By David Tuller, DrPH
This is a crowdfunding month for UC Berkekely and Trial By Error. If you’d like to support my work, here’s the link: https://crowdfund.berkeley.edu/project/47768
(Donations are tax-deductible for US taxpayers.)
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The UK Medical Research Council recently awarded £800,000 over four years to PRIME, a partnership between Action For ME and the University of Edinburgh. PRIME will seek to develop a research infrastructure to pursue investigations into ME/CFS. The funding starts this month.
According to Action For ME, the goals of PRIME are:
“1. Coordinate and engage researchers by creating at least 15 new research collaborations. We will bring together researchers from a range of backgrounds, along with private sector partners to investigate the genetics, biomarkers and disease mechanisms behind ME/CFS.
“2. Strengthen International Research Networks by forming two global consortia, one with a focus on genetics and the other on molecular biomarkers. The aim of the consortias will be to share data, replicate research and create a shared research standard.
“3. Build a Public and Patient Involvement (PPI) pool with at least 100 trained contributors (people with ME and their carers). This will be the world’s first large scale PPI pool available for ME researchers across the UK so that their research can be created and shaped by people with lived experience.”
Chris Ponting, a geneticist at the University of Edinburgh, is the lead investigator of DecodeME, a study that recently identified eight spots on the genome implicated in ME/CFS. Professor Ponting, along with Sonya Chowdhury, Action For ME’s CEO, will oversee PRIME. I spoke last week with Professor Ponting about the project and related issues. (I also spoke with Professor Ponting a couple of months ago about the DecodeME findings.)
It feels like things are moving in the right direction. Collaborative work sounds good but I hope it isn’t at the expense of challenging and robust debate, argument and constructive disagreement. To my mind, those things are key ingredients that enable science to advance at a pace.
From what I hear / read between the lines the Research funding body in the UK, had two major “roadblocks” to funding ME research. Firstly, the PACE Trial had been funded to the tune of at least £5M, which effectively had eaten up ME’s turn and other conditions had to get their turn and secondly that a number PACE advocates / supporters were sitting on the committee and were making sure every I was dotted, T crossed, comma in the right places plus asking why are we spending money when we have treatment i.e. PACE.