Current work
The foundation is not yet open. Two pieces of work are under way ahead of launch. Results from both will be published here once they have been through independent review.
The economic cost of ME/CFS and Long COVID in the United States
In progress
Legislators ask two questions: what does this disease cost, and is the research money proportionate? Published US answers differ several-fold because they rest on different case definitions and costing methods. We are building a multi-year analysis of the cost of ME/CFS and Long COVID, and a comparison of research funding against disease burden across many conditions, on a basis that can be defended line by line.
Measuring craniocervical instability
In progress
Craniocervical instability (CCI) is excessive movement between the skull and the top two bones of the neck, usually because the ligaments that hold that joint are lax or damaged. It is suspected in some people with ME/CFS and is rarely studied, in part because there is no agreed, reproducible way to measure it. We are supporting work on an objective measurement of craniocervical movement from standard imaging, as the step that has to come before any question about treatment.