iiinova — where your digital self keeps evolving

Reposted by Cynthia Johnson

#MEAction Network @meactnet.bsky.social · 18/09/2026

When asked whether they are looking at doing a cohort that are aging with ME/CFS...Klimas says.."I would love to do this study..would someone help me find the funding?"

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Cynthia Johnson @minetodo.bsky.social · 01/10/2026

Timely help is greatly needed! As you are able, please give to this new Friends of Cynthia Johnson Fall 2026 GoFundMe. And sharing with others would be greatly appreciated. 💛 Thank you for your kindness and help! #StandByMEcfs #StillSickStillFighting #pwME #MEcfs gofund.me/edb78da50

gofund.me

Donate to Friends of Cynthia Johnson - Fall 2026 - Health Care, Etc., organized by Cynthia Johnson

Dear Friends of Cynthia Johnson and kind souls: As you a… Cynthia Johnson needs your support for Friends of Cynthia Johnson - Fall 2026 - Health Care, Etc.

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Reposted by Cynthia Johnson

#MEAction Network @meactnet.bsky.social · 10/09/2026

We are sharing a fundraiser for a member of our community in need of timely help with medical, health care and disability related expenses as well as critical basic monthly living costs. Cynthia is a long-time member of our community. #Disability Our policy: docs.google.com/document/d/1...

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Ludwig Cancer Research @ludwigcancer.bsky.social · 22/09/2026

Ludwig Institute for Cancer Research is partnering with @keystonesymposia.bsky.social for a meeting on Tumor and Host Metabolism: Integrating Molecular, Cellular, and Systemic Interactions at Ludwig @princeton.edu on March 7-10, 2027.

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Reposted by Cynthia Johnson

AAPD - The American Association of People with Disabilities @aapd.com · 24/09/2026

Update to the Texas v. Kennedy case. Some community integration regulations from Section 504 of the Rehab. Act of 1973 will no longer be in effect. Full statement at: www.aapd.com/aapd-statement-on-ruli…

Today, a judge sided with the Department of Justice (DOJ), Department of Health and Human Services (HHS), and Texas, Alaska, Florida, Louisiana, and Montana in the Texas v. Kennedy case.

This will end some of the 2024 community integration regulations under Section 504 of the Rehabilitation Act of 1973.

This is a step backward for our
community. However, the judge did not find that Section 504 or the community integration mandate are unconstitutional.

Remember: We still have rights. The Americans with Disabilities Act is still the law. Section 504 is still the law. The Olmstead decision is still the law.

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Cynthia Johnson @minetodo.bsky.social · 22/09/2026

As you are able, please give to this new Friends of Cynthia Johnson Fall 2026 GoFundMe. Timely help is greatly needed! And sharing with others would be greatly appreciated. 💛 Thank you for your kindness and help! #StandByMEcfs #StillSickStillFighting #pwME #MEcfs gofund.me/edb78da50

gofund.me

Donate to Friends of Cynthia Johnson - Fall 2026 - Health Care, Etc., organized by Cynthia Johnson

Dear Friends of Cynthia Johnson and kind souls: As you a… Cynthia Johnson needs your support for Friends of Cynthia Johnson - Fall 2026 - Health Care, Etc.

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Cynthia Johnson @minetodo.bsky.social · 14/09/2026

New Autumn 2026 GoFundMe 💛💛💛 Please give as you are able! Both one-time and monthly recurring gift options. And please help get the word out by sharing with other kind souls. With gratitude, Cynthia www.gofundme.com/f/Friends-of... #StandByMEcfs #StillSickStillFighting #pwME #MEcfs

gofundme.com

Donate to Friends of Cynthia Johnson - Fall 2026 - Health Care, Etc., organized by Cynthia Johnson

Dear Friends of Cynthia Johnson and kind souls: As you a… Cynthia Johnson needs your support for Friends of Cynthia Johnson - Fall 2026 - Health Care, Etc.

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Reposted by Cynthia Johnson

#MEAction Network @meactnet.bsky.social · 18/09/2026

The first ME/CFS CDC meeting since 2024 starts in less than an hour! #MyalgicEncephalomyelitis #MECFS

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 18/09/2026

Last day to complete the Understanding Post-Exertional Symptom Worsening in ME/CFS survey. Your responses go directly into CTN Lite trial design — shaping the terminology, outcome measures, and how crashes are defined and measured. 👉 Take the Survey: ow.ly/AVBY50ZPaJM

Open Medicine Foundation announces last day to participate in ME/CFS post-exertional symptom worsening study closing September 18.

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Reposted by Cynthia Johnson

#MEAction Network @meactnet.bsky.social · 15/09/2026

NIH UPDATE: NIAID has released a proposal to eliminate its Division of Clinical Research (DCR) & move the division’s programs and responsibilities into other parts of the Institute. #MEAction has sent a detailed letter to NIAID by email in response to the proposal. www.meaction.net/post/nationa...

