Image Credit: Dialogues for a Neglected Illness
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. We hope these 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 M.E. with support from the non-profit making initiative, the James Lind Alliance. We 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?
What next?
What we’re doing
We are committed to promoting the Top 10+ research priorities as widely as we can. To do so, we aim to publish our findings in a peer reviewed journal. We will promote the Top 10+ through our own networks, and continue to promote the power and necessity of patient and public involvement.
What you can do
You can commit to promoting the Top 10+ research ideas to your MP, in campaigning or awareness raising efforts, and get involved in research where you are able to.
Click here to find further resources to help you promote the Top 10+.
What Action for M.E. are doing
Action for M.E., who were funded to coordinate this PSP, commit to progressing research into the Top 10+ and ensuring that people with lived experience are at the heart of all research they support or fund. They are also actively engaged with the government calling for a national strategy for ME/CFS that will:
- invest in the necessary expansion of capacity in the ME/CFS genetics research field
- utilise, engage and invigorate existing research excellence from across the UK and global research community
- catalyse and facilitate collaboration and partnership opportunities
- exploit potential for crossover learning from COVID-19 and long-COVID research
- develop funded research programmes on the Top 10+ ME/CFS research priorities determined by this PSP.
Action for M.E. will also maintain this PSP website to ensure people can find information about the process and all the research ideas submitted, not just the final Top 10+ questions.
Defining future ME/CFS research - the full report
Listen to the report
What did the priority setting process look like?
Establishing the partnership
We formed a Steering Group, bringing together people with ME/CFS, their carers and different healthcare professionals. They agreed what the partnership covered, what happened and when, and who else to work with in order to reach as wide an audience as possible.
You told us the questions you thought research should answer
We asked people with ME/CFS, carers and healthcare professionals, to tell us the questions that they thought research should answer.
Data processing
We collected all the questions and sorted them into themes. We'll also looked to see whether any of the questions have been answered by research already, but none had.
First round of priority setting
We asked people with ME/CFS, carers and healthcare professionals to look at the long list of questions and choose their top 10. From this, we came to a shortlist of 18 questions.
Final round of priority setting
We held three workshops, bringing together people with ME/CFS, carers and healthcare professionals to look at the shortlist of 18 questions and come to a consensus on the final Top 10+.
Now, we’re working with researchers and research funders to make your priorities a reality.
Key Documents
What is ME?
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, most commonly the nervous and immune systems. ME/CFS affects an estimated 250,000 people in the UK, and up to 30 million people worldwide. Roughly 70% of people with ME/CFS are women.
The World Health Organization has classified ME as a neurological disease since 1969. The exact underlying mechanisms of the condition are unknown. However, people with ME/CFS experience severe, persistent symptoms including physical and mental exhaustion associated with post-exertional malaise (symptoms caused or made worse by expending even small amounts of energy, which can be delayed), pain, cardiovascular and gastrointestinal problems, sensory impairments and sleep disorders. A key feature is that symptoms tend to fluctuate in terms of type and severity over time.
Who funded and supported this project?
This project was made possible by funding from the National Institute for Health and Care Research, the Scottish Government Chief Scientist Office and the Medical Research Council. The funding was awarded to the UK charity Action for M.E. who provided administrative, communications and coordination support for the project, overseen and managed by the PSP Steering Group. This was a new initiative that is not linked to any previous research or agenda.
We are funded and/or supported by:
