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Category: Advocacy

white rectangle with the words: Interview with Author Lauren Saikkonen in black font. There is an image of her book cover, Invisible Illness on the left hand side. And a photo of Lauren on the right hand side. Lauren is wearing a red sweater and is smiling at the camera.

Interview With Lauren Saikkonen – Author of Invisible Illness: Coming of Age, Chronic Illness, and a Mother’s Will to Survive

April 29, 2024 No Comments

#MEAction is once again thrilled to share a new book, Invisible Illness: Coming of Age, Chronic Illness, and a Mother’s Will to Survive, with you by author Lauren Saikkonen! This book is an autobiography that covers Lauren’s entire life, but heavily focuses on her battle with Ehlers-Danlos syndrome, ME, and fibromyalgia.  You can purchase this

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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

February 20, 2024 No Comments

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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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

February 8, 2024 1 Comment

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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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

January 25, 2024 1 Comment

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

January 24, 2024 1 Comment

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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Graphic of yellow canary over black and white photo of a coal mine. Text reads "Canary Corps"

CANARY CORPS – Alison’s Story

December 4, 2023 No Comments

Have you registered yet to join us this Wednesday, December 6th at 4pm ET / 1pm PT for a community presentation introducing the Canary Corps program? Ahead of Wednesday’s event we wanted to share with you Alison’s story. Alison Sbrana will be co-presenting this event, and much of the design of Canary Corps has been

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red rectangle. on the left side of the rectangle an image of a desktop computer that features the mepedia home page. the words "Live Now!" are stacked four times and fall behind the desktop image. on the right side of the rectangle, the words " check out the updated, expanded, and revamped mepedia! then there is the #mepedia logo with the words a project of #MEAction at the bottom.

Check out the Updated, Expanded, Revamped MEpedia!

November 15, 2023 1 Comment

Great news! About six months ago, we began a project to update, expand, and revamp MEpedia. Due to a generous grant, we were able to create a project scope, hire respected experts in accessibility and MediaWiki development, and make several important changes to MEpedia! Visit the New MEpedia MEpedia is a vital resource MEpedia is one of the most utilized resources for researchers,

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Graphic of yellow canary over black and white photo of a coal mine. Text reads "Canary Corps"

CANARY CORPS – New Grassroots Program Coming Soon

November 6, 2023 No Comments

I’ve got exciting news to share! In early 2024, #MEAction will launch a new grassroots, peer-run program in the United States to help people with ME, Long COVID, and other infection-associated chronic illnesses find and access local services and support for people with disabilities. This will be an innovative and radical program that is run

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red/orange rectangle image with the words: Apply for 2023 appear in a gray round bubble that lays atop a white box that says NIH Conference Travel Scholarship. Under the box, the words new travel scholarship for providers and medical students to the (NIH) Conference: Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID, December 12- 13, 2023 Bethesda, MD appear. The #MEAction logo is on the left hand side of the image

Announcing: New NIH Conference Travel Scholarship for Providers and Medical Students!

October 26, 2023 No Comments

#MEAction is thrilled to announce a new travel scholarship for providers and medical students to the National Institutes of Health’s (NIH) Conference, Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID, this coming December 12- 13, 2023 in Bethesda, MD. #MEAction is providing this opportunity for one to two promising medical students

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