Cynthia Johnson
@minetodo.bsky.social
Storyteller. Advocate. Stand By ME/CFS!
#StandByMEcfs #StillSickStillFighting #MEcfs since 2009
#StandByMEcfs #StillSickStillFighting #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
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
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
October 13, 2025 at 10:51 PM
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
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
Reposted by Cynthia Johnson
Today, hundreds of millions face #MECFS & #LongCOVID without FDA-approved treatments. Until December 2, your support goes 3X further to advance critical research and bring us closer to answers.
💙Donate today: ow.ly/rZEb50Xr8wI.
💙Donate today: ow.ly/rZEb50Xr8wI.
November 13, 2025 at 3:30 PM
Today, hundreds of millions face #MECFS & #LongCOVID without FDA-approved treatments. Until December 2, your support goes 3X further to advance critical research and bring us closer to answers.
💙Donate today: ow.ly/rZEb50Xr8wI.
💙Donate today: ow.ly/rZEb50Xr8wI.
Reposted by Cynthia Johnson
This year has been heavy—political whiplash, uncertainty, and real harm for our community. #MEAction is here, advocating on the ground.
Remember, HOPE is a sweet rebellion.
#MEAction is a lantern in the darkness.
We can only continue our work with your support. www.meaction.net/lantern-in-t...
Remember, HOPE is a sweet rebellion.
#MEAction is a lantern in the darkness.
We can only continue our work with your support. www.meaction.net/lantern-in-t...
November 7, 2025 at 5:00 PM
This year has been heavy—political whiplash, uncertainty, and real harm for our community. #MEAction is here, advocating on the ground.
Remember, HOPE is a sweet rebellion.
#MEAction is a lantern in the darkness.
We can only continue our work with your support. www.meaction.net/lantern-in-t...
Remember, HOPE is a sweet rebellion.
#MEAction is a lantern in the darkness.
We can only continue our work with your support. www.meaction.net/lantern-in-t...
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
Our annual two-day celebration of the craft of writing for film and TV returns on December 5-6! Tickets for WGFestival 2025 are on sale NOW! ✏️✨
Visit wgfestival.org to learn more and secure your pass today!
Visit wgfestival.org to learn more and secure your pass today!
November 7, 2025 at 10:19 PM
Our annual two-day celebration of the craft of writing for film and TV returns on December 5-6! Tickets for WGFestival 2025 are on sale NOW! ✏️✨
Visit wgfestival.org to learn more and secure your pass today!
Visit wgfestival.org to learn more and secure your pass today!
Reposted by Cynthia Johnson
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
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
April 4, 2025 at 8:45 PM
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
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
Reposted by Cynthia Johnson
You are not forgotten
I see your faces,
I know your names,
I remember your stories.
#StandByMEcfs #StillSickStillFighting #MillionsMissing #TeachMETreatME #GlobalVoiceForME #EndMEcfs
I see your faces,
I know your names,
I remember your stories.
#StandByMEcfs #StillSickStillFighting #MillionsMissing #TeachMETreatME #GlobalVoiceForME #EndMEcfs
March 5, 2025 at 9:35 PM
You are not forgotten
I see your faces,
I know your names,
I remember your stories.
#StandByMEcfs #StillSickStillFighting #MillionsMissing #TeachMETreatME #GlobalVoiceForME #EndMEcfs
I see your faces,
I know your names,
I remember your stories.
#StandByMEcfs #StillSickStillFighting #MillionsMissing #TeachMETreatME #GlobalVoiceForME #EndMEcfs
Reposted by Cynthia Johnson
To learn more about ME/CFS, check out:
Bateman Horne Center (www.batemanhornecenter.org).
MEAction Network (www.meaction.net),
Open Medicine Foundation (www.omf.ngo),
Solve M.E. (www.solvecfs.org)
#StandByMEcfs #StillSickStillFighting #MillionsMissing
Bateman Horne Center (www.batemanhornecenter.org).
MEAction Network (www.meaction.net),
Open Medicine Foundation (www.omf.ngo),
Solve M.E. (www.solvecfs.org)
#StandByMEcfs #StillSickStillFighting #MillionsMissing
May 13, 2025 at 10:44 PM
To learn more about ME/CFS, check out:
Bateman Horne Center (www.batemanhornecenter.org).
MEAction Network (www.meaction.net),
Open Medicine Foundation (www.omf.ngo),
Solve M.E. (www.solvecfs.org)
#StandByMEcfs #StillSickStillFighting #MillionsMissing
Bateman Horne Center (www.batemanhornecenter.org).
