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World ME Day - May 12, 2025 I have suffered from ME/CFS since 2009. We need good health care, up-to-date medical education and immediate research funding! This bipartisan issue impacts people of all ages. Please help us find the cure soon. #StandByMEcfs #StillSickStillFighting #MEcfs #EndMEcfs

submitted 3 days ago • 0 comments

World ME Day May 12, 2025 Learn more about ME/CFS: MEAction Network (meaction.net), Bateman Horne Center (batemanhornecenter.org), Open Medicine Foundation (omf.ngo), Solve M.E. (solvecfs.org) World ME Alliance (www.worldmealliance.org). #StandByMEcfs #TeachMETreatME #EndMEcfs #GlobalVoiceForME

submitted 2 days ago • 0 comments

Stand By ME/CFS! Please take a look at my Stand By ME/CFS video: youtu.be/s9cMmFDI4rk And become an ally in 2025! With gratitude, Cynthia 💛 #StandByMEcfs #GlobalVoiceForME #TeachMETreatME #StillSickStillFighting #MillionsMissing #ForgetMEnot #MEcfs #MyalgicEncephalomyelitis #EndMEcfs

submitted 32 days ago • 0 comments

As you are able today, please give to this GoFundMe! 💛 You can donate a one time gift or use the monthly recurring gift option. Every gift helps and I am very grateful to all who have given so far! #StandByMEcfs #StillSickStillFighting #GlobalVoiceForME #EndMEcfs www.gofundme.com/f/financial-...

submitted 6 days ago • 0 comments

The ME/CFS Research Roadmap was a major achievement. NIH pulled in researchers, clinicians and advocates to set the course for ME/CFS for the foreseeable future. Now we are sitting by the side of the road, Roadmap in hand, with no resources. Please sign this letter calling for $50 million in funding

submitted 2 days ago • 0 comments

Ben HsuBorger is the U.S. Advocacy Director for MEAction. And he has suffered from ME/CFS for twenty years. Please take a listen: www.youtube.com/shorts/vi0CL... @meactnet.bsky.social #MEAction #StandByMEcfs #StillSickStillFighing

submitted 3 hours ago • 0 comments

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 #TeachMETreatME #EndMEcfs #GlobalVoiceforME #wishtreeforyokoono

submitted 30 days ago • 0 comments

You are not forgotten I see your faces, I know your names, I remember your stories. #StandByMEcfs #StillSickStillFighting #MillionsMissing #TeachMETreatME #GlobalVoiceForME #EndMEcfs

submitted 63 days ago • 0 comments

Not Hard to Understand Start from this point: We all want to get better. It’s not hard to understand: We all want to get better. Just to be very clear: We all want to get better. Proceed accordingly. It’s not hard to understand. Words/Image ©Cynthia Johnson (ME/CFS since 2009) #StandByMEcfs

submitted 33 days ago • 0 comments

www.meactions.org/millionsmiss...

submitted 4 hours ago • 0 comments

Free Webinar – May 9 at 12 PM MDT Join us for a live webinar with BHC’s Jennifer Bell, FNP-C, Dr. Hoppers, & Tahlia Ruschioni to explore our new Clinical Care Guide & BHC’s Approach to Clinical Care. Register: loom.ly/PDOsBSE #ClinicalCareGuide #MECFS #LongCOVID #Webinar

submitted 7 hours ago • 0 comments

Thank you so much, @pricklywave.bsky.social, for your powerful submission! 🫂

submitted 1 day ago • 0 comments

I'll be at Washington DC next week speaking at #MillionsMissing. Hope to see you there!

submitted 21 hours ago • 1 comment

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

submitted 121 days ago • 0 comments

#MillionsMissing is only 1 week away! We invite you to join in however you are able. We have a global toolkit, a US toolkit, & a Show Up From Home Toolkit to help you plan. All info can be found at www.meactions.org/millionsmiss.... How are you joining in? #DisabilitySOS #pwME

submitted 1 day ago • 1 comment

Aberdeen Live: 'Aberdeen's Marischal College to join UK landmarks shining blue for invisible illness' 'Buildings across Scotland will turn blue in solidarity with those living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)...' www.aberdeenlive.news/news/aberdee...

submitted 2 days ago • 0 comments

From @meactnet.bsky.social 👇

submitted 4 days ago • 1 comment

Tomorrow’s the last day to submit your photo for this protest. Much thanks to everyone that can be there in person. #MECFS #LongCovid

submitted 3 days ago • 1 comment

For #MillionsMissing 2025 in #Scotland, we're raising a red alert 🚨 Spread the word! The Scottish Budget pledged £4.5m for ME specialist support - the clock is ticking to spend it. Email your MSPs & join us @parliament.scot or support online. Info & template email: www.meaction.net/2025/04/27/m...

submitted 3 days ago • 1 comment

World ME Day May 12, 2025 Learn more about ME/CFS: MEAction Network (meaction.net), Bateman Horne Center (batemanhornecenter.org), Open Medicine Foundation (omf.ngo), Solve M.E. (solvecfs.org) World ME Alliance (www.worldmealliance.org). #StandByMEcfs #TeachMETreatME #EndMEcfs #GlobalVoiceForME

submitted 2 days ago • 0 comments

World ME Day - May 12, 2025 I have suffered from ME/CFS since 2009. We need good health care, up-to-date medical education and immediate research funding! This bipartisan issue impacts people of all ages. Please help us find the cure soon. #StandByMEcfs #StillSickStillFighting #MEcfs #EndMEcfs

submitted 3 days ago • 0 comments

We’re heading to #IIMEC17! All of OMF’s CRC directors—and our CEO, Linda Tannenbaum—will attend the International ME Conference Week (May 26–30, 2025). Thanks to Invest in ME for continued dedication to bringing researchers together and driving meaningful progress in the fight against #MECFS.

