Stop cutting our healthcare in order to fund the growing lawlessness of ICE! #JusticeforReneeNicoleGood action.momsrising.org/sign/not-cru...

We have been asked to share the fundraiser for this community member! @rarediseasepatient.bsky.social is facing being unhoused as of January 9th. They are asking for donations in honor of their 55th birthday. Please share: gofund.me/80af6f2c9 #pwME #RareDisease #MECFS #Spoonie

Does anyone try to choose a word of the year? I do not. I am not good at “give a one word answer” type actions. I am more… how about a nice paragraph…perhaps a short essay type person. However, today as I was pondering this question one word did come to me- care. #pwME #NewYear #care

Sent a belated birthday donation to @rarediseasepatient.bsky.social who is right now in a board and care home facing being unhoused by Jan. 9th! It is her 55th birthday. She is asking for donations of 5.55, $55, $550 etc. Please share! #pwME #RareDisease #disability gofund.me/546ea2440

Happy New Year's Eve! How are you counting down to the new year? We invite you to join us however you are able & take a little time scrolling through our videos, written works, and artist salons. Videos: https://ow.ly/V9SO50XQcz2 Art: https://ow.ly/EAZy50XQcz1 #pwME #NewYear #spoonie

For my hero of 2025 at @motherjones.com, I wrote about the late great disabled disability justice oracle Alice Wong, including her work with Disability Visibility Project, Crips for eSims for Gaza, and #CripTheVote. www.motherjones.com/politics/202...

1995, studying in Prague for a year. I went to Bucharest by myself, fully intending to shell out for a hotel since there wasn’t a lot of backpacker-level tourist infrastructure yet. Showed up to the hotel to check in & the desk clerk took one look at me and said “You can’t stay here.”

A big thank you to everyone who did anything, big or small, for the Myalgic Encephalomyelitis / Chronic Fatigue Syndrome +/or Long Covid cause in 2025 (including simply sharing messages on social media). 👏 Together we can make a difference. 👍 #MEcfs #LongCovid

Today, @motherjones.com got a donation from me specifically because the work of reporter @juliametraux.bsky.social. Disability coverage by disabled folks is crucial. Each donation (admittedly small though it is) has come after another piece covered by Julia Métraux. #disability #pwME #press

No one randomly owes you information about their health, their loved one’s health, or, understandably, just wanting to avoid Covid, which is the only way to prevent Long Covid.

🚌 Two recent studies state that Long COVID is an occupational disease 👩🏽‍⚕️ Vanderbilt researchers are conducting an immune profiling study on Long COVID and POTS 💊 A new phase two remote clinical trial for ME will assess low-dose naltrexone This week's #LongCOVID research: bit.ly/49bWgnJ

TOMORROW is the last day to donate to receive a tax deduction for 2025. meaction.net/donate We do NOT yet have the funds to fully support our mission. Please give if able. Thank you to everyone who has given either financially or your time this year. We are grateful!

Maybe have a little holiday money you are wanting to spend? We have so many amazing designs in our store! We have hoodies, tees, joggers, totes, mugs, and more! You get a great item to remind you of the love of your community and you support #MEAction! https://www.bonfire.com/store/meaction-1/

If you care about public schools in Tennessee, this is worth paying attention to. I signed this earlier today: app.sosha.ai/s/MDyHldiz

Enter our giveaways by Dec. 31st! Keep sharing our fundraiser to help us reach new rewards! We Should All Be Birds by Brain Buckbee & Grief is Love by Marisa Renee Lee. https://ow.ly/6YxO50XMJu5 Visible https://ow.ly/BaTG50XMJu4 #pwME #MyalgicE #spoonie #MECFS #book #spoonie

Can you sign & share our letter to HHS? freakinfrail.org Thank you to the 1600 who have signed! Congress has mandated that Medicaid recipients work 80 hours a month unless they can prove they are “medically frail." We want to protect Medicaid access for #pwME & #pwLC.

