As you are able today, please give to this GoFundMe with a one time gift or use the monthly recurring donation option. And kindly share with others in your personal circle.
Every gift helps and I am so very grateful to all who have given so far! 💛
#StandByMEcfs
www.gofundme.com/f/financial-...
When people with lived experience of ME/CFS have a strong and central role in clinical research, our perspectives change what gets built and what gets prioritized.
ME/CFS care has been shaped for far too long by under-recognition, stigma, and outdated assumptions. Building tools that clinicians actually use—tools that reflect what patients experience—requires lived experience leadership at the table from day one.
A snippet from our upcoming book. Sharing the stories of those living with myalgic encephalomyelitis.
Hurry, hurry. Less than 2 weeks to go before the deadline for in-person registration to the Young EMERG symposium for early career researchers in ME/CFS (25th & 26th May), Hinxton Hall, Cambridge #pwME #MEcfs
Dans 1 mois, nos ambassadeurs solidaires débuteront leur défi : celui de gravir les Alpes pour rendre visible l’Encéphalomyélite Myalgique !
Ludwig Stanford’s @howardychang.bsky.social presented his lab’s research at #AACR2026 on how ecDNAs, free-floating DNA circles that are unique to malignant cells, transform the genetics of cancer cells to induce genomic instability, accelerate tumor evolution and drive resistance to therapy.
#CanSky
In case you missed it, Inside the Writers Room with the 98th Academy Awards is now available to watch on our YouTube channel: https://youtu.be/giLlR7iGYUs?si=Bp-bixxhOyQXT-08
Tune in to hear how the team crafts the jokes, sketches, and monologue for Hollywood’s biggest night for film.
It's been three and a half decades since I contracted the flu, probably a virus, that stole my active life. I got sick & never recovered. Today is my M.E. anniversary, my "sickiversary." People with Long COVID are only beginning a journey that for me has lasted 35 years. #millionsmissing
Coming soon... Our book was written in community sharing our experiences of living with myalgic encephalomyelitis
9 million Americans have ME/CFS. There are still no FDA-approved treatments. This year, Congress can change that. Here's what we're asking for in FY27 appropriations: 🧵
Blue graphic with an image of a absentee ballot in the background reading "Millions of people depend on voting by mail, including: People with disabilities People juggling multiple jobs Seniors People without access to transportation Service members and their families People in rural areas And more President Trump shouldn’t be making it harder for us to vote."
President Trump’s new executive order attempts to restrict mail-in voting, which would make it more difficult for millions of people to cast a vote.
We’re taking him to court to protect our right to participate in our democracy.
As you are able today, please give to this GoFundMe with a one time gift or use the monthly recurring donation option. And kindly share with others in your personal circle.
Every gift helps and I am so very grateful to all who have given so far! 💛
#StandByMEcfs
www.gofundme.com/f/financial-...
Call to action urging Congress to increase funding for ME/CFS research and support CDC and NIH programs in FY27.
🚨Deadline is tomorrow!🚨
Tell your Senators to sign the Dear Colleague letter in support of ME/CFS research funding. Contact them by April 15th with our easy-to-use action tool here:
https://solvecfs.quorum.us/campaign/160282/
Clinical care guide for managing ME/CFS and Long COVID, A Decade of Expertise offering patient guidance.
Over a decade of clinical expertise, distilled into one guide. BHC’s Clinical Care Guide is a practical roadmap for navigating ME/CFS, Long COVID, fibromyalgia & related conditions. Free to download, free to share. 💙
Download: https://bit.ly/4jScKFu
#MERC @openmedf.bsky.social.
The Elakha Alliance is honored to be featured in the new Smithsonian exhibition, highlighting our efforts to restore sea otters to the Oregon coast and the deep cultural significance they hold for our coastal Tribes.
#seaotter #elakhaalliance #Indigenous #oregon #smithsonian #washingtondc #pnw
This prompt is so quick. Just takes a few moments. #MECFS #LongCovid
Contact your senators by April 15th! Info from our friends at @solveme.bsky.social below!
Building of NIH with red overlay. Text in white over the image: "#MEAction to meet with NIH Director during #MillionsMissing Week. Thank you to all who signed our letter!" #MEaction logo in top center.
We are excited to announce that #MEAction has secured a meeting with the NIH Director, Dr. Bhattacharya, on May 13th to discuss the implementation plan and funding for the NIH ME/CFS Research Roadmap.
Thank you to all who signed our letter!
https://ow.ly/7hFO50YJ0m9
#pwME #MECFS #NIH
Call to action urging Congress to increase funding for ME/CFS research and support CDC and NIH programs in FY27.
Tell your Senators to sign the Dear Colleague letter in support of ME/CFS research funding. Contact them by April 15th with our easy-to-use action tool here:
https://solvecfs.quorum.us/campaign/157943/
TALK TO THE PEOPLE MAKING THE PLAN.
Even if you are aware and highly involved with the work of the Universal Health Plan Governance Board, the process is long, involved, and confusing.
Oregon is on track to be the first state to transition to a universal healthcare system, and the time is now.
A white pole that says May Peace Prevail on Earth in different languages surrounded by tall trees.
@europeanmealliance.bsky.social EMEA has been selected as a participant in the @whoeurope.bsky.social Public Health Innovation Platform, within the “Policy, Governance & Financing” thematic group.
This is not a symbolic appointment. It provides EMEA with a formal seat at a WHO-hosted table where
Starting soon!
Photo in top right corner of a man with brown hair and beard wearing a red 'Still Sick Still Fighting' shirt. Text against cream background reads:"MEAction Advocacy Director, Ben HsuBorger, will be a panelist for Grassroots Project Webinar: An Overview of H.R. 1. One-hour walkthrough and overview of H.R. 1, focusing on how the legislation pertains to people with disabilities. Monday, April 12 2 pm ET."
#MEAction’s Advocacy Director, Ben HsuBorger, will join a national webinar hosted by The Grassroots Project to discuss how the H.R.1 funding bill passed by Congress will affect disability communities. Join on April 13th at 2 pm ET.
See more & register: https://ow.ly/474550YH8kV
#disability #pwME
