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.

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 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!

Martin Keogh of Pillow Writers shares "It's Like Amnesia" - a piece included in Near- Life Experiences: The Pillow Writers Anthology, Issue 2. Pillow Writers has two anthologies available! Proceeds benefit #MEAction! https://ow.ly/A4kL50XLBO5 #MEAction#pwME #book #Spoonie #MECFS

The Health Resources and Service Administration (HRSA) has issued a proposal to stop tracking Long COVID at community health centers - making it much more difficult to track trends and identify disparities in access, diagnosis, and treatment in community health. MEAction comment: ow.ly/4z1j50XLH4i

Anyone attempting any holiday baking? We have some great tips for those wanting to attempt to keep this holiday tradition - just modifying it as best you can for spoonies! We share lots of helpful holiday tips here: https://ow.ly/8wVH50XLaCX #pwME #Spoonie #MECFS #Holiday

For people with #ChronicIllness who are feeling extra pressure to perform during the holidays, or who wish they could take part but can't because of #MECFS or #longCOVID. ow.ly/9yzS50XKzMq

We have a wonderful guided meditation free for you from Stuart Murdoch (of Belle & Sebastian)! https://ow.ly/9yzS50XKzMq We have uploaded it above so you can watch/listen with no ads. A huge thank you to Stuart for this! #Meditation #PwME #MyalgicE

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

Wow! We're at over 100 registrants for today's talk. Thanks so much for your interest, and looking forward to seeing you there!

We have a new video ready to watch! Check out our interview with Marisa Renee Lee about her book, Grief is Love. https://youtu.be/ax36XTkb1uA We have a book giveaway until Dec. 31. Enter to win in audio or ebook format if you live in the US, Canada, or UK: https://forms.gle/xwAZNAcK1J2dqud66

Alice Wong embodied the fight for independent living, supports and empowerment for disabled people. As #MEAction embarks on a fight to protect Medicaid for our community, we carry the legacy of Wong with us. Read a tribute to Wong here: bit.ly/3KVEo8n #DisabilityVisibility

Wow, 75 of you so far! It's not too late to register for this talk tomorrow, which is sliding scale, pay-as-you're-able. 20% of proceeds will go to #MEAction. Click on the post below to learn more!

Our Advocacy Director, Ben HsuBorger, shares why the #FreakinFrail campaign is so important - even if you’re not on #Medicaid. freakingfrail.org#FreakinFrail#MedicaidOur letter to HHS Secretary is step one. Next step will be at the state level. We need your solidarity to make this happen.

I have a not-updated-in-forever merch shop! But the most ME related item (that I'm also super proud of) is the rage resting blanket. Rest is so important but we don't always have to be happy about it. rhapsperhaps-shop.fourthwall.com/products/rha...

#PwME - add your shops! Everyone: go shopping!

New video available! #MEAction’s Shalida Dobbins interviews author Brian Buckbee about his book, We Should All Be Birds. https://ow.ly/194q50XK35U Reminder: Audio or ebook giveaway! Must be in US, Canada, or UK. Fill in form by Dec. 31: https://ow.ly/CJkc50XK35V#MEAction’s #pwME #LongCovid

Our Scientific Director, Jaime Seltzer @exceedhergrasp1.bsky.social, is giving a talk on Dec. 17 at 12 pm ET: Improving Quality of Life in ME/CFS & Infection-Associated Chronic Conditions. Register: us06web.zoom.us/meeting/regi... Available on a donate as you're able basis & 20% goes to #MEAction.

Thank you kindly. This is my art store: fineartamerica.com/profiles/tin...

Dynamically Disabled tees for all chronic illnesses. Contact me if you don’t see yours and I can add it. dynamically-disabled.printify.me

My memoir about being ripped out of my life by Long Covid. a.co/d/evpo1uH

Ooh - my book, in paperback, ebook, and audio! Available widely (bookshop, Barnes and noble, kobo, librofm, etc) but I’m linking Amazon bc all three formats are there together:

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

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-...

