NINDS Director emails about NIH enrollment criteria today

Author:

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

Facebook
Twitter
WhatsApp
Email

Latest News

black square image with two white lines at the top and bottom of the image. Then another two white lines come out from the sides to the middle over the #MEAction logo and the words, #NotJustFatigue Video Series Elizabeth Ansell Interview.

#NotJustFatigue Video Series: Interview with Creator Elizabeth Ansell

Over the past year, the #NotJustFatigue website, created by Elizabeth Ansell, releases a 10-part, documentary style, short form video series on different aspects involved in living with ME. Titles of the videos include topics such as: You Have No Idea How Serious This Is, Nobody Believes ME, and It’s Not Hysteria: It’s Sexism. In these

Read More »
navy blue square. there are two white lines at the top and bottom of the square. The #MEAction logo in at the top of the image. The words #MEAction Georgia Voice of the Patient in coordination with the Center for Disease Control and Prevention & Emory School of Nursing.

#MEAction Georgia: Voice of the Patient in Coordination with CDC & Emory School on Nursing

Back in September, #MEAction Georgia State Chapter partnered with the Centers for Disease Control and Prevention (CDC) and Emory School of Nursing to host, Voice of the Patient: A Panel Discussion with #MEAction Georgia. This event was a continuation of #MEAction Georgia’s #MillionsMissing 2024: #TeachMETreatME programming. Erin Lee and Liz Burlingame of the #MEAction Georgia

Read More »
a light blue square image with medical instruments/tools as a border (pill bottles, scales, needles, covid protein spike, etc). At the top of the image is the Home Test to Treat Program logo, in blue font: Findings Summary. Below that the #MEAction logo and Body Politic Logo.

Home Test To Treat – Findings Summary

#MEAction and Body Politic collaborated last spring, with a new national telehealth program, Home Test to Treat. We are now able to share initial findings from the program! Here are some highlights: 80K + enrolled in the program across the country! 40K + test distributed 6K + individuals treated for COVID-19 or flu 5.6K+ organizations

Read More »