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Colleen Steckel

@colleensteckel.bsky.social

2.5K followers 1.6K following 1.4K posts

Advocate for #MyalgicEncephalomyelitis using ME-ICC. Contracted ME in 1989 Substack: https://colleensteckelmeiccinfo.substack.com/ Volunteer at www.MEadvocacy.org Aspiring writer of paranormal fiction

colleensteckelmeiccinfo.substack.com

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Colleen Steckel @colleensteckel.bsky.social · Feb 25

What do we know about #MyalgicEncephalomyelitis? We know a lot more than many realize.

See latest article from View from the Trenches of Myalgic Encephalomyelitis about the International Consensus Primer.

open.substack.com/pub/colleens...

Myalgic Encephalomyelitis IC Primer

A powerful tool to educate about ME

open.substack.com

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Reposted by Colleen Steckel

Billy Hanlon @bhanlon15.bsky.social · 2d

The Sick Times: 'Vyvgart brought us back to life, but the Long COVID trial was canceled. We are calling on the NIH and HHS to study the drug.'

By Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White

thesicktimes.org/2025/10/10/v...

Vyvgart brought us back to life, but the Long COVID trial was canceled. We are calling on the NIH and HHS to study the drug. - The Sick Times

We are a group of 53 individuals with Long COVID from across the U.S. In 2023, we joined a Long COVID clinical trial for Vyvgart (efgartigimod), a drug approved by the Food and Drug Administration (FD...

thesicktimes.org

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Colleen Steckel @colleensteckel.bsky.social · 2d

Thanks for creating the record of ME history.

Colleen Steckel @colleensteckel.bsky.social · 2d

Love that!

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Colleen Steckel @colleensteckel.bsky.social · 2d

Sigh... every year for over 30 years!

Reposted by Colleen Steckel

Texas Paul @realtexaspaul.com · 2d

You asked. My thoughts on the Qatar expansion of Mountain Home Air Base.

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Reposted by Colleen Steckel

hardknoxfirst.bsky.social @hardknoxfirst.bsky.social · 3d

Now, that most have died > "Long-dismissed ‘Gulf War Illness’ finally recognized with international medical code" #MECFS (Task & Purpose) on SmartNews: l.smartnews.com/p-6mK8rRiU/5... #SmartNews

Long-dismissed ‘Gulf War Illness’ finally recognized with international medical code (Task & Purpose)

Veterans who have long sought recognition for a medical condition linked to their service in the Gulf War earned a major victory last week with the approval ...

l.smartnews.com

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Colleen Steckel @colleensteckel.bsky.social · 3d

Weird to agree with Laura Loomer: “WTF IS AMERICA FIRST ABOUT ALLOWING QATAR TO HAVE A MILITARY BASE ON US SOIL? This is an abomination. So much for ‘Make America Safe Again.’ By letting funders of HAMAS and the Muslim Brotherhood have a military base on US soil.”

open.substack.com/pub/aaronpar...

BREAKING: Trump Allows Qatar to Build Military Facility in United States

Trump allies are already rebuking the President for this decision as his ties to Qatar grow deep.

open.substack.com

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Reposted by Colleen Steckel

ME/CFS Science @mecfsskeptic.bsky.social · 3d

1) The Physios for ME team published a randomized trial on pacing with a heart rate monitor. It included 32 patients with ME/CFS and 15 with Long Covid.

A brief breakdown of the main results 🧵

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Colleen Steckel @colleensteckel.bsky.social · 3d

I am still masking. I have avoided covid so far. 36 years of ME and really don't want to add LC to the heavy burden my body already carries with ME.

Colleen Steckel @colleensteckel.bsky.social · 4d

Tracking #MyalgicEncephalomyelitis research. I have found creating these lists helps me cut through the chaos. The more we know about the biology, the more clear it becomes that ME is a devastating biological disease that no behavior modification can cure.

open.substack.com/pub/colleens...

Canadian Consensus Criteria (ME/CFS-CCC)

Tracking research that may (or may not) apply to Myalgic Encephalomyelitis

open.substack.com

Colleen Steckel @colleensteckel.bsky.social · 5d

Agree about the limitations but this statement indicates there is too much reliance on vague criteria. "that would mean that about a quarter of people who really do have ME/CFS would not in fact have a positive test result." That vague ME/CFS criteria likely captured people who don't have ME.

