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

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

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.

ahimsa · Mar 15, 2025

#MEAction article about Long COVID Awareness Day

#MEAction said:

At the start of the pandemic, we launched our #StopRestPace campaign to educate clinicians and the Long COVID community about the importance of pacing.

We are working hard to ensure that NIH’s RECOVER program – a $1.15 billion research fund for Long COVID – builds on existing research and expertise about ME/CFS.

We merged forces with the Long COVID advocacy group, Body Politic, to continue its vital advocacy – most recently, activists from this space have been working hard on our community care programs to ensure people with Long COVID and ME have access to resources on the state level.

Most recently, we have been fighting to protect the Long COVID Advisory Committee at HHS, which was recently dismantled.

Today is Long COVID Awareness day, and we want to lift up the importance of Long COVID advocacy.

We ask you to share this video created by #MEAction volunteers today and check out other organizations that fight for Long COVID day in and day out ...
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(line breaks added)

Here's the video mentioned in the quote above. In this video five patient-advocates read an open letter to Health and Human Services Secretary Robert F. Kennedy Jr.:

https://www.youtube.com/watch?v=hQn3kqyAT6w

ahimsa · Mar 22, 2025

Trump Cuts Funding for ME/CFS Centers at Columbia University

#MEAction said:

We are writing to you with an urgent call to action.

The Trump administration has cut funding for the Center for Solutions for ME/CFS at Columbia University as part of a broader $400 million funding termination at the university. This devastating decision includes the loss of NIH funding for one of the nation’s few Collaborative Research Centers focused on ME/CFS, led by Dr. Ian Lipkin.

The closure of this center is a significant setback for ME/CFS research, which is already critically underfunded relative to disease burden. The research center for ME/CFS was conducting groundbreaking studies, including:

A longitudinal study tracking symptom severity in ME/CFS patients and controls.

Research on past exposure to infections using the Department of Defense Serum Repository.

A genetics study comparing DNA samples from ME/CFS patients to healthy controls.

#MEAction’s Scientific Director, Jaime Seltzer, commented on the defunding of the ME/CFS Center for Solutions in the Stat News article.

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#MEAction urges us to take action. Note that the first item is meant for US citizens but sharing information on social media can be done by anyone.

#MEAction said:

Contact your Congressional representatives to demand NIH funding for ME/CFS and explain why it is personally so important to you. Find your members here.

Share this message widely to raise awareness about what’s at stake for millions of patients worldwide; forward this email, write posts for social media, and share the article in STAT News about these cuts.

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Update: The STAT News article is behind a paywall, but here's a PDF version from #MEAction:

https://www.meaction.net/wp-content...lumbia-over-Trump-cuts_-www.statnews.com_.pdf

ahimsa · Mar 22, 2025

Volunteer’s Bakery Spreads ME Awareness + Raises Funds

#MEAction said:

#MEAction Georgia volunteer, Cory Anderson-Sweeney, uses her Baby Deer Bakery to spread awareness about ME and her Cookie of the Month Club to help raise funds for #MEAction. We were inspired by her journey and we hope you will enjoy the scrumptious look into her story in her own words.
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Very short summary:

Cory describes getting sick in 2022 with Long Covid. She stumbled across a tweet from Liz Burlingame, found out about the #MEAction group, and joined the Georgia chapter. Later she found out about the yearly Blue Sunday tea party (raising money for ME/CFS organizations) and joined in.

This year's Blue Sunday takes place on May 18, 2025, the Sunday after ME Awareness Day.

Follow #BlueSunday and #BlueSunday2025 on social media.

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Hutan · Mar 22, 2025

ahimsa said: ↑

This devastating decision includes the loss of NIH funding for one of the nation’s few Collaborative Research Centers focused on ME/CFS, led by Dr. Ian Lipkin.
The closure of this center is a significant setback for ME/CFS research, which is already critically underfunded relative to disease burden.
...
#MEAction urges us to take action.
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Something to be aware of is that the $400 million of funding cuts seems to be a negotiating ploy by the Trump government to get the university to do what it wants. It looks as though the university's acquiescence to the demands will result in at least some of the funding being reinstated. I don't think we should assume that the Center will close (or even has closed), as the #MEAction communication suggests.

