There are an estimated 1.3 million people in the UK who experience ME/CFS or ME/CFS -like symptoms with post-exertional malaise, the hallmark symptom of ME/CFS. Despite ME/CFS’s high prevalence, little is known about its causes and ultimate cure. Parallels have also recently been drawn between ME/CFS and Long Covid with some research indicating that at least 50% of people with long covid have symptoms that directly mirror ME/CFS. There are currently no cures or effective, evidence-based treatments for ME/CFS. Biomedical research is urgently needed to understand the disease, develop diagnostic tests and find treatments. The UK has a world-leading life sciences sector, yet this expertise is not being taken advantage of as research into ME/CFS is still critically underfunded, lacks coordination and is not structured in a way to deliver meaningful progress at scale. This has not changed for decades and action by mainstream funders has failed to change this.

A proposal for an ME/CFS, Long Covid and Post-Infectious Disease research platform

Hopefully sarcoidosis would be included too. The symptoms are very similar. Although we know it is granulomas causing the symptoms the actual cause / trigger is unknown but it is thought to be viral / infection/ environmental. It would be a shame not to include people with sarcoidosis if there is joined up research into ME/CFS, Long Covid and other post viral conditions.