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minetodo.bsky.social
Cynthia Johnson
@minetodo.bsky.social
1.5K followers 400 following 130 posts
Storyteller. Advocate. Stand By ME/CFS! #StandByMEcfs #StillSickStillFighting #MEcfs since 2009
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minetodo.bsky.social
Cynthia Johnson @minetodo.bsky.social · Jan 6

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
6 25
Reposted by Cynthia Johnson
minetodo.bsky.social
Cynthia Johnson @minetodo.bsky.social · 2d
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
3 3
Reposted by Cynthia Johnson
batemanhornecenter.bsky.social
Bateman Horne Center @batemanhornecenter.bsky.social · 2d
A new study sheds light on why people with ME/CFS feel worse after activity.
Findings reveal an immune system on edge, energy production that falters, and gut barrier leaks fueling inflammation.
Read more: https://bit.ly/4q3i8sV
#MECFS #PEM #Research
When the Body’s Alarm Won’t Turn Off
Blog Summary Imagine if a fire alarm kept ringing long after the smoke was gone. That’s similar to what happens in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), where the body seems…
bit.ly
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Reposted by Cynthia Johnson
litsadremousis.bsky.social
Litsa Dremousis @litsadremousis.bsky.social · 2d
For everyone else who needs something to look forward to, Amy Poehler is hosting “SNL” tomorrow night 🎉

youtu.be/jnNyCBkZovY?...
Amy Poehler Meets the New SNL Cast Members
YouTube video by Saturday Night Live
youtu.be
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Reposted by Cynthia Johnson
opb.org
OPB @opb.org · 2d
Trees in three national forests in Oregon will be auctioned off for logging by the end of the month, even though the federal workers preparing these timber sales are not getting paid and many of their colleagues in the U.S. Forest Service are furloughed.
Logging in national forests in Oregon continues, despite government shutdown
The U.S. Forest Service plans to auction off trees in the Deschutes, Wallowa-Whitman and Umatilla national forests by the end of the month.
www.opb.org
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minetodo.bsky.social
Cynthia Johnson @minetodo.bsky.social · 2d
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
3 3
Reposted by Cynthia Johnson
minetodo.bsky.social
Cynthia Johnson @minetodo.bsky.social · Jan 6

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
6 25
Reposted by Cynthia Johnson
koin6.bsky.social
KOIN 6 News @koin6.bsky.social · 3d
Oregon Representative Hòa Nguyễn passed away Thursday morning at the age of 41 after a battle against cancer, state officials confirmed.
https://www.koin.com/news/oregon/oregon-rep-hoa-nguyen-passes-away-after-battle-with-cancer/?cid=bluesky_ 
Oregon Rep. Hòa Nguyễn passes away after battle with cancer
Oregon Representative Hòa Nguyễn passed away Thursday morning after a battle against cancer, state officials confirmed.
www.koin.com
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Reposted by Cynthia Johnson
meactnet.bsky.social
#MEAction Network @meactnet.bsky.social · 3d
@meactnet.bsky.social's Executive Director, Laurie Jones, wrote a op-ed about the medicaid work requirements that was recently published in MedPage Today!

Thank a look below!👇
medpagetoday.com
MedPage Today @medpagetoday.com · 4d
"There is nothing beautiful about shifting the burden onto those least able to bear it. But this is precisely what our nation is now poised to do."

ME/CFS and long COVID advocate Laurie Jones writes on Medicaid work requirements. https://www.medpagetoday.com/opinion/second-opinions/117839?trw=no
Opinion | Medicaid Work Requirements Will Devastate People With Invisible Disabilities
ME/CFS and long COVID patients must qualify as 'medically frail'
www.medpagetoday.com
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Reposted by Cynthia Johnson
batemanhornecenter.bsky.social
Bateman Horne Center @batemanhornecenter.bsky.social · 3d
Free, virtual ME conference (Nov 4–6, 1–5 pm ET).
BHC's Dr. Brayden Yellman speaks on dysautonomia & connective tissue disorders and joins the comorbidities Q&A panel.
Register: https://forms.gle/R8tJgR2x3WBNr9pF8