I feel that MEAction may be hyping up the situation and causing people with ME/CFS unnecessary despair about this, at this time.

This seems to be a rapidly evolving situation. More discussion on this issue here:
USA: Center for Solutions for ME/CFS - news and updates from Columbia University's NIH funded center

ahimsa · Mar 22, 2025

@Hutan, I try to just report what #MEAction says and not editorialize too much. I have no idea whether this particular concern is overhyped or not!

That said, while it may be true that this administration is merely doing some kind of negotiation to get what they want, I do NOT trust them to negotiate in good faith.

And even if it's just a negotiating ploy, and the funding will not end up not getting cut, I think it's important for politicians to hear an outcry from as many constituents as possible that these funding cuts are unacceptable.

On a more general note, I don't think that an urgent call to action is equal to telling folks that things are hopeless. I don't want anyone (whether it's folks with ME/CFS or anyone else) to feel hopeless or helpless! Hopelessness often leads to doing nothing because people think their actions don't matter.

Cynicism is a tool of the status quo. If you want nothing to change the best thing to do is to convince everyone that change is impossible.

I want folks to believe that change is possible and that they should take action - but only if and when they are able to act, no guilt! Sometimes you are not able to do more than just survive and that's okay. But if you can act, don't think that it's worthless. Many small actions do add up.

I hope this makes sense and is general enough that it does not break any "no politics" rules.

Hutan · Mar 23, 2025

No criticism of you was meant @ahimsa. And I certainly agree that the situation with Columbia is not good.

But, the sentences I quoted make it sound as though the Center is definitely closing, that it definitely won't be funded and doesn't have a future. I don't think we know that. I just think there needed to be more clarity about what is actually happening, what support the CRC has from then NIH and the university, before people with ME/CFS are told this:

This devastating decision includes the loss of NIH funding for one of the nation’s few Collaborative Research Centers focused on ME/CFS, led by Dr. Ian Lipkin.

The closure of this center is a significant setback for ME/CFS research, which is already critically underfunded relative to disease burden.
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and are called upon to act.

ahimsa · Mar 23, 2025

@Hutan, I see your point, but I think it's difficult to get the wording just right when things are happening so fast.

I mean, perhaps they could have said something like "The closure of this center would be a significant setback" instead of using the word is, since it was still a threat, not a done deal.

But I can understand treating threats as facts since so many of the threats over the past few months have indeed been carried out in one way or another.

And I see no downside in US citizens contacting their congress reps to report their concerns about this issue, whether it's about the threats to cut the research funds or the mask ban that Columbia University agreed to as part of negotiation to stop these cuts. Yes, the mask ban supposedly has a medical exemption, but I don't think I want police officers determining whether someone's mask is legal or not.

Even if it turns out the funds get restored (decision still pending) this whole situation is still bad. Who wants to live under constant threats of funding cuts? Politicians may change their position if enough of their constituents contact them with concerns.

ahimsa · Mar 29, 2025

Another action item:

White House Halts Funding for Long COVID Grants

#MEAction said:

The White House has abruptly announced that it is terminating funding for NIH RECOVER grants studying Long COVID that had been awarded in 2022 and 2023, effectively stopping 45 studies that were already underway and almost complete. That means the information is there, but it may never get to the public.
...
The White House also withdrew funding for grants at National Institute of Allergy and Infectious Diseases (NAID) and CDC to do with both COVID and Long COVID. Grant termination letters were sent to the principal investigators for 29 grants at NIAID. The federal administration also withdrew public health grant funding from the CDC promised to state public health agencies. The initiatives supplied by this funding were diverse, but all were related to COVID or Long COVID, and included vaccinations and public education.

The White House halted this Long COVID studies despite promises from HHS Secretary, Robert F. Kennedy, Jr to continue prioritizing Long COVID.
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Note: News is moving quickly and I think that some of these have already been restored:

UPDATE: RECOVER Long COVID pathobiology grants restored (The Sick Times)

But if you're in the USA you can still contact (email/call) your senators and congressional rep to object to this chaos (cut funds and then restore them) in research funding.

ahimsa · Apr 4, 2025

Planning has started for Millions Missing 2025.

