Several #MECFS advocates including my husband Bob received an email this afternoon from Dr. Walter Koroshetz, NINDS Director, about the NIH Clinical Study:
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.
Walter J. Koroshetz, M.D.
Director, National Institute of Neurological Disorders and Stroke