ME/CFS Research Priorities Report 2022

During 2021 and early 2022 thousands of clinicians, patients and carers throughout the UK worked together to identify areas of ME/CFS that need to be researched. An ME/CFS Priority Setting Partnership (PSP) was set up to determine what should be prioritised.

Over 5,300 ideas for research were submitted, then they  were prioritised.  On World ME Day, May 12th 2022 the final report with the top 10+ research priorities was published.

“Now that we have the Top 10+, researchers, funders and government must work with people with ME/CFS to produce the highest quality research into these areas, and continue to prioritise ME”

Gemma Hoyes, PSP steering group member

The UK Health Secretary responded positively and held a meeting on the 9th June 2022 to discuss ME/CFS research with researchers, charity and patient representatives, representatives from the government bodies who fund research (MRC, NIHR), and with Professor Lucy Chappell – the DHSC Chief Scientific Advisor.

Priority 2

Which existing drugs used to treat other conditions might be useful for treating ME/CFS, such as low dose naltrexone, or drugs used to treat Postural Orthostatic Tachycardia Syndrome (POTS)?​​

Priority 3

How can an accurate and reliable diagnostic test be developed for ME/CFS?​

Priority 4

Is ME/CFS caused by a faulty immune system? Is ME/CFS an autoimmune condition?​​

Priority 5

Are there different types of ME/CFS linked to different causes and how severe it becomes? Do different types of ME/CFS need different treatments or have different chances of recovery?​

Priority 6

Why do some people develop ME/CFS following an infection? Is there a link with long-COVID?

Priority 7

What causes the central and peripheral nervous systems (brain, spinal cord and nerves in the body) to malfunction in people with ME/CFS? Could this understanding lead to new treatments?​

Priority 8

Is there a genetic link to ME/CFS? If yes, how does this affect the risk of ME/CFS in families? Could this lead to new treatments?

Priority 9

What causes ME/CFS to become severe?​

Priority 10

How are mitochondria, responsible for the body’s energy production, affected in ME/CFS? Could this understanding lead to new treatments?

Priority 10+

Does poor delivery or use of oxygen within the body cause ME/CFS symptoms? If so, how is this best treated?​

The process

• Steering group recruitment
• Survey – what should research priorities be?
• Second survey to choose from long list
• Final workshops
• Launch of report