USA: News from #MEAction

ahimsa · Feb 1, 2025

Cinders66 said: ↑

For me, this is just so far from what we need charities to be doing
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Folks can give feedback to #MEAction using this contact form:

https://www.meaction.net/contact-us/

Trish · Feb 1, 2025

ahimsa said: ↑

A new project, Share the Love, has been announced for Valentine's Day (Feb. 14):
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Cinders66 said: ↑

For me, this is just so far from what we need charities to be doing
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I was a bit puzzzled by it, but then I thought of it this way.

MEAction is for some pwME probably their only ME/CFS community, and things like this enable those unable to do more active advocacy to participate in a simple community activity. I think of it a bit like our general chat threads. It can be important for isolated sick people to be able to feel part of something.

ahimsa · Feb 15, 2025

New video (about 8.5 minutes long, includes music):

https://www.youtube.com/watch?v=nr_U0D5N9J8

#MEAction email said:

Happy Valentine’s Day! With a day focused on love, #MEAction wants to make sure you feel the strength and power of this community and are reminded of the love and support we all have for each other.

Over the past month, we asked you all to send in an image of a heart with a word(s) that describes why you love the #MEAction community. The response has been very touching and moving!

We are excited to share the video compilation of all the responses with you!

Enjoy this heartfelt message created by you and most importantly for you!

This video is a total of 8 1/2 minutes and includes music. Please use mute if needed.

If video is not your thing, stills of some photos will be shared on our social media platforms.
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For a full text description of the visuals in this video see the YouTube summary.

EDIT: For those who want to see some still images of the hearts sent in you can scroll through the #MEAction Bluesky account:

https://bsky.app/profile/meactnet.bsky.social

ahimsa · Feb 22, 2025

(USA centric)

#MEAction is hosting a Virtual Town Hall on Tuesday, February 25, 2 pm Pacific/5 pm Eastern.

This meeting is "to discuss the impact of recent executive orders and other policy discussions that could affect the ME community."

They will have individuals from #MEAction as well as special guests. The meeting will be recorded and available to watch at a later date.

Register here:

https://us06web.zoom.us/webinar/register/WN_ABR5ol7YQxqn9f36-7dl3w?mc_cid=624f84ea42#/registration

Email announcement here:

https://mailchi.mp/meaction/meaction-town-hall-225-speaker-list

ahimsa · Feb 22, 2025

#MEAction’s Medical Flashcards Featured by CDC!

#MEAction said:

#MEAction is excited to announce that the Anki Flashcards we created about ME/CFS and infection-associated diseases have been recommended by CDC on its new ME/CFS page for medical students! Anki flashcards are a digital learning tool used by medical students to retain medical knowledge.

The deck was created for our #TeachMETreatME campaign with #MEAction Georgia volunteers, #MEAction staff and expert clinician reviewers, and features insightful and crucial information about infection-associated chronic conditions, including ME/CFS, Long COVID, POTS, hEDS, MCAS, and more!

We will be creating a Reddit post Monday, February 24th, 12pm – 5pm EST, where we’ll address questions from the medical student community with our Scientific Director, Jaime Seltzer, Erin Lee, the project lead, and our clinician reviewers as well.
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FYI, there's already a post about these flashcards in our Resources subform:

https://www.s4me.info/threads/cdc-me-cfs-resources-for-medical-students.42339/#post-582645

Since it's rather short notice I also posted about the Reddit Q & A session (planned for Monday, Feb. 24) in the advocacy subform:

https://www.s4me.info/threads/reddi...on-medical-flashcards-on-monday-feb-24.42769/

ahimsa · Mar 7, 2025 at 5:14 PM

Press Release: Advocates Urge Administration to Reinstate Long COVID Advisory Committee

#MEAction said:

#MEAction and the Patient-Led Research Collaborative – leading organizations advocating for people with Long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – delivered a letter to HHS Secretary, Robert F. Kennedy, Jr, this past week, calling for him to reinstate the Long COVID Advisory Committee, which was terminated under a recent executive order.

“This decision undermines efforts to address a public health crisis of chronic disease affecting tens of millions of Americans, and silences critical voices with lived experience and scientific expertise,” said #MEAction Executive Director, Laurie Jones.

HHS Secretary Kennedy made a commitment to prioritize Long COVID at his confirmation hearing, and we are calling on him to honor that commitment by reinstating the advisory committee with its previously selected members — individuals with essential expertise and firsthand experience in navigating Long COVID.

“Long COVID affects at least 20 million Americans, with nearly half meeting the criteria for ME/CFS — one of the most underfunded and under-researched diseases in the country,” the letter states. “The economic toll is staggering, with estimates showing at least $3.7 trillion in lost productivity, reduced earnings, and increased medical costs.”

We are urging immediate action to reinstate the Long COVID advisory committee and ensure those with lived experience have a seat at the table. The health and economic well-being of tens of millions of Americans depend on continued research, support, and policy action.
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Read the full letter to the HHS Secretary here:

https://www.meaction.net/wp-content/uploads/2025/03/Long-COVID-Advisory-Committee-Letter.pdf

ahimsa · Mar 7, 2025 at 5:19 PM

ahimsa said: ↑

#MEAction is hosting a Virtual Town Hall on Tuesday, February 25, 2 pm Pacific/5 pm Eastern.

This meeting is "to discuss the impact of recent executive orders and other policy discussions that could affect the ME community."
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A summary of this meeting (includes a link to the recording) is now available on the #MEAction website.

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USA: News from #MEAction

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