#MillionsMissing 2025: Sending Out An SOS

#MEAction said:

This #MillionsMissing, we are launching a campaign that is largely focused on the seismic cuts being made to research funding, healthcare, and disability services in the U.S.

We know that the state of U.S. research institutions will have a massive impact on whether we are able to advance research for myalgic encephalomyelitis (ME) and Long COVID over the next decade. This will impact everyone globally.

We encourage you to join in the fight as we send an SOS to our governments to Save our Support Systems. Save our Science. Save Our Society!

And we encourage you to turn out in your own cities with your own impactful #MillionsMissing demonstrations calling on your own governments to invest in ME research and care. #MillionsMissing protests have always been so incredibly powerful, creative, and moving, and in these uncertain times, our community must continue to beat the drum for ME!

Join Us for #MillionsMissing 2025

(USA) Join the protest at the Capitol in Washington, D.C.

Host your own #MillionsMissing protest or gathering

Show up on social media on May 12th

Get creative—create SOS art with messages directed at your government/elected officials

Check out UK’s #MillionsMissing campaign—coming soon!

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You can register now for one of two planning meetings scheduled for Thursday, April 10:

First Meeting: April 10, 12 pm Pacific Time / 3 pm Eastern Time

Second Meeting: April 10, 3 pm Pacific Time / 6 pm Eastern Time

ahimsa · Apr 3, 2025

Virtual Interview + Q&A with Stuart Murdoch

#MEAction said:

Stuart Murdoch, from the band Belle and Sabastian, will be interviewed by #MEAction Minnesota’s State Chapter Leader, Terri L Wilder, about his recently released novel, Nobody’s Empire, on Saturday, April 19th at 1 pm ET/6 pm GMT.

We hope you join us for this virtual event to learn more about his debut novel. Tickets are available for this event for a suggested donation, where you are able to give and receive a ticket for an amount that works best for you.
...

Book Giveaway: Anyone who purchases a ticket or fills out the form below [link to form is on the website] will be entered into a chance to receive a copy of this book! This giveaway is open to all residents living in the US, UK and Canada.
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Dolphin · Apr 6, 2025

MEAction Network:

A reminder for those participating in upcoming protests and those planning protests- #MEAction offers a guide: How to Protest with ME And other Energy-Limiting Chronic Diseases guide: https://ow.ly/cV0z50V9SP7

#MEAction’s guide is for people who are planning a protest, demonstration, or activism to include people with ME and other energy-limiting chronic diseases.

The second part is a guide for those planning to attend a protest that have ME/CFS. PSSSTT... News about #MillionsMissing coming very soon. #pwME #activist #disability #MECFS #LongCovid #MyalgicEncephalomyelitis #protest

Dolphin · Apr 6, 2025

Join our Partner Caregivers (all caregivers of #pwME #LongCovid #IACCs etc. welcome) meeting April 6 at 3 pm ET where we're discussing "How to Get Involved with ME/CFS and Long COVID Advocacy" with @meactnet Laurie Jones and @PlzsolveCFS Emily Taylor.
https://www.meaction.net/event/me-partner-caregivers-support-group-2025-04-06/

ahimsa · Apr 10, 2025

An updated message from #MEAction about planning for Millions Missing 2025
(about events planned in the USA)

Why We’re Sending out an SOS this #MillionsMissing

#MEAction said:

On May 12th, #MEAction and the #MillionsMissing are sending out an SOS to Congress to Save our Support Systems. Save our Science. Save Our Society.

HERE’S WHY:

Healthcare, research funding and accessibility were already incredibly fragile for people with myalgic encephalomyelitis (ME), Long Covid and the disability communities. Now, we are seeing constant threats to the infrastructures that sustain our communities – threats to our healthcare & home services, threats to our research funding, and threats to our ability to access disability services.

We are organizing a protest in front of Congress and rallies across the U.S. on May 12th to pressure Congress to stop the bleeding, and support our communities.
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Two planning meetings are scheduled for today:

Meeting #1: Thursday, April 10 at 12 pm Pacific / 3 pm Eastern

Meeting #2: Thursday, April 10 at 3 pm Pacific / 6 pm Eastern

I'm planning to attend the second meeting listed.

I will try to remember to post about it in the Advocacy forum, either later tonight or sometime tomorrow.

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