Vote: USAWG requests to NINDS director

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
 

Facebook
Twitter
WhatsApp
Email

Latest News

DHSC released a new progress Report

DHSC has released an update on the progress of the work underway to support the development of a Delivery Plan on Myalgic Encephalomyelitis / Chronic Fatigue. This is dated from December 2022.You can read the full report using the link below: DHSC Information Bulletin Dec 22 FINAL MECFS updated

Read More »
Gold fireworks lighting up over a black background. The words, TOP HITS 2022 is in the center in white lettering. the words: #MEAction accomplished a lot last year is undernether with the #MEAction logo

Let’s Look at #MEAction’s Top Hits from 2022

As we ring in the new year, it is a wonderful time to reflect on how much #MEAction accomplished in a very busy and exciting 2022! There are so many wins to share, so we decided to narrow down the list to our TOP HITS! ——————- #MILLIONSMISSING 2022: * Bringing together the powerful Virtual #MillionsMissing

Read More »
A photo from Millions Missing Scotland of a group of 20 protestors outside the Scottish Parliament. They’re looking serious and holding signs that say Millions Missing, and a pledge signed by MSPs. Many are wearing red ME Action t-shirts. A yellow icon of a person is overlaid next to them with an arrow pointing to it and the words ‘Could it be your MSP?’ A red banner along the bottom says ‘Share your story and ask your MSPs to stand up for people with ME.’

Ask your MSPs to stand up for people with ME

Sue Webber MSP’s motion about ME will be debated in the Scottish Parliament on Thursday 2nd February – and your MSPs should be there! The motion calls on the Scottish Parliament to recognise the outcomes and recommendations of the stakeholder report on ME, including education of healthcare professionals and development of specialist services. We’re pleased

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