Question

I am pleased to see increasing levels of research into ME/CFS with lots of papers being published. But is there one site or institution that is pulling all these findings together and monitoring this research to confirm that the methods being used are robust and valid.

What I’m reading appears to be lots of fragmented research studies with no forward-looking strategy and a lack of joined-up thinking. Does a research strategy exist anywhere? We also need to know what has been studied and didn’t show anything significant.

Answer

You make several very valid points about the need for far more joined-up thinking in ME/CFS research!

As you will know, the MEA provides on-going coverage on our social media (website and MEA Facebook) of all the latest research findings in both Long Covid and ME/CFS, along with expert comment where needed.

However, there isn’t any reputable research organisation that is collecting and critically analysing this information and piecing it all together. This is one of the reasons why we have been trying to persuade the government to provide funds to set up a proper research hub/centre for ME/CFS that could produce and oversee a proper well-funded research strategy and monitor all the research that is being carried out and published. Unfortunately, all our lobbying attempts, including parliamentary support have failed so far.

We do, however, have two publications which cover research findings and go some way in piecing all the international research together in the form of predisposing, precipitating and perpetuating factors:

MEA Booklet for people with ME/CFS: What you need to know about ME/CFS

For clinicians and researchers: The ME Association ME/CFS/PVFS Clinical & Research Guide (2022 Edition) (The ‘Purple Book’):