MEAction Network (www.meaction.net),
Open Medicine Foundation (www.omf.ngo),
Solve M.E. (www.solvecfs.org)
#StandByMEcfs #StillSickStillFighting #MillionsMissing
Reposted by Cynthia Johnson
Stand By ME/CFS!
Please watch my Stand By ME/CFS video. Hear my story.
I suffer from ME/CFS along with millions of others.
We need your voice and support.
Become an ally in 2025!
#StandByMEcfs 2025
#StillSickStillFighting since 2009
#MillionsMissing of all ages
www.youtube.com/watch?v=s9cM...
Please watch my Stand By ME/CFS video. Hear my story.
I suffer from ME/CFS along with millions of others.
We need your voice and support.
Become an ally in 2025!
#StandByMEcfs 2025
#StillSickStillFighting since 2009
#MillionsMissing of all ages
www.youtube.com/watch?v=s9cM...
Stand By ME/CFS | Cynthia Johnson, Edge Prize 2023
YouTube video by The Edge Prize
www.youtube.com
May 13, 2025 at 10:41 PM
Stand By ME/CFS!
Please watch my Stand By ME/CFS video. Hear my story.
I suffer from ME/CFS along with millions of others.
We need your voice and support.
Become an ally in 2025!
#StandByMEcfs 2025
#StillSickStillFighting since 2009
#MillionsMissing of all ages
www.youtube.com/watch?v=s9cM...
Please watch my Stand By ME/CFS video. Hear my story.
I suffer from ME/CFS along with millions of others.
We need your voice and support.
Become an ally in 2025!
#StandByMEcfs 2025
#StillSickStillFighting since 2009
#MillionsMissing of all ages
www.youtube.com/watch?v=s9cM...
Reposted by Cynthia Johnson
Please help us wish @wilhelminaj.bsky.social a very happy birthday!
Wilhelmina is a force in our community. We would not be where we are without her. We are truly honored and touched by her gift which will be matched!
#pwME
Wilhelmina is a force in our community. We would not be where we are without her. We are truly honored and touched by her gift which will be matched!
#pwME
I am celebrating my birthday by making a donation to @meactnet.bsky.social to keep the struggle going in these difficult times. Here’s how to join me in supporting this essential work.
www.meaction.net/lantern-in-t...
www.meaction.net/lantern-in-t...
BE A LANTERN IN THE DARKNESS | #MEAction
Be the light by helping #MEAction raise $150,000 by December 31st. We have a $50,000 matching donation so your dollars go further!
www.meaction.net
November 12, 2025 at 9:39 PM
Please help us wish @wilhelminaj.bsky.social a very happy birthday!
Wilhelmina is a force in our community. We would not be where we are without her. We are truly honored and touched by her gift which will be matched!
#pwME
Wilhelmina is a force in our community. We would not be where we are without her. We are truly honored and touched by her gift which will be matched!
#pwME
Reposted by Cynthia Johnson
I am celebrating my birthday by making a donation to @meactnet.bsky.social to keep the struggle going in these difficult times. Here’s how to join me in supporting this essential work.
www.meaction.net/lantern-in-t...
www.meaction.net/lantern-in-t...
BE A LANTERN IN THE DARKNESS | #MEAction
Be the light by helping #MEAction raise $150,000 by December 31st. We have a $50,000 matching donation so your dollars go further!
www.meaction.net
November 12, 2025 at 8:45 PM
I am celebrating my birthday by making a donation to @meactnet.bsky.social to keep the struggle going in these difficult times. Here’s how to join me in supporting this essential work.
www.meaction.net/lantern-in-t...
www.meaction.net/lantern-in-t...
Reposted by Cynthia Johnson
Today is my 78th birthday. When I first became ill in 1983, I was 33. I was 38 when I was diagnosed and attended my first support group meeting. Since then, I have worked with many wonderful people in the fight to make ME/CFS respected, funded, researched, understood, treated and, we hope, cured.
November 12, 2025 at 8:38 PM
Today is my 78th birthday. When I first became ill in 1983, I was 33. I was 38 when I was diagnosed and attended my first support group meeting. Since then, I have worked with many wonderful people in the fight to make ME/CFS respected, funded, researched, understood, treated and, we hope, cured.
Reposted by Cynthia Johnson
I am a strong supporter of advocacy that holds our government responsible for treating our illness with the same urgency as any other major health crisis. I trust the dedicated staff and volunteers of @meactnet.bsky.social to continue this fight, even when I can only fight from bed.
