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

Please help as you can today! 💛 With gratitude, Cynthia Johnson #StandByMEcfs #StillSickStillFighting gofund.me/0d803d22

"...Till peace we find tell you what I'll do All the things I own I will share with you And if I feel tomorrow like I feel today We'll take what we want and give the rest away..." www.youtube.com/watch?v=SsQJ...

In person, livestream and recording starting at 2 pm today in Lake Oswego! www.youtube.com/live/mMmbW3N...

In person, livestream and recording starting at 2 pm today in Lake Oswego! www.youtube.com/live/mMmbW3N...

Oregon’s Universal Health Plan Governance Board is working now to deliver a transition plan for how Oregon can transition to universal health care. Learn more at oregon.gov/uhpgb Their plan is due to the OR legislature September 15th.

Medicare at-home telehealth access for ME/CFS is set to change on 1/30 unless legislators act. Let them know this issue affects constituents. Take action: www.meaction.net/take-action

Dear friends and kind souls: Please help as you can today! 💛 With gratitude, Cynthia Johnson #StandByMEcfs #StillSickStillFighting gofund.me/0d803d22

The online schedule is LIVE! 🚨 Join the Sundance Institute’s Story Forum: Exploring Art and Innovation. Over 15+ sessions to learn about creative technology, virtual production, and the future of storytelling. Jan 29–30 online at Sundance Collab. Register now: sndnc.org/3NlFIm8

Our Encore presentations of the Mix Delirium Merry-Go-Round series continues with the next mix in the sequence, from the spring of 2022… Into the Clear Sky 🪶 Hear the full version on YouTube: www.youtube.com/watch?v=UGCh...

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

Our first webinar of 2026 is on the Medicaid and ACA marketplace changes that we are all gearing up for this year. Join Shanon Saldivar of Saldivar Insurance, Tracy Carver of Project Access NOW, and Lisa Steenson of the Clackamas Free Clinic, Wednesday, January 14 at 6 PM, we hope you can join!

🚨 Breakthrough in #MECFS research! Join our free webinar “From Mystery to Measurable: The Science Behind the New ME/CFS Blood Test” 🧬Learn how a 96% accurate test could transform diagnosis + treatment. 🗓️ Jan 15, 2026 | 9–10 am PT / 12- 1 pm ET. 🔗https://ow.ly/aZk450XiOeU

How were ME/CFS & Long COVID definitions developed, and why do they matter? With no single diagnostic test, definitions guide care, communication, and research. Join Lucinda Bateman, MD, and Lily Chu, MD, MSHS January 14 | 10:00 am MST Free & virtual 🔗 Register: https://bit.ly/3JCHAFq

"...Till peace we find tell you what I'll do All the things I own I will share with you And if I feel tomorrow like I feel today We'll take what we want and give the rest away..." www.youtube.com/watch?v=SsQJ...

Please help as you can today! 💛 With gratitude, Cynthia Johnson #StandByMEcfs #StillSickStillFighting gofund.me/0d803d22

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

This donor perspective captures why Bateman Horne Center exists. Our mission is built on three pillars - clinical care, research, and education - so people with ME/CFS receive care now while progress continues. Thank you to our donors who make all three pillars possible. 💙

📣 Job Opportunity | Reintroduction Planning Manager This position will support a new 3-year grant focused on tribal-led sea otter reintroduction planning in Oregon. 🗓 Apply by: January 26, 2026 🔗 Full job description & application: www.elakhaalliance.org/employment/ #NowHiring #OceanJobs #Oregon

Ludwig Princeton researchers led by Yibin Kang, Cao Fang and Mark Esposito report how a vitamin A derivative—retinoic acid—disrupts anti-cancer immune responses & the efficacy of a cancer vaccine + drug candidates to target both mechanisms for cancer immunotherapy. bit.ly/4sItUdV

Join the Portland Chapter of HCAO on Saturday January 10th, at 4:30 pm at Zidell Yards for our Art Show and Silent Auction! Step into an evening of elegance and purpose—our silent auction invites you to bid on exquisite treasures, all in support of a cause that truly matters.

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!

A new chapter is beginning at BHC: https://bit.ly/3KfdDvj  We’re moving from creating resources to expanding access through the Access to Care Model, helping patients with ME/CFS, Long COVID & other IACCs receive informed, coordinated care, no matter where they live.

