Five organizations. One conversation. Join the #UnitedForME collaborative on Tues, Aug. 12 at 10 a.m. MDT for a special "Coffee" with a Clinician recognizing #SevereMEAwareness Month.   Register here: https://bit.ly/3JCHAFq @openmedf.bsky.social @solveme.bsky.social @meactnet.bsky.social

Preliminary findings using a PET tracer targeting activated astrocytes suggest a potentially revealing neuroinflammatory profile in #ME/CFS, with effects concentrated in the default mode network and possible difficulty switching out of resting networks. Watch full video here: youtu.be/BBIRZvHPc5E

Interested in WGF's Writers' Access Support Staff Training Program? Join us for a virtual info session tomorrow, August 5 at 6:30pm PT to learn more about the program and get tips for crafting a strong application. RSVP for the session and find more program information at bit.ly/writers-access

Firefighters are slowly bringing some of the state’s wildfires under control. https://mrf.lu/2ZVnS

Five organizations. One conversation. Join us Aug. 12 at 10 a.m. MDT for a special "Coffee" with a Clinician recognizing Severe ME/CFS Awareness Month. Featuring Bateman Horne Center, @openmedf.bsky.social , @solveme.bsky.social , @meactnet.bsky.social  & WIMEL.  Register: https://bit.ly/3JCHAFq

August is #SevereMEAwarenessMonth. We will be amplifying the voices of those with #SevereME all month. Feel free to tag us @meactnet & use #'s included here. Our Severe ME Artists Project releases on Aug. 8- #SevereMEDay. We join #UnitedForME orgs on Aug 12. More info soon. #pwME

Looking for community this August? 💙 Aug. 4: Support Group—Caretaking While Chronically Ill Aug. 12: Special Edition "Coffee" with a Clinician for #SevereMEAwareness Month Aug. 18: Support Group—Self-Compassion Amidst Disease Register: https://bit.ly/4npZ4Ud

On Aug. 12 @ 9 am PT / 12 pm ET, Solve will join @openmedf.bsky.social, @meactnet.bsky.social, WIMEL writers, & hosting org @meactnet.bsky.social for a special "Coffee with a Clinician" in honor of #SevereMEAwareness Month. Sign up: https://ow.ly/M6GU50Zo1qG #UnitedForME #MEAwarenessHour

Reminder: Submissions are due Wednesday, Aug. 5. There's still time to share your story for our In Their Words series. A short reflection, audio, or video can help others better understand severe ME/CFS. 💙 Submit here: https://bit.ly/4ftJXq5 #SevereMEAwareness #MECFS

Studies led by Ludwig @princeton.edu’s Jenna AbuSalim & Joshua Rabinowitz show that plant fibers & proteins reprogram microbial metabolism to make healthful metabolites & suppress harmful ones & that many metabolites attributed to gut bugs are also made by mammalian metabolism. bit.ly/4vQ2Zgf

If you have a diagnosis of #MECFS or #LongCOVID and have been to the emergency room in the past 10 years for your symptoms, take the Emergency Department survey: https://ow.ly/QlUt50ZtCoN The survey has 100+ unique responses already! We're aiming for 150 before we close. #pwME #MEAction

One of the hardest parts of chronic illness isn't just the diagnosis, it's having to explain it. Hear why Bateman Horne Center's mission is personal to our Executive Director, Tahlia Ruschioni. 💙 Help keep free patient & clinician resources available: bit.ly/4oKuFkY

The survey has 100+ unique emergency room narrative responses already! But we're aiming for 150 before we close. If you have a diagnosis of #MECFS or #LongCOVID and have been to the emergency room in the past 10 yrs for your symptoms, I hope you'll take the survey. And if you don't, please share!

#MEAction Network@meactnet.bsky.social · 2w ago

Are you someone with myalgic encephalomyelitis/chronic fatigue syndrome #MECFS or #LongCOVID who’s been to the emergency room at least once over the past 10 years for your symptoms? Clinical care needs your voice! Take the Emergency Department research survey: surveys.mayoclinic.org/jfe/form/SV_...

