Communications with NIH

Share on facebook
Share on twitter
Share on email

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.
 

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on email
Email

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

In Memory of Dr. Ronald G. Tompkins MD, ScD

Mourning the loss of Dr. Ron Tompkins

Today #MEAction joins the community in mourning the loss of Dr. Ronald G. Tompkins, MD, ScD, who passed away this week. Ron Tompkins was a clinician, clinical researcher, and friend and ally to people with ME. He was the Sumner M. Redstone Professor of Surgery at Harvard Medical School, Founding Director of the Center for

Read More »
National Institutes of Health campus buildings from above

NIH Long COVID research lacks clear plan to identify and track ME/CFS

MEAction has written to the National Institutes of Health (NIH) expressing our deep concern that the RECOVER Initiative research agenda lacks a clear plan for how to accurately identify or consistently track the onset of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) cases among patients with Long COVID. This is of particular importance because a sizable fraction

Read More »

The Last Two Years Changed the World…

What a year 2021 was! People with ME have always faced formidable challenges: every day combatting stigma, lack of understanding from clinicians, NIH’s and CDC’s low budgetary commitments, and a world of challenges navigating disability on top of symptoms.  It’s no exaggeration to say that 2020 and 2021 changed the world – and the world of chronic,

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top