New Survey now out: experiences of people with ME and Long Covid with hyperbaric oxygen / oxygen therapy. Please share widely. For all the info and survey link, head on over to www.physiosforme.com/o2survey

Telehealth flexibilities for Medicare are extended until Dec. 31, 2027. As many of you were able to express to elected officials, telemedicine is a crucial service for our community. We will continue to advocate to make telehealth expansions PERMANENT! www.meaction.net/post/more-gr...

Grief and complex chronic illness often go hand in hand. We know we are feeling some heavy grief right now. We have a workshop on grief with author Marisa Renee Lee available for you: youtu.be/0EbpE9Zj0V0 #pwME #pwLC #Spoonie #Grief

Check out this helpful resource from our friends at @batemanhornecenter.bsky.social! #pwME #disability #UnitedForME

The clock is ticking. The NIH now has 180 days to develop an implementation plan for the ME/CFS Research Roadmap. In 6 months, we SHOULD have a plan to implement the NIH’s roadmap for biomarkers, treatments & clinical trials. #MEAction partnered with #NotJustFatigue to secure this support. #NIH

Nine states are attacking Section 504 and the right of disabled people to live in the community. This lawsuit threatens decades of disability rights upheld by the Supreme Court in Olmstead.  Stop segregation and institutionalization.  Learn more: https://bit.ly/section-504-attack

We are thrilled to announce a virtual book reading featuring @shalidaask.bsky.social, #MEAction’s own Creative Arts & Community Manager! Her memoir, That Girl’s in a Wheelchair, just launched yesterday! Join us online February 20th at 3 pm ET: www.meaction.net/event-detail... #Disability

Action alert - We're co-sponsoring @meactnet.bsky.social's ICE Makes Me Sick campaign. Use this easy tool to send a quick message to your House reps: makesmesick.org?source=direc... Tell reps to stop bankrolling ICE violence while slashing our healthcare & homecare. Fund healthcare, not violence!

A quick update to our recent call to action to demand that Congress stop bankrolling ICE violence while slashing our healthcare and home care. Contact your Representative in the House TODAY to let them know you oppose more money to ICE. actionnetwork.org/letters/ice-... @longcovidjustice.org

What a lovely community gathering we just had! For all who were unable to attend, we wanted to offer an online participation option! We went through community-sourced questions & ended with these options: 1 What is giving you hope now? OR 2 What is you favorite way to eat potatoes?

Join us today at 12 pm PT/ 2 pm CT/ 3 pm ET 8 pm GMT for our virtual Keep The Light Community Event! Come as you are and we can all be encouraged by gentle time together! Register: https://www.meaction.net/event-details/keep-the-light-community-gathering #pwME #PwLC #MECFS #Spoonie

Do you have a favorite get to know you question? We would love your suggestions! We hope you can join us on Sunday at 12 pm PT/ 8 pm GMT for a virtual community event. We aim to keep it a gentle time together in community. Register: https://ow.ly/WJq450Y6tiv #pwME #pwLC

Craving some gentle time together in community? Us, too! Join us on Feb. 1st at 12 pm PT/ 2 pm central/ 3 pm ET/ 8 pm GMT for our Keep the Light virtual community event. https://www.meaction.net/event-details/keep-the-light-community-gathering #pwME #PwLC #MECFS #Spoonie

Like you, we have been watching horrors unfold especially in Minnesota. We have been checking on our #MEAction Minnesota community and sending all our love and support. This situation is heartbreaking and sickening. Take action: makesmesick.org #pwME #Disability #DisabilityJustice #pwLC

Join us for our monthly Partner Caregiver support group meeting this Sunday (Feb. 1 at 3 pm ET), where we will discuss “Reconnecting with the Relationship Beneath Caregiving.” All caregivers are welcome. www.meaction.net/event-detail... #pwME #Caregiver #FamilyCaregiver #LongCovid #MECFS

🩺 Share OMF’s VuMedi channel with your healthcare professional: https://ow.ly/CFVu50Y4lpZ OMF’s expert-led channel features research-informed videos on #MECFS, #LongCOVID & related conditions to support evidence-informed care. Access limited to licensed healthcare providers.

If you are disabled and need help due to this winter storm, see info from @disasterstrat.bsky.social below! #pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #spoonie #disability

Please see the helpful disability specific checklists for winter storms from our friends at @disasterstrat.bsky.social! We hope you stay safe during the winter storm moving through so much of the US! #pwME #MECFS #MyalgicEncephalomyelitis #LongCovid #disability

TELEHEALTH UPDATE: The House passed the Department of Health and Human Services’ funding bill yesterday, including telehealth extensions. Under the proposal, Medicare telehealth flexibilities would be extended by 2 years, until Dec. 31, 2027. They are not permanent so there is still work to be done.

Thank you to all who donated to our Be A Lantern campaign! The final rewards are in the works & we are honored to share a new video & final lantern page! Lanterns: https://ow.ly/Aili50Y1tOr Video: https://ow.ly/ZjKw50Y1tOt Every member of our community is valued. Thank you all!

