Several #MECFS advocates including my husband Bob received an email this afternoon from Dr. Walter Koroshetz, NINDS Director, about the NIH Clinical Study:
Dear colleagues,
Thank you for communicating your concerns. Having spoken to multiple patients with ME/CFS we believe that some of the concerns about the NIH intramural ME/CFS protocol are due to miscommunication on our part.
Please see posted notice. http://www.nih.gov/mecfs/eligibility-requirements-me/cfs-clinical-study-nih
Note that the NIH intent was always that the ME/CFS patients enrolled in the NINDS study would have post exertional malaise and qualify under multiple consensus criteria including the Canadian crieria. Reeves was being used only for stratification purposes. A detailed protocol will be posted soon.
We look forward to working together with the ME/CFS community to develop the science that leads to meaningful solutions for those who are suffering.
Best wishes,
Walter
Walter J. Koroshetz, M.D.
Director, National Institute of Neurological Disorders and Stroke