submitted 20 days ago • 1 comment

It's time to get your photo ready for #MIllionsMissing! We have more info in our toolkit here: ow.ly/Pul650VKQlp Fill in the form to send it to DC: ow.ly/832V50VKQlq Thanks to Wilhelmina, Beth, Jess, Shalida, Bridget, & Laurie for letting us share their photos! #DisabilitySOS #PwME #MECFS

submitted 7 days ago • 1 comment

.@Bateman Horne will share their newly released Clinical Care Guide developed from decades of patient care, research & lived experience. This practical, step-by-step framework supports clinicians in dx & ongoing care 4 ppl with ME/CFS.....Fri 9 May 7-8pm BST Register in advance tinyurl.com/zweuaare

submitted 6 days ago • 0 comments

As OMF begins its 13th year, we recently marked a significant milestone – the 4th anniversary of OMF Australia. Hear from OMF Founder Linda Tannenbaum and Dr. Chris Armstrong, Director of the Melbourne ME/CFS Collaboration: ow.ly/8Npe50VJTfc

submitted 8 days ago • 0 comments

Aeolus pillowwriters.wordpress.com/2024/11/08/a... Aeolus is dedicated to all those who have suffered from ME/CFS and the people that love them. By Cynthia Rae Johnson #StandByMEcfs Words and Pictures Copyright © Cynthia Rae Johnson 2024

submitted 30 days ago • 0 comments

youtu.be/It0DlZo00Ec?...

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One day left!

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9 more days to register for Solve ME’s Advocacy Week! #MECFS #LongCovid

submitted 4 days ago • 0 comments

Two days left on David Tuller’s Trial by Error crowdfunding and 80% of the way to goal crowdfund.berkeley.edu/project/46120

submitted 4 days ago • 0 comments

The final date to upload your photo to be at the DC #MillionsMissing action is Monday, May 5th. Turn it in here: airtable.com/appvOnNOiTgI... We have so many ways to join in! Everything you need to know can be found by typing in millionsmissing.org. #PwME #DisabilitySOS #MECFS #LongCovid

submitted 4 days ago • 0 comments

Every voice and every effort that brings visibility, urgency, and support for all those impacted by ME/CFS and post-infectious associated conditions is vital. @meactnet.bsky.social #MillionsMissing #MECFS #LongCOVID

submitted 5 days ago • 2 comments

May is #MEAwarenessMonth & 5.12 is #WorldMEDay! Let's change the narrative around #ME & get the facts right! Help challenge myths & champion facts w/the @WorldMEAlliance custom poster maker!💙 ow.ly/vRpW50VLrB6 #MEAwareness #MECFS

submitted 6 days ago • 0 comments

#MECFSis submission from Angela: "ME/CFS is the world missing out on millions of brilliant & beautiful people." #mecfsis #mecfs #millionsmissing #pwme @lowenergylounge.bsky.social

submitted 5 days ago • 2 comments

Ludwig @harvard.edu’s Zuen Ren shared work @ #AACR25 showing that SIRT5, a master regulator mitochondrial metabolism, is highly overexpressed and plays a key role in driving resistance to chemotherapy in triple-negative breast cancer.

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Ludwig @unil.bsky.social’s Yi-Ru Yu @ #AACR25 with his poster describing how he, Ping-Chih Ho & team identified a mode of fat uptake by immune cells in tumors that serves as a metabolic checkpoint against anti-cancer immune responses & developed a candidate immunotherapy. bit.ly/3Gr0ygr

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The proposal would cut off rental subsidies after two years for able-bodied adults. Advocates warn if enacted, the White House plan would tip many low-income renters over the edge into homelessness.

submitted 5 days ago • 76 comments

Ludwig Chicago’s Chuan He presented his work @ #AACR25 on the regulation of gene expression in leukemia by epigenetic modifications made to RNAs.

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Ludwig @stanford.edu’s Rui Wang presented @ #AACR25 her research on the improved sensitivity of a liquid biopsy for the detection of pancreatic cancer that analyzes epigenetic patterns on cell-free circulating DNA and insights on tumor biology gleaned from her studies.

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Ludwig @harvard.edu’s Leonie Stockschlader & Chris Sander presented @ #AACR25 their largescale analysis of mutational patterns in healthy tissues & its integration with data on precancerous/cancerous tissues for insights into genetic changes that drive the evolution of tumors.

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Ludwig @mit.edu’s Diya Ramesh shared @ #AACR25 research showing that cancer cells exhibit novel metabolic vulnerabilities in low-lipid tissue environments.

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Ludwig @stanford.edu’s Naiara Martinez-Velez shared @ #AACR25 her work developing organoid models for pediatric cancers that capture the complex immune landscapes of tumors and can serve as platforms for the preclinical examination of immunotherapies.

submitted 5 days ago • 0 comments

Ludwig @harvard.edu’s Adrienne Parsons presented @ #AACR25 her work on age-associated differences in cell states and interactions in estrogen receptor-positive and triple-negative breast cancers—work that provides clues to age-adapted interventions for breast cancer therapy.

submitted 5 days ago • 0 comments

Samantha’s words speak to the devastating reality of #MECFS —a disease that isolates and steals. “ME/CFS is watching life happen to other people while you slowly fade away.” Support ME/CFS research: www.omf.ngo?form=donatenow

submitted 5 days ago • 0 comments