#ICanCME2025 #MECFS #LongCOVID #MedEdMatters #MedicalEducation
ICANCME Canadian Conference on Myalgic Encephalomyelitis, Nov 4-6, 2025, 1-5 PM Eastern. Virtual, free, and open to all. Register now.
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Reposted by Cynthia Johnson
openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 4d
🧬Science Wednesdays: Metabolism

There are a couple important ways metabolism is studied in ME/CFS. For one, the #mitochondria play a central role in metabolism and there’s a growing body of evidence showing mitochondrial dysfunction in #MECFS. (1/3)
Person wearing a white shirt is writing the word ‘metabolism’ in black on a transparent surface. Their hand and cheek are visible behind the surface.
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Reposted by Cynthia Johnson
openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 4d
Metabolomics is also an important way to study metabolism, trying to understand alterations in metabolism through changes in metabolite levels.

OMF’s Melbourne ME/CFS Collaboration has particular expertise in #metabolomics, incorporating it in many of their ME/CFS research studies.
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Reposted by Cynthia Johnson
openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 4d
👉 Learn more about their projects: ow.ly/4BnF50X8tcs.
Melbourne ME/CFS Collaboration
Melbourne ME/CFS Collaboration Precision research program to identify the unique biology of individuals and the unifying biological pathways of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME...
ow.ly
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Reposted by Cynthia Johnson
julianlennon.bsky.social
julianlennon.bsky.social @julianlennon.bsky.social · 4d
‘Happy Birthday’…
Only Love…. Always….
❤️🙏🏻❤️

P.S. 50 is just a number… 😘

📷: Dad (1965) PictureLux/The Hollywood Archive

📷: Sean (2012) Dave M. Benett
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Reposted by Cynthia Johnson
julianlennon.bsky.social
julianlennon.bsky.social @julianlennon.bsky.social · 4d
talkshop.live/watch/PKLdoW...
Julian Lennon
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Reposted by Cynthia Johnson
emergeaustralia.bsky.social
Emerge Australia @emergeaustralia.bsky.social · 5d
From Stigma to Science: Educating for Change 
 
Calling for action, investment and reform. Join Emerge Australia’s #MECFS & #LongCOVID Action Forum online 1pm – 3pm AEDT 30 Oct

Register to join online: zurl.co/wrNvx
This event will be recorded for viewing after.
Australian Parliament House in Canberra flying the Australian Flag. Text "JOIN OUR ME/CFS & Long COVID Action Forum ONLINE - 30 October 1pm-3pm (AEDT) Emerge Australia logo appears on the bottom
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Reposted by Cynthia Johnson
batemanhornecenter.bsky.social
Bateman Horne Center @batemanhornecenter.bsky.social · 4d
“If everyday tasks like standing in line or taking a shower leave you dizzy, exhausted, or foggy, you’re not alone.”
— Melanie Hoppers, MD

OI & #POTS is common in #MECFS & #LongCOVID. Learn signs + management tips: https://bit.ly/4eLc3eY

#POTSAwarenessMonth #UnitedForME
Woman leaning against a wall with her hand on her forehead, appearing fatigued. Text reads: "Living with Orthostatic Intolerance (OI)."
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Reposted by Cynthia Johnson
openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 10d
🔬Help advance #MECFS and #LongCOVID research by joining OMF’s StudyME, a free participant registry that connects you with researchers conducting studies in these areas. Healthy volunteers needed too!

👉 www.omf.ngo/studyme/

Already part of StudyME? Please share this post to reach more people.
The image shows a young woman in a laboratory setting. She is wearing a white lab coat over a pink shirt. In the top right corner, there is the StudyME logo, which features a globe-like design made of interconnected circles in shades of teal and navy, alongside the text "StudyME."
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Reposted by Cynthia Johnson
openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 6d
Give your car new purpose this Cartober!