November 12, 2025 at 8:42 PM
I am a strong supporter of advocacy that holds our government responsible for treating our illness with the same urgency as any other major health crisis. I trust the dedicated staff and volunteers of @meactnet.bsky.social to continue this fight, even when I can only fight from bed.
Reposted by Cynthia Johnson
It was my pleasure to be interviewed last month by students who are part of the Young Citizens of the World program.
Their thoughtful questions sparked conversations about humanitarianism, music, photography, and nature.
Watch our full interview on YouTube:
www.youtube.com/watch?v=w91R...
Their thoughtful questions sparked conversations about humanitarianism, music, photography, and nature.
Watch our full interview on YouTube:
www.youtube.com/watch?v=w91R...
November 11, 2025 at 6:31 PM
It was my pleasure to be interviewed last month by students who are part of the Young Citizens of the World program.
Their thoughtful questions sparked conversations about humanitarianism, music, photography, and nature.
Watch our full interview on YouTube:
www.youtube.com/watch?v=w91R...
Their thoughtful questions sparked conversations about humanitarianism, music, photography, and nature.
Watch our full interview on YouTube:
www.youtube.com/watch?v=w91R...
Reposted by Cynthia Johnson
We'd like to invite you to the next webinar in our series about the intersection of universal healthcare with EVERYTHING. Our Veterans webinar is the day after veterans day!
HEALTH CARE FOR ALL WHO SERVED
Reinforcing the VA, not replacing it.
Wednesday November 12th, 6:00 PM
HEALTH CARE FOR ALL WHO SERVED
Reinforcing the VA, not replacing it.
Wednesday November 12th, 6:00 PM
November 10, 2025 at 5:28 AM
We'd like to invite you to the next webinar in our series about the intersection of universal healthcare with EVERYTHING. Our Veterans webinar is the day after veterans day!
HEALTH CARE FOR ALL WHO SERVED
Reinforcing the VA, not replacing it.
Wednesday November 12th, 6:00 PM
HEALTH CARE FOR ALL WHO SERVED
Reinforcing the VA, not replacing it.
Wednesday November 12th, 6:00 PM
Reposted by Cynthia Johnson
Join a virtual conversation with Grist.org Senior Staff Writer Anita Hofschneider and Yurok attorney, activist, and author Amy Bowers Cordalis to talk about her new book "The Water Remembers."
Register for this free online event: buff.ly/IPiz6Xu
Register for this free online event: buff.ly/IPiz6Xu
November 8, 2025 at 7:00 PM
Join a virtual conversation with Grist.org Senior Staff Writer Anita Hofschneider and Yurok attorney, activist, and author Amy Bowers Cordalis to talk about her new book "The Water Remembers."
Register for this free online event: buff.ly/IPiz6Xu
Register for this free online event: buff.ly/IPiz6Xu
Reposted by Cynthia Johnson
“Part 2 of Navigating Clinical Uncertainty” - practical strategies for bridging the patient-provider communication gap suggested by US clinicians, a caregiver and person with ME/CFS. Wed 12 Nov 5pm UK Register in advance.
tinyurl.com/x3w8jbdj
tinyurl.com/x3w8jbdj
Coffee with a Clinician
Join expert medical providers to learn how BHC manages care for individuals with ME/CFS, Long COVID, and co-existing conditions.
tinyurl.com
November 7, 2025 at 3:43 PM
“Part 2 of Navigating Clinical Uncertainty” - practical strategies for bridging the patient-provider communication gap suggested by US clinicians, a caregiver and person with ME/CFS. Wed 12 Nov 5pm UK Register in advance.
tinyurl.com/x3w8jbdj
tinyurl.com/x3w8jbdj
Reposted by Cynthia Johnson
HAVE YOU SEEN THIS MAN? The Umatilla Tribal Police Department is seeking the public’s help to find him.
Search continues a month after man reported missing on Umatilla Indian Reservation
The Umatilla Tribal Police Department is continuing to search for Wesley Dixon Jones, a 71-year-old man who went missing on Oct. 5, and is asking anyone with information to contact them.
www.koin.com
November 8, 2025 at 1:40 AM
HAVE YOU SEEN THIS MAN? The Umatilla Tribal Police Department is seeking the public’s help to find him.
Reposted by Cynthia Johnson
Registration is now closed, but if you already registered (or you’re just curious) and want to check out our updated conference program or attendee guide, please check out our website.
icancme.ca/research/202...
icancme.ca/research/202...
