#EndMEcfs hashtag - Bluesky

@minetodo.bsky.social

5 months ago

Wish tag from virtual Wish Tree for Yoko Ono. Cynthia's wish is: Stand By ME/CFS!

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

14 5 0 0

Something Chronic

@somethingchronic.bsky.social

9 months ago

#ME #pwME #MECFS #SevereME #VerySevereME #LongCovid #EndMEcfs #MEawareness #DisabilitySOS #MEAction #MillionsMissing #TeachMETreatME #StillTheSaME #StandByMEcfs #StillSickStillFighting #NotRecovered #GreatestMEdicalScandal #JohnVsJonVsME #ThereForME #BerlinBuyers #IACC #MEKills #DontLetMEDie

1 0 0 0

Something Chronic

@somethingchronic.bsky.social

10 months ago

Pink background with bright blue text saying: I haven’t been able to get downstairs in my own house for 2 years #SevereME

ME is one of the cruellest diseases you can possibly have. Most people think it’s as insignificant as having a cold.

#May12 #MEAwarenessDay #StillTheSaME #StillSickStillFighting #ME #MECFS #SevereME #LongCovid #EndMEcfs #MEAction #MillionsMissing #GreatestMEdicalScandal #ThereForME #BerlinBuyers

24 10 1 0

Cynthia Johnson

@minetodo.bsky.social

10 months ago

A floral print chair with a red blanket folded on the top that says: #MEAction Still Here Still Sick.

World ME Day - May 12, 2025

We need good health care, up-to-date medical education and immediate research funding!
I have suffered from ME/CFS since 2009.
#StandByMEcfs #StillSickStillFighting #MEcfs #EndMEcfs
#MEAction #MillionsMissing #TeachMETreatME #pwME

64 28 0 0

Cynthia Johnson

@minetodo.bsky.social

10 months ago

Red and white image with two shadows of people: one laying down and one standing. Image is in honor of World ME Day (May 12, 2025) and the people suffering from ME/CFS globally. (2021 #MillionsMissing image is by Cynthia Johnson who has suffered from ME/CFS since 2009)

World ME Day May 12, 2025
I am sharing this artwork again today in honor of the #MillionsMissing who suffer from ME/CFS.
As we come out of the shadows this week, we will band together globally to raise awareness, demand health equity and seek a path towards the cure!
#StandByMEcfs #EndMEcfs

31 13 0 0

Cynthia Johnson

@minetodo.bsky.social

11 months ago

Home - World ME Alliance

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

5 3 0 0

Cynthia Johnson

@minetodo.bsky.social

11 months ago

Photo of woman with ME/CFS on mobility scooter in front of sign: Third Annual Community Symposium on the Molecular Basis of ME/CFS, Saturday, September 7, 2019 The post talks about World ME Day on May 12, 2025 and the need for good health care, up-to-date ME/CFS medical education and immediate research funding. This disease impacts people of all ages. Hoping for a cure soon! #StandByMEcfs #StillSickStillFighting #EndMEcfs (Photo of Cynthia Johnson taken by her son in 2019 at an Open Medicine Foundation event. She has suffered from ME/CFS since 2009)

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

15 7 0 0

Cynthia Johnson

@minetodo.bsky.social

11 months ago

Donate to Financial Stability for Chronically-Ill Advocate, organized by Shane Johnson This is a humble request for financial help for my mother, Cynthia John… Shane Johnson needs your support for Financial Stability for Chronically-Ill Advocate

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-...

5 3 0 0

Cynthia Johnson

@minetodo.bsky.social

11 months ago

Donate to Financial Stability for Chronically-Ill Advocate, organized by Shane Johnson This is a humble request for financial help for my mother, Cynthia John… Shane Johnson needs your support for Financial Stability for Chronically-Ill Advocate

Please lend a hand today by giving 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-...

6 1 0 1

Cynthia Johnson

@minetodo.bsky.social

11 months ago

Wish tag from virtual Wish Tree for Yoko Ono. Cynthia's wish is: Stand By ME/CFS!

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

17 3 1 0

Cynthia Johnson

@minetodo.bsky.social

1 year ago

Stand By ME/CFS | Cynthia Johnson, Edge Prize 2023 YouTube video by The Edge Prize

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

17 6 0 0

Cynthia Johnson

@minetodo.bsky.social

1 year ago

Photo description: A hand with End ME/CFS blue bands on wrist. Photo credit: Cynthia Johnson (who has suffered from ME/CFS since 2009).

You are not forgotten

I see your faces,
I know your names,
I remember your stories.

#StandByMEcfs #StillSickStillFighting #MillionsMissing #TeachMETreatME #GlobalVoiceForME #EndMEcfs

42 12 0 0

Robbie

@robbielane87.bsky.social

1 year ago

#mecfs #mecfsawareness #mecfswarrior ##fibro #fibromyalgia #fibrowarrior #chronicillness #chronicillnessandme #chronicillnessawareness #neurodivergent #adhd #adhdawareness
#MyalgicE #MEcfs #pwME
#SevereME #MillionsMissing
#EndMEcfs #MillionsMissingSpeakOut #MillionsMore #MyalgicEncephalomyelitis

21 6 1 0

Cynthia Johnson

@minetodo.bsky.social

1 year ago

Wish tag from virtual Wish Tree for Yoko Ono. Cynthia's wish is: Stand By ME/CFS!

