plan for ME/CFS and completely agree that ME/CFS has been a neglected disease and under-researched for far too long, much to the detriment of people with ME/CFS.
Here in Norwich, we are a centre of excellence for research into the disease and we welcome a greater focus on research priorities and funding. We are currently the only UK research centre due to run a microbiome-targeted intervention trial (RESTORE-ME) for people with ME/CFS. To date, our research into ME/CFS has been charitably funded by Invest in ME Research and the UEA, and not funded via public funding.
“People with ME desperately need new treatments and very little public research funding has been focused in this area. ME/CFS has much in common with Long Covid and the disease burden of these conditions significantly reduces life prospects and contributes to a serious loss of economic productivity for the UK.”
The Department of Health and Social Care’s interim plan proposed a research roadmap will be welcome progress and we would also urge greater investment in core infrastructure such as biobanking for ME, better provision of NHS services for earlier diagnosis to improve prospects for patients and to enable earlier-onset research into the condition.
This article was originally posted by our partner, the Quadram Institute, on their website here.