We reached a new fundraising level- releasing a NEW community resource for those who are applying for Medicaid & preparing for home assessment. https://ow.ly/MrbU50XLJqi Plus a bonus video talking us through the basics of getting home care with Medicaid! Keep sharing!

Happy Holidays from #MEAction! We wish you safety, peace, & hope this holiday season! Whatever holidays you are celebrating, please take care & know that a whole community surrounds you in love! We will be lightening our load for the next 2 weeks but you will still see a few things from us!

We have an AMAZING AMAZING reward for you today! Because we have reached $50k in fundraising, we can give away 50 refurbished Visible bands with a 3 month membership!!!! Thank you to Visible for helping us make this happen! Register (US UK Canada only): forms.gle/VdQSz8gesa87... #pwME #MECFS

I recently shared a thread with some #MECFS community members with needs. I need to share this person's again. They are facing homelessness. They are in desperate need of funds. They are going w/o meds & food. If you can share, I would appreciate it. @rarediseasepatient.bsky.social #pwME ⬇️⬇️⬇️

"#MEAction brought light to my life through community, art, and connection. There were years I thought I would never be able to draw again. #MEAction literally gave me a purpose to work on drawing and design." Shares @hospmom.bsky.social. #pwME #MECFS #LongCovid

A message from #MEAction: We are facing an unprecedented crisis for disability & chronic illness communities. People are at the precipice of losing their access to healthcare, home and community-based services, & the promise of new research. Learn more & support: www.meaction.net/lantern-in-t...

I'm giving a talk next week and you're invited! ✨Improving Quality of Life in ME/CFS and Infection-Associated Chronic Conditions✨ The talk is donate-as-you're-able, and 20% will support #MEAction. You can sign up to attend here: us06web.zoom.us/meeting/regi...

Our first 2 fundraising levels have been unlocked! Book giveaway - We Should All Be Birds by Brian Buckbee & Grief is Love by Marisa Renee Lee available in US, Canada, & UK! docs.google.com/forms/d/e/1F... Guided meditation with Stuart Murdoch of Belle & Sebastian www.meaction.net/post/guided-...

We will help get us started! We have tees, hoodies, hats, mugs, totes, and more available in our store and your purchase helps support MEAction! Ships from the US but shipping to other countries is available. They do have gift cards available too. www.bonfire.com/store/meacti...

Share your shop! All community members are welcome to share a link or tag their shops in this thread. Whatever holiday you are celebrating this time of year, you are welcome to join in and do a little gift shopping or selling! #pwME #MECFS #LongCovid #MyalgicE #Holiday

If you’re new to the #MECFS world I recommend bookmarking MEpedia. It’s a great resource from @meactnet.bsky.social Topics vary from the history of ME to researchers, systems affected in the body, treatments etc.

New Medicaid work requirements will take effect at the end of 2026 - it will FAIL sick people and cut off their care. Tell HHS to recognize people with #MECFS and #LongCOVID as “medically frail” so our access to Medicaid is protected. SIGN THE LETTER: actionnetwork.org/petitions/fr...

Today is Giving Tuesday! All Donations tripled! We simply cannot continue without your support. We need your help to raise $150,000 by Dec. 31, or #MEAction will not be able to do the work we do. Donate now and be a lantern for all of us! meaction.net/donate

#MEAction has a 3X Matching opportunity for this #GivingTuesday - all donations will be TRIPLED today! www.meaction.net/donate We simply cannot continue without your support. Help us continue to be a lantern in the darkness. We need your help to raise $150,000 by December 31st. Thank you!