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...

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...

This is today! See you soon!

Please see the correct site freakinfrail.org. Thank you.

"#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

We know it is hard to hear the awful news Congress failed to protect ACA subsidies, and so many will lose their healthcare. We are here! We are working! But here is your gentle reminder to take care of you! If you want to take action today, help us protect Medicaid. Sign here: freakinfail.org

HHS Secretary praised new Medicaid work rules for helping "American citizens live healthy and fulfilling lives." For those with #ME/CFS and #Long COVID, more hoops to keep care means crashes and lost coverage. Tell HHS to protect our Medicaid - SIGN THE LETTER: actionnetwork.org/petitions/fr...

📢 Please PLEASE add your name to this petition to HHS. It's already so hard for people with MEcfs to get medical care, and the US government is about to make it much worse. Please help us try to prevent this! #spoonie #MutualAid #ChronicIllness #fibromyalgia #LongCovid #help

If you have ME/CFS or Long COVID or know someone with those diseases, you know how fragile their health can be. Please sign this letter to ensure their access to Medicaid is protected against new work requirements.

Join us this Friday for some pre-holiday, restorative self-care crafted specifically for people with ME! Check out our EXTREMELY modified movement class Dec. 12th at 11 am PT/2 pm ET/7 pm GMT. Register: ow.ly/sHNr50XCebh This virtual class is free to attend. #pwME #pwLC #MECFS

We need YOUR signature to protect Medicaid for our community!! Our Exec. Director, Laurie Jones, explains why we are sending a letter to HHS Secretary calling on him to protect Medicaid for people with #MECFS and #LongCovid. SIGN THE LETTER HERE: actionnetwork.org/petitions/fr...

Great news! After years of building up #MEAction UK and #MEAction Scotland, the volunteers on-the-ground have officially founded their own charity! #MEAction Community, we introduce you to the Official MEAction UK Charity! meaction.org.uk

Please do this action. So many people have these diseases and more to come.

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.

Both #MyalgicEncephalomyelitis and #LongCovid have over 200 symptoms. Each system in the body remains under attack, leading to unremitting physical agony and horrid #disabilty. PLEASE sign the letter below to HHS. This is life and death for millions of us. #DisabilitySky #pwME #pwLC

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...

In need if some pre-holiday, restorative self-care? Need it to be crafted specifically for #pwME? We invite you to join an EXTREMELY modified movement class Dec. 12th at 11 am PT/2 pm ET/7 pm GMT. Register: ow.ly/sHNr50XCebh This virtual class is free to attend. #spoonie

Feeling extra pressure to push yourself past your limit? Wondering how to explain those limits to those around you? Wanting to join in the seasonal joy but not sure how to make it a SAFE reality for you? We've got you! www.meaction.net/post/facets-... #holidays #spoonie #pwME #spoonie

We’re discussing Grief, Stress, and Connection During the Holidays at the #MEAction Partner Caregiver support group meeting this Sunday, Dec. 7, from 12–1 p.m. PST / 3–4 p.m. EST / 8–9 p.m. All caregivers are welcome to join www.meaction.net/event-detail...

3X match of your gift today. This group must keep going. They do vital work for a severely underserved and ill population. Please donate today.

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!

​As we work toward our fundraising goal, we will share the glow by lighting up community rewards. Together as a community, we can be a place of respite and maybe even some joy. DONATE TODAY: meaction.net/donate

To celebrate Family Caregivers Month, we’re unveiling brand-new shirts, sweatshirts, & mugs — created by caregivers for our community! Our community came together — caregivers, volunteers, designers, friends — to create these items! Find them here: www.bonfire.com/store/meacti... #InvisibleIllness

Light Up A Lantern! Everyone who gives $50+ to #MEAction fundraiser will have the ability to list a name on a lantern. You may light up a lantern in honor or in memory of someone else. And, your donation will be DOUBLED thanks to a matching donation! www.meaction.net/donate