AllisonHaynes
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allisondhaynes.bsky.social
AllisonHaynes
@allisondhaynes.bsky.social
27 followers 39 following 50 posts
Advocate for Myalgic Encephalomyelitis per ME-ICC and Ramsay/Dowsett/Hyde et al.

Severe M.E. since 1989.

Supporter of meadvocacy.org and nightingale.ca
Posts Replies Media Videos
Reposted by AllisonHaynes
colleensteckel.bsky.social
1990! We have had many ignored findings that explain what is happening to people with #MyalgicEncephalomyelitis.

The systemic bias has caused decades of harm that could have been prevented.
valebodi.bsky.social valebodi.bsky.social @valebodi.bsky.social · 11d
“Scientists identify virus causing fatigue in ME“
“We’ve found defective immunity, evidence of persistent viral infection, ABNORMAL MITOCHONDRIA and the hypothalamus not functioning!” P. Behan et al Glasgow 1990 (!!!) #MyalgicE #MECFS #PwME #Mitochondria #PostViralSequelae
Old newspaper article from the UK dated 1990 Scientists identify virus causing fatigue in ME SCIENTISTS say they have con- Fatigue Syndrome in Los Angeles firmed that ME, or "yuppie flu", By Wilma Patterson has physical causes, and know yesterday. He stressed that the Corsackie virus is not the only vi- why it causes extreme fatigue. A team from the department of neurology at the Southern General Hospital, Glasgow, using the DNA genetic finger printing tech-nique, identified fragments of the Coxsackie virus in the muscle tis-* sue of 30 per cent of sufferers. Previous studies have concentrated on identifying a viral agent in the blood. When the team looked at individual muscle cells. they found that the energy-producing apparatus of the cell - the mitochondria - were abnormal. This may explain the severe fatigue experienced by those with myalgic en-cephalomyelitis. Abnormal mitochondria in other parts of the body, including a part of the brain known as the hypothalamus, which controls sleep, appetite, sexual drive and emotion, would result in other symptoms characteristic of the illness, according to Peter Behan, professor of neurology at Glasgow University, who led the team. Tests on SO patients who took part in the initial study and analysis of more than 1,000 other case histories, suggested abnormal hypothalmic function and a defective immune system. Professor Behan presented his team's findings at the International Meeting on Chronic Viral rus likely to be involved. Future research will look for the herpes zoster virus, which causes chicken pox and shingles in muscle tissue. "We know that there is a persistent virus and with this technique we can take viruses out, and look at them," he said. *We've found defective immunity, evidence of persistent viral infec-tion, abnormal mitochondria and the hypothalamus not function-ing." Medical opinion about ME is • divided and many doctors dismiss the symptoms as psychologi-cal; others say they are part of a recognised co…
November 3, 2025 at 3:42 PM
Reposted by AllisonHaynes
colleensteckel.bsky.social
New View from the Trenches of Myalgic Encephalomyelitis Substack covers variety of topics.
#MyalgicEncephalomyelitis

October Slide
Corina Duyn
Life Hidden
Maureen Hanson
MEGC #54
Conferences

open.substack.com/pub/colleens...
News: 2025 November 2
October slide, Corina Duyn, Life Hidden, Maureen Hanson, MEGC #54, Conferences
open.substack.com
November 3, 2025 at 4:30 PM
allisondhaynes.bsky.social
#pwME #MyalgicEncephalomyelitis
Please look at FB group The Nightingale Continuum, now at 8.3K members, up from 1.4K just a couple of months ago.
Reliable #MyalgicE info. Acclaimed work of Dr. Byron Hyde & others. Fully documented, from 1950s/1980s to the present.

www.facebook.com/groups/10637...
Redirecting...
www.facebook.com
November 9, 2025 at 7:05 PM
allisondhaynes.bsky.social
#MyalgicEncephalomyelitis #pwME #longcovid
Hillary Johnson, best M.E. journalist, since 1980s.
Well worth small price of subscription.
This time: review of important recent book by another thorough investigative journalist. Of interest to M.E. and LongCovid patients.
www.hillaryjohnson.substack.com
www.hillaryjohnson.substack.com
November 9, 2025 at 7:01 PM
allisondhaynes.bsky.social
#pwME #MyalgicEncephalomyelitis #MyalgicE
Colleen Steckel: always recommended & trustworthy.
News: researcher Dr. Maureen Hanson receives another prestigious award, & much more. TY Colleen.
#EncefalomielitisMialgica
#EncéphalomyéliteMyalgique

News: 2025 November 2
open.substack.com/pub/colleens...
News: 2025 November 2
October slide, Corina Duyn, Life Hidden, Maureen Hanson, MEGC #54, Conferences
open.substack.com
November 9, 2025 at 6:55 PM
allisondhaynes.bsky.social
#MyalgicEncephalomyelitis #pwME Very informative article. We must be careful when seeing headlines/announcements claiming to have found a definitive test for M.E.
Colleen explains details of a recent study.

Headlines about Blood Biomarker for “ME/CFS” are premature
open.substack.com/pub/colleens...
Headlines about Blood Biomarker for “ME/CFS” are premature
Potential Blood Biomarker is more accurate
open.substack.com
October 21, 2025 at 10:25 PM
allisondhaynes.bsky.social
#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
October 8, 2025 at 11:18 PM
allisondhaynes.bsky.social
#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
October 2, 2025 at 4:17 PM
allisondhaynes.bsky.social
#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
September 25, 2025 at 11:29 PM
allisondhaynes.bsky.social
#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
September 15, 2025 at 10:55 PM
allisondhaynes.bsky.social
#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
September 5, 2025 at 3:26 PM
allisondhaynes.bsky.social
#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
August 25, 2025 at 5:29 PM
allisondhaynes.bsky.social
#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
August 14, 2025 at 11:03 PM
allisondhaynes.bsky.social
#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
August 8, 2025 at 6:50 PM
allisondhaynes.bsky.social
#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.
August 7, 2025 at 11:10 PM
allisondhaynes.bsky.social
#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.
August 6, 2025 at 10:20 PM
allisondhaynes.bsky.social
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
August 1, 2025 at 10:34 PM
allisondhaynes.bsky.social
#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.
July 30, 2025 at 11:29 PM
allisondhaynes.bsky.social
#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
July 29, 2025 at 11:45 PM
allisondhaynes.bsky.social
#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
July 24, 2025 at 4:23 PM
allisondhaynes.bsky.social
#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
July 15, 2025 at 9:43 PM
allisondhaynes.bsky.social
Happy #CanadaDay to all my friends, in Canada and around the world.❤️
July 1, 2025 at 3:13 PM
allisondhaynes.bsky.social
#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
July 1, 2025 at 3:11 PM
allisondhaynes.bsky.social
#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
July 1, 2025 at 3:03 PM
allisondhaynes.bsky.social
#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
June 3, 2025 at 12:01 AM