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AllisonHaynes @allisondhaynes.bsky.social · 7h

#pwME #MyalgicEncephalomyelitis Great article. In supporting #MEICC, we must show it is superior to the CCC at identifying patients for research cohorts. More essential reading from longtime patient/advocate Colleen Steckel.

Canadian Consensus Criteria (ME/CFS-CCC)
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

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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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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AllisonHaynes @allisondhaynes.bsky.social · 23d

#pwME #MyalgicEncephalomyelitis #MyalgicE
#EncefalomielitisMialgica #EncéphalomtéliteMyalgique
Excellent piece.
Please read, and do survey if possible. Rating symptom severity scales. Please read Colleen's article before doing survey. Thank-you.

ME Research Survey
open.substack.com/pub/colleens...

ME Research Survey

Which scale is best?

open.substack.com

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AllisonHaynes @allisondhaynes.bsky.social · Sep 5

And Colleen recommends Hillary Johnson's Substack, which I also strongly endorse. See Johnson's illustrious career, credentials, & experience at oslersweb.com. Best chronicler of M.E. history, politics, science, etc. since the 80s. Please support her essential writing.
hillaryjohnson.substack.com

The World of Osler's Web | Hillary Johnson | Substack

A newsletter about science, politics and pandemics. Click to read The World of Osler's Web, by Hillary Johnson, a Substack publication with hundreds of subscribers.

hillaryjohnson.substack.com

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AllisonHaynes @allisondhaynes.bsky.social · Sep 5

#MyalgicEncephalomyelitis #pwME
#Encefalomielitismialgica
#EncéphalomyéliteMialgique Latest news of particular interest to U.S. residents. Mostly bad for M.E. b/c current gov't but 1 good thing: a harmful person retires.
Subscription is free.

News: 2025 September 4
open.substack.com/pub/colleens...

News: 2025 September 4

Medicare telehealth, Medicaid work requirements, Medicare preauthorization, Elizabeth Unger retires

open.substack.com

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AllisonHaynes @allisondhaynes.bsky.social · Aug 25

#pwME #MyalgicEncephalomyelitis #MyalgicE #MEICC
Latest Substack: excellent listing of M.E. research studies that use the ME-ICC (International Consensus Criteria for M.E.).
Organized by date and topic of (neurology, cardiovascular, immune. etc.).

ME-ICC Research
open.substack.com/pub/colleens...

ME-ICC Research

Yes, researchers use the ME-ICC to select patients

open.substack.com

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AllisonHaynes @allisondhaynes.bsky.social · Aug 14

#MyalgicEncephalomyelitis #pwME
Big news in Hillary Johnson's latest Substack. Always professional, trustworthy, worth every penny of the small subscription price.
Part 3 of 4 on Low Blood Volume in ME (& other illnesses).
Read "FDA clears a new blood volume test" at www.hillaryjohnson.substack.com

www.hillaryjohnson.substack.com

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AllisonHaynes @allisondhaynes.bsky.social · Aug 8

#SevereMEAwareness #pwME #SevereME
Please read & share today's Substack by longtime trustworthy patient/advocate Colleen Steckel. Good news this time: some research studies cohorts with *Severe M.E.* patients. This is progress.

Aug 8, 2025 - Severe ME Awareness Day
open.substack.com/pub/colleens...

Aug 8, 2025 - Severe ME Awareness Day

Myalgic Encephalomyelitis Research

open.substack.com

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AllisonHaynes @allisondhaynes.bsky.social · Aug 7

#SevereMEAwareness #MyalgicEncephalomyelitis #pwME
August 8 is International Awareness Day for Severe and Very Severe #MyalgicE. Let us not forget those who have died from M.E. and those who are housebound and/or bedbound, hidden from public view, suffering without proper diagnosis or healthcare.

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AllisonHaynes @allisondhaynes.bsky.social · Aug 6

#SevereME #SevereMEAwareness #MyalgicE #pwME
The major government health websites (NHS in the UK, NIH/CDC in the U.S.) still use overly-generalized "definitions" + trivializing language when describing M.E. (fatigue, malaise, brain fog, "effort preference").
Unacceptable for this disabling disease.

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AllisonHaynes @allisondhaynes.bsky.social · Aug 1

Important #MyalgicEncephalomyelitis news and issues (Low Blood Volume, IV Fluids, and more), as always from reliable longtime patient and advocate Colleen Steckel. TY Colleen. #pwME
#Encéphalomyélitemyalgique
#EncefalomielitisMialgica
#MyalgicE

News: 2025 July 31
open.substack.com/pub/colleens...

News: 2025 July 31

IV Fluids plus News from Australia and UK

open.substack.com

AllisonHaynes @allisondhaynes.bsky.social · Jul 30

#pwME #MyalgicEncephalomyelitis Dr.ByronHyde's internationally respected Nightingale Research Foundation has now been dissolved, but volunteers are recreating a website to share & spread his life's work, as he wished. For now, they've re-named the FB page The Nightingale Continuum.
Look & share. TY.

