Zaher Letter

zaher-letter

October has been a busy month at the Solve ME/CFS Initiative with many events taking place in quick succession. The month began with our board meeting in the Washington, D.C., area and segued into meetings with the National Institutes of Health and Senate staff members, which you will read more about in this issue.

Following our Board meeting, I participated in the inaugural conference of the Patient Centered Outcome Research Institute (PCORI), in Arlington, Va., a meeting dedicated to bringing the voice of the patient into research and methodology by incorporating patient input and insights. In many ways, this meeting reflects the national need for patient empowerment—an ethos of our own Solve ME/CFS Initiative research program, which we advance in practice, not in theory.

I cannot think of any disease that is more worthy of representation from patients who have been disenfranchised for far too long. We are heartened that more voices of ME/CFS patients and families, like those of Brian Vastag and Whitney Dafoe, are reverberating louder and more frequently in the mainstream media, including the recent articles in the Washington Post and The Atlantic. We continue to amplify these voices through SMCI research and advocacy channels, like our Humans of ME/CFS website, and look for ways to strengthen our collective voice by working collaboratively with other ME/CFS organizations.

Along these lines, Brian Vastag and Beth Mazur of #MEAction visited our offices in Los Angeles last month to help identify opportunities to work together toward finding solutions for ME/CFS. This week, President Carol Head and I visited Ron Davis’ group on the Stanford campus for the same purpose.

We are capping off the month by supporting the launch of two new ME/CFS research studies with samples from our Solve CFS BioBank and Patient Registry. We are thrilled to be able to help advance ME/CFS research in this way and continue to grow and expand our support to investigators.