We wanted to be clear about our communications with NIH since there has been some conflicting information. The founders of #MEAction have never met with Dr Collins, Dr Koroshetz, Dr Nath, or anyone else on the intramural study. We have requested several times to meet with Dr Koroshetz and Dr Nath so that we could share the concerns of the community about many aspects of the intramural study, but have never had a meeting. We have spoken with Vicky Whittemore (member of the Trans-NIH Working Group and CFSAC) and Marian Emr (head of NINDS communications), but neither are involved in any way on the study. We sent in a summary of community questions and the 100+ comments about Walitt’s role on the study to Dr Collins, Koroshetz, and Nath. We have been told that the NIH is reading all emails that are coming in, but don’t know if and when we will get substantive responses to many of the issues that have been raised.
#MEAction and Mary Schweitzer plan on delivering the two petitions on the #MEAction platform about the study in the next week. Now is the perfect time to sign them if you agree with their requests:
Another method to get across your concerns is to ask Dr Nath questions at the April 21st webinar with Solve ME/CFS Initiative. You can register at https://attendee.gotowebinar.com/register/9009984691255834372, then send in questions.