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#meaction

1 post1 participant1 post today
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ahimsa

🚨 On May 12, International ME Awareness Day, #MEAction will be sending out an SOS for ME/CFS and Long Covid 🚨

SOS = Save our support systems. Save our science. Save our society.

A protest will be held at the Capitol in Washington, DC, and folks can also join in from home

#MEAction encourages all folks with disabilities to join!

More details / toolkits here:

meactions.org/millionsmissing2

Please boost! ❤️

@mecfs @longcovid
@disability

Cartoon protest art with detailed, dark lines depicting the Statue of Liberty sinking to her crown in bright red liquid. She holds her torch high above an ocean of red next to the words "#Millions Missing SOS". Additional text says, "May 12, 2025, Protest - Washington, DC & From Home. 2025 #MillionsMissing" Artwork by Jessica Kaushansky.
#MEcfs#MillionsMissing#LongCovid
Replied in thread
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ahimsa

I encourage patients and allies who are feeling discouraged to join the Millions Missing 2025 campaign:

meactions.org/millionsmissing2

The SOS theme = "Save our support systems. Save our science. Save our society."

The main event is a protest on May 12 in Washington, DC. There'll be smaller events across the US. Or schedule a meeting with your local congress rep

Can't attend in person? Join in online on May 12

See the link for more ideas

Me ActionsTake Action for ME/CFSFor #MillionsMissing 2025, #MEAction is sending out an SOS.
#USPol#MEcfs#LongCovid
Continued thread
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ahimsa

Encouraging quote from Jamie Seltzer of #MEAction -

“MECFS researchers and advocates have been managing to do the impossible with next to nothing, and we will continue to do so ...

So for all of those folks with long COVID out there who are looking at this and feeling in despair, we have been here before and we have persisted …

We are unlikely to snap our fingers and find a cure, but that was always true, and advocates are going to keep fighting.”

#LongCovid#MEcfs#HealthCare
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ahimsa

#MillionsMissing 2025: Sending Out An SOS

Reminder: Two planning meetings for #MEAction Millions Missing 2025 (for ME/CFS Awareness Day - May 12) are scheduled for tomorrow!

meaction.net/2025/04/08/why-we

Here's how to sign up

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

us06web.zoom.us/meeting/regist

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

us06web.zoom.us/meeting/regist

@mecfs

#MEAction Network · Why We’re Sending out an SOS this #MillionsMissingOn 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 … Why We’re Sending out an SOS this #MillionsMissing Read More »
#MEcfs#PwME#MEAwareness
Public
ahimsa

News from #MEAction - planning for #MillionsMissing 2025 (May 12)

"If you are interested in organizing a protest, gathering in a park as a community or making art, please join one of our protest organizing meetings on Thursday, April 10"

Meeting 1: Thursday, 4/10, 12pm PT/3pm ET
us06web.zoom.us/meeting/regist

Meeting 2: Thursday, 4/10, 3pm PT/6pm ET
us06web.zoom.us/meeting/regist

Details:
meaction.net/2025/04/02/millio

@mecfs

Join Us for Millions Missing 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!
#MEcfs#PwME#LongCovid
Public
Brian Vastag

Beth Mazur and her group #MEAction was heavily involved in standing up the Columbia U center for research into myalgic encephalomyelitis/chronic fatigue syndrome, which also worked on #LongCovid. Dictator Musk shutting it down is desecration of her grave as far as I'm concerned.

Musk also held his Wisconsin rally at the same hotel where Beth and I had a family event to celebrate our marriage in 2019. So fuck him again for that.

salon.com/2025/04/01/admins-on

Salon.com · Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... AgainReorganization of federal agencies and budget cuts are terminating some of the few existing programs
Public
Brian Vastag

My late partner Beth Mazur and her advocacy group #MEAction spent lots of time & their limited energy advocating for, helping to establish, and working with the HHS Office of Long Covid Research & Practice to help set federal policy & goals, which the Russian regime now running the US is of course destroying. Fuck all of these people.

#longcovid

thesicktimes.org/2025/03/25/tr

The Sick Times - Chronicling the Long Covid crisis · Trump administration set to abolish the Office of Long COVID Research and Practice - The Sick TimesThe Trump administration is set to dismantle the federal government’s Office of Long COVID Research and Practice (OLC) this week as part of a larger restructuring of health agencies, sources have told The Sick Times. This news, also reported by POLITICO and the Substack Inside Medicine, represents another blow among several moves this administration has taken to diminish federal resources for studying and supporting people with Long COVID.
Public
ahimsa

From Ben HsuBorger at #MEAction:

