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ahimsaahimsa_pdx@disabled.social
2025-07-15

"Severe ME Artists Project 2025"

meaction.net/2025/07/10/severe

#MEAction has announced their Severe ME Artists Project for 2025 in recognition of Severe ME Day on August 8th.

Anyone who identifies as having severe ME can participate.

If you need help submitting your artwork send email to sMEartistsproject@meaction.net

Submissions are due by July 24.

@mecfs

#MEcfs #PwME #SevereME #MyalgicEncephalomyelitis #Art #ChronicIllness

Tom Kindlontomkindlon@disabled.social
2025-07-13

#MEAction has announced their Severe ME Artists Project for 2025 in recognition of Severe ME Day on August 8th. Anyone who identifies as having severe ME can participate. Submissions are due by July 24.
meaction.net/2025/07/10/severe

@mecfs #mecfs #SevereME @severeme

ahimsaahimsa_pdx@disabled.social
2025-07-12

Policy asks:

- Restore funding for Congressionally Directed Medical Research Program (CDMRP) & protect ME/CFS as a topic area

- Protect & restore the CDC’s Chronic Fatigue Syndrome Program

- Fund the NIH’s ME/CFS Research Roadmap (in collaboration with #MEAction and #NotJustFatigue)

- Support 10-year follow-up to the 2015 IOM/NASEM report

- Ensure ME/CFS is included in NIH restructuring discussions

Details:

solvecfs.org/wp-content/upload

@mecfs @longcovid

3/n

#USPol #MEcfs #LongCovid #POTS

Tom Kindlontomkindlon@disabled.social
2025-07-11

From @meactnet :

#MEAction is proud to bring you our Severe ME Artists Project 2025 that will feature work from those within the severe ME community and will be in recognition of Severe ME Day on August 8th! We have all the details here and we are happy to help you submit your work: meaction.net/2025/07/10/severe

#mecfs #PwME @mecfs #SevereME

Brian Vastagbrianvastag@sciencemastodon.com
2025-06-24

Got a press release from #MEAction today saying the only #LongCovid clinic in North Carolina, at UNC, is closing. The clinic has seen 3500 people, 70% women, and 43% had stopped working.

Dire.

ahimsaahimsa_pdx@disabled.social
2025-06-24

@JustGrist @mecfs

Not sure whether these links are too basic but your friend could start with the CDC:

cdc.gov/me-cfs/about/index.htm

#MEAction is also a good source:

meaction.net/learn/what-is-me/

Bateman Horne Center is another source:

batemanhornecenter.org/educati

I don't know much about how accessible these web pages or the handouts are.

Tom Kindlontomkindlon@disabled.social
2025-06-15

"Minnesota’s Long COVID Funding Saved from Elimination"

The first-in-the-nation #LongCOVID program, run by the Minnesota Department of Health (MDH), has been saved from budget cuts. “Advocacy works,” said Terri Wilder, chair of #MEAction’s Minnesota chapter

thesicktimes.org/2025/06/11/mi

@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain
@covid19 #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2

ahimsaahimsa_pdx@disabled.social
2025-06-13

A protest guide from #MEAction for folks with ME/CFS, Long Covid, and other chronic illnesses that cause limited energy:

meactions.org/_files/ugd/b5886

"We hope this guide can help activism become more intersectional and enable those attending events to do so as safely as possible."

