The Top 10+ ME/CFS Research Priorities
The ME/CFS Priority Setting Partnership has completed a participatory process to identify the Top 10+ ME/CFS research priorities to influence future research funding. They hope they will change the ME/CFS research landscape in the UK and beyond.
The partnership was led by people with ME/CFS, their carers and clinicians, and facilitated by Action for ME supported by non-profit making initiative, the James Lind Alliance. They used an approach tried and tested with a range of other illnesses, including MS and fibromyalgia.
Priority 1
What is the biological mechanism that causes post-exertional malaise (symptoms caused or made worse by physical, mental or emotional effort, which can be delayed) in people with ME/CFS? How is this best treated and managed?
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?