NIH update announces NIAID reorganization with MEAction raising concerns about effects on ME and Long COVID research. Photo of NIH building under text: NIAID proposes reorganization. MEAction submits comment and shares concerns about impact on ME and Long COVID research.

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Solve M.E. @solveme.bsky.social · 16/09/2026

1/ 🚨Take action by Friday! NIAID has proposed eliminating its Division of Clinical Research — the infrastructure behind its clinical trials — on a public comment window of just five days. #MECFS #LongCOVID

Solve M.E. action alert on a deep teal background. Headline: Take action by Friday. Text: NIAID has proposed eliminating its Division of Clinical Research, the infrastructure behind clinical trials, on a five-day comment window. Comment by Sept 18.

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Cynthia Johnson @minetodo.bsky.social · 09/09/2026

As you are able, please give to this new Friends of Cynthia Johnson Fall 2026 GoFundMe. Timely help is greatly needed! And sharing with others would be greatly appreciated. Thank you for your kindness and help! 💛 www.gofundme.com/f/Friends-of... #StandByMEcfs #StillSickStillFighting #pwME #MEcfs

gofundme.com

Donate to Friends of Cynthia Johnson - Fall 2026 - Health Care, Etc., organized by Cynthia Johnson

Dear Friends of Cynthia Johnson and kind souls: As you a… Cynthia Johnson needs your support for Friends of Cynthia Johnson - Fall 2026 - Health Care, Etc.

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Cynthia Johnson @minetodo.bsky.social · 14/09/2026

gofundme.com

Donate to Friends of Cynthia Johnson - Fall 2026 - Health Care, Etc., organized by Cynthia Johnson

Dear Friends of Cynthia Johnson and kind souls: As you a… Cynthia Johnson needs your support for Friends of Cynthia Johnson - Fall 2026 - Health Care, Etc.

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Reposted by Cynthia Johnson

#MEAction Network @meactnet.bsky.social · 11/09/2026

Starting soon! Please note it will be recorded for those unable to attend! MEAction's Scientific Director Jaime Seltzer @exceedhergrasp1.bsky.social is attending as she has been the previous two days as well. Take care all! #MyalgicEncephalomyelitis #MECFS

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026

Rob Phair up now: the Itaconate Shunt.

Itaconate Shunt: a short circuit, two toxins, and a fuel leak

Rob Phair
Integrative Bioinformatics Inc
Mountain View, California USA

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Reposted by Cynthia Johnson

Open Medicine Foundation (OMF) @openmedf.bsky.social · 10/09/2026

From Dr. Ronald W. Davis: "I'm excited to announce our lineup of speakers for our upcoming Community Symposium on September 11! It will be recorded for those who cannot attend." Register here: ow.ly/EtaX50ZLXkS

Schedule for Stanford Medicine's ME/CFS Molecular Basis Symposium on September 11, 2026, listing speakers and topics from 8:00 am to 4:30 pm.

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#MEAction Network @meactnet.bsky.social · 11/09/2026

Attending the Community Symposium on the Molecular Basis of ME/CFS Stanford University. Ron Davis says this symposium has been "the best meeting I have been to for ME/cfs." The previous days are confidential but today is open to the community. It will be recorded & shared! @openmedf.bsky.social

Photo of Ron Davis and Janet Dafoe starting the Symposium. (White elder man and woman sitting in a library on a screen for the meeting)

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026

Carmen Schiebenbogen up now!

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026

At the Stanford #MECFS Conference's Community Symposium; since this day is open, I'll be covering it starting here: 🧪

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Reposted by Cynthia Johnson

#MEAction Network @meactnet.bsky.social · 10/09/2026

Content note: suicide loss . . We hold those we have lost in our hearts always. We must mourn together. Join us in lighting a candle to show your support for suicide prevention, to remember a loved one and for the survivors of suicide. Resources: www.meaction.net/crisis-resources #WSPD

A lit candle glowing softly against a dark background with a message honoring those lost to suicide and encouraging support on World Suicide Prevention Day. Text in full: We hold those we have lost in our hearts always. We say your name. We remember and carry you with us. Join us in lighting a candle to show your support for suicide prevention, to remember a loved one and for the survivors of suicide. World Suicide Prevention Day.

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Reposted by Cynthia Johnson

julianlennon.bsky.social @julianlennon.bsky.social · 10/09/2026

❤️ One Mother… One Life… Forever Thankful ❤️🙏🏼🕊️😘

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Reposted by Cynthia Johnson

It's ME(Jaime) @exceedhergrasp1.bsky.social · 09/09/2026

Just about made it through six hours of the Stanford Working Group alive! Don't forget the community symposium is this Friday!

