Cynthia Johnson
@minetodo.bsky.social
Storyteller. Advocate. Stand By ME/CFS!
#StandByMEcfs #StillSickStillFighting #UnitedForME #MEcfs since 2009
#StandByMEcfs #StillSickStillFighting #UnitedForME #MEcfs since 2009
Pinned
Cynthia Johnson
@minetodo.bsky.social
· Jan 6
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
gofund.me
Dear friends and kind souls:
Please help as you can today! 💛
With gratitude, Cynthia Johnson
#StandByMEcfs #StillSickStillFighting
gofund.me/0d803d22
Reposted by Cynthia Johnson
Today, the CEOs of @solveme.bsky.social, @meactnet.bsky.social, @openmedf.bsky.social, and @batemanhornecenter.bsky.social met to align, collaborate, and strengthen how we support one another’s work.
Progress isn’t always visible, but it is happening. And we’re doing it together.
#UnitedForME
Progress isn’t always visible, but it is happening. And we’re doing it together.
#UnitedForME
January 14, 2026 at 10:42 PM
Today, the CEOs of @solveme.bsky.social, @meactnet.bsky.social, @openmedf.bsky.social, and @batemanhornecenter.bsky.social met to align, collaborate, and strengthen how we support one another’s work.
Progress isn’t always visible, but it is happening. And we’re doing it together.
#UnitedForME
Progress isn’t always visible, but it is happening. And we’re doing it together.
#UnitedForME
Reposted by Cynthia Johnson
Please help as you can today! 💛
With gratitude, Cynthia Johnson
#StandByMEcfs #StillSickStillFighting
gofund.me/0d803d22
With gratitude, Cynthia Johnson
#StandByMEcfs #StillSickStillFighting
gofund.me/0d803d22
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
gofund.me
January 14, 2026 at 1:26 AM
Please help as you can today! 💛
With gratitude, Cynthia Johnson
#StandByMEcfs #StillSickStillFighting
gofund.me/0d803d22
With gratitude, Cynthia Johnson
#StandByMEcfs #StillSickStillFighting
gofund.me/0d803d22
Reposted by Cynthia Johnson
"...Till peace we find tell you what I'll do
All the things I own I will share with you
And if I feel tomorrow like I feel today
We'll take what we want and give the rest away..."
www.youtube.com/watch?v=SsQJ...
All the things I own I will share with you
And if I feel tomorrow like I feel today
We'll take what we want and give the rest away..."
www.youtube.com/watch?v=SsQJ...
Strangers
YouTube video by The Kinks - Topic
www.youtube.com
January 14, 2026 at 1:36 AM
"...Till peace we find tell you what I'll do
All the things I own I will share with you
And if I feel tomorrow like I feel today
We'll take what we want and give the rest away..."
www.youtube.com/watch?v=SsQJ...
All the things I own I will share with you
And if I feel tomorrow like I feel today
We'll take what we want and give the rest away..."
www.youtube.com/watch?v=SsQJ...
Reposted by Cynthia Johnson
In person, livestream and recording starting at 2 pm today in Lake Oswego!
www.youtube.com/live/mMmbW3N...
www.youtube.com/live/mMmbW3N...
MLK Community Celebration
Commemorate Dr. Martin Luther King, Jr.’s life and teachings with a family-friendly celebration that features Katharine Phelps as emcee, a greeting from Mayor Joe Buck, a poetry reading by Emmett Whea...
www.youtube.com
January 18, 2026 at 7:43 PM
In person, livestream and recording starting at 2 pm today in Lake Oswego!
www.youtube.com/live/mMmbW3N...
www.youtube.com/live/mMmbW3N...
In person, livestream and recording starting at 2 pm today in Lake Oswego!
www.youtube.com/live/mMmbW3N...
www.youtube.com/live/mMmbW3N...
MLK Community Celebration
Commemorate Dr. Martin Luther King, Jr.’s life and teachings with a family-friendly celebration that features Katharine Phelps as emcee, a greeting from Mayor Joe Buck, a poetry reading by Emmett Whea...
www.youtube.com
January 18, 2026 at 7:43 PM
In person, livestream and recording starting at 2 pm today in Lake Oswego!
www.youtube.com/live/mMmbW3N...
www.youtube.com/live/mMmbW3N...
