ME/CFS Priority Setting Partnership

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history

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.[1]

Top 10+ Priorities[edit | edit source]

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?[2]

Deciding research priorities[edit | edit source]

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[3]

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[4][5]

Notable people[edit | edit source]

Organisation Representatives[edit | edit source]

Patient Representatives[edit | edit source]

Carer Representatives[edit | edit source]

Health and Care Professional Representatives[edit | edit source]

James Lind Alliance Advisors and Specialists[edit | edit source]

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

Coordinators[edit | edit source]

Notable publications[edit | edit source]

Funding[edit | edit source]

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.[4]

Contact details[edit | edit source]

Phone: 0117 927 9551

Online presence[edit | edit source]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. "Prioritise ME". ME/CFS Priority Setting Partnership. Retrieved November 7, 2021.
  2. "ME/CFS Top 10+ Priorities". ME/CFS Priority Setting Partnership. May 2022. Retrieved May 16, 2022.
  3. "Take part". ME/CFS Priority Setting Partnership. Retrieved November 7, 2021.
  4. 4.0 4.1 ME/CFS Priority Setting Partnership. "Frequently Asked Questions". ME/CFS Priority Setting Partnership. Retrieved May 16, 2022.
  5. 5.0 5.1 ME/CFS Priority Setting Partnership (May 2022). "Defining future ME/CFS research | final report" (PDF). James Lind Alliance.