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Exciting new project to set M.E. research priorities

March 10, 2020

A new project, supported by three Government-backed research funders, has been launched to help ensure that the M.E. research priorities that matter most to the people affected by the illness inform future research.

Led by people with M.E. and clinicians who support them, this M.E./CFS Priority Setting Partnership (PSP) will be facilitated by non-profit making initiative, The James Lind Alliance (JLA).

PSPs aim to identify and prioritise the top ten questions that patients, carers and clinicians agree are the most important, not been answered by research to date, using a methodology tried and tested with a range of other illnesses and health issues.

The Steering Group being set up to lead the PSP will be supported by independent JLA Senior Advisor, Katherine Cowan. She will chair meetings and offer advice and guidance, making sure the process is fair and transparent. Katherine, who has a background in social research, has chaired almost 30 PSPs and is credited with being passionate about the JLA method and “its potential to bring disparate and often seldom-heard groups together to influence the research agenda.”

As announced at the UK CFS/M.E. Research Collaborative (CMRC) conference in Bristol today, the first stage of the M.E./CFS PSP will see people with M.E., carers and clinicians widely consulted on the unanswered M.E. questions they want to see addressed. These questions will be assessed to check they are in the scope of the PSP and verified as true uncertainties.

An interim prioritisation exercise then takes place, before a priority-setting workshop is convened, where participants debate and finally arrive at a top ten list of research priorities. The eventual aim is to turn these priorities into research questions, and for members of the PSP Steering Group to work with researchers and research funders to obtain funding for that research.

Last September, the JLA published More than a Top 10, reporting on the transformational potential of PSPs. Outcomes can include:

  • enabling patients to expand and enhance involvement in other parts of the research system
  • changing relationships between funders and researchers, placing less emphasis on competition and greater emphasis on working together to achieve a common goal
  • improving reputations and status of researchers
  • changing clinical practice
  • supporting organisations to develop new partnerships
  • promoting greater collaboration and enhancing patient and public involvement.

Recent successful PSPs include those for mitochondrial disease, safe care for adults with complex health needs, and multiple sclerosis.

The PSP for asthma culminated in a study funded by the NIHR Health Technology Assessment Programme against a PSP priority. Prof Stephen Holgate – then Chair of the UK Respiratory Research Collaborative and now Chair of the CMRC – commented:

“Without this coming together of patients with the research community, catalysed by the JLA, the subject of breathing exercises would never have been identified as one that received so much enthusiastic support.”

Running until July 2021, the M.E./CFS PSP has been made possible by funding from the National Institute for Health Research, the Medical Research Council and the Scottish Government Chief Scientist Office. The funding has been made to Action for M.E. who will provide the administrative, communications and coordination support for the project, overseen and managed by the PSP Steering Group now being recruited.

For more details about the project, including applying to join the Steering Group and signing-up to take part, please visit the M.E./CFS PSP website at www.psp-me.co.uk and follow on Twitter @PSPforMECFS