Reposted by Cynthia Johnson
Oregon’s Universal Health Plan Governance Board is working now to deliver a transition plan for how Oregon can transition to universal health care. Learn more at oregon.gov/uhpgb
Their plan is due to the OR legislature September 15th.
Their plan is due to the OR legislature September 15th.
January 18, 2026 at 1:48 AM
Oregon’s Universal Health Plan Governance Board is working now to deliver a transition plan for how Oregon can transition to universal health care. Learn more at oregon.gov/uhpgb
Their plan is due to the OR legislature September 15th.
Their plan is due to the OR legislature September 15th.
Reposted by Cynthia Johnson
Medicare at-home telehealth access for ME/CFS is set to change on 1/30 unless legislators act. Let them know this issue affects constituents. Take action: www.meaction.net/take-action
TAKE ACTION FOR ME/CFS | #MEAction
#MEAction is dedicated to taking action in places that affect people with ME, Long COVID, and other chronic illnesses. Join us!
www.meaction.net
January 16, 2026 at 12:11 AM
Medicare at-home telehealth access for ME/CFS is set to change on 1/30 unless legislators act. Let them know this issue affects constituents. Take action: www.meaction.net/take-action
Reposted by Cynthia Johnson
Dear friends and kind souls:
Please help as you can today! 💛
With gratitude, Cynthia Johnson
#StandByMEcfs #StillSickStillFighting
gofund.me/0d803d22
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
gofund.me
January 6, 2025 at 10:17 PM
Dear friends and kind souls:
Please help as you can today! 💛
With gratitude, Cynthia Johnson
#StandByMEcfs #StillSickStillFighting
gofund.me/0d803d22
Reposted by Cynthia Johnson
The online schedule is LIVE! 🚨
Join the Sundance Institute’s Story Forum: Exploring Art and Innovation. Over 15+ sessions to learn about creative technology, virtual production, and the future of storytelling.
Jan 29–30 online at Sundance Collab.
Register now: sndnc.org/3NlFIm8
Join the Sundance Institute’s Story Forum: Exploring Art and Innovation. Over 15+ sessions to learn about creative technology, virtual production, and the future of storytelling.
Jan 29–30 online at Sundance Collab.
Register now: sndnc.org/3NlFIm8
January 16, 2026 at 7:48 PM
The online schedule is LIVE! 🚨
Join the Sundance Institute’s Story Forum: Exploring Art and Innovation. Over 15+ sessions to learn about creative technology, virtual production, and the future of storytelling.
Jan 29–30 online at Sundance Collab.
Register now: sndnc.org/3NlFIm8
Join the Sundance Institute’s Story Forum: Exploring Art and Innovation. Over 15+ sessions to learn about creative technology, virtual production, and the future of storytelling.
Jan 29–30 online at Sundance Collab.
Register now: sndnc.org/3NlFIm8
Reposted by Cynthia Johnson
Our Encore presentations of the Mix Delirium Merry-Go-Round series continues with the next mix in the sequence, from the spring of 2022…
Into the Clear Sky 🪶
Hear the full version on YouTube:
www.youtube.com/watch?v=UGCh...
Into the Clear Sky 🪶
Hear the full version on YouTube:
www.youtube.com/watch?v=UGCh...
January 16, 2026 at 5:19 PM
Our Encore presentations of the Mix Delirium Merry-Go-Round series continues with the next mix in the sequence, from the spring of 2022…
Into the Clear Sky 🪶
Hear the full version on YouTube:
www.youtube.com/watch?v=UGCh...
Into the Clear Sky 🪶
Hear the full version on YouTube:
www.youtube.com/watch?v=UGCh...
Reposted by Cynthia Johnson
A great meeting of the minds today! It's beautiful & hopeful to share all of the hard work & visions our ME orgs have for this next year.
And it's all motivated with love & desire to support this wonderful community.
@batemanhornecenter.bsky.social @openmedf.bsky.social @solveme.bsky.social
And it's all motivated with love & desire to support this wonderful community.
@batemanhornecenter.bsky.social @openmedf.bsky.social @solveme.bsky.social
January 14, 2026 at 8:26 PM
A great meeting of the minds today! It's beautiful & hopeful to share all of the hard work & visions our ME orgs have for this next year.
And it's all motivated with love & desire to support this wonderful community.
@batemanhornecenter.bsky.social @openmedf.bsky.social @solveme.bsky.social
And it's all motivated with love & desire to support this wonderful community.
