Right now, it is up to us patients and friends and family members to bring on the change. Sadly, federal funding for ME/CFS research is ludicrously low. In Sweden, there is no budget at all. In the USA, the NIH, the worlds largest medical research funder, spends a smidgen on ME/CFS. A normal NIH budget for comparable diseases is around $150 million per year. For example, around $130 million per year is directed at MS the figure for ME/CFS is $5 million per year. That is around 30 times less than it should be!
This means that in one year, MS researchers can get done what it takes ME/CFS researchers 30 years to accomplish. No wonder there are no biomarkers or effective treatments for ME/CFS. No wonder there is such little understanding of underlying disease processes. In the past 25 years, biomedical ME/CFS research has come up with a number of interesting findings and launched several possible theories of disease process, as well as potential subgroups. There has been no lack of promising leads and exciting possibilities. But all too often, the initial pilot studies have not been followed by larger studies or independent confirmation, due to lack of funding. Many leads have been left without proper follow-up. In the meantime, our lives go by. As a patient, I cant just sit and let this happen.