A picture of me, a white woman with long brown hair, brown glasses, and a brown and black patterned dress looking into the camera. I took tired but pleased

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 10/09/2026

Registration link for that is here: med.stanford.edu/sgtc.html

med.stanford.edu

Welcome to SGTC

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Reposted by Cynthia Johnson

Bateman Horne Center @batemanhornecenter.bsky.social · 08/09/2026

Tomorrow: Join us for “Coffee” with a Clinician. Our panel will explore the signs and symptoms of orthostatic intolerance and dysautonomia, along with assessment, diagnosis and common in-office testing methods. Sept. 9 at 10 a.m. MDT | Free on Zoom Register: bit.ly/3JCHAFq

Coffee with a Clinician - Wed Sept 9, 10am MDT. Chapter 7: Assessment of OI & dysautonomia.

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Reposted by Cynthia Johnson

The Tyee @thetyee.ca · 07/09/2026

Juneau-based startup Sitkana hopes to harness the tides of coastal Alaska for dependable energy — and play a key part in the Pacific Northwest’s energy transition. thetyee.ca/WhatWorks/20...

thetyee.ca

In Alaska, Sitkana Brings Tidal Energy to the People | The Tyee

The startup’s underwater turbines are designed to power isolated communities along the coast.

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Cynthia Johnson @minetodo.bsky.social · 09/09/2026

gofundme.com

Donate to Friends of Cynthia Johnson - Fall 2026 - Health Care, Etc., organized by Cynthia Johnson

Dear Friends of Cynthia Johnson and kind souls: As you a… Cynthia Johnson needs your support for Friends of Cynthia Johnson - Fall 2026 - Health Care, Etc.

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Reposted by Cynthia Johnson

Bateman Horne Center @batemanhornecenter.bsky.social · 01/09/2026

The BHC Clinical Care Guide is free to download; and also available in print on Amazon. Access practical, evidence-informed guidance for ME/CFS, Long COVID and other infection-associated chronic conditions. Download: bit.ly/432YdzF Order: www.amazon.com/dp/B0G3CNDDSB

Clinical Care Guide for managing ME/CFS and long COVID displayed; available on Amazon.

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julianlennon.bsky.social @julianlennon.bsky.social · 31/08/2026

This is the final week to view my exhibition, ‘Mosaic’, at Leica Gallery Prague. The works are on display through September 6th. www.lgp.cz/event/mozaik...

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Reposted by Cynthia Johnson

#MEAction Network @meactnet.bsky.social · 29/08/2026

As we come to the end of Severe ME Awareness month, we want to share so much love to each member of our community - whether you can be online or whether we know your story - we hold you in love. We fight for you. We show up over and over determined to create change. #PwME #SevereME

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#MEAction Network @meactnet.bsky.social · 29/08/2026

We have grieved for those we have never met. We carry names written on our hearts. We hold vigil outside those doors where someone inside cannot handle another human’s presence. We bear witness to your suffering and your joy. We are honored to share your stories, your art, your hopes, your pain.

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#MEAction Network @meactnet.bsky.social · 29/08/2026

Ways you can help and join in: 1. Share your story. Amplify the stories of others. We have been sharing throughout the month. 2. Visit our Severe ME Artists Project. We have 6 years worth of powerful art. www.meaction.net/severe-me-ar...

meaction.net

Severe ME Artists Project 2026

#MEAction is excited to present this year's Severe ME Artists project in recognition of Severe ME Awareness Day!

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Reposted by Cynthia Johnson

Open Medicine Foundation (OMF) @openmedf.bsky.social · 25/08/2026

2026 Community Symposium on the Molecular Basis of #MECFS Register here: stanford.zoom.us/webinar/regi...

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julianlennon.bsky.social @julianlennon.bsky.social · 28/08/2026

This is the last weekend to purchase my “Vineyard” Limited Edition print. store.julianlennon.com

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Reposted by Cynthia Johnson

The Writers Guild Foundation @wgfoundation.bsky.social · 27/08/2026

We are excited to announce our 2026 Veterans Fellowship Cohort! Congratulations to the 5 candidates selected! Thanks for helping us share the news, Deadline: deadline.com/2026/08/writ...

deadline.com

Writers Guild Foundation Taps 2026 Veterans Fellowship Cohort

The Writers Guild Foundation has revealed the latest cohort military veterans to participate in its Veterans Fellowship program.

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Reposted by Cynthia Johnson

PBS News @pbsnews.org · 25/08/2026

Dolly Parton, the country music icon whose soaring vibrato vocals, poignant songwriting and sparkling costumes defined her rise from a log cabin in the Tennessee mountains to the height of stardom and acclaim, has died. She was 80 years old. to.pbs.org/4irwxhd

pbs.org

Dolly Parton, beloved music star, actor and philanthropist, dies at 80

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