@batemanhornecenter.bsky.social @openmedf.bsky.social @solveme.bsky.social
Reposted by Cynthia Johnson
Our first webinar of 2026 is on the Medicaid and ACA marketplace changes that we are all gearing up for this year.
Join Shanon Saldivar of Saldivar Insurance, Tracy Carver of Project Access NOW, and Lisa Steenson of the Clackamas Free Clinic,
Wednesday, January 14 at 6 PM, we hope you can join!
Join Shanon Saldivar of Saldivar Insurance, Tracy Carver of Project Access NOW, and Lisa Steenson of the Clackamas Free Clinic,
Wednesday, January 14 at 6 PM, we hope you can join!
January 9, 2026 at 4:08 PM
Our first webinar of 2026 is on the Medicaid and ACA marketplace changes that we are all gearing up for this year.
Join Shanon Saldivar of Saldivar Insurance, Tracy Carver of Project Access NOW, and Lisa Steenson of the Clackamas Free Clinic,
Wednesday, January 14 at 6 PM, we hope you can join!
Join Shanon Saldivar of Saldivar Insurance, Tracy Carver of Project Access NOW, and Lisa Steenson of the Clackamas Free Clinic,
Wednesday, January 14 at 6 PM, we hope you can join!
Reposted by Cynthia Johnson
🚨 Breakthrough in #MECFS research! Join our free webinar “From Mystery to Measurable: The Science Behind the New ME/CFS Blood Test”
🧬Learn how a 96% accurate test could transform diagnosis + treatment.
🗓️ Jan 15, 2026 | 9–10 am PT / 12- 1 pm ET.
🔗https://ow.ly/aZk450XiOeU
🧬Learn how a 96% accurate test could transform diagnosis + treatment.
🗓️ Jan 15, 2026 | 9–10 am PT / 12- 1 pm ET.
🔗https://ow.ly/aZk450XiOeU
November 3, 2025 at 9:52 PM
🚨 Breakthrough in #MECFS research! Join our free webinar “From Mystery to Measurable: The Science Behind the New ME/CFS Blood Test”
🧬Learn how a 96% accurate test could transform diagnosis + treatment.
🗓️ Jan 15, 2026 | 9–10 am PT / 12- 1 pm ET.
🔗https://ow.ly/aZk450XiOeU
🧬Learn how a 96% accurate test could transform diagnosis + treatment.
🗓️ Jan 15, 2026 | 9–10 am PT / 12- 1 pm ET.
🔗https://ow.ly/aZk450XiOeU
Reposted by Cynthia Johnson
How were ME/CFS & Long COVID definitions developed, and why do they matter?
With no single diagnostic test, definitions guide care, communication, and research.
Join Lucinda Bateman, MD, and Lily Chu, MD, MSHS
January 14 | 10:00 am MST
Free & virtual
🔗 Register: https://bit.ly/3JCHAFq
With no single diagnostic test, definitions guide care, communication, and research.
Join Lucinda Bateman, MD, and Lily Chu, MD, MSHS
January 14 | 10:00 am MST
Free & virtual
🔗 Register: https://bit.ly/3JCHAFq
January 13, 2026 at 6:31 PM
How were ME/CFS & Long COVID definitions developed, and why do they matter?
With no single diagnostic test, definitions guide care, communication, and research.
Join Lucinda Bateman, MD, and Lily Chu, MD, MSHS
January 14 | 10:00 am MST
Free & virtual
🔗 Register: https://bit.ly/3JCHAFq
With no single diagnostic test, definitions guide care, communication, and research.
Join Lucinda Bateman, MD, and Lily Chu, MD, MSHS
January 14 | 10:00 am MST
Free & virtual
🔗 Register: https://bit.ly/3JCHAFq
"...Till peace we find tell you what I'll do
All the things I own I will share with you
And if I feel tomorrow like I feel today
We'll take what we want and give the rest away..."
www.youtube.com/watch?v=SsQJ...
All the things I own I will share with you
And if I feel tomorrow like I feel today
We'll take what we want and give the rest away..."
www.youtube.com/watch?v=SsQJ...
Strangers
YouTube video by The Kinks - Topic
www.youtube.com
January 14, 2026 at 1:36 AM
"...Till peace we find tell you what I'll do
All the things I own I will share with you
And if I feel tomorrow like I feel today
We'll take what we want and give the rest away..."
www.youtube.com/watch?v=SsQJ...
