Written by Rory Preston & Lexi | Last Updated: 6th November 2025
We believe the following 7 big changes would help to create real progress for patients with myalgic encephalomyelitis (ME, also known as ME/CFS) in the UK - the country with which we are most familiar. However, the same core problems exist around the world.
ME has a huge disease burden and prevalence, yet the funding it receives for biomedical research relative to those things is woefully low. In fact, the total figure for government funding between 2015 and 2020 was just £6m. That’s £1m per year, or around £2.50 per patient per year. As you can probably imagine, this is nowhere near enough funding to make significant progress.
We now know approaches like graded exercise therapy (GET), based on a very wrong ‘psycho-social’ model of the disease, are seriously harmful in patients due to post-exertional malaise (PEM). Funding into approaches like this should not be happening, full stop. There is now plenty of evidence of physiological abnormalities in systems like metabolism, the immune system, the cardiac/vascular systems, and the autonomic nervous system. That is where research should be focused to have real impact.
National registries already exist for other diseases in the UK, such as diabetes. There should be one for ME too. Why is it needed? It will help us keep track of how many people have ME - helping to motivate better funding, more attention, and help to speed up the process of recruiting patients into clinical trials and studies.
Establishing specialist NHS clinics for ME would help to bridge the gap between new research and clinical care, and provide ‘centers of excellence’ where knowledge of ME is completely up-to-date, and patients can expect to receive treatment and care that is sensitive to their level of severity. They would also act as a centres for clinical trials, which we need significantly ramping up. Given the overlap of ME with long COVID, and common co-morbidity with other infection-associated chronic conditions (IACCs) such as POTS and MCAS, it could be a good idea to establish these as IACC centers of excellence.
A protocol for severe and very severe ME is especially important in hospitals, to stop easily preventable deaths of people with ME. Such patients are very easily triggered and deteriorated by external stimulation (noise, light, touch) - all of which you are heavily exposed to in a hospital environment. There is currently no protocol for managing and minimising this in hospitals. Ideally, such a protocol would be updated regularly, in response to findings from research and clinical trials.