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aqem.bsky.social
AQEM - Association québécoise de l'encéphalomyélite myalgique
@aqem.bsky.social
720 followers 900 following 25 posts
L’AQEM vise l'avancement de la connaissance et la reconnaissance de l' #EMSFC et au mieux-être des #paEM | #Canada #Quebec | www.aqem.ca | IG/X @aqem_sfc

#EncephalomyeliteMyalgique #MyalgicEncephalomyelitis #MECFS #pwME #CovidLongue #CovidLong #LongCovid
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aqem.bsky.social
AQEM - Association québécoise de l'encéphalomyélite myalgique @aqem.bsky.social · Jan 27
📢 Nouvelle ressource : Guide de survie en cas de crash

👉 tinyurl.com/GuideCrash

Ce guide du @batemanhornecenter.bsky.social, traduit en français avec leur autorisation, est un outil fondamental pour la vie avec l' #EMSFC et la #CovidLongue.

✨ N’hésitez pas à le partager.
Illustration d'une personne non-genrée, assise par terre avec ses jambes croisées, travaillant avec un portable sur ses jambes. Derrière la personne est un très grand livre sur lequel il est écrit "Nouvelle ressource, Guide de survie en cas de crash". Sur le livre il y a le logo de l'AQEM et le logo du Bateman Horne Centre.
aqem.bsky.social
L’AQEM tient à exprimer sa solidarité avec le Dr Amir Khadir suivant la publication des articles d'Isabelle Hachey dans @lapresse.ca dans les derniers jours. De telles affirmations risquent de causer des torts à nos communautés de personnes atteintes de maladies chroniques complexes.
Capture d'écran de photos du Dr Amir Khadir et de la journaliste Isabelle Maréchal qui parlent devant des microphones dans les bureaux de Radio QUB.
May 28, 2025 at 7:40 AM
aqem.bsky.social
🗓️ Réservez cette date à votre agenda !

✨ Assemblée générale annuelle de l'AQEM

📍 Mercredi 11 juin à 14 H 00 via Zoom.

👉 Surveillez vos infolettres pour le lien de connexion et tous les documents à consulter.
Illustration d'un appel de vidéoconférence Zoom. Cinq personnes sont illustrées à l'écran d'un ordinateur, participant à un appel Zoom. Au milieu de l'illustration, il est écrit, " Assemblée générale annuelle, mercredi 11 juin à 14h00"
May 27, 2025 at 6:33 AM
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
apresj20.bsky.social
#JourneeMondialeEMSFC
#12mai
May 12, 2025 at 6:55 AM
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
openmedf.bsky.social
From the OMF-supported Medical Education Resource Center (MERC) at @batemanhornecenter.bsky.social :

The Clinical Care Guide is Here: Managing ME/CFS, Long COVID & Infection-Associated Chronic Conditions (IACCs). Download it. Share it. Use it. 👉 loom.ly/VeoxR7Y

#MECFS #LongCOVID
On the left side is a person in a white lab coat holds a dark blue stethoscope, on the right side is a blue background with text reading, "CLINICAL CARE GUIDE Managing ME/CFS, Long COVID, & IACCs.
May 9, 2025 at 8:20 PM
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
openmedf.bsky.social
Today, on International ME/CFS Awareness Day (May 12), we stand together to honor every person living with #MECFS —a disabling, life-altering disease that still lacks a diagnostic test, effective treatments, and a cure.

Help us fund urgent research: www.omf.ngo?form=donatenow 💙
This image is a visual for International ME/CFS Awareness Day. It features a large blue awareness ribbon on the left side, symbolizing support for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). On the right side, the text reads: INTERNATIONAL ME/CFS AWARENESS DAY
May 12, 2025 at 1:23 PM
aqem.bsky.social
🗓️ Aujourd'hui, 12 mai, marque la Journée internationale de sensibilisation à l' #EncéphalomyéliteMyalgique (EM).

👫 Aujourd'hui, nous amplifions la voix des millions de personnes dans le monde qui vivent avec cette maladie chronique invalidante associée aux infections.

1/
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
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
julialmv.bsky.social
I've been thinking about how to explain the challenge of living with ME/CFS and created this cartoon visualization.

Imagine the life of someone without ME is a rainbow of activities that each take a certain amount of energy.