All the things I own I will share with you
And if I feel tomorrow like I feel today
We'll take what we want and give the rest away..."
www.youtube.com/watch?v=SsQJ...
Please help as you can today! 💛
With gratitude, Cynthia Johnson
#StandByMEcfs #StillSickStillFighting
gofund.me/0d803d22
With gratitude, Cynthia Johnson
#StandByMEcfs #StillSickStillFighting
gofund.me/0d803d22
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
gofund.me
January 14, 2026 at 1:26 AM
Please help as you can today! 💛
With gratitude, Cynthia Johnson
#StandByMEcfs #StillSickStillFighting
gofund.me/0d803d22
With gratitude, Cynthia Johnson
#StandByMEcfs #StillSickStillFighting
gofund.me/0d803d22
Reposted by Cynthia Johnson
Positive news regarding the ACA!
The House of Representatives passed bipartisan legislation to extend ACA subsidies. Ask your senator to support a clean, multi-year extension of the tax credits. Sample wording in graphic. https://www.congress.gov/members/find-your-member
#ACA #PwME #Disability
The House of Representatives passed bipartisan legislation to extend ACA subsidies. Ask your senator to support a clean, multi-year extension of the tax credits. Sample wording in graphic. https://www.congress.gov/members/find-your-member
#ACA #PwME #Disability
![Graphic with a call script for senator supporting extending ACA subsidies. Photo of a Black woman holding a cell phone to her ear. Text: Hello, my name is [Your Name], and I'm a constituent from (City/Zip Code).
I'm calling to urge Senator (Name] to support a clean, multi-year extension of the Affordable Care Act tax credits.
These credits are essential for millions of families who rely on them to afford health insurance coverage.
(Feel free to add how it affects you.)
Thank you.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:hedpcce7vylvdgibxuxjsuzb/bafkreibyhgmfqasymtafsz6kaktqseens6y5p5qcwrwkvjf76nuf7uyar4@jpeg)
January 12, 2026 at 5:00 PM
Positive news regarding the ACA!
The House of Representatives passed bipartisan legislation to extend ACA subsidies. Ask your senator to support a clean, multi-year extension of the tax credits. Sample wording in graphic. https://www.congress.gov/members/find-your-member
#ACA #PwME #Disability
The House of Representatives passed bipartisan legislation to extend ACA subsidies. Ask your senator to support a clean, multi-year extension of the tax credits. Sample wording in graphic. https://www.congress.gov/members/find-your-member
#ACA #PwME #Disability
Reposted by Cynthia Johnson
This donor perspective captures why Bateman Horne Center exists.
Our mission is built on three pillars - clinical care, research, and education - so people with ME/CFS receive care now while progress continues.
Thank you to our donors who make all three pillars possible. 💙
Our mission is built on three pillars - clinical care, research, and education - so people with ME/CFS receive care now while progress continues.
Thank you to our donors who make all three pillars possible. 💙
January 12, 2026 at 9:52 PM
This donor perspective captures why Bateman Horne Center exists.
Our mission is built on three pillars - clinical care, research, and education - so people with ME/CFS receive care now while progress continues.
Thank you to our donors who make all three pillars possible. 💙
Our mission is built on three pillars - clinical care, research, and education - so people with ME/CFS receive care now while progress continues.
Thank you to our donors who make all three pillars possible. 💙
Reposted by Cynthia Johnson
📣 Job Opportunity | Reintroduction Planning Manager
This position will support a new 3-year grant focused on tribal-led sea otter reintroduction planning in Oregon.
🗓 Apply by: January 26, 2026
🔗 Full job description & application: www.elakhaalliance.org/employment/
#NowHiring #OceanJobs #Oregon
This position will support a new 3-year grant focused on tribal-led sea otter reintroduction planning in Oregon.
🗓 Apply by: January 26, 2026
🔗 Full job description & application: www.elakhaalliance.org/employment/
#NowHiring #OceanJobs #Oregon
January 6, 2026 at 10:50 PM
📣 Job Opportunity | Reintroduction Planning Manager
This position will support a new 3-year grant focused on tribal-led sea otter reintroduction planning in Oregon.
🗓 Apply by: January 26, 2026
🔗 Full job description & application: www.elakhaalliance.org/employment/
#NowHiring #OceanJobs #Oregon
This position will support a new 3-year grant focused on tribal-led sea otter reintroduction planning in Oregon.