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

19 7 0 1

Robbie

@robbielane87.bsky.social

1 year ago

#mecfs #mecfsawareness #mecfswarrior ##fibro #fibromyalgia #fibrowarrior #chronicillness #chronicillnessandme #chronicillnessawareness
#MyalgicE #MEcfs #pwME
#SevereME #MillionsMissing #CanYouSeeMEnow
#EndMEcfs #MillionsMissingSpeakOut #MillionsMore #MyalgicEncephalomyelitis

4 1 0 0

Robbie

@robbielane87.bsky.social

1 year ago

Sign the Petition Prevent forced psychiatric hospitalisation of Very Severe ME patient in Denmark

bit.ly/linepetition

Please read and share everywhere.. the importance of this such a huge priority.. all eyes on link..

#mecfs #mecfsawareness #mecfswarrior #MyalgicE #MEcfs #pwME
#SevereME #MillionsMissing #CanYouSeeMEnow
#EndMEcfs #MillionsMissingSpeakOut #MillionsMore #MyalgicEncephalomyelitis

14 6 0 2

Robbie

@robbielane87.bsky.social

1 year ago

#mecfs #mecfsawareness #mecfswarrior #chronicillness #chronicillnessandme #chronicillnessawareness
#MyalgicE #MEcfs #pwME
#SevereME #MillionsMissing #CanYouSeeMEnow
#EndMEcfs #MillionsMissingSpeakOut #MyalgicEncephalomyelitis #postviralillness #invisibleillnessawareness #chronicPain

8 3 0 0

Cynthia Johnson

@minetodo.bsky.social

1 year ago

Millions Missing photo by Cynthia Johnson (ME/CFS since 2009) #StandByMEcfs

I support funding for the NIH ME/CFS Research Roadmap!

The millions who suffer globally deserve 2024 emergency funding after decades of neglect. The extreme human cost of ME/CFS cannot be put into words.
#StandByMEcfs #StillSickStillFighting #EndMEcfs

www.ninds.nih.gov/about-ninds/...

4 2 0 0

Cynthia Johnson

@minetodo.bsky.social

1 year ago

#wishtreeforyokoono Wish by Cynthia Johnson (ME/CFS since 2009) #StandByMEcfs

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!
#StandByMEcfs #StillSickStillFighting #MEcfs #TeachMETreatME #EndMEcfs #GlobalVoiceforME #wishtreeforyokoono

11 1 1 0

Cynthia Johnson

@minetodo.bsky.social

1 year ago

Stand By ME/CFS | Cynthia Johnson, Edge Prize 2023 #edgeprize2023 #2023prize_community_resilience #2023prize_systems_and_governance #2023prize_storytelling_and_knowledge_weave This video was created as a part of a submission to “The Edge Prize” www.edgeprize.org 2023 cohort. View and contribute to this project on Hylo: https://www.hylo.com/all/projects/post/59493 About the video & creator: My name is Cynthia Johnson and I am an ME/CFS activist. I am also an advocate for health care, affordable housing and disability rights. And I am an Edgewalker. Please watch my video and hear my story. Any help lifting the significant financial burden of chronic illness will allow me to devote more of my limited time towards this important advocacy. I have suffered from ME/CFS since 2009. As the #MillionsMissing come out of the shadows, we are banding together to raise awareness, demand health equity and seek a path towards the cure for ME/CFS. After decades of neglect, we are #StillSickStillFighting. I hope you will lend your voice and support to me/us in any way you can! I am happy to share what is working from the ME/CFS model of activism and could be replicated by other causes. We are building a model of how distributed organizing can move mountains. Through our collective storytelling, governmental advocacy work and transorganizational cooperation with a network of nonprofits, we are creating change. As ME/CFS activists and organizations, we work with a variety of stakeholders locally, regionally and globally. We continually share our knowledge and stories in new and creative ways. We are a resilient community and have learned to even advocate from our beds. ME/CFS stands for myalgic encephalomyelitis/chronic fatigue syndrome. Much of the world refers to it as just ME. To learn more, check out: MEAction Network (www.meaction.net), Open Medicine Foundation (www.omf.ngo), Solve M.E. (www.solvecfs.org) and the Bateman Horne Center (www.batemanhornecenter.org). – This video was created as a part of a submission to “The Edge Prize” www.edgeprize.org 2023 cohort. The Edge Prize is a bioregional community, accelerator, and prize challenge focused on Salmon Nation, a bioregion defined by the historic range of wild Pacific salmon, from the Salinas River in California, north to the Yukon River in Alaska. The goal of the Edge Prize is to: * Convene a group of extraordinary entrepreneurs, leaders, and innovators throughout Salmon Nation working on regenerative projects that benefit the lands, waters, and people of the bioregion — “The Edgewalkers.” * Invite them into a supportive community of reciprocity, mentorship, workshops, and collaboration. * Amplify their stories, in order to bring resources, collaboration, partnerships, and inspire others to start their own regenerative initiatives — in Salmon Nation and beyond. We are building a public-facing library of “what’s working” in Salmon Nation to help scale and accelerate regenerative practices worldwide.

Stand By ME/CFS youtu.be/s9cMmFDI4rk
Please watch my Stand By ME/CFS video! I have suffered from ME/CFS since 2009. Please lend your voice and support. Become an ally! With gratitude, Cynthia #StandByMEcfs #GlobalVoiceForME #StillSickStillFighting #MillionsMissing #EndMEcfs #TeachMETreatME

7 3 0 0