Breathe ... 🙏 www.youtube.com/watch?v=JuQ3... Video concept by Julian Lennon & David Dutton. Directed by David Dutton.

Multnomah County is opening two dedicated cooling centers and declaring a state of emergency as the Portland area could reach triple digits Monday. https://www.oregonlive.com/crime/2026/06/cooling-centers-activated-as-portland-nears-100-degrees.html 

🙏

ME/CFS community! Please, if you are able, come to the community meeting held by #MEAction on tomorrow - Sunday, June 14 at 3 PM ET. We are facing a changed advocacy environment, and to make any progress, we have to forge new paths and move forward together. Come tomorrow and see where we stand.

From our friends at @solveme.bsky.social! Take action today by submitting a comment and contacting Congress. Thanks to Solve M.E. for organizing this response on this critical issue.

REMINDER! Join us for a community meeting TOMORROW - June 14th at 3 pm ET to hear about the next steps #MEAction is taking in US advocacy, and what steps you can take to be part of these efforts. https://ow.ly/p1jM50ZablP#MEAction #PwME #MillionsMissing #FrailAndFurious #MyalgicEncephalomyelitis #MECFS

Temperatures could reach record-breaking highs. https://mrf.lu/9jVP

13 years ago this month, I released my album, Everything Changes, worldwide. This song, 'Disconnected' is from that album. A limited number of box sets featuring vinyls, CDs a DVD and 36-page booklet are still available.🦋 store.julianlennon.com/products/eve... 📷 'Rise', 2014 © Julian Lennon

1/ A proposed federal rule could let the government cancel active ME/CFS research mid-study when political priorities change. The public comment window closes July 13. Here's what you can do 🧵

A dear friend of mine could use some assistance. Please donate and share if you can. Every little bit helps. Thanks in advance! gofund.me/8e1a28b82

WGFestival 2026 starts this Friday! 🤩✏️ You can still join us with a Virtual Pass, granting you access to all sessions via Zoom Events. Check out the full lineup and secure your pass at wgfestival.org.

"When you hide who you really are... you deny the world a gift." Thank you, Lena Waithe ❤️ Signed in MASTER OF NONE "Thanksgiving" written by Aziz Ansari & Lena Waithe. You can see it for yourself at the WGF Library by making an appointment at wgfoundation.org/library

☕ Join us Wed, June 10 at 10:00 am MDT Section 4.7 Management of PEM This session will explore pacing, energy conservation, symptom tracking, supportive interventions, and individualized routines that may help support symptom stability and reduce PEM crashes. Register: https://bit.ly/3JCHAFq

Join us for a webinar with panelists from DecodeME and ActionForME to discuss their Catalyst Award-winning study on Sequence ME and Long Covid and how it could impact the search for biomarkers and subtypes. https://ow.ly/x0fJ50YZ86w #MEAwarenessHour

David shares at #MillionsMissing 2026 about his life with his wife Shaina, a #pwME (who also shared!). "Nobody should have to disappear just because they got sick. And nobody should be punished for loving someone who is.” Full speech: youtu.be/UE3U8O5rWcg #caregiver #MECFS

Jaime Seltzer It's ME(Jaime) at #MillionsMissing: "[Imposing Medicaid] work requirements in order to receive assistance is going to make so many people sicker. It's going to make so many people lose their lives. We need to fight against it with everything that we have." https://youtu.be/VGmix8XT14s

OMF’s large-scale biomarker project, BioQuest, is working to incorporate subtype identification into its study. Read more about the project on our website: www.omf.ngo/bioquest-lar.... #MECFS

The April 2026 issue of Ludwig Link is here with scads of research briefs, news of a new Ludwig lab at Weill Cornell and a new colleague at Ludwig Oxford, and a remembrance of Ludwig MIT’s Richard Hynes, who died in January. Check it out online here bit.ly/4vJdpj1 or get the PDF bit.ly/42mFWxj

Funding opportunity: amfAR is expanding its grant program to explore cancer immunology and is seeking proposals that investigate new ways to restore, redirect, or enhance the immune system's ability to fight cancer. For application information: bit.ly/49HtqNf

Jaime Seltzer - @exceedhergrasp1.bsky.social - doing the work. Showing up and speaking out in Washington, DC. Because people with #MECFS deserve to be treated with dignity. #frailandfurious #MillionsMissing #MEwarrior

Freedom … 🗝️ www.youtube.com/watch?v=NQ8w... Video concept by Julian Lennon & David Dutton. Directed by David Dutton.

This isn't just a conversation about the Medicaid cliff—it's a strategy session. What groups are most at risk of being left behind? How should Oregon communicate changes? What can your organization contribute? Join us and help shape the discussion. tinyurl.com/MedicaidCliff

Join the #MillionsMissing community for updates on U.S. advocacy. We have much to share - about our #FrailAndFurious campaign, and about HHS, NIH, and Congressional advocacy. Join us June 14th at 3 pm ET! Register here: https://ow.ly/gEHi50Z7MTy#MillionsMissing#FrailAndFurious#Medicaid #pwME #Disability #MECFS

In this month’s essay, @julianlennon.bsky.social & @tassoula.com discuss the recent data centre boom & the AI demand that is driving its rapid development. Read their full message here: whitefeatherfoundation.com/news/a-deep-...

