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#NotJustFatigue

@notjustfatigue.bsky.social

250 followers 240 following 10 posts

We are a 501(c)(3) sounding the alarm on ME/CFS through digestible, creative content. This is #NotJustFatigue. Visit www.notjustfatigue.org

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It's ME(Jaime)

@exceedhergrasp1.bsky.social

Many others working behind the scenes made this happen, including @notjustfatigue.bsky.social. We're glad to see that the appropriations language landed in a good place for funding for #MECFS.

Even with knowledge of all the obstacles that remain, it's very good news. /fin

notjustfatigue says, "Big win in the Senate!

After more than a year of advocating for federal research funding, Congress has officially recognized the ME/CFS Research Roadmap-- and is now directing NIH to create a detailed implementation plan. The Senate report also calls for expanded research through the RECOVER Initiative and ARPA-A, specifically naming ME/CFS as a priority. This is a major step forward in the fight for treatments, diagnostics, an answers. The Senate language comes straight from our advocacy and @meactnet-- and shows that your voice is being heard.

The House is expected to release its own version in the coming months before the two chambers reconcile later this year. We'll be fighting to keep this language intact."

August 1, 2025 at 2:29 PM

Reposted by #NotJustFatigue

#MEAction Network

@meactnet.bsky.social

If you are in Maine and living with ME and/or Long COVID (or a caregiver, family or friend, or ally) and interested in meeting with a member of Congress, please fill out this form: forms.gle/G6RArahgpvPW...

@notjustfatigue.bsky.social

Looking For An Activist In Maine

#MEAction is looking for an individual in the state of Maine to help us secure a meeting with Senator Susan Collins. She has been an ally of the ME Community before (co-sponsor on the Senate ME Resolu...

forms.gle

June 17, 2025 at 6:06 PM

Reposted by #NotJustFatigue

#MEAction Network

@meactnet.bsky.social

We’ve currently been working with @notjustfatigue.bsky.social on meetings with the hill on the research roadmap- a two-pronged approach to getting funding for ME in one of the most contentious times in recent history when it comes to research.

Sign the roadmap letter: airtable.com/appEwdLZCdtR...