We don’t need to tell you that these are extraordinarily difficult times. When care is threatened, community is our strength. MEAction executive director, Laurie Jones, shares an important message for our community: https://ow.ly/PcZX50Y1k46 #pwME #PwLC #community

YouTube #livestream recording of my #petition presentation to my MLA/BC premier @DavidEby office today, January 21st www.youtube.com/live/PN6-ewF... #MyalgicEncephalomyelitis #healthcare #canpoli #disability #MyalgicE #pwME #MECFS #longviral #MEAction #Canada #Vancouver #bcpoli

Winter emergencies hit disabled people hardest. Let’s prepare together and keep our communities safe. Warming centers: 211 | Disability & Disaster Hotline: 800-626-4959

Disabled, impacted by disasters, need help? Discapacitade, afectade por desastres y necesita ayuda? Try | Trate 211, 311, 800.733.2767 Call/text (llame) Disability & Disaster Hotline 800-626-4959 or [email protected].

The REAADI for Disasters Act is back in Congress! It strengthens disability civil rights in disasters and adds new funding for community-based response and disability-inclusive preparedness. Ask your Congressperson to co-sponsor REAADI today! #REAADI #DisabilityJustice

Happy birthday to all who are celebrating in January! Taking a moment to send love and hope your way! An extra thank you to all who set up birthday fundraisers for us on Meta or our site! You can set up a fundraiser on Facebook, Instagram, or our own site!

Virtual petition presentation i to my MLA, premier David Eby's office PST 11-11:30am YouTube live youtube.com/@iammadeline... Petition open til 9am Wed bit.ly/Marcia_petit... #myalgicE #disability #longcovid #myalgicencephalomyelitis #Canada #mecfs #canpoli

We met up with our friends at @meactnet.bsky.social , @openmedf.bsky.social y.social and @batemanhornecenter.bsky.social this week to share ideas. We're so grateful for our partners! #UnitedForME

Today, the CEOs of @solveme.bsky.social, @meactnet.bsky.social, @openmedf.bsky.social, and @batemanhornecenter.bsky.social met to align, collaborate, and strengthen how we support one another’s work. Progress isn’t always visible, but it is happening. And we’re doing it together. #UnitedForME

New Medicaid work rules will take effect at the end of 2026. Before states start enforcing these new work rules, the HHS Secretary must issue guidance. Sign our letter today to help protect people with ME & Long COVID from losing their Medicaid. ow.ly/Cy8A50XWVug

A great meeting of the minds today! It's beautiful & hopeful to share all of the hard work & visions our ME orgs have for this next year. And it's all motivated with love & desire to support this wonderful community. @batemanhornecenter.bsky.social @openmedf.bsky.social @solveme.bsky.social

Save the date! Our Keep the Light Virtual Community Gathering will be February 1st at 3 pm ET/ 8 pm GMT and you are invited! Register here: https://ow.ly/nO9Q50XWrYt It will be time to come together as a community and help us remember that we are a light in this world together!

You all continue to be a Lantern in the Darkness! This is a dark time, but we can all be the light for each other. With your support, we have exceeded our $150,000 end-of-year goal and – with the support of a generous matching grant – have raised $176,060. THANK YOU!

Positive news regarding the ACA! The House of Representatives passed bipartisan legislation to extend ACA subsidies. Ask your senator to support a clean, multi-year extension of the tax credits. Sample wording in graphic. https://www.congress.gov/members/find-your-member #ACA #PwME #Disability

Reminder: We have a Protest Guide for those with ME or other energy-limiting chronic disease. The 1st half focuses on creating a more accessible protest & the 2nd half focuses on attending an in-person protest safely. https://ow.ly/K0Oo50XUg9L #pwME #Disability #protest

Take action today! Please sign our letter to the HHS Secretary urging him to recognize people with ME/CFS and Long COVID as “medically frail” so that their access to Medicaid is protected. freakinfrail.org This petition is the 1st step. #Medicaid #PwME #MECFS #LongCovid

Laila Solaris shares the beginning of her essay "The Color Orange" with us. The full essay can be found in Near-Life Experiences The Pillow Writers Anthology Issue 2. Learn more about the truly amazing @pillowwriters.bsky.social & how to get your copy here: ow.ly/6Grc50XT8VK #pwME #spoonie

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

The coming year will be a real challenge as we find out how our government agencies have been restructured, whom we are able to speak with, and how to take action that actually moves the needle toward understanding and treating ME/CFS. Working together, we are up to the challenge! Let’s go, 2026!

How has your new year begun? Starting today with a cuddly blanket and warm cuppa that has a reminder that at #MEAction we take bold action. This coming year is certainly going to require a lot from us. Remember to rest up and pace! It is amazing what we can accomplish together from our beds! #pwME

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

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!

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

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/

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!