ME limits your energy, and thereby the vibrancy of your life.
A stacked bar chart (oriented horizontally) labeled: Living with ME (myalgic encephalomyelitis / chronic fatigue syndrome) Each horizontal bar is a disease status: Pre-ME, Mild ME, Moderate ME, Severe ME, Very Severe ME. The width of each bar represents how much energy is available in each status (100, 50, 25, 12.5, and 6.25 respectively). Each bar is divided into sections for how one might allocate their energy: hygiene & nutrition (gray); caregiving, cleaning errands (red); work (orange); exercise (yellow); friends (green); hobbies (blue); fun (purple). With worsening ME, the hygiene & nutrition takes up a larger proportion of total available energy and the amount of energy available for all other parts of life shrinks. Mild ME has most things cut in half, with exercise cut smaller. Moderate ME removes exercise altogether, and everything else shrinks. Severe ME has only tiny slivers of red, orange, green, blue and purple. Very Severe ME has only a tiny sliver of green.
February 23, 2025 at 7:35 PM
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
sabrinapoirier.bsky.social
Hey everyone. I have updated my starter pack of community leaders, advocates, researchers, clinicians, patients and carers from our #LongCOVID and #MyalgicEncephalomyelitis community.

Please check it out and feel free to share.

go.bsky.app/6R7bqc7
January 11, 2025 at 3:48 AM
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
moriartylab.bsky.social
Prévisions de COVID pour le Canada : MAR 1-14, 2025

QUÉBEC

GRAVE (stable)

Environ 1 personne sur 43 est infectée

Par rapport au point le plus bas de la pandémie au Canada :

-Infections ~19X🔺
-COVID longue ~14X🔺
-Hospitalisations ~17X🔺
-Décès ~15X🔺
March 3, 2025 at 11:07 PM
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
batemanhornecenter.bsky.social
🩺 ME/CFS 101: What is PEM?
PEM (Post-Exertional Malaise) is the worsening of symptoms and decrease in function following exertion that was once tolerated.
Learn more: loom.ly/WHK9O6U
#MECFS #PEM #PostExertionalMalaise #InvisibleIllness
Cream background. On the left side is body copy that reads WHAT IS PEM? Underneath is copy, "Post-Exertional Malaise is the worsening of symptoms and decrease in function following exertion that was once tolerated." On the right side is a photo of a dark skinned woman baking cookies with a baking sheet in front of her. Then there is an equal sign and next to that is an image of woman looking down with her left arm is holding her right and in the corner is a battery that has a red bar at the bottom showing exhaustion.
February 13, 2025 at 4:26 PM
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
batemanhornecenter.bsky.social
Watch the recording of the @PlzSolveCFS - @BatemanHorne webinar “Severe #MECFS Research: Removing Barriers to Access” w/ Sabrina Poirier (@ICanCMEResearch) & Dr. David Putrino (@PutrinoLab & Icahn School of Medicine at @MountSinaiNYC) here: loom.ly/jaeALzU

Transcript: loom.ly/Hjby3eg
February 19, 2025 at 8:59 PM
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
batemanhornecenter.bsky.social
🌙 ME/CFS 101: What is Unrefreshing Sleep?
Sleep disturbances affect 90% of ME/CFS patients, with issues in sleep quality (light, restless, interrupted) & timing (delayed, irregular).
Dr. Bateman explains & offers tips: loom.ly/6Ss8msI
Stay tuned for more! 💬 #MECFS
Peach background. In black is copy that reads, "What is Unrefreshing Sleep?" Under that is white copy on a darker peach circular background that reads, "Dysregulated sleep: hard to fall asleep and/or stay asleep" Under that in blue copy over a green circular background it reads, "Wake up feeling tired or unwell" and the last "bullet point" is and white copy over the darker peach circular background, "Sleep that remains non-restorative". Next to the "bullet points" is a cartoon image of a person lying in bed. The view is from the ceiling looking down at them. There is a green pillow and blanket and the subject is in a blue pj top. There eyes are closed and their facial expressions shows frustration.
February 21, 2025 at 7:08 PM
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
batemanhornecenter.bsky.social
Cognitive impairment in ME/CFS can include: ➡️ Slower reaction times ➡️ Memory & focus issues ➡️ Difficulty processing info
Cognitive impairment can worsen with PEM & orthostatic stress.
Learn more 🎥: loom.ly/ouYbrjA
#MECFS #InvisibleIllness #MECFS101 @openmedf.bsky.social
Light peach background with black writing at the top that says, "What is Cognitive Impairment?" Lower and to the left is copy that says, "People with ME/CFS experience slowed information processing, trouble finding words, and low cognitive stamina. Often, this worsens when in PEM." Next to this copy is a cartoon image of a woman with her hands to the sides of her head. Her expression shows that she may be overwhelmed or frustrated because she doesn't understand.
February 24, 2025 at 6:18 PM
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
batemanhornecenter.bsky.social
🩺 ME/CFS 101: Many people with ME/CFS have orthostatic intolerance—worsened symptoms like dizziness, nausea, & brain fog from sitting/standing too long. It’s linked to heart rate, BP changes & reduced blood flow to the brain.
🎥 loom.ly/tl5nrbQ
#MECFS #InvisibleIllness @openmedf.bsky.social
Peach background. There is a cartoon image of a woman in the center of eight "thought bubble". She is resting her head in her hand. Underneath her is copy that says, "WHAT IS ORTHOSTATIC INTOLERANCE?" In each of the "thought bubbles" is a possibe symptom of OI. They are, "Brain fog, Heart palpitations, Lightheadedness, Nausea, Digestive problems, Vision changes, Difficulty regulating body temperature and Urinary promblems. In the corner of the slide is source info. "ME/CFS: Essentials of Diagnosis and Management, Mayo Clinic Proceedings"
February 27, 2025 at 4:32 PM
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
openmedf.bsky.social
Last week, SciShow, with over 8M subscribers, released a video on #MECFS. It covers ME/CFS symptoms, diagnosis, the impact of #PEM, and more.