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AllisonHaynes @allisondhaynes.bsky.social · Jul 29

#pwME Always most reliable, thoroughly-researched #MyalgicEncephalomyelitis info from Hillary Johnson @0slersweb.bsky.social. Her Substack is well worth a subscription. Latest article is Part One of four on the essential topic of blood volume.
Read "Volume Is Vital":
www.hillaryjohnson.substack.com

www.hillaryjohnson.substack.com

AllisonHaynes @allisondhaynes.bsky.social · Jul 24

#pwME With #MyalgcE it's often hard to know which orgs & groups are trusted, knowledgeable, & specific to M.E.
Colleen Steckel's Substack is always excellent. Please read this one!
#EncefalomielitisMialgica
#EncéphalomyéliteMyalgique

ME-ICC Info Table of Contents
open.substack.com/pub/colleens...

ME-ICC Info Table of Contents

Resources for Myalgic Encephalomyelitis

open.substack.com

AllisonHaynes @allisondhaynes.bsky.social · Jul 15

#pwME #MyalgicE Nothing is more important than a correct diagnosis. Our history is complicated - longtime patient/advocate Colleen Steckel summarizes & clarifies the convoluted mess of names & "definitions" that have been thrust upon us over the decades.

“ME/CFS”? open.substack.com/pub/colleens...

“ME/CFS”?

Lighting the path forward

open.substack.com

AllisonHaynes @allisondhaynes.bsky.social · Jul 1

Happy #CanadaDay to all my friends, in Canada and around the world.❤️

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AllisonHaynes @allisondhaynes.bsky.social · Jul 1

#MyalgicE #pwME Highly recommended Substack. Always sorting through the news for us, to find what is most important. This one highlights the best M.E. research, researchers, orgs, & continues following health policy changes for U.S. residents.

News: 2025 June 26 open.substack.com/pub/colleens...

News: 2025 June 26

US Govt Health Agencies, Research News, MEGC #53

open.substack.com

AllisonHaynes @allisondhaynes.bsky.social · Jul 1

#pwME #MyalgicE Be sure to check out the latest M.E. Global Chronicle: a quarterly gathering of M.E news from around the world. Highly recommended. Table of Contents here:
meglobalchronicle.wordpress.com/2025/06/26/t...

#MyalgicEncephalomyelitis
#EncefalomielitisMialgica
#EncéphalomyéliteMyalgique

Table of contents ME Global Chronicle 53 – June 2025

~ Editorial~ Severe ME~ ME & children~ Grassroot~ Petitions~ News~ Events~ Research/science~ Biopsychosocial~ Poem

meglobalchronicle.wordpress.com

AllisonHaynes @allisondhaynes.bsky.social · Jun 3

#MEawareness #pwME Work is ongoing to preserve the writings of #MyalgicE expert Dr. Byron Hyde, Canadian & internationally respected Doctor, diagnostician & researcher who edited & published the 1st M.E. textbook in 1992. Stay tuned.

Nightingale Research Foundation open.substack.com/pub/colleens...

Nightingale Research Foundation

Website not working - alternate links available

open.substack.com

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AllisonHaynes @allisondhaynes.bsky.social · Jun 2

#MyalgicEncephalomyelitis #pwME #MyalgicE
Essential reading. Knowledge of M.E. history will save time and energy which are both so reduced and so precious to us. Thank-you, Colleen Steckel, Hillary Johnson, Margaret Williams.

History of Myalgic Encephalomyelitis open.substack.com/pub/colleens...

History of Myalgic Encephalomyelitis

Wessely and 1990s research - the more you know!

open.substack.com

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AllisonHaynes @allisondhaynes.bsky.social · May 20

#MyalgicEncephalomyelitis #MEawarenessmonth #pwME
A must-read, part 2 of @0slersweb.bsky.social Substack: early M.E. research papers that should have changed our history but were ignored/suppressed by people whose job is literally Disease Control & Prevention. TY Hillary.
hillaryjohnson.substack.com

The World of Osler's Web | Hillary Johnson | Substack

A newsletter about science, politics and pandemics. Click to read The World of Osler's Web, by Hillary Johnson, a Substack publication with hundreds of subscribers.

hillaryjohnson.substack.com

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AllisonHaynes @allisondhaynes.bsky.social · May 19

#MEawarenessmonth Another must-read from Hillary Johnson, superb writer & fearless, dedicated investigator. Epidemiology, Blood Morphology + more. Part Two coming soon.
"Five early and important investigations of #MyalgicEncephalomyelitis that went unheeded: Part One"

hillaryjohnson.substack.com

The World of Osler's Web | Hillary Johnson | Substack

A newsletter about science, politics and pandemics. Click to read The World of Osler's Web, by Hillary Johnson, a Substack publication with hundreds of subscribers.

hillaryjohnson.substack.com

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AllisonHaynes @allisondhaynes.bsky.social · May 15

#MEawarenessmonth #MyalgicEncephalomyelitis #pwME
Essential reading as always from longtime #MyalgicE patient/advocate @colleensteckel.bsky.social News from PolyBio and more. Thank-you Colleen.
#EncefalomielitisMialgica
#EncéphalomyéliteMyalgique

News: 2025 May 14
open.substack.com/pub/colleens...

News: 2025 May 14

A Life Hidden, Researchers meet, Iron deficiency

open.substack.com

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Reposted by AllisonHaynes

Colleen Steckel @colleensteckel.bsky.social · May 4

Latest article from View from the Trenches of #MyalgicEncephalomyelitis highlights the challenges of May 12 awareness day.

Sharing accurate information is important.

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

Making the Invisible Visible

Myalgic Encephalomyelitis awareness - May 2025

open.substack.com

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