mfairma
Senior Member
- Messages
- 205
The NIH team working on this met with Carol Head and Zaher Nahle of the Solve ME/CFS Initiative last month and got their input. Today, Collins called several patient advocates. Collins has held out his hand - he wants patients involved in research. I am very hopeful we will have opportunities to help with study design (with the intramural NIH study) and possibly with reviewing grant applications for extramural research. It takes people in both camps - NIH and the patient community - who are willing and able to do the work and build a relationship. That has already started.
It is a question of degrees of commitment.
This community has waited too long to accept tokens, even if they get a little bigger. This may be the start of something good, but if that something takes another decade or two to bear any fruit, then we are not winning to the degree we could and should. Will this be the start of our Manhattan project?
The funds committed will be a telling indicator, as is the public rhetoric, as I noted above.
We owe it to ourselves to be circumspect in evaluating the actions of other actors and the nature and pace of change.