Joined June 2018
- Tweets 11,131
- Following 1,683
- Followers 448
- Likes 55,580
452 Photos and videos
Pinned Tweet
9 Oct 2024
Dear friends and kind souls:
Please help as you can today! 💛
With gratitude, Cynthia Johnson
#StandByMEcfs #StillSickStillFighting
Financial Stability for Chronically-Ill Advocate gofund.me/fdb0c6a2
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Cynthia Johnson retweeted
When ME/CFS patients are denied the care they deserve, the consequences are significant:
=> delayed diagnoses
=> harmful or inappropriate treatments
=> repeated experiences of stigma and disbelief
=> patients not warned of the risks of Post-Exertional Malaise (PEM)
#EducateME
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Cynthia Johnson retweeted
May 19
Here’s me, deep in the depths of the Orpheum, hard at work 😉
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May 19
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.
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Cynthia Johnson retweeted
Linda Tannenbaum, Founder and CEO of OMF, will deliver the inaugural lecture of Faculty of Medicine of the University of Lisbon’s new Open Lectures series on May 25.
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Cynthia Johnson retweeted
May is ME/CFS Awareness Month 💙
Alongside @OpenMedF, @MEActNet, & @PlzSolveCFS, we’re promoting education & understanding.
Join us: use #UnitedForME on ME-related posts this month.
#MECFSAwareness #MECFSAwarenessMonth
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Cynthia Johnson retweeted
May 6
May is #MECFSAwareness Month and as national nonprofits in the US we are dedicated to promoting education & understanding of this devastating disease. Whether you're an individual or org, feel free to join us in adding the tag #UnitedForMe to all your ME-related posts this month.
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Cynthia Johnson retweeted
#MECFS is a disabling condition impacting at least 67 million, but medical education is lacking & patients are denied the care they deserve. Ask healthcare professionals to read our 1-page doc on how our Medical Education Hub can help. ow.ly/22SK50YXU1y
#EducateME
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Cynthia Johnson retweeted
Solve’s latest Catalyst Award-winning projects will expand whole-genome discovery and test a promising low-cost therapy targeting inflammation and energy dysfunction—key steps toward biomarkers & clinical trials.
Learn more:
ow.ly/9arn50YXUw0
#WorldMEDay
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Cynthia Johnson retweeted
May 12 marks International ME/CFS Awareness Day. This year we asked our community to share the questions they live with because of #MECFS. Here are some of their responses.
Visit omf.ngo/maymomentum/ to join us in raising awareness.
#MECFSis #MECFSAwareness
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Cynthia Johnson retweeted
Join Tahlia Ruschioni, Executive Director of @BatemanHorne, in conversation with Anne Wilson, CEO of @EmergeAus, as they discuss the realities of living with ME/CFS and Long COVID, the urgent need for clinician education, and the work being done globally to improve care.
May 10
🎙️ME/CFS Awareness Week is here. Anne Wilson speaks with Tahlia Ruschioni from @BatemanHorne about #PEM, clinical care, education and hope for people living with #MECFS.
🔗 Available wherever you listen to podcasts - zurl.co/OwJhm
#EmergeAustralia
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Cynthia Johnson retweeted
May 10
Lift up your hearts for Mother's Day ❤️
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Cynthia Johnson retweeted
May 9
I can’t stop crying about the loss of James Strazza. James was was a rare sensitive soul who felt this world deeply. He felt it and then, with rare talent, created poems and words and music that communicated profound meaning about what it is to be human. Humanity needed James.
May 9
Sorry to report that musician and poet James Strazza passed away this week. He had been suffering from severe ME since 2019. Condolences to family and friends.🕯️🕊️💙 (There's a link to his website in his Twitter bio.) #MyalgicEncephalomyelitis #MECFS
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Cynthia Johnson retweeted
Mar 25
The Virtual ‘Whispers’ Exhibition captures my largest fine art photography event to date—taking the viewer through each room in the Le Stanze della Fotografia, a photography museum in Venice, where the ‘Whispers: Julian Lennon - A Retrospective’ showcase was hosted.
Enter the experience here:
whispers.julianlennon.com/
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Cynthia Johnson retweeted
Mar 25
ME/CFS affects ~9 million Americans. There are no FDA-approved treatments. We need medical research funding to change that.
Today advocates are asking Congress to change that - join us! It takes 5 minutes:
solvecfs.quorum.us/campaign/…
#MECFS #MEAwarenessHour
@PlzSolveCFS @meactnet
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Cynthia Johnson retweeted
Mar 25
Today for #MECFSAdvocacyWeek: make your voice heard at the federal level. This is our most time sensitive action!
1. Contact your reps: solvecfs.quorum.us/campaign/…
2. Share our posts. Ask others to join in! tinyurl.com/MECFSFederalAdvo…
#MECFS #pwME #MEAwarenessHour
@plzSolveCFS
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Cynthia Johnson retweeted
Today for #MECFSAdvocacyWeek: make your voice heard at the federal level.
Contact your reps: solvecfs.quorum.us/campaign/…
Share our posts: tinyurl.com/MECFSFederalAdvo…
#MECFS #pwME #MEAwarenessHour
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Cynthia Johnson retweeted
Mar 25
Open up your email for otterly good news 💙🦦🙌
That's right, our monthly RAFT Newsletter hit inboxes early this morning. If you'd like to stay in the know, make sure to subscribe here: elakhaalliance.org/get-invol…
#seaotter #Oregon #elakhaalliance #seaotters #nonprofitorg
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Cynthia Johnson retweeted
🎉15,000 Participants and Growing: The OMF StudyME Registry
🌎 StudyME is a free global participant registry, serving as a recruitment tool to accelerate research on #MECFS, #LongCOVID, and other related illnesses.
Learn more and join StudyME today: ow.ly/8E2S50Yl56r
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