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allisondhaynes.bsky.social
AllisonHaynes
@allisondhaynes.bsky.social
33 followers 42 following 64 posts
Advocate for Myalgic Encephalomyelitis per ME-ICC and Ramsay/Dowsett/Hyde et al.

Severe M.E. since 1989.

Supporter of meadvocacy.org and The Nightingale Continuum (continuing to share the work of the Nightingale Research Foundation)
Posts Replies Media Videos
allisondhaynes.bsky.social
#MyalgicEncephalomyelitis #pwME #EncefalomielitisMialgica #EncéphalomyéliteMyalgique #MyalgicE
Not familiar with the longstanding, meticulous journalism of Hillary Johnson (Osler's Web)? Subscribe to her Substack and listen/read her superb short book The Why. Invaluable.
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
May 29, 2026 at 11:41 PM
allisondhaynes.bsky.social
#pwME #MyalgicEncephalomyelitis #EncéphalomyéliteMyalgique
#EncefalomielitisMyalgica
Every bit of M.E. news in this latest Substack is very importance to all of us. Research news, a disability change, a call to action. Please read & share widely.

News: 2026 May 27
open.substack.com/pub/colleens...
News: 2026 May 27
Call to action, Studying biology in motion, Very Severe added to SNOMED’s dx coding, US limits protection for assistance animals for disabled tenants, Forward ME news
open.substack.com
May 29, 2026 at 11:31 PM
allisondhaynes.bsky.social
#MyalgicEncephalomyelitis #Encéphalomyélitemyalgique #pwME #EncefalomielitisMialgica #MyalgicE
Latest from Colleen Steckel : excellent and relevant as always. Please read and share. Colleen is an absolute treasure to the M.E. community.

News: 2026 Feb 28
open.substack.com/pub/colleens...
News: 2026 Feb 28
Neuroimmune, Extension of Medicare telehealth, Bills in Congress to cancel WISeR, Fighting insurance denials, plus a personal note
open.substack.com
March 4, 2026 at 12:16 AM
allisondhaynes.bsky.social
#MyalgicEncephalomyelitis #Encéphalomyélitemyalgique #MyalgicE #EncefalomielitisMialgica #pwME
Excellent info. ICD codes can be used to benefit or harm us.
Those not in U.S. should read; many countries follow U.S. lead.
International Classification of Diseases Codes
open.substack.com/pub/colleens...
International Classification of Diseases Codes
ICD info for those with Myalgic Encephalomyelitis
open.substack.com
February 11, 2026 at 11:37 PM
allisondhaynes.bsky.social
#MyalgicEncephalomyelitis #MyalgicE #pwME #Encéphalomyélitemyalgique #EncefalomielitisMialgica
Please read Part Two of "The Science Bros and Violence Towards Women": an absolute must-read for men. women, and anyone in the M.E. community. Many thank to Hillary.
Read it at 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
February 3, 2026 at 5:53 PM
allisondhaynes.bsky.social
#MyalgicEncephaloMyelitis #pwME #MyalgicE #MECFS
#EncéphalomyéliteMyalgique #EncefalomielitisMialgica
Important short read from trusted longtime patient/advocate Colleen Steckel.
Be aware of long-term side-effects of some Rx's.

Fluoroquinolone antibiotics poisoning
open.substack.com/pub/colleens...
Fluoroquinolone antibiotics poisoning
New ICD code - T36.AX5
open.substack.com
January 31, 2026 at 3:55 PM
allisondhaynes.bsky.social
#MyalgicEncephalomyelitis #Encéphalomyélitemyalgique #EncefalomielitisMialgica #MyalgicE #pwME
Another absolute *must-read* by Hillary Johnson:
"The Science Bros and Violence Against Women", Part One of two, on the documented history of misogyny & M.E.. Please share link.
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
January 24, 2026 at 11:29 PM
allisondhaynes.bsky.social
#MyalgicEncephalomyelitis #EncefalomielitisMialgica #EncéphalomyéliteMyalgique
Please read the latest #MyalgicE news from around the world, including important info for U.S. residents, by @colleensteckel.bsky.social
Highly recommended. #pwME

News: 2026 Jan 14
open.substack.com/pub/colleens...
News: 2026 Jan 14
MEGC #55, Medicare Telehealth at risk (again), USPS policy change, SS Disability news, and LDN study
open.substack.com
January 16, 2026 at 9:23 PM
allisondhaynes.bsky.social
#pwME #MyalgicEncephalomyelitis #EncefalomielitisMialgica #EncéphalomyéliteMyalgique
Colleen discusses a new study. Low Blood Volume: critical M.E. symptom, studied for decades, but needs more attention. See also Hillary Johnson's Substack on this.

New Year - 2026
open.substack.com/pub/colleens...
New Year - 2026
Off to a good start!
open.substack.com
January 4, 2026 at 11:04 PM
allisondhaynes.bsky.social
#PwME Very wise words about #MyalgicEncephalomyelitis and the holiday season.
Take care and be cautious, all of you. Slow and steady.
Thank-you @colleensteckel.bsky.social.
#Encéphalomyélitemyalgique
#EncefalomielitisMialgica
#MyalgicE

Holiday Greetings 2025
open.substack.com/pub/colleens...
Holiday Greetings 2025
Nothing about any of this is easy
open.substack.com
December 29, 2025 at 9:37 PM
allisondhaynes.bsky.social
Dr. Behan really knew M.E. well : testing muscle tissue, not just blood, mentioning mitochondrial damage, and using the term "persistent virus".
Worth reposting!
#MyalgicEncephalomyelitis
#EncefalomielitisMialgica
#EncéphalomyéliteMyalgique
#pwME
valebodi.bsky.social valebodi.bsky.social @valebodi.bsky.social · Nov 3
“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…
December 7, 2025 at 12:25 AM
allisondhaynes.bsky.social
#MyalgicEncephalomyelitis #pwME
#Encéphalomyélitemyalgique
#EncefalomielitisMialgica
Latest Substack from our best M.E. journalist, Hillary Johnson. Memories of interviewing hostile bureaucrats who were supposed to be investigating outbreaks. Thank-you Hillary.
Read : www.hillaryjohnson.substack.com
www.hillaryjohnson.substack.com
December 4, 2025 at 6:26 PM
allisondhaynes.bsky.social
#pwME #MyalgicEncephalomyelitis #MyalgicE
Latest from Colleen Steckel : list of research, memorial for Dr. Byron Hyde, and more clarification about M.E. vs "ME/CFS". Thank-you, Colleen.
#Encéphalomyélitemyalgique
#EncefalomielitisMialgica

News: 2025 Dec 3
open.substack.com/pub/colleens...
News: 2025 Dec 3
Byron Hyde memorial, Ivabradine now generic, Oxaloacetate costs how much?, Research list, ME/CFS?
open.substack.com
December 4, 2025 at 6:00 PM
allisondhaynes.bsky.social
#MyalgicEncephalomyelitis #pwME #EncefalomielitisMialgica
Latest news for people in the U.S., regarding healthcare policies. An important and helpful read for anyone in the #MyalgicE or disability community. Thank-you Colleen Steckel.

News: 2025 Nov 15
open.substack.com/pub/colleens...
News: 2025 Nov 15
US Gov Health Care: Telehealth back (not for long), hemp products at risk, Medicaid to add 80 hour work requirement, plus resources to save $ on prescriptions
open.substack.com
November 18, 2025 at 11:54 PM
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 · Nov 3
“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