2025 ME Conference - ICanCME
icancme.ca
November 3, 2025 at 3:54 PM
Registration is now closed, but if you already registered (or you’re just curious) and want to check out our updated conference program or attendee guide, please check out our website.
icancme.ca/research/202...
icancme.ca/research/202...
Reposted by Cynthia Johnson
#ICanCME2025 is happening this week!
This was an initiative driven by people with ME and their loved ones with the support of many along the way! We’re so thankful for everyone’s support so far.
And please be patient with us this week if we run into any issues. 🤞💙
This was an initiative driven by people with ME and their loved ones with the support of many along the way! We’re so thankful for everyone’s support so far.
And please be patient with us this week if we run into any issues. 🤞💙
November 3, 2025 at 3:51 PM
#ICanCME2025 is happening this week!
This was an initiative driven by people with ME and their loved ones with the support of many along the way! We’re so thankful for everyone’s support so far.
And please be patient with us this week if we run into any issues. 🤞💙
This was an initiative driven by people with ME and their loved ones with the support of many along the way! We’re so thankful for everyone’s support so far.
And please be patient with us this week if we run into any issues. 🤞💙
Reposted by Cynthia Johnson
💙 Triple Giving November (TGN) is returning!
From Nov 1–Dec 2, every dollar you give to OMF will be TRIPLED (up to $500,000) to advance #MECFS & #LongCOVID research. Learn what to expect during TGN here: ow.ly/oJb550XkvOB.
From Nov 1–Dec 2, every dollar you give to OMF will be TRIPLED (up to $500,000) to advance #MECFS & #LongCOVID research. Learn what to expect during TGN here: ow.ly/oJb550XkvOB.
October 30, 2025 at 5:38 PM
💙 Triple Giving November (TGN) is returning!
From Nov 1–Dec 2, every dollar you give to OMF will be TRIPLED (up to $500,000) to advance #MECFS & #LongCOVID research. Learn what to expect during TGN here: ow.ly/oJb550XkvOB.
From Nov 1–Dec 2, every dollar you give to OMF will be TRIPLED (up to $500,000) to advance #MECFS & #LongCOVID research. Learn what to expect during TGN here: ow.ly/oJb550XkvOB.
Reposted by Cynthia Johnson
🌟 Kick off a TRIPLE MATCH Fundraiser for OMF! 🌟
Follow this link to launch in as little as 60 seconds: www.omf.ngo/digital-fundraising-toolkit/. ALL donations to your fundraiser will be tripled between November 1 -December 2, 2025!
#MECFS #LongCOVID #pwME #pwLC
Follow this link to launch in as little as 60 seconds: www.omf.ngo/digital-fundraising-toolkit/. ALL donations to your fundraiser will be tripled between November 1 -December 2, 2025!
#MECFS #LongCOVID #pwME #pwLC
November 3, 2025 at 3:53 PM
🌟 Kick off a TRIPLE MATCH Fundraiser for OMF! 🌟
Follow this link to launch in as little as 60 seconds: www.omf.ngo/digital-fundraising-toolkit/. ALL donations to your fundraiser will be tripled between November 1 -December 2, 2025!
#MECFS #LongCOVID #pwME #pwLC
Follow this link to launch in as little as 60 seconds: www.omf.ngo/digital-fundraising-toolkit/. ALL donations to your fundraiser will be tripled between November 1 -December 2, 2025!
#MECFS #LongCOVID #pwME #pwLC
Reposted by Cynthia Johnson
Join us on Tuesday November 4th for our webinar discussing the success of Taiwan's National health insurance program, and the lessons we hope to bring forward with Oregon's system!
November 4th, 6 PM, with Dr. Chunhuei Chu, Dr. Rebecca Schoon, and Dr. I-Ming Parng of Taiwan's National Program.
November 4th, 6 PM, with Dr. Chunhuei Chu, Dr. Rebecca Schoon, and Dr. I-Ming Parng of Taiwan's National Program.
November 2, 2025 at 6:33 PM
Join us on Tuesday November 4th for our webinar discussing the success of Taiwan's National health insurance program, and the lessons we hope to bring forward with Oregon's system!
November 4th, 6 PM, with Dr. Chunhuei Chu, Dr. Rebecca Schoon, and Dr. I-Ming Parng of Taiwan's National Program.
November 4th, 6 PM, with Dr. Chunhuei Chu, Dr. Rebecca Schoon, and Dr. I-Ming Parng of Taiwan's National Program.