@mecfs @longcovid

#USPol #MEcfs #LongCovid #POTS #Fibromyalgia #NEISvoid #ChronicIllness #Disability #Resist #Protest #WearAMask

Why? All people deserve to have a voice and speak out for what they believe in or ways they want to seek change. Not everyone has equal opportunities to do that. Often some of our most important voices get left out of the collective. We need to ensure all people and their voices, no matter how they need to be expressed, are included.
ahimsaahimsa_pdx@disabled.social
2025-06-03

@longcovid @mecfs
More quotes:

"This gap in clinical education isn’t just an Australian issue — it’s global. In the US, training initiatives like Project ECHO have made strides in supporting providers but are now facing potential cuts under the Trump administration. Meanwhile, advocacy groups and research centers are stepping in…

a campaign from ME advocacy group #MEAction aims to educate healthcare professionals about ME and its connection to Long COVID"

#LongCovid #MEcfs #ChronicIllness

"I’m not asking for miracle cures. What I want is simple: to be heard, to be taken seriously, and to have access to timely, informed care that recognizes the reality of these diseases."
ahimsaahimsa_pdx@disabled.social
2025-05-31

New video from #MEAction

"The #MillionsMissing Share Their Stories 2025"

youtube.com/watch?v=BTCqXA1p8O

"…a small sampling of the Millions Missing. You sent in your photos and a few words for us to display at #MillionsMissing 2025.

These stories deserve to be told. Each person deserves to be seen. And know that they represent so many others."

Still images here:

meactions.org/the-millions-mis

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC #MEAwareness #MillionsMissing #Disability #DisabilitySOS

MEActNOWMEActNOW
2025-05-30

👏🏼Success for Scotland Campaign!

The ScotGov withdraws outdated guideline and endorses NICE. The Scottish gvmt has withdrawn their incorrect Good Practice Statement on ME/CFS.

Thanks to Jenni Minto, Minister for Public Health for her support


Patient-Led Researchpatientled
2025-05-21

Last week, PLRC members Gina and Michael participated in the protest, calling on officials to safeguard essential supports like Medicaid, home care, research funding, and open science.

These systems—already fragile for many in our communities—are now at serious risk of collapse.

Visit @meaction.net for more information.

Gina who has long dark hair and wearing a black mask kneeling next to Michael who is wearing a blue mask, hat and sunglasses sitting in a wheel chair, both holding MEAction posters depicting an illustrated Statue of Liberty sinking to her crown in bright red liquid, holding the torch above an ocean of red next to the words " I am one of the Millions Missing. Save our Support Systems". S.O.S is boldly shown in red above her head.
ahimsaahimsa_pdx@disabled.social
2025-05-17

Email update from #MEAction

"Millions Missing 2025: SOS - The Signal Was Sent!"

mailchi.mp/meaction/millionsmi

Lots more photos and videos - from the protest in DC, from folks who posted from home, and from other countries.

Also includes updates on meetings with congress, more signatures on the #MEAction letter to NIH, the fight to save Medicaid from budget cuts, and more.

@mecfs

#MEcfs #LongCovid #MillionsMissing #Medicaid #SaveMedicaid #DisabilitySOS

The signal was strong! #MEAction wants to send out a huge thanks to everyone who participated and continues to take action in response to this year’s #MillionsMissing campaign. This year, our goal was to send an SOS signal to Congress and the world! Our support systems, our science, and our society needed saving…and we were not going down with the sinking ship, without a fight! This community answered the call. You showed up to make sure the SIGNAL was heard loud and clear. This email is very long as it contains a lot of images. Take your time scrolling and come back later, if needed.
Brian Vastagbrianvastag@sciencemastodon.com
2025-05-13

Story on yesterday's protest by #MEAction -

thesicktimes.org/2025/05/12/mi

ahimsaahimsa_pdx@disabled.social
2025-05-13

PS. If you want to make a donation to an ME/CFS group (only if you can afford it!) then here are some links:

#MEAction
meactions.org/millionsmissing-

Solve M.E.
solvecfs.org/donate

Bateman Horne Center
batemanhornecenter.org/donate/

Open Medicine Foundation
omf.ngo/

#MEcfs #MillionsMissing #WorldMEDay #MEAwarenessDay #Charity

Robot DiverRobotDiver@starlite.rodeo
2025-05-12

Today is M.E. awareness day.

