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A quick thread on the 'imminent' UK Gov. ME/CFS Delivery Plan, and, in particular, research funding.
First, the situation RE UK publicly-funded ME/CFS research is truly dire. Right now there is just one active project attempting to understand the illness—DecodeME. 1/n
First, the situation RE UK publicly-funded ME/CFS research is truly dire. Right now there is just one active project attempting to understand the illness—DecodeME. 1/n
Apart from DecodeME, the MRC has essentially not funded any direct research into ME/CFS for the past decade. Even NIHR funding—for the type of wishy-washy nonsense they love to fund—is currently low compared with past levels.
Past initiatives—such as ring-fencing MRC money in 2011—only worked in the short-term. MRC's Highlight Notice for ME/CFS has been a huge failure.
These strategies are simply not enough. We need a substantial plan to turn things around.
These strategies are simply not enough. We need a substantial plan to turn things around.
So that's what I'm hoping for in the report.
We need to build a network of researchers and research centres where programmes of biomedical ME/CFS research can be sustained.
We need to focus on bringing in early-career researchers to work on ME/CFS.
We need to build a network of researchers and research centres where programmes of biomedical ME/CFS research can be sustained.
We need to focus on bringing in early-career researchers to work on ME/CFS.
And we need our charities to understand that we're not likely to achieve a research breakthough through small, charity-funded research projects. The priority has to be coming together to massively increase the level of publicly-funded research, commensurate with disease burden.
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