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

Please help as you can today! 💛 With gratitude, Cynthia Johnson #StandByMEcfs #StillSickStillFighting gofund.me/0d803d22

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

#pwLC #pwME #NEISVoid @lccampaign.bsky.social founder @meighanstone.bsky.social needs our help! She’s had a recent housing emergency/mold exposure—causing unforeseen expenses/health issues. More info here.👇 Please help if you can and share with anyone you know who can assist. gofund.me/6bd94d22d

My Docu-short, “Whispers” Julian Lennon: A Retrospective is out now: www.youtube.com/watch?v=wZAW...

Cheers and well wishes for a peaceful 2026.🙏🏼

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!

What sets us apart is integration. Care, research, education & patient support inform one another, so patient experience shapes everything we do. Now through Jan 1, all gifts are matched dollar for dollar, up to $90,000. 👉 Give now. Double your impact: https://bit.ly/3KfdDvj

To learn more about ME/CFS, check out: Bateman Horne Center (www.batemanhornecenter.org). MEAction Network (www.meaction.net), Open Medicine Foundation (www.omf.ngo), Solve M.E. (www.solvecfs.org) #StandByMEcfs #StillSickStillFighting #MillionsMissing

You unlocked the $90K match, thank you. Now, $53K remains to reach our $500K Access to Care goal. These final funds determine what we can launch, restore, and sustain in 2026. Momentum matters. Help close the gap. 🔗 Donate: https://bit.ly/3KfdDvj

My 2025 Limited Edition Print, "California Coastline" is only available through December 31st, so order now if you've had your 👁️ on it. store.julianlennon.com/products/cal...

Impact happens when a community shows up, and in 2025, donations of all sizes helped advance research, education, and support at Bateman Horne Center. Our Impact Report shares what you made possible. 📖 Read the full report → https://bit.ly/4aTYV7X

Sea stars right now: just clinging to rocks like, “I will not get swept away before 2026” ⭐️🪨😤 Same, buddy. Same. Here’s to holding on tight, staying resilient, and making it to the new year without getting pulled out by the tide. #oregoncoast #newyears #newyear #oregon #seastars #tidepools

Submissions NEEDED: UCSD students (all levels), now’s a great chance to share your vision for a future that better supports people with ME/CFS in the 2nd Annual ME/CFS San Diego Essay Contest. Submit by Dec 31 → www.mecfssandiego.com/MECFSSD-UCSD...

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 season, we’re grateful for everyone who supports sea otter restoration in Oregon. Your dedication helps protect kelp forests, uplift coastal communities, and restore an essential species to its rightful home. Happy holidays from the Elakha Alliance!

This year was shaped by progress, partnership, and community. 💙 Thank you to everyone who supported, shared, and showed up. You make this work possible. Wishing you peace, rest, and hope this holiday season and into the new year.

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/

Big news! 🎉 Dr. Brayden Yellman and Jennifer Bell, FNP-C, are two of five co-authors of Chapter 45: Managing ME/CFS: A New Narrative in The Scientific Basis of Fatigue. Their contribution helps advance modern, evidence-informed understanding of ME/CFS. 💙 https://bit.ly/44Wfqwp

In case you missed it: Every donation to BHC is being matched dollar-for-dollar through Dec 31! Help launch the Access to Care Model and bring informed care to patients nationwide. 💙 Double your impact → https://bit.ly/3Xf1SIf

In The Tyee’s 22-year history, we’ve lived many lives. Once a private company, it became obvious we’re better suited as a non-profit. Now, with our #RJO status, it’s all the easier to consider becoming a Tyee Builder. #CdnMedia support.thetyee.ca?utm_source=b...

We also hope you sincerely take a minute to think about what MEAction means to you and how you can help make sure we are there for this community next week, next, month, and next year. Please be a lantern in our community and give today: www.meaction.net/lantern-in-t... #disability #spoonie

Stand By ME/CFS! We are banding together globally to raise awareness, demand health equity and seek a path towards the cure for ME/CFS. Please lend your voice and become an ally today! #StandByMEcfs #StillSickStillFighting #MEcfs #pwME #TeachMETreatME #EndMEcfs #GlobalVoiceforME #wishtreeforyokoono

For anyone doing archival work in #MECFS, this might be of interest. Eastern CT State University has catalogued 19 boxes of materials donated by CT CFIDS. Here’s the current finding aid, which is in process of being updated: easternct.libguides.com/ld.php?conte...