Letter to Burwell and Collins Demands Funding Equality

Author:

Uniting the ME/CFS community is not easy, but it has never been more important than right now. One thing we all agree on is the urgent need for vastly increased funding at the National Institutes of Health, our nation’s scientific research machine. When two federally funded reports told NIH that there was an “urgent need” to invest in ME/CFS research, a number of advocates seized the opportunity to push even harder for substantive change.
Among the efforts, a recent one was aimed at demonstrating consensus among advocacy groups on a platform of immediate next steps toward full funding at NIH. I worked with many ME/CFS advocacy organizations to fashion a 5-point platform for next steps at NIH and, with endorsement of a broad set of groups, sent it to Secretary of Health Burwell and NIH Director Collins in September.
The 1-page platform builds on engagement by patients, experts and advocates since the release of the IOM and P2P reports. Last spring, more than 500 patients and caregivers sent emails to Secretary Burwell and Director Collins highlighting the “urgent need for research” validated by both panels, calling on them for equal funding. CFSAC, with significant input from advocates, made recommendations to operationalize the IOM report and much more. SolveMECFS hosted a Congressional Briefing with Morgan Fairchild, among other things, and advocates engaged meaningfully with the Senate Appropriations Committee after it zeroed the minuscule funds earmarked to CFS in the CDC budget. MEAction is a welcome new force in catalyzing patient engagement.
The confluence of the two federal reports, the results of the Lipkin/Hornig immune studies, and numerous powerful media stories have created a demand for change that that has rarely been seen before.
I believe it is important to demonstrate our unity, to show the Secretary and NIH at every turn that we are united in our goal of equal funding for the science that can diagnose, treat and cure our disease. The more we act in concert, the more we will achieve.
Editor’s note: We at #MEAction believe in empowering a diversity of views and strategies within the movement. However, there is a strong consensus around the goals of Courtney Miller’s letter and so when she approached us about adding our support, we put the letter to a vote of all registered users of #MEAction. 57 users participated and support for the letter was nearly unanimous.

Facebook
Twitter
WhatsApp
Email

3 thoughts on “Letter to Burwell and Collins Demands Funding Equality”

  1. Please add Chronic Fatigue Syndrome Research Center at Stanford University to the groups signing.

  2. Thanks, Janet and Pat. I will add your organizations. Thank you as well for all you do. Janet, the Post story about your son was very well done from the outside, heartbreaking though it is. Wishing you all better days.
    Courtney

Comments are closed.

Latest News

Happy Pride Month 2022 with rainbow ribbon in a heart

#MEAction Recognizes & Celebrates Pride Month 2022!

#MEAction recognizes and celebrates Pride Month! As a community that welcomes and encompasses all, this Pride Month, we asked members of our LGBTQIA+ community to share what Pride means to them and what they have learned from this movement that they bring with them to the ME movement. Here are a few responses: Kristina Osobka-Stier

Read More »
Severe ME Artist Project 2022 over swatches of gold paint

Severe ME Artists Project 2022!

#MEAction is once again excited to announce our Severe ME Artists Project 2022 that will feature work from those within the severe ME community and will be in recognition of Severe ME Day on August 8th! This project will be an opportunity for those with severe ME to showcase their art work (whether it be

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