ME/CFS Priority Setting Partnership

The ME/CFS Priority Setting Partnership or ME/CFS PSP is a United Kingdom research initiative to engage ME/CFS patients in collaboratively deciding research priorities.

Top 10+ Priorities

The following research priorities were identified and published in May 2022:

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?

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)?

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

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

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

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

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?

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?

9.  What causes ME/CFS to become severe?

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

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

Deciding research priorities

Patients helped decide research priorities by:

• online survey
• paper form, after contacting the email address or phone number
• people with visual impairment can request a large print form

The process was faciltated by the James Lind Alliance, based on participant by three key UK groups:

• ME/CFS patients
• Carers of ME/CFS patients
• Health professionals working in the ME/CFS field

Notable people

Organisation Representatives

• Sonya Chowdhury, PSP Lead, Chief Executive of Action for M.E.
• Russell Fleming, Forward-ME
• Debbie Smith, Science for ME Forum
• Representatives from the ME Research Collaborative Patient Advisory Group:
  • Adrian Baldwin
  • Rachel Ephgrave
  • Simon Everitt
  • Gemma Hoyes
  • Susan O’Shea
  • Opal Webster-Philp

Patient Representatives

• Annette Barclay
• Dr Monica Bolton
• Sian Leary
• Dr Ben Marsh

Carer Representatives

• Rachel Elliott
• Mike Emmans Dean
• Ann West

Health and Care Professional Representatives

• Tina Betts
• Joan Crawford
• Professor Vinod Patel and proxy Helen Baxter
• Professor Sarah Tyson

James Lind Alliance Advisors and Specialists

• Toto Gronlund, JLA Facilitator
• Beccy Maeso, JLA Team
• Kristina Staley, Information Specialist
• Caroline Whiting, JLA Team

Coordinators

• Claire Dransfield, Action for ME
• Sam Bromiley (previously Action for ME)

Notable publications

• May 2022, Defining future ME/CFS research (final report)

Funding

The funding was provided by the UK's National Institute for Health Research, the Scottish Government Chief Scientist Office and the Medical Research Council to Action for ME for "administrative, communications and coordination support", and facilitated by James Lind Allianc, a non-profit organisation.

Contact details

Email: questions@psp-me.co.uk
Phone: 0117 927 9551

Online presence

• Twitter
• Facebook
• Website
• YouTube

See also

• United Kingdom

Learn more

• ME/CFS Priority Setting Partnership
• Top 10+ Priorities - James Lind Alliance