#encephalomyelitemyalgique
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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
#pwME Latest from Colleen Steckel. Summaries of a few research studies, perhaps giving us some reasonable hope for the future of M.E.
#MyalgicEncephalomyelitis
#EncefalomielitisMialgica
#EncéphalomyéliteMyalgique

Finding Hope for the future open.substack.com/pub/colleens...
Finding Hope for the future
Research that may lead to answers for myalgic encephalomyelitis
open.substack.com
April 2, 2025 at 10:24 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
millionsmissingfr.bsky.social
Une 𝗱𝗲́𝗰𝗼𝘂𝘃𝗲𝗿𝘁𝗲 𝗶𝗺𝗽𝗼𝗿𝘁𝗮𝗻𝘁𝗲 qui confirme que 𝗱𝗲𝘀 𝘀𝗼𝘂𝘀-𝗴𝗿𝗼𝘂𝗽𝗲𝘀 𝗱𝗲 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝗲𝘅𝗶𝘀𝘁𝗲𝗻𝘁. Cela explique pourquoi certaines personnes répondent à un traitement et d’autres pas. L’étape suivante sera d’ajuster les approches thérapeutiques aux profils spécifiques de patients. #EM #encephalomyelitemyalgique
September 29, 2025 at 8:39 AM
millionsmissingfr.bsky.social
Faites un don 👉 www.helloasso.com/associations...

#EncéphalomyéliteMyalgique #EM #MECFS #mecfs #EMSFC #SyndromesPostInfectieux #malaiseposteffort #MillionsMissing #MillionsMissingFrance #covidlong #maladiechronique #JedisEM #paEm #pwME #MyalgicE

4/4
Soutenez l'action de Millions Missing France !
Faire un don à Millions Missing France - Soutenez l'action de Millions Missing France !
www.helloasso.com
December 13, 2024 at 7:29 AM
nantigone.bsky.social
L'évasion c'est par la fenêtre.
Je vois même une tranche de ciel si je lève là tête...

Et toi tu vois quoi ?

#CovidLong
#EncephalomyeliteMyalgique
Vue (bouchée) de fenêtres sur cours. On voit 2 immeubles en angle. Et tout en haut : un petit bout de ciel. Photo en noir et blanc
May 31, 2025 at 4:40 PM
changefrance.bsky.social
Comme plus de 400 000 personnes en France, Iris vit avec l’encéphalomyélite myalgique, une maladie qui l’isole et la fait souffrir chaque jour. Elle demande un plan national de recherche et plus de soutien des malades et des aidants. ✍️ Signez sa pétition : change.org/EncéphalomyéliteMyalgique
May 22, 2025 at 9:26 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
apresj20.bsky.social
Le #CovidLong et l'#EncephalomyeliteMyalgique sont associés à des perturbations des rythmes circadiens.

🌓 L'infection par le #SARSCoV2 dérègle des mécanismes clés impliqués dans la régulation du sommeil et de l’énergie.
February 16, 2025 at 3:44 PM
millionsmissingfr.bsky.social
et envoyer des cartes faites main plutôt que des SMS...🎁

#EncéphalomyéliteMyalgique #EM #MECFS #EMSFC #SyndromesPostInfectieux #malaiseposteffort #MillionsMissing #MillionsMissingFrance #covidlong #handicap #maladiechronique #JedisEM
5/7
December 2, 2024 at 5:16 PM
millionsmissingfr.bsky.social
#EncéphalomyéliteMyalgique #EM #MECFS #EMSFC #pwME #SyndromesPostInfectieux #malaiseposteffort #MillionsMissing #MillionsMissingFrance #covidlong #handicap #maladiechronique #santé #médecine
Crédit photo 📸 : MECFS Foundation

Plus d'informations en anglais mecfs-research.org/en/
5/5
ME/CFS Research Foundation
mecfs-research.org
December 9, 2024 at 10:22 AM
apresj20.bsky.social
❗Le #CovidLong et l' #EncephalomyéliteMyalgique entraînent :

👉 Réduction de la capacité d’exercice
👉Anomalies des muscles squelettiques
👉Malaise post-effort #MPE

Mais est-ce uniquement dû à l’inactivité physique ?

