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New toolkit set to help ME/CFS researchers target funding opportunities

New toolkit set to help ME/CFS researchers target funding opportunities

27th May 2024

A new toolkit designed to help enhance research into Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) through funding has been made available for download with the support of the Chief Scientist Office (CSO)

After the establishment of a UK Clinical Research Collaboration (UKCRC) working group on ME/CFS, government funders of research in this area, academic researchers, persons with lived experience of ME/CFS and carers came together to develop the researcher toolkit.

The ME/CFS Priority Setting Partnership calls the illness a “poorly understood, complex and debilitating medical condition” causing debilitating pain, fatigue, and a range of other symptoms associated with post-exertional malaise, the body and brain’s inability to recover after expending even small amounts of energy.

It believes “rates of research funding in ME/CFS in the UK are low” and insists “more high-quality research proposals in this area are needed”.

However, the Partnership – run by a steering group that represents many different organisations involved in ME/CFS advocacy, care and research – now believes the toolkit could help to kickstart progress by signposting resources to support the development of high-quality funding applications.

The toolkit illustrates existing funding streams for ME/CFS research, setting out: 

  • UK government research funding opportunities
  • Support that is available for researchers to help with their applications
  • Guides to embedding patient and public involvement
  • Resources on developing high quality proposals

The toolkit section of the Partnership website further offers:

  • Information on charity funding opportunities
  • Information on how to get involved in research for people with lived experience of ME

Professor Chris Ponting of the Medical Research Council Human Genetics Unit at the University of Edinburgh, who is an Investigator on the world’s largest ME/CFS study, titled DecodeME, said: “The causes of ME/CFS remain uncertain – but the urgent need to study such a devastating, long-term illness that affects many body systems of an estimated 250,000 people in the UK, and around 17 million worldwide, is extremely clear.

“It is important that the many suffering from this debilitating syndrome are listened to, their symptoms believed, and they are directly involved in future research. 

“The new researcher toolkit therefore is welcome, and a first positive step in the right direction for vital studies into an underserved disease.”

DecodeME aims to identify genetic causes of why people become ill with ME/CFS, help to understand the disease, and ultimately find treatments.

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