Colleen Steckel @colleensteckel.bsky.social · 5d

Headline is inaccurate. The results need to be verified. Patient selection isn't clear but it seems all were homebound.

The paper includes a good list of immune dysfunction seen in #MyalgicEncephalomyelitis

Link to the paper: translational-medicine.biomedcentral.com/articles/10....

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Reposted by Colleen Steckel

ProPublica @propublica.org · 9d

“It’s disguised as work requirements and term limits, but in reality it’s a way to strip families of their benefits,” said Deborah Thrope of the National Housing Law Project. “This is a huge departure from how the HUD programs have been run.”

By @jessecoburn.bsky.social

Millions Could Lose Housing Aid Under Trump Plan

Drafts of unpublished rules obtained by ProPublica detail plans that would open the door to full-time work requirements, two-year limits on living in federally supported housing and stripping aid from...

www.propublica.org

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Reposted by Colleen Steckel

AllisonHaynes @allisondhaynes.bsky.social · 11d

#MyalgicEncephalomyelitis #EncefalomielitisMialgica #EncéphalomyéliteMyalgique #pwME
Much-anticipated Part 4 of Hillary's Low Blood Volume series. A current blood volume analysis test gives us hope for identifying/measuring vascular deficiencies & finding treatments.
www.hillaryjohnson.substack.com

www.hillaryjohnson.substack.com

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Colleen Steckel @colleensteckel.bsky.social · 12d

I contacted the lead author to confirm patient selection.

Colleen Steckel @colleensteckel.bsky.social · 12d

Very disappointed that the screening for subjects used the IOM report. That is not a research criteria. We need a follow up study to see if it applies to Myalgic Encephalomyelitis

open.substack.com/pub/colleens...

ME/CFS-IOM is a clinical criteria

Not a research criteria

open.substack.com

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Colleen Steckel @colleensteckel.bsky.social · 12d

I hope their information includes the ME IC Primer.

Reposted by Colleen Steckel

PBS News @pbsnews.org · 14d

Utah’s court system gives people accused of crimes an option to waive their legal right to a preliminary hearing and instead schedule an arraignment where they can enter a plea. https://to.pbs.org/4mM3S57

Suspect in Charlie Kirk assassination case faces a court hearing

The hearing Monday in Provo is open to the public, just a few miles from the Utah Valley University campus where many students are still processing trauma from the Sept. 10 shooting.

to.pbs.org

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Colleen Steckel @colleensteckel.bsky.social · 15d

If you are in the US or care about someone who lives here, this is a must watch. Heather Cox Richardson explains what is happening in our government. We are facing changes to that lead to an increase in the cost of health insurance - millions expected to lose theirs.

youtu.be/MKfWqPehJeI?...

Government Shutdown on the Horizon—Why It Matters | Explainer

YouTube video by Heather Cox Richardson

youtu.be

Colleen Steckel @colleensteckel.bsky.social · 15d

Wish it wasn't behind a paywall. Was pleased to see the #MyalgicEncephalomyelitis references indicate good resources used.

Colleen Steckel @colleensteckel.bsky.social · 15d

Disappointed to see the patient selection was Fukuda. While the results are interesting they may have nothing to do with ME.

Colleen Steckel @colleensteckel.bsky.social · 16d

Thank you for the synopsis.

Colleen Steckel @colleensteckel.bsky.social · 16d

That was part of the horrible attitude many of us endured (still endure).

Reposted by Colleen Steckel

AllisonHaynes @allisondhaynes.bsky.social · 17d

#pwME #MyalgicEncephalomyelitis
New M.E. Global Chronicle out today. Quarterly #MyalgicE news from around the globe. Longstanding highly recommended publication. Thanks to editors.
#EncefalomielitisMialgica
#EncéphalomyéliteMialgique
Table of Contents:
meglobalchronicle.wordpress.com/2025/09/24/t...

Table of contents

Editorial Severe ME ME and children Grassroot News Petitions Events Research Poem

meglobalchronicle.wordpress.com

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Reposted by Colleen Steckel

ME Centraal @mecentraal.bsky.social · 18d

🌍 No. 54 of the ME Global Chronicle is published!

It contains highlights from the past 3 months of ME events around the globe.

meglobalchronicle.wordpress.com/2025/09/24/f...

meglobalchronicle.wordpress.com/2025/09/24/t...

With contributions by @colleensteckel.bsky.social & many more.

#MEcfs

From the editors

Bezoek het bericht voor meer.

meglobalchronicle.wordpress.com

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