"Why I Joined a Stand Up for Science Rally"

meaction.net/2025/03/12/why-i-

"I have lived as an ME/CFS 'spoonie' for the past 20 years after I got a virus and never recovered. I’ve spent much of the past 10 years of my career advocating for ME/CFS research at the NIH"

"I don’t want to see the same scientific harms that have happened in the ME community become even more widespread across all of science"

@mecfs

A white man in a respirator and a red shirt that says "Still sick, still fighting" sits in a manual wheelchair. He holds a protest sign on his lap that says "Fork off, Elon" and "Spoonies for Science." In his right hand he holds an oversized fork and in his left hand he holds an oversized spoon (props that refer to the protest sign).
#MEcfs#StandUpForScience#Protest
Continued thread
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ahimsa

#MEAction has been fighting to protect the Long COVID Advisory Committee at HHS, which was recently dismantled.

In this video, five patient-advocates read an open letter to Health and Human Services Secretary Robert F. Kennedy Jr.

youtube.com/watch?v=hQn3kqyAT6

@longcovid

2/3

YouTube#MEAction Volunteers Read Letter To HHS Secretary RFK JR regarding Long Covid Committee & MoreBy The ME Action Network
#LongCovid#MEcfs#Awareness
Public
ahimsa

🚨 Take action today! (USA)

"Join #MEAction on March 12th to make calls to our Senators together as a community, and fight back to protect Medicaid.

We will have call scripts and easy-to-access numbers for contacting your Senator"

RSVP for call at Noon PDT / 3 PM EDT:

us06web.zoom.us/meeting/regist

RSVP for call at 3 PM PDT / 6 PM EDT:

us06web.zoom.us/meeting/regist

All are welcome! 😊

See links for details

ZoomWelcome! You are invited to join a meeting: Defend Medicaid Call Party. After registering, you will receive a confirmation email about joining the meeting. We have two weeks to convince the Senate to protect Medicaid and reject a House budget bill that could cut up to $880 billion in Medicaid funding over the next ten years. It is urgent that we take action together to lobby our senators to oppose these massive cuts to Medicaid. Medicaid affects 72 million Americans – 40 percent of children in the U.S. and 60 percent of adults in nursing homes,, including many in our ME community. It is a lifeline for individuals to receive the care they need for mobility aids, medication and hospital visits. Many people do not realize they are covered by Medicaid as it goes by other names, such as Medi-Cal in California, Health First Colorado or Health Care in Arkansas. Without it, millions of Americans will be left vulnerable to inadequate or no health care services, and we fear people will die without it. We are asking you to help us protect it. Join #MEAction on March 12th to make calls to our Senators together as a community, and fight back to protect Medicaid. We will have call scripts and easy-to-access numbers for contacting your Senator. It won’t be scary! We encourage everyone to join. It will be an opportunity to meet others in the community, practice a call script, mute yourself to make a call, and talk about how it went. If you cannot join, please don’t worry. There are many ways to be a part of this community effort. You can look at this guide for ways to take action from home. Also, you are enough just as you are and you never have to take a single action to be a valued member of our community.
#USPol#Medicaid#Disability
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ahimsa

Headline:

"Patients are frustrated that there isn't a reliable treatment yet for long COVID"

/begin snark

Wow, that *must* be frustrating! You know what else is frustrating? Having ME/CFS since 1990 without a reliable treatment!

/end snark

I do support more research on Long Covid treatments!

But we also need to research ME/CFS, POTS, etc. Folks who knew about ME/CFS predicted the pandemic would increase chronic illness cases.

See #MEAction post:
meaction.net/stoprestpace/

Screenshot of NPR headline in the Health section: "Patients are frustrated that there isn't a reliable treatment yet for long COVID. December, 23, 2024"
#LongCovid#MEcfs
Public
ahimsa

📣 Reminder: #MEAction is giving away 2 copies (one paperback, one audiobook) of the book "Pillow Writers Anthology 1: Near-Life Experiences"

Their "Chronically Complex" podcast has extracts from the book:

meaction.net/chronically-compl

Deadline for entry is December 15, winners will be selected the next day

I can't find an announcement on the #MEAction website but here's a link to what they posted on Bluesky:

bsky.app/profile/meactnet.bsky

@mecfs

Free Giveaway! One lucky winner will receive a free paperback copy of the book (limited to the US, UK, Germany, France, Japan, Canada and Italy) and another winner will receive a free copy of the audiobook (limited to the US and UK). * Listen to the episode. * Email podcast@meaction.net by December 15th with "Pillow Writers Giveaway" as the subject heading. * Please indicate whether you'd prefer the audiobook, paperback, or either version. * Please include your name, and if you preference is for the paperback, please list your home address so we can mail it to you if you win. The deadline for entries is December 15th. The winners will be selected the next day.
#MEcfs#PwME#NEISvoid
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