Author: #MEAction

black rectangle image, the #NotJustFatigue logo is yellow lettering in a black box. On the right hand side the words Community member launching a new website today. website www.notjustfantigue.com at the bottom and the #MEAction logo in the bottom right hand corner.

#NotJustFatigue – Community Member Launching A New Website Today!

#MEAction is excited to announce community member, Elizabeth Ansell, created a new website, #NotJustFatigue, launching today, March 1, 2024! This website was created with the hopes it will help describe ME to those who do not know anything about ME. It is a site for people to share with their family and friends. #MEAction is

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blue rectangle image with the NIH logo in the top left hand corner. the words: NIH MECFS Research Roadmap Update Public comments open until March 8th appear in the middle of the image. the meaction logo is in the bottom right hand corner.

NIH ME/CFS Research Roadmap Update–Public Comment Period Now Open

The NIH ME/CFS Research Roadmap public comment period is open now with a deadline of March 8th.  #MEAction is a member of the ME/CFS Research Roadmap Working Group and for the past several months we have been advocating on behalf of this community within this group. Our Executive Director, Laurie Jones, served on the nervous

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a rectangle image with multiple small hearts in the corners. The words, Valentine's Day Interview with Jamison Hill and Book Promotion. The cover of the book is next to the words. The #MEAction logo at the bottom.

Valentine’s Day Interview with Jamison Hill & Book Promotion

We are excited to bring you a special Valentine’s Day promotion of Jamison Hill’s most recent book, Something’s Wrong with Micah.  #MEAction had the pleasure of having a Twitter chat with Jamison when his memoir When Force Meets Fate came out. We now get to bring this Q&A about his newest book to you. Jamison

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on a red sparkly rectangle image. The words "#MEAction's Volunteer Program Revamped!" are written in an arcade/game font. Sign-Up Today! The #MEAction logo in the bottom right corner

#MEAction’s Volunteer Program Revamped

Exciting news: #MEAction revamped our volunteer program for the new year! We are honored to have wonderful volunteers including people with ME, Long Covid, and other associated conditions as well as our caregivers, allies, and wider communities. Volunteering with #MEAction can and does make all the difference. We invite you to join our program! Our

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#MEAction Writers Inspired by WGI Workshops

Last fall, #MEAction partnered with the Writers Guild Initiative (WGI) to offer writing workshops to twenty-five community members. #MEAction believed this partnership was beneficial to our community because self expression in the disability community is essential and writing allows us to get our thoughts and emotions onto paper. #MEAction recognizes writing as one of the

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I picture of the Health and Human Services Plaque and on the right hand side in a red box, the words, #MEAction Meets with the Office of Long COVID Research and Practice

#MEAction Meets with the Office of Long COVID Research and Practice

On January 17th, 2024, #MEAction convened a constructive meeting with Dr. Ian Simon, the newly appointed director of the Office of Long COVID Research and Practice within the U.S. Department of Health and Human Services (HHS). The Office of Long COVID Research and Practice staff demonstrated a willingness to understand the connection between ME and

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senate hearing room image with the words, Historic Hearing on Long COVID in the Senate overlayed it. In the bottom left corner is the meaction logo and in the top right hand corner is the HELP committee logo

Historic Hearing on Long COVID in the Senate HELP Committee

The U.S. Senate HELP Committee held a historic hearing about Long COVID last Thursday to discuss advancing research and improving patient care. #MEAction contacted the press to alert them to the hearing, and issued a follow-up press release sharing highlights from the hearing, and explaining the connection with ME/CFS. Our Scientific Director worked behind the

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#MEAction UK’s letter to the BBC over the show Dragons’ Den

We are writing to express our deep concerns about a segment featured on an episode of Dragons’ Den, which aired on BBC1 on Jan 18th 2024. The episode in question showcased a product “Acu Seeds” that had a back story where the entrepreneur said she “believed they had aided in her recovery of ME/CFS”. This

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