❌Cette étude dit : NON
May 7, 2025 at 9:11 AM
allisondhaynes.bsky.social
#pwME Hillary Johnson's Substack is always an important read. This time: the issue of Low Blood Volume in #MyalgicE. Highly recommended as always.
#MyalgicEncephalomyelitis
#EncefalomielitisMialgica
#EncéphalomyéliteMyalgique

A Momentary Pause in the Act Of Dying open.substack.com/pub/hillaryj...
A Momentary Pause in the Act Of Dying
Low blood volume in Myalgic Encephalomyelitis. It's shocking. An interview with David Bell, M.D.
open.substack.com
March 14, 2025 at 3:39 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
millionsmissingfr.bsky.social
#EncéphalomyéliteMyalgique #EM #MECFS #EMSFC #SyndromesPostInfectieux #malaiseposteffort #MillionsMissing #MillionsMissingFrance #covidlong #handicap #maladiechronique #JedisEM #associationfrancaise #maladieinvisible #handicapinvisible

4/4
December 20, 2024 at 9:21 AM
edithcl.bsky.social
4 ans que j’ai été infectée par la covid

—

Photo : reflet sur le mur de la chambre où je passe beaucoup trop de ma vie désolmais

#covidlongue #encephalomyelitemyalgique #POTS #potssyndrome #longcovidlife #LongCovid #longcovidawareness #mecfs #mecfsawareness
January 9, 2026 at 8:54 PM
millionsmissingfr.bsky.social
La réalité de beaucoup de malades chroniques :

#EncéphalomyéliteMyalgique #covidlong #Reveillon #BonneAmbiance

7/10
IMAGE : Fond bleu, boule à facette et 3 personnages qui dansent. Logo Millions Missing France TEXTE : « On sort danser le 31 » ? propose gentiment Géraldine. Impossible : 75% des malades d'EM sont confinés au lit ou à la maison. #EncéphalomyéliteMyalgique.
December 24, 2023 at 2:06 PM
millionsmissingfr.bsky.social
Our thoughts go out to those very severely affected by #MECFS, who can barely communicate.

Nos pensées vont à celleux qui sont très sévèrement touchés par l'#EM et qui peuvent à peine communiquer.

#millionsmissing #encéphalomyélitemyalgique #severeME

10/10
Un personnage dessiné envoie un câlin "sending virtual hug loading... hug sent !"
December 24, 2023 at 2:13 PM
millionsmissingfr.bsky.social
#montreal #parcsaintecunegonde #EncéphalomyéliteMyalgique #EM #MECFS #EMSFC #SyndromesPostInfectieux #malaiseposteffort #MillionsMissing #MillionsMissingFrance #covidlong #handicap #maladiechronique #JedisEM

4/4
des 600 000 cas au Canada des 67 millions à travers le monde 75% sont des femmes
November 17, 2024 at 8:00 AM
millionsmissingfr.bsky.social
#JedisEM #EncéphalomyéliteMyalgique #MECFS #EM #pwME #paEM #SyndromesPostInfectieux #malaiseposteffort #MillionsMissing #MillionsMissingFrance #apres20 #maladiechronique #santé #médecine #handicap #recherche
#longcovidkids #UniteToFight2024 #complexchronicillness #LongCovid
8/8
January 14, 2025 at 10:38 AM
millionsmissingfr.bsky.social
🖤Son décès est une perte pour toute la communauté des malades souffrant d’EM/SFC.

🖤Nous exprimons toutes nos condoléances à ses proches, aux militants et aux malades qui l’ont connu.

Article sur MEPedia me-pedia.org/wiki/Byron_H...

#EncéphalomyéliteMyalgique #EM #MECFS #EMSFC #pwME

4/5
Byron Hyde
me-pedia.org
November 30, 2024 at 12:58 PM
aqem.bsky.social
#JourneeSensibilisationEMSFC #MEAwareness #MEAwarenessDay #MEAwarenessMonth #MECFSAwareness #MECFSAwarenessDay #MECFSAwarenessMonth #MEAwarenessDay2025 #MECFSAwarenessDay2025
#EncephalomyeliteMyalgique #EMSFC #PAEM #MyalgicEncephalomyelitis #MECFS #pwME

4/
Au milieu de l'illustration, il est écrit "12 mai. Journée internationale de sensibilisation à l'EM." Un ruban bleu clair est affiché sur un fond sarcelle avec le logo de l'Association québécoise de l'encéphalomyélite myalgique (AQEM) dans le coin inférieur gauche.
May 12, 2025 at 6:58 AM
apresj20.bsky.social
🚨 Le #CovidLong et l’#EncéphalomyéliteMyalgique coûtent à l’Allemagne 60 milliards d’euros par an 🇩🇪.

Un rapport exclusif qui sera présenté le 13 mai à Berlin alerte sur une crise sanitaire et économique largement ignorée.

🔗 www.spiegel.de/gesundheit/l...

#EM #ApresJ20🧵👇
May 11, 2025 at 3:07 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
millionsmissingfr.bsky.social

www.helloasso.com/associations...

Crédit photo 📸 : Canva et Millions Missing France

#EncéphalomyéliteMyalgique #EM #MECFS #EMSFC #SyndromesPostInfectieux #malaiseposteffort #MillionsMissing #MillionsMissingFrance #covidlong #handicap #maladiechronique #JedisEM

3/3
Soutenez l'action de Millions Missing France !
Faire un don à Millions Missing France - Soutenez l'action de Millions Missing France !
www.helloasso.com
November 22, 2024 at 7:28 AM