Love Don’t Let Me Down (2022) View full video: www.youtube.com/watch?v=CPEI... Written by Julian Lennon and Guy Chambers Video concept by Julian Lennon and David Dutton Directed by David Dutton Choreography by: @jessicamariarecionos Dancers: @addienorman & @nehemiahdance

1/3 🚨 The comment period on OMB's proposed research grant rule has closed with nearly 500,000 comments, overwhelmingly opposed, in just 45 days. The public has spoken. Now it's Congress's turn. Take 2 min 👉solvecfs.quorum.us/campaign/166932

📣 We’re looking for someone with ME/a carer to a PwME who would be interested to write a short piece (500 words) for our @thereforme.bsky.social blog about their experiences of/challenges with social care. Ideally looking for someone in Wales or NI - but can be flexible!

Join us today at 6:30 for HOW TO BE A BAD LOBBYIST, with Rep. Rob Nosse. Monday July 27th, 6:30 PM - 7:30 PM Come and learn how to be an effective lobbyist with Representative Rob Nosse! Whether you want to lobby about healthcare or another topic that you are passionate about, this is for you!

The ADA affirmed in 1990 that people w disabilities have equal rights to live, work & participate in society. Curb cuts, closed captioning, workplace accommodations — its impact is everywhere. Today we recommit to the work ahead. #ThanksToTheADA #ADA36 #NothingAboutUsWithoutUs #DisabilityRights

The Bench Fire in Jefferson County is prompting Level 3 “Go Now” evacuations as the fire closes off nearby roads. https://www.koin.com/news/oregon/bench-fire-evacs-expand-in-jefferson-county-as-fire-grows-near-warm-springs/?cid=bluesky_ 

Bench Fire evacs expand in Jefferson County as fire grows near Warm Springs

PORTLAND, Ore. (KOIN) — The Bench Fire in Jefferson County is prompting Level 3 “Go Now” evacuations as the fire closes off nearby roads. The Jefferson County Sheriff’s Office ann…

koin.com

Great news!

#MEAction Network@meactnet.bsky.social · 2w ago

Positive updates! - We are closer than ever to getting the ME/CFS Research Roadmap funded. - The Office of the Surgeon General is ready to work with us. Take action: -Leave a public comment about Medicaid. - Join our advocacy working group. - Donate More info & links: https://ow.ly/gkv150Zs2gx

🌊 Inspiring the next generation of ocean stewards starts today. All summer long, our Coastal Community Coordinator, Kyle Motley, has been visiting the South Slough Summer Camps in Coos Bay, sharing the incredible story of Oregon's nearshore ecosystems. #oregon #oregoncoast #seaotters #otters

Not all heroes wear capes- some wear headphones & attend presentations to make sure we have the most up-to-date information! US Advocacy Director, Ben HsuBorger, is attending multiple presentations on CMS work requirements today. Submit your comment to CMS by July 31! https://ow.ly/TLas50Zrw9y

Every Clinical Care Guide represents more than a finished product. It's built on evidence, shaped by patient experience, and created by a team dedicated to improving care. Help us keep this work going. 💙 https://bit.ly/4oKuFkY

NBC News is looking to speak with patients, medical providers and healthcare advocates about the changes they are experiencing due to a new Medicaid work mandate.

We want to hear how Medicaid work requirements are affecting you

If you have lost your health coverage or are at risk of losing it, tell us your story.

nbcnews.to

Many people living with ME/CFS & Long COVID become experts in their own health out of necessity. Explore free BHC tools that help patients prepare for appointments and support conversations with healthcare providers. 🔗 https://t.mtrbio.com/BHCPatientResources

Much more funding is needed to supply The 2026 Cynthia Lennon Scholarships—please consider joining The Muse today and becoming a monthly donor, or make a one-time donation. whitefeatherfoundation.com/campaign/cyn... 💜