🗓 Apply by: January 26, 2026
🔗 Full job description & application: www.elakhaalliance.org/employment/
#NowHiring #OceanJobs #Oregon
Reposted by Cynthia Johnson
Ludwig Princeton researchers led by Yibin Kang, Cao Fang and Mark Esposito report how a vitamin A derivative—retinoic acid—disrupts anti-cancer immune responses & the efficacy of a cancer vaccine + drug candidates to target both mechanisms for cancer immunotherapy.
bit.ly/4sItUdV
bit.ly/4sItUdV
January 5, 2026 at 6:34 PM
Ludwig Princeton researchers led by Yibin Kang, Cao Fang and Mark Esposito report how a vitamin A derivative—retinoic acid—disrupts anti-cancer immune responses & the efficacy of a cancer vaccine + drug candidates to target both mechanisms for cancer immunotherapy.
bit.ly/4sItUdV
bit.ly/4sItUdV
Reposted by Cynthia Johnson
Join the Portland Chapter of HCAO on Saturday January 10th, at 4:30 pm at Zidell Yards for our Art Show and Silent Auction!
Step into an evening of elegance and purpose—our silent auction invites you to bid on exquisite treasures, all in support of a cause that truly matters.
Step into an evening of elegance and purpose—our silent auction invites you to bid on exquisite treasures, all in support of a cause that truly matters.
January 6, 2026 at 12:40 AM
Join the Portland Chapter of HCAO on Saturday January 10th, at 4:30 pm at Zidell Yards for our Art Show and Silent Auction!
Step into an evening of elegance and purpose—our silent auction invites you to bid on exquisite treasures, all in support of a cause that truly matters.
Step into an evening of elegance and purpose—our silent auction invites you to bid on exquisite treasures, all in support of a cause that truly matters.
Reposted by Cynthia Johnson
The coming year will be a real challenge as we find out how our government agencies have been restructured, whom we are able to speak with, and how to take action that actually moves the needle toward understanding and treating ME/CFS. Working together, we are up to the challenge! Let’s go, 2026!
January 2, 2026 at 8:09 PM
The coming year will be a real challenge as we find out how our government agencies have been restructured, whom we are able to speak with, and how to take action that actually moves the needle toward understanding and treating ME/CFS. Working together, we are up to the challenge! Let’s go, 2026!
Reposted by Cynthia Johnson
A new chapter is beginning at BHC: https://bit.ly/3KfdDvj
We’re moving from creating resources to expanding access through the Access to Care Model, helping patients with ME/CFS, Long COVID & other IACCs receive informed, coordinated care, no matter where they live.
We’re moving from creating resources to expanding access through the Access to Care Model, helping patients with ME/CFS, Long COVID & other IACCs receive informed, coordinated care, no matter where they live.
BHC Redefines Access to Care
We’re entering a new chapter at the Bateman Horne Center. After years of building evidence-informed tools like the Clinical Care Guide, we’re now turning kno...
youtu.be
November 29, 2025 at 12:34 PM
A new chapter is beginning at BHC: https://bit.ly/3KfdDvj
We’re moving from creating resources to expanding access through the Access to Care Model, helping patients with ME/CFS, Long COVID & other IACCs receive informed, coordinated care, no matter where they live.
We’re moving from creating resources to expanding access through the Access to Care Model, helping patients with ME/CFS, Long COVID & other IACCs receive informed, coordinated care, no matter where they live.
Reposted by Cynthia Johnson
We have been asked to share the fundraiser for this community member! @rarediseasepatient.bsky.social is facing being unhoused as of January 9th. They are asking for donations in honor of their 55th birthday.
Please share: gofund.me/80af6f2c9
#pwME #RareDisease #MECFS #Spoonie
Please share: gofund.me/80af6f2c9
#pwME #RareDisease #MECFS #Spoonie
January 7, 2026 at 6:13 PM
We have been asked to share the fundraiser for this community member! @rarediseasepatient.bsky.social is facing being unhoused as of January 9th. They are asking for donations in honor of their 55th birthday.
Please share: gofund.me/80af6f2c9
#pwME #RareDisease #MECFS #Spoonie
Please share: gofund.me/80af6f2c9
#pwME #RareDisease #MECFS #Spoonie