I have been in the ME, ME/CFS community a long time. We are a community with big needs but we keep doing our best to show up for another and to grab the attention of the wider world. These two people have lived with great needs for many years & things are critical. Share & give if able. #pwME

Our workshop "Chronic Illness Caregiving for Youth, Teen, and Adult Children" with Denise Lopez-Majano is this Saturday - November 22nd at 3 pm ET! Get your ticket now: ow.ly/3IcV50XlbZh All caregivers welcome! New to caregiving or a veteran at it, there is something for you! #caregiver

#MEAction has been working hard this year to be a lantern in the darkness. We have had some wins, moments that stood out, and times where this community made a difference. See our list: www.meaction.net/post/meactio... We need your support. Your gift will be matched up to $50k! #pwME #pwLC #MECFS

This National Family Caregivers Month, we partnered with Caregiver Wisdom to share resources for caregivers. Checkout their post with lots of helpful ideas for saying thanks: www.caregiverwisdom.net/post/thought... You can find the graphics shared here and so much more!

That spot can get so lonely! It is especially hard when just a person's energy in the room is unbearable. But it does not mean those necessities of caretaking are not appreciated! #SevereME #MyalgicEncephalomyelitis #caregiving

This one was inspired by my husband! The tremendous amount of electrolytes and fluids needed with POTS and ME is staggering. I appreciate every time he mixes it just like I like in one of my preferred cups & brings it to me so my heartrate does not have to skyrocket! #pwME #POTS #caregiver

Do you have a family caregiver in your life? Want to tell them thanks and show your appreciation? We created some images you are welcome to save and share throughout the year with the caregivers in your life! It can be for your caregiver or for a friend who is caregiving. #FamilyCaregiver #pwME

This year has been heavy—political whiplash, uncertainty, and real harm for our community. #MEAction is here, advocating on the ground. Remember, HOPE is a sweet rebellion. #MEAction is a lantern in the darkness. We can only continue our work with your support. www.meaction.net/lantern-in-t...

November is National Family Caregivers Month. #MEAction is bringing you 2 powerful webinars! We will also be sharing social posts & resources focusing on caregiving. Webinar 1: Nov. 16 at 3 pm ET ow.ly/aN5G50XlbZc Webinar 2: Nov. 22 at 3 pm ET ow.ly/JZis50XlbZg #Caregiver #PwME #MECFS

On day 31 of the government shutdown, Trump parties at Mar-a-Lago with his wealthy friends instead of working to reach a deal with Democrats to reopen the government.

HCR nails it every time but love the way Neguse reframed what’s happening. Why isn’t everyone in the media doing this?

Sen. Shaheen: I had a meeting with some constituents last Friday. One was a small business owner who had cancer. He said, 'If I didn't have that insurance through the ACA, I would not have gotten my cancer treated, and I would be dead by now.' That's what this fight is about.

This is a very SCARY time! We are people with ME/CFS & Long COVID that stand against the Medicaid cuts + ACA Premium increases. $1trillion in Medicaid cuts will harm millions. ACA premium hikes will steal affordable healthcare from tens of millions. Contact Congress: www.meaction.net/medicaid #ACA

Don't let the grim reaper steal your health insurance! CALL your Congress Member and tell them to fight back against Medicaid cuts + ACA Premium increases. Congress is tackling these very issues during the govt shut-down - they need to hear from YOU! See our call script 👇.

TeamBlueZoo's cutest member protests for Healthcare reform Things are so scary, that no dressing up was required Because the facts are the facts & they look dire Affordable health care (ACA) has expired #SaveMedicaid #ADA @meactnet.bsky.social

They say you don't know what you've got til it's gone. If you don't want to envision a future that doesn't #SaveMedicaid and the #ACA, join us in contacting your Congressperson. Tell them only they can save American Healthcare! @meactnet.bsky.social

As House Republicans continue their 6 week vacation, I’m back in Washington D.C. working to re-open the government. It is outrageous that Republicans refuse to re-open the House!

Thank you Congressman Neguse for laying it plain.

I love how Rep. Joe Neguse reframed this question.

Ben also shares a photo with his notice that his healthcare marketplace plan premium subsidies are expiring - one of this season's true horror stories! Millions of people will get kicked off of Medicaid. ACA Health insurance premiums are expected to double if the tax credits expire. #ACA