November 20th Update: Thanks to all of our members who voted in this poll. A significant minority of our members voted against #MEAction signing the letter, so we have decided to not formally sign the letter. We are still working out what policies make sense and really appreciate all of our members’ flexibility and openness as we work out the processes that can best represent our members.
Dear #MEAction users,
Please find below a letter to NIH which thanks Dr Collins and Dr Koroshetz for their October 29th announcement while also making clear that we need increased funding and follow-through to ensure parity with other serious diseases.
We are taking a vote of all registered users as to whether #MEAction should join the other organizations and formally sign this letter. Please respond by Wednesday, November 18 at 11:59pm US EST.
#MEAction Georgia: Voice of the Patient in Coordination with CDC & Emory School on Nursing
January 8, 2025
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Back in September, #MEAction Georgia State Chapter partnered with the Centers for Disease Control and Prevention (CDC) and Emory School of Nursing to host, Voice of the Patient: A Panel Discussion with #MEAction Georgia. This event was a continuation of #MEAction Georgia’s #MillionsMissing 2024: #TeachMETreatME programming. Erin Lee and Liz Burlingame of the #MEAction Georgia
4 thoughts on “Poll: Letter to thank NIH for Announcement”
So far, lots of promises that will hopefully come true. But there’s been no action that we should thank them for yet. If it never comes, they’ll be able to use our thank you to show that they’ve appeased us, when they actually haven’t. If the action does come, we can thank them then. No thanks until they’ve shown us the money!
I agree with Sonya. Collins and the rest of the NIH have done nothing to say thank you for. On the contrary, they have been secretive and manipulative. When they actually do someething for the good of ME patients, I might consider.
For the 28 years I’ve been ill I’ve seen little progress from the NIH. I want to hear they truly acknowledge ME is a serious illness affecting thousands of people and be serious about the need for funding research for better treatment before I say thank you. I stil have a doctor that feels if I push myself more I could get better. The NIH has done so little in all these years I’ve tried to stay hopeful.
I want to thank ME Action staff on your decision not to sign. Your sensitivity to the voice of the minority and cautious reflection on developing policies that help ME Action as an organization to remain neutral but effective forum for patients to join together, is much appreciated.
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