US Petition: Funding dedicated to the research of Chronic Fatigue Syndrome 'ME/CFS' to develop a diagnostic test, treatment, and Cure

[Andy]

Spotted this on social media.

HMD has noted a “paucity of research” on ME/CFS and that “more research is essential”; only 1% of the needed funding has been assigned to research Chronic Fatigue Syndrome. The Cause of ME/CFS is unknown, there is no diagnostic test, treatment, or cure approved by the FDA. ME/CFS is about 4 times more prevalent in women than in men; more often affecting individuals between 35 to 50 yrs old. A chronic disease that persists for decades and leaves 1⁄4 of patients housebound or bed-bound. Between 836K and 2,5M individuals of all ages, races, and sexes in the United States are believed to be afflicted with ME/CFS. Medical expenses and lost productivity cost the economy of the United States $17B-$24B annually. We are petitioning Congress to assign funds to build a Facility to research ME /CFS

https://petitions.whitehouse.gov/pe...fs-develop-diagnostic-test-treatment-and-cure

 

[Snowdrop]

I'm finding this a bit odd.

How are people to know the petition is there beyond as you did @Andy 'spot it'? Maybe it's out there on social media somewhere.

The statistical facts don't seem at all up to date either. The 4:1 ratio for female/male. The peek incidence age could be right but I think we don't really know for sure do we? I think there are more certain/different things they could have said with more impact.

Would be good to know more about the person(s) behind petition and more specifics of what they want and why. I mean, it can be a very good idea or would it be more useful to invest money in doing collaborative research where infrastructure is already present? (I don't know the answer to this)