ME/CFS Top 10

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?

The following questions were also discussed and put in order of priority at the workshop:

12.  What causes brain fog in people with ME/CFS? How is this best treated and managed?

13.  What causes ongoing fatigue (tiredness or exhaustion) in people with ME/CFS? How is this best treated and managed?

14.  What causes people with ME/CFS to relapse and their symptoms to get worse? Are there ways to prevent or minimise relapses?

15.  What causes pain in people with ME/CFS? How is this best treated and managed?

16.  How do some people recover from ME/CFS? How might this understanding help others?

17.  What causes sleep problems and sleep pattern changes in people with ME/CFS? How are these best managed and treated?

18.  What would be the make-up of a high-quality specialist service for people with ME/CFS? Would this improve the treatment and care of people with ME/CFS?