Occupy M.E. describes the NIH’s current plan to address the crisis of Myalgic Encephalomyelitis as “do a little and wait.”
Blogger Jennie Spotila describes the agency’s plan, which was found buried in the NIH 2019 budget request sent to Congress, as follows:
- NIH is going to wait for the new Collaborative Research Centers to lead to more research proposals, rather than investing money to stimulate that research now.
- NIH has no intention of addressing the need for a consensus case definition now, and has chosen an approach that could take a decade or more.
Read more about Spotila’s description of the NIH’s current plan for ME.
We Cannot Wait
Meanwhile, the #MEAction community is taking the matter into its own hands and has issued a comprehensive plan that it plans to deliver to NIH director, Francis S. Collins, within the week. Sign the letter to show your support for this rigorous plan. Deadline to sign is Tuesday, May 22 at 12 p.m. PDT.
The #MEAction plan calls for significantly ramping up research funding to commensurate to the disease burden, which studies approximate at $190 to $250 million. The letter details specific mechanisms that the NIH must take within the next 12 months to reach our key goals, including.
- To validate one or more clinically viable ME biomarkers to increase diagnostic accuracy within 3 years;
- To begin NIH-funded clinical trials of one or more drugs as treatments for ME within 1 ½ years
- To secure FDA approval of at least one treatment for specific usage in ME within 3 to 5 years.