Watch it here: www.youtube.com/watch?v=wxSw...
March 3, 2025 at 6:09 PM
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
meactnet.bsky.social
We love our caregivers! Today is #NationalCaregiversDay. We honor professional caregivers & family caregivers. We recognize the #pwME who are also caregivers. Caregiving touches all of our lives. We may need caregiving & we may be a caregiver & sometimes both happen at the same time!
A pink heart on a white background with text written over it: "We love our caregivers!" #MEaction logo in the corner.
February 21, 2025 at 9:42 PM
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
apresj20.bsky.social
Une étude preprint publiée dans Frontiers in Human Neuroscience révèle que les Thérapies Cognitivo-Comportementales (TCC) et les exercices gradués (GET) prouvent objectivement que l' #EMsfc et le #CovidLong sont des maladies physiques.
➡️ Pourtant, personne n’en parle.
#ApresJ20
January 17, 2025 at 3:36 PM
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
apresj20.bsky.social
❓ Pourquoi te masque-tu ? 😷

Nous reconnaissons que les gens portent des masques pour de nombreuses raisons importantes.

Partagez les vôtres dans les commentaires ci-dessous et contribuez à promouvoir la santé et la sécurité dans nos communautés.
✨POST ORIGINAL DE @TheWHN 🙏
February 5, 2025 at 3:39 PM
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
apresj20.bsky.social
🧵📢 Un rapport clé de @polybiorf.bsky.social , publié dans The Lancet Infectious Diseases, trace une feuille de route pour tester de nouvelles thérapies contre le #CovidLong 🙌

🔬💊 Voici les points essentiels.

#ApresJ20
February 11, 2025 at 5:51 PM
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
stillcovidingca.bsky.social
Vous voulez éviter d’acheter des respirateurs fabriqués aux États-Unis ? Nous avons des options. Consultez le site StillCOVIDing.ca pour obtenir des listes de respirateurs fabriqués au 🍁 Canada et dans 🇪🇺 l’Union européenne.

stillcoviding.ca/fr/ressource...

#CovidIsntOver #LaPandemieNEstPasFinie
Masques / respirateurs
stillcoviding.ca
February 3, 2025 at 5:42 PM
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
batemanhornecenter.bsky.social
🩺 ME/CFS 101: What is Impaired Function?
The level of impairment in ME/CFS can be severe and can range from mild to very severe. Up to 75% of people with ME/CFS cannot work, and about 25% are housebound or bedbound.
Learn more: loom.ly/As27sPU
#MECFS #InvisibleIllness
February 10, 2025 at 3:21 PM
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
batemanhornecenter.bsky.social
ME/CFS is a complex condition that can occur after an infection (like the flu, mono, COVID-19, etc.). For some, there’s no clear trigger, but regardless, the illness is completely life altering.
Learn more👉 loom.ly/9Dwp5IE
#MECFS #LongCOVID #InvisibleIllness
February 6, 2025 at 4:19 PM
Reposted by AQEM - Association québécoise de l'encéphalomyélite myalgique
batemanhornecenter.bsky.social
🌟 Struggling with unexplained symptoms after a recent infection or never fully recovered from COVID-19?

✅ Watch the 3rd video in our BASICS series with Clayton Powers, DPT, titled "The BASICS: Diagnosing ME/CFS", and gain insight into this often-misunderstood disease.

🔗 Watch here: bit.ly/4jb1ww8
The Basics: Diagnosing ME/CFS
Clayton Powers, DPT, discusses the basics of diagnosing myalgic encephalomyelitis (ME/CFS). - ME/CFS description - Symptoms that meet the diagnostic criteria This video is the third in our series called The Basics. Other videos cover post-exertional malaise (PEM) and orthostatic intolerance. Note to community members: We advise viewers to always speak with their medical care team prior to making any adjustments or changes to their current regimen. Bateman Horne Center’s involvement in this program is made possible with the additional support of Open Medicine Foundation and the Whittemore Peterson Institute and donors like you.
bit.ly
January 21, 2025 at 4:38 PM