Vote: USAWG requests to NINDS director

Share on facebook
Share on twitter
Share on email

The US Action Working Group (USAWG) is submitting a letter to NINDS director Walter Koroshetz detailing a list of requests relating to patient participation, extramural funding and the intramural research agenda.

You can read that list of requests here.

All USAWG actions are opt-in. We would like to poll active #MEAction members who are American citizens or residents to determine whether #MEAction should sign onto this letter. #MEAction will sign the letter if at least 80% of voters agree. DEADLINE: Tuesday, March 1st

Should #MEAction sign this proposed lists of requests?

 
Current signatories include: 
Courtney and Robert Miller
Solve ME/CFS Initiative, Los Angeles, CA, national association
Health Rising, online patient community
Massachusetts CFIDS/ME & FM Association
Open Medicine Foundation, Agoura Hills, CA
Pandora Org, Inc., Traverse City, Michigan
ProHealth, online patient community
Simmaron Research, Incline Village, NV
Wisconsin ME and CFS Association, Inc.
Mary Dimmock
Claudia Goodell, Race to Solve ME/CFS, online network
Billie Moore, New Jersey ME/CFS Association Advocacy Chair
Jennifer Spotila, JD
Denise Lopez-Majano, Speak Up About ME
Lily Chu, MD, MSHS – Independent Consultant – San Francisco, CA
Donna Pearson, Patient Advocate
Gail Cooper, Oakland, CA
Sonya Heller Irey, MPIA
 

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on google
Google+
Share on email
Email

Leave a Comment

Your email address will not be published.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

Latest News

Sign petition To Fix ME/CFS tracking In US!

In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the

Read More »

NICE announces roundtable event to ensure implementation of ME/CFS guideline

NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine

Read More »

#MEAction & 6 ME Orgs Call for CDC to Change How it Tracks ME/CFS

Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM).  Today, ME/CFS does not exist in the US ICD-10-CM. Instead,  most US doctors assign the code for chronic fatigue

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