Ring-fence funds for research into ME/CFS

Hundreds of thousands of people were already living with the chronic post-viral illness ME/CFS before the covid pandemic. COVID turned out to be highly effective at producing chronic post-acute illness: about half of the estimated two million people now living with Long Covid in the UK have all the symptoms of ME/CFS. Three quarters of sufferers are too ill to work or to be in formal education or training. A quarter are housebound or even bedbound and heavily dependent on care. 

The burden on the economy of having so many people unable to work or train, some reliant on the care of others, will be measured in billions. The cost of ring-fencing funds for an effective research programme would be measured only in millions.  

Living with ME/CFS is utterly miserable. Government investment in research could transform the lives of huge numbers of its citizens, enabling them to return to being active members of society and contributing billions to the economy. It makes sense on both the human and the economic level; to allow the present situation, in which ME/CFS research is massively underfunded compared to less common and less disabling conditions like multiple sclerosis, Parkinsons and rheumatoid arthritis make no sense at all. 

Thanks to the psychologisation of the disease in the 20th century, there is still enormous prejudice in the medical and research communities: People with ME/CFS are “either depressed or mad” according to one senior medical researcher at Cambridge, based not on evidence but on institutional prejudice. This appalling reality is the reason that next to no research gets funded, and very few researchers are willing to risk their careers and reputations by getting involved. 

This will only change if the government commits to ring-fencing research funding until the illness is understood, and effective treatments are found.