It’s been a long time since you heard from us, but we can finally give an update of what we have been doing behind the scenes.
Following the European ME/CFS resolution we have strongly urged the Commission to listen to the EU parliament and invest in biomedical ME/CFS research. Several MEPs supported our initiatives and signed the ME/CFS pledge.
Unfortunately, the EU Commission would not provide ring-fenced funding. However, a 25 million-call within the Horizon Europe research program was issued on high-burden, under-researched conditions. This call would provide better funding opportunities for ME/CFS research.
A scoping study was commissioned to define what high-burden, under-researched conditions are. EMEC, the World ME Alliance, and other charities provided input to this study. The final list looks like this:
Even before the call was opened, we expressed concern that this list was too broad and the definition of ‘under-researched’ too unspecific. Unfortunately, our concerns turn out to be well justified…
3 (out of 4?) projects from the call have already been announced, receiving approximately 7 million each. They focus on endometriosis, familial hypercholesterolemia, and difficult-to-treat rheumatoid arthritis. You can see the list of funded projects here.
While endometriosis fits the definition of a high-burden, under-researched condition, the other two are questionable. Both conditions are embedded in some of the largest research communities in medicine (for cardiovascular and rheumatic diseases). Their mechanism is largely understood, they have biological or genetic markers and several effective treatment options. Because much is already known about hypercholesterolemia and rheumatoid arthritis, these applications could present their goals, targets, and deliverables in more certain terms than medical conditions that are truly under-researched.
We know of several applications to this call that included ME/CFS research. EMEC was involved in a major consortium that included top ME/CFS experts across Europe. This was a professional and high-quality application that received an excellent review score which unfortunately wasn’t enough to get funding. It turns out that there were more than 100 applications to this call and the 4 that received funding had a near perfect score of 14.5 out of 15 points.
ME/CFS researchers have invested a lot of time and effort in writing high-quality applications, so it is frustrating to see the majority of the funding going to conditions that are not strictly under-researched. We will express these concerns to the new Commissioner. More than 4 years after the ME/CFS resolution, not a single research project with a dedicated focus on ME/CFS has been funded.