Shaina sacrificed to come and speak up at #MillionsMissing so that we can prevent others from going through her horror in losing Medicaid. “I'm Shaina and I am and have been many things over my life... but I'm also a person with ME which colors everything." Shaina's video: youtu.be/EjzIf243OmQ

“One of the biggest struggles has been access and continuity of care. It's very difficult to just try to survive every day... and to burn through savings, to burn through credits, to burn through everything, trying to find answers, trying to get diagnosed, trying to get treated.” #pwME #Medicaid

#FrailAndFurious campaign update: CMS just issued new guidelines on work requirements for #Medicaid & made it harder for people with ME/CFS, Long COVID, & IACCs to get exemptions. We are fighting! More info here: https://ow.ly/FanX50Z7Jru#FrailAndFurious#Medicaid#PwME #disability #MECFS

People with disabilities should not lose healthcare because of paperwork, reporting requirements, or narrow definitions of disability. This article highlights growing concerns about new Medicaid rules pushing people with disabilities off these critical services. Read more:

Education begins with listening. Created by @pillowwriters.bsky.social, “What Is Myalgic Encephalomyelitis Like?” shares firsthand patient and caregiver experiences living with ME/CFS. Bateman Horne Center was honored to write the book and chapter forewords. Available now on Amazon.

In honor of Julia, too sick to attend. Image 1 sign inspo @ Sunniva Innstrand on IG & David Wojnarowicz. Like HIV/AIDS crisis, neglect of ppl w/ ME is public health failure. Sign petition protect Medicaid c.org/2jXD7kFHMk @meactnet.bsky.social #FrailAndFurious #MillionsMissing #MEawareness26 #pwME

Orion shares their poem “Lucky” at #MillionsMissing. “This is why we say these millions are missing. We live in a different world with a different mindset. Our own reality warped by suffering. The type of inhuman strength that only comes from being treated inhumanely.” youtube.com/shorts/JiNBL...

David joined #MillionsMissing with his #pwME wife Shaina. He shares that it is a beautiful life but that it involves grief for the life they hoped hoped for. Full video on YT. Take action for disability marriage equality w Disability Rights Education & Defense Fund https://ow.ly/m9ro50Z5nQY

Today is the last day of Lupus Awareness Month. Please give 💜 whitefeatherfoundation.com/campaign/luc...

Join OHF at U of O Portland to learn what’s coming and begin collaborating for Oregonians. For the first time, OHF will also offer a livestream so communities across the state - and nation - can hear the strategies and ideas Oregon is putting forward. tinyurl.com/MedicaidCliff

There is still time to register for the HCAO Annual Conference, at Portland State University's Hoffmann Hall, this Saturday. Learn from OR Legislators involved with the politics, members of the Universal Health Plan Governance Board creating the plan, and HCAO advocates.

Today at the Invest in ME Conference, Dr. Maureen Hanson — member of OMF's Scientific Advisory Board — presented "Searching for Chronic Infection in ME." Thank you, Dr. Hanson, for the research that moves us closer to answers for the millions living with ME/CFS.

📷: ‘Salton Sea #17, 2019’ ©️Julian Lennon 🎶: ‘Imaginary Lines’ from Help Yourself (1991)

Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon.bsky.social on Wednesday, June 17 Hopefully we’ll see some of you there irishmecfs.org/blog/wednesd... Carers/parents/similar welcome. #MEcfs #PwME

Learn more. Share information this ME Awareness Month and all year. Donate to an org doing work. Let those who are severely ill know they are not forgotten and we are not leaving them in their rooms. We are fighting for them. Learn and join: meaction.net Give: www.meaction.net/millionsmiss...

This is Severe ME. Lena is from Sweden and has Severe ME. She has been living in her parent’s home in a dark room since 2022. This photo was taken in 2024. Now she is too ill to take photos. Lena wanted to share and be part of this campaign. #SevereME #MillionsMissing #FrailAndFurious #MECFS

💛 youtu.be/POneS8h1jyU?...

🌍 🎶: "Touch the Sky" from Everything Changes (2011)

It is the unofficial start to summer! Time to help each other survive the heat. What are your most needed items? Temperature dysregulation is a common symptom in ME, making it even harder. For those doing better in the heat- yay! We celebrate with you. Now pass me my fan!

This is the pilot version of our global Medical Education Hub, designed to guide healthcare professionals to reliable, evidence-based resources on ME/CFS MEdical Education Hub on #ME/CFS (several languages) World ME Alliance

Join us for a webinar with panelists from DecodeME and ActionForME to discuss their Catalyst Award-winning study on Sequence ME and Long Covid and how it could impact the search for biomarkers and subtypes. https://ow.ly/x0fJ50YZ86w #MEAwarenessHour

MEAction delivered our letter to the HHS Secretary urging him to recognize people with #MECFS & #LongCOVID as “medically frail” so that their access to Medicaid is protected! Thank you to the almost 4k who signed! This is 1 step of our multi-pronged #FrailAndFurious campaign. #MillionsMissing

🚨Today is the last day of primary voting!🚨 Don’t forget to send in or drop off your ballots and make your voice heard. Find the closest ballot drop box to you here: t.co/0NTQQirEfd

At #MEAction Scotland, we want to make sure that our work reflects the needs and experiences of the whole ME community across Scotland. Our campaigning work is run by a small core team of volunteers who meet weekly.