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Colleen Steckel

@colleensteckel.bsky.social

2.4K 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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Colleen Steckel @colleensteckel.bsky.social · 10h

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 · 10h

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 · 4d

“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Drafts of unpublished rules obtained by ProPublica detail plans that would open the door to full-time work requirements, two-year limits on living in federally supported housing and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 · 6d

#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 · 7d

I contacted the lead author to confirm patient selection.

Colleen Steckel @colleensteckel.bsky.social · 7d

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 · 7d

I hope their information includes the ME IC Primer.

Reposted by Colleen Steckel

PBS News @pbsnews.org · 9d

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 · 10d

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 · 10d

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

Colleen Steckel @colleensteckel.bsky.social · 11d

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 · 11d

Thank you for the synopsis.

Colleen Steckel @colleensteckel.bsky.social · 12d

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

Reposted by Colleen Steckel

AllisonHaynes @allisondhaynes.bsky.social · 13d

#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 · 14d

🌍 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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Reposted by Colleen Steckel

Amarok Subalpine @amaroksubalpine.bsky.social · 16d

Old school name for Antifa is

The Greatest Generation.

Thank you for your attention to this matter.

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Colleen Steckel @colleensteckel.bsky.social · 16d

Some really good shows on there!

Colleen Steckel @colleensteckel.bsky.social · 17d

Lol

Colleen Steckel @colleensteckel.bsky.social · 17d

There's one of those "tired" photos that helped bury the reality of ME.

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Reposted by Colleen Steckel

Derek Johnson @derekjesq.bsky.social · 18d

“Fascism” isn’t a slur for politics we don’t like. It’s a precise word with precise meaning. And in the face of what’s happening right now in America, it’s the most honest one we have.

I’ll lay it out as plainly as I can. 🧵

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Colleen Steckel @colleensteckel.bsky.social · 18d

Guessing you saw their petition?

Reposted by Colleen Steckel

Royal Free 1955 @rfh1955.bsky.social · 18d

Today, thirty-five years ago. The Evening Express, Portland, US. 20th September 1990. #mecfs #cfsme #myalgicencephalomyelitis #myalgice

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Reposted by Colleen Steckel

ME Centraal @mecentraal.bsky.social · 22d

International ME community:
ME patient Sanne (38) is denied life-saving treatment.

Sanne has no time left. Only TPN could save her life, but it is being denied.

Read our website to find out what you can do 👇
& Please read 🧵

mecentraal-wordpress-com.translate.goog/2025/09/16/m...

ME-patiënte Sanne (38) wordt levensreddende behandeling geweigerd

⚖️ Advocaten komen deze week in actie. Jouw hulp is ook nodig!De 38-jarige Sanne van Enckevort uit Hegelsom (Limburg) is ernstig ziek. Ze heeft ME en een daardoor veroorzaakte gastroparese, en daar…

mecentraal-wordpress-com.translate.goog

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Colleen Steckel @colleensteckel.bsky.social · 22d

There is a new survey asking about what severity scales are most useful for research into #MyalgicEncephalomyelitis - see article for info.

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

ME Research Survey

Which scale is best?

open.substack.com

Colleen Steckel @colleensteckel.bsky.social · 23d

Sadly too many are given an ME/CFS diagnosis who often have a missed diagnosis. I wrote about that here: open.substack.com/pub/colleens...

Missed Diagnosis

Confirming a diagnosis of myalgic encephalomyelitis

open.substack.com