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Breakthrough-ME: our plan to rapidly grow research

March 15, 2022

Despite the devastating impact of M.E., understanding of the disease is still woeful. While at least 250,000 people live with M.E., and even more experiencing overlapping symptoms with M.E. following Covid, we have no treatments and little understanding of its causes. Significant investment in high-quality research is critical.

Action for M.E. has worked hard to improve the lives of children and adults with M.E., but this is not enough. To end the neglect of M.E. we need a national strategy that includes a focus on research.

Today we are launching Breakthrough-ME: our plan to rapidly grow research and funding.

Our goal is to achieve a breakthrough in M.E. research that will provide the scientific knowledge required to deliver the diagnostics, treatments and eventually cures that we so desperately need.

Partnering with Prof Chris Ponting (Medical Research Council’s Human Genetics Unit and Principal Investigator on DecodeME), Action for M.E. will:

  • Host a genetics research summit to stimulate new studies. We will bring together leading biomedical researchers and people with lived experience of M.E. this year. The summit will focus on genetic research and knowledge gained from other post-infectious diseases including Long Covid.
  • Establish the first Genetics Centre of Excellence. We will establish a virtual network of M.E. researchers to work with the M.E. community, to build on the genetic insights gained through DecodeME and other studies. We will establish a programme of high-quality research, supported by the Centre of Excellence.

Breakthrough-ME will ensure that people with lived experience are at the heart of all research delivered through the Centre of Excellence. We will build on the patient and public involvement that is driving the DecodeME study and the M.E./CFS Priority Setting Partnership.

We want to see the same level of funding and high-quality research as in other severe diseases. We will work across other scientific disciplines to accelerate our ability to pursue research leads as they emerge.

We will invest in a Future Leaders programme to create a pathway for early-stage career researchers to secure funding and stay in the field.

Sonya Chowdhury, CEO, Action for M.E. says:

“Urgent action is needed to improve the lives of over 250,000 children and adults with M.E. and their families impacted by this disabling disease. Both diabetes and Multiple Sclerosis have dramatically improved mortality rates and quality of life due to research investment and breakthroughs. Action for M.E. is working to drive the investment needed to achieve that breakthrough, so every child and adult has access to the support, care and treatments they need. We will be announcing more in the next few weeks.”

Prof Chris Ponting says:

“DecodeME cannot be the last M.E./CFS research project funded by taxpayers. Currently, low-level funding is yielding low-level evidence that fails to reach the high level of evidence required for competitive funding. Funders should act now and break this vicious cycle.”