When you donate your car, truck, motorcycle, RV, or boat to OMF, the proceeds from your sale will support #MECFS and #LongCOVID research.

To learn more, visit: ow.ly/4zvh50X74vv.
A person in a pink shirt holds a small yellow toy car in both hands. The background is softly blurred in shades of pink and purple. Text on the left side reads: “Every car can drive change. Support our mission with your car donation!”
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Reposted by Cynthia Johnson
twffofficial.bsky.social
The White Feather Foundation @twffofficial.bsky.social · 6d
Visit lupus.org.uk to learn more about lesser known/rare symptoms to watch for, hear stories from those diagnosed with lupus or to get help living with lupus. 🦋
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Reposted by Cynthia Johnson
batemanhornecenter.bsky.social
Bateman Horne Center @batemanhornecenter.bsky.social · 20d
☕ Introducing Coffee with a Clinician, launching Oct 2025!

Free monthly Zoom (30–45 mins) led by expert knowledge. Learn from the Clinical Care Guide or join Q&A.

An optional $5 “coffee” donation helps us connect with more clinicians worldwide: https://bit.ly/4grlbXr

#MECFS #LongCOVID #Fibro
Invitation to "Coffee with a Clinician" on Wednesday, October 8 at 10:00 am MDT. Visit batemanhornecenter.org/events to register
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Reposted by Cynthia Johnson
meactnet.bsky.social
#MEAction Network @meactnet.bsky.social · 13d
#MEAction is asking you to take action to save telehealth NOW!

You can call or email your member of Congress. To make this action easier, we have drafted up a sample script you can use: www.meactions.org/telehealth

#Telehealth #PwME #LongCovid #MECFS #Congress #Disability
Image of a megaphone at bottom corner and Capitol building in top right corner. Text: Contact congress today to keep telehealth!
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Reposted by Cynthia Johnson
elakhaalliance.bsky.social
Elakha Alliance @elakhaalliance.bsky.social · 6d
We’re honored to be a conservation partner with the Wildlife Conservation Network’s new Sea Otter Fund, which aims to raise over $40 million in private funding over the next decade to support sea otter restoration across the United States.
bloomberg.com
Bloomberg News @bloomberg.com · 8d
Happy Friday! We’ve got your weekly debrief of what went on in Washington, DC, amid the government shutdown. But first, sea otters.
Private Funding Is Set to Help California’s Sea Otters Recover
Happy Friday! We’ve got your weekly debrief of what went on in Washington, DC, amid the government shutdown. But first, sea otters.
bloom.bg
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Reposted by Cynthia Johnson
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 7d
The International Journal of Molecular Sciences is organizing a special issue on ME/CFS called "Molecular Pathologies and Treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome—2nd Edition."

www.mdpi.com/journal/ijms...

Screenshot from latest Science for ME weekly update

#MEcfs #CFS
Special Issue The International Journal of Molecular Sciences is organizing a special issue on ME/CFS called "Molecular Pathologies and Treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome—2nd Edition." Guest Editor is Prof. Dr. Elisa Oltra. The deadline for submissions is 31 March 2026
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Reposted by Cynthia Johnson
elakhaalliance.bsky.social
Elakha Alliance @elakhaalliance.bsky.social · 6d
There's a new #vegan and #glutenfree ice cream in town - AND it helps benefit #seaotter conservation 🦦! Meet Ottie's Oreo - a delicious treat from Kate's Ice Cream in #Portland in collab with @mikebennettart.bsky.social. Meet us on Thursday from 5-8pm for the launch party at #ThePortlandAquarium!
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Reposted by Cynthia Johnson
julianlennon.bsky.social
julianlennon.bsky.social @julianlennon.bsky.social · 6d
“The Screening Room” (2017)

After a visit to Ai Weiwei’s art studio in Berlin, we went to a Soho House screening room to watch “Beijing Spring”. I captured this moment that evening.

From My ‘Ai Weiwei’ Collection

Purchase info available at Artsy:

www.artsy.net/artwork/juli...
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