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

greyish rectangle image with the words: #MEAction is Excited to Announce: Pillow Writers Anthology Issue 1: Near-Life Experiences. In a small grey square the words Get Your Copy Today! with a black line underneath. On the right hand side of the square is the image of the book cover that has a water color of flowers. the #meaction logo is at the bottom of the image.

Pillow Writers Anthology, Issue 1: Near-Life Experiences Available Now!

The Pillow Writers Anthology, Issue 1: Near- Life Experiences is a new literary magazine in the disability community. This inaugural issue features poems, stories, and essays by 17 writers who call themselves the Pillow Writers. The Pillow Writers are an international group of writers living with the neuro-immune diseases of myalgic encephalomyelitis (ME) and Long

Read More »

#MEAction UK’s email/letter to Andrew Gwynne MP

To: Andrew Gwynne, Under Secretary of State for Public Health and Prevention Subject: Treatment of Very Severe ME  email [email protected] Dear Andrew Gwynne,  Thank you for being an ally to people with ME  (myalgic encephalomyelitis) and Long Covid and committing to ensuring publication of the DHSC ME/CFS Delivery Plan without more delay.  We trust your

Read More »
Scroll to Top