I was diagnosed with M.E. and P.O.T.S. in 2020. Prior to my diagnosis I was a seagoing worker in the arctic, an avid backcountry hiker and a busy musician in spite of both severe PTSD and fibromyalgia.

The summer of 2019 I got sick while working up north. It progressed to a terrible lung/strep infection. I was treated four times following that for walking pneumonia and became sick with another lung infection in late 2019 after travelling in Vietnam.

I kept trying to push through my exhaustion, returning to sea in spite of my symptoms. We live in a society that believes your value is directly tied to your work and productivity. It's a cruel and ableist lens to view human worth that way.

My body has never fully recovered. M.E. has been a rollercoaster of ups and downs and I feel like I've missed out on so much in the last five years of my life. I have tried to go back to some sort of career several times since then only to find myself in worse shape. These last few months of deep rest are the first time I've managed to find some balance with my illness. Sometimes I use a cane. Sometimes I don't. My mobility shifts like the wind. Please know that you aren't alone and many people with long covid may also be experiencing M.E.

It's easy to miss our existence. We just aren't there anymore, and it shouldn't have to stay this way.

#millionsMissing #meAction #meAwarenessDay #longCovid

A graphic that reads: I am one of the 2025 millions missing calling out an SOS. Save our support systems. Save our science. Save our Society.
ahimsaahimsa_pdx@disabled.social
2025-05-12

Okay, I think that's it! If you've made it all the way to the end of my thread, thanks so much for reading! 😁

I may be done posting but I'll continue to look for and boost other posts about World ME Day / ME Awareness Day / Millions Missing.

I'll end with a story by The Sick Times about the #MEAction Millions Missing protest at the capitol:

thesicktimes.org/2025/05/12/mi

16/16

@mecfs @longcovid
@disability

#MEcfs #LongCovid #MillionsMissing #DisabilitySOS #MEAwarenessDay #WorldMEDay

ahimsaahimsa_pdx@disabled.social
2025-05-12

I thought I had a longer list of actions!

The only other one I can find now is this, a call by #MEAction to sign their open letter to the NIH demanding they fund ME/CFS Resesarch Roadmap:

airtable.com/appEwdLZCdtR0xwuv

15/n

@mecfs @longcovid

#USpol #MEcfs #LongCovid #MillionsMissing #NIH #Research #FundMERoadmap

Demand NIH Fund the ME/CFS Research Roadmap! #MEAction is sending an urgent letter to the newly appointed National Institutes of Health (NIH) Director, Dr. Jay Bhattacharya, calling for the NIH to allocate $50 million to fund the ME/CFS Research Roadmap. Sign Our Letter TODAY: - Sign our letter urging the NIH Director allocate $50 million in funding to execute the ME/CFS Research Roadmap. - Share this petition and our social media posts with friends and family to spread the word. Use the hashtag #FundMERoadmap to amplify the message.
ahimsaahimsa_pdx@disabled.social
2025-05-12

I'm about to end this long thread with calls to action (all US based)

Many go far beyond helping ME/CFS and Long Covid patients. Disabled folks have to stick together!

#MEAction has a page on saving Medicaid. Tasks are listed by energy (low to high) with sample scripts for email / phone calls to your congress member. There are tips on how to schedule an in-person visit

meactions.org/medicaid

14/n

@mecfs @longcovid

#USPol #Advocacy #Medicaid #SaveMedicaid #MEAwarenessDay #MillionsMissing

ahimsaahimsa_pdx@disabled.social
2025-05-12

Some ME/CFS resources (groups, documents, videos) in no particular order:

I mentioned the #MEAction group earlier in this thread (see #StopRestPace post)

Their website has lots of good info!

meaction.net/

Their events calendar includes support groups, advocacy meetings, and support for artists and writers:

meactions.org/event-list

Recent youtube posts:

youtube.com/@MEActNet/shorts

8/n

@mecfs @longcovid

#MEcfs #PwME #LongCovid #MillionsMissing #WorldMEDay #MEAwarenessDay

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