Obtaining ME/CFS research funds


I attended the OMF-sponsored Third Annual Symposium on the Molecular Basis of ME/CFS this weekend. There was not much new information on research into ME/CFS provided, but there were a lot of goals and ideas about how the researchers want to proceed that were expressed; they lack necessary funding.

Two researchers, Ron Davis and Maureen Hanson, ended their talks imploring us to contact our legislators. Researchers also thanked and credited the patient community for funding the bulk of research so far.

I don't remember the exact figures, but I believe that NIH funding for ME/CFS is averaging now at around $15 million per year. This is the cost of a single road repaving project in my parts.

The current US federal budget is over $4 trillion. Just to give some perspective, one Black Hawk helicopter is $21 million and a single Apache helicopter is $31 million. More info here: https://militarymachine.com/most-expensive-military-helicopters/

For some additional perspective, OMF announced a goal of raising $20 million in 2020. Researchers cannot bring new talent into ME/CFS research without secure funding in this illness. A graduate student's work and future career drive is based on grant-funding. Right now the field of research is dominated by established researchers who were drawn to ME/CFS often because a family member was impacted by ME/CFS, not because of funding opportunity. Researchers expressed that there is interest in ME/CFS research--ME/CFS is a vast territory that remains unexplored--the problem is that there is no guaranteed funding to make a career in the field.

Sufficient funding will never surface from our over-stretched and often improverished/financially-insecure community. We need federal funds and therefore need to continue making noise; the researchers are asking us to contact our congressional representatives. With an election cycle upon us in the US, I hope some will follow through.

Maureen Hanson went into some depth into the problem at the end or her talk. I hope the video of her talk will be posted soon as it better explains the funding issue. We need dedicated and directed funds allocated from Congress toward ME/CFS research.

Please consider shooting an email--even a short one--to your Representative/Senator.