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.

🗓️ 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.

#JourneeMondialeEMSFC #12mai

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

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 💙

🗓️ 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/

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.

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

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🔺

🩺 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

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

🌙 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

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

🩺 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

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...

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!

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

❓ 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 🙏

🧵📢 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

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

🩺 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

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

🌟 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

Une excellente ressource pour des personnes atteintes de l' #EMSFC, de la #CovidLongue et leurs proches. À lire et à partager! 👉 tinyurl.com/GuideCrash

Despite years of work and input from the IAG & new author group, Cochrane fails to address critical issues in its review of exercise therapy for ME/CFS. Worse, Cochrane has not followed its own stated processes & principles. Now the IAG has a message for Cochrane. www.meaction.net/2025/01/24/c...

Prévisions de COVID pour le Canada : FÉV 1-14, 2025 QUÉBEC TRÈS ÉLEVÉ (stable) Environ 1 personne sur 41 est infectée Par rapport au point le plus bas de la pandémie au Canada : -Infections ~14X🔺 -COVID longue ~11X🔺 -Hospitalisations ~12X🔺 -Décès ~13X🔺

Canadian COVID Forecast Feb 1-14, 2025 CANADA VERY HIGH (no change) About 1 in every 42 people infected Compared to lowest point of pandemic in Canada: -Infections ~13X higher -Long COVID ~12X higher -Hospitalizations ~12X higher -Deaths ~13X higher

ME/CFS cases are 15x higher post-COVID, highlighting the link between viral infections and chronic fatigue. A RECOVER study emphasizes early recognition and management as crucial for patients. Healthcare providers must prepare for this rise in cases. #LongCOVID #MECFS #ChronicIllness

🚨 New research links COVID-19 to a rise in ME/CFS cases. Post-infectious illnesses like ME/CFS can cause long-term fatigue, pain & more. Discover how this connection sheds light on the need for research, education & support. 💙 Read more: bit.ly/4h4rlMU #LongCOVID #MECFS #BHC

“For the millions of people suffering from long COVID worldwide, finding effective treatments is an urgent priority. And for the many more who have not developed long COVID, being able to prevent it would be immensely valuable.” Masks. Masks are a great preventative. www.forbes.com/sites/davewe...

📢 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.

Upcoming Webinar: Severe ME/CFS Research: Removing Barriers to Access Learn how patient advocates & researchers are breaking barriers to make research more accessible for severe ME/CFS patients. 📅 NEW DATE: Tuesday, Jan 21, 10:00 am PT, 11:00 am MT, 12:00 pm CT, 1:00 pm ET 🔗 Register: bit.ly/3Xa4IyW

Post-COVID #MECFS rates are 15x higher than pre-pandemic levels. New research highlights the urgent need for awareness and care. Explore the findings: loom.ly/wLycS1s

🔬Nouvelle étude soutenue par le @NIHRresearch : malaise post-effort #MPE, intolérance orthostatique et troubles cognitifs sont les symptômes les plus fréquents de #EMsfc signalés chez les participants post-Covid 👉30 à 50 % des patients #CovidLong répondent aux critères d'#EM

🧵#CovidLong et #EMsfc, une réalité alarmante qui émerge enfin sous les projecteurs. 🔗 www.republik.ch/2025/01/08/l...

Long Covid isn’t FND. Pass it on. www.mdpi.com/2075-4426/14...

Review article by Carmen Scheibenbogen and Klaus Wirth, #mitodicure, shows that #MECFS is an Acquired Mitochondrial Myopathy. Mitodicure is a startup which develops a breakthrough drug to correct the key pathomechanisms maintaining ME/CFS. #LongCovid #BMBF onlinelibrary.wiley.com/doi/10.1002/...

📣 Passez à l’action ! Veuillez faire part de vos commentaires sur les lignes directrices proposées pour les traitements de la COVID longue. ⏰ Date limite : le 22 janvier 2025 à 12 h HNE / 9 h HNP canpcc.ca/commentaire-... #COVID #CovidLong #CovidLongue #LaPandemieNEstPasFinie #Longhaulers #MECFS

Thank you for the chance to sit down and discuss the potential for PEM in rheumatological conditions for your feature in @medscape.bsky.social, @miriametucker.bsky.social. As you note, not all fatigue is PEM, even though it might initially screen positive on the DSQ. www.medscape.com/viewarticle/...

In case you’re wondering whether you have ME, or whether your long COVID has progressed to become ME, here is a fantastic short explanation from the Bateman Horne Center. #mecfs #longcovid #myalgicencephalomyelitis How to diagnose ME youtu.be/8LXIXx7woCo

1-page document: Low Dose Naltrexone (for doctors) (Bateman Horne Center) batemanhornecenter.org/wp-content/u... #LDN #MEcfs #CFS #PwME #LongCovid

Un excellent article qui explique pourquoi les dernières recommandations canadiennes pour la #CovidLongue sont néfastes. Agissez pour aider ⤵️ 👉 Lisez simonspichak.beehiiv.com/p/everything... 👉 Exprimez vos préoccupations en remplissant ce questionnaire avant le 27 nov canpcc.ca/commentaire-...

This is a brilliant article on why the latest Canadian Long COVID guideline recommendations are harmful. You can take action to help! 👉 Please read: simonspichak.beehiiv.com/p/everything... 👉 Then fill out this survey before Nov 27 at midnight to voice your concerns: canpcc.ca/public-comment/

Incredibly grateful to Simon for writing about these dangerous Long Covid guidelines. Make no mistake - these recommendations WILL harm patients. They will also make it harder for people to access disability supports. We must to push back & ensure patients get the care they need & deserve

Quoting to amplify. Thanks for your work on this and for taking the time to speak with me about it, @spichaksimon.bsky.social. Needless to say, these evidence-based guidelines…are neither evidence based nor soundly worded guidance. @longcovidphysio.bsky.social @workwellfoundation.bsky.social

Hey #Canadians, you may have seen me sharing this awesome piece on other platforms, but I want us to rally here too, to push back on the Canadian Post-COVID Condition Guidelines. They have draft recommendations on exercise and CBT. I will post a links below for anyone that wants to learn more.

My full comment on the indiscriminate exercise recommendation, failure to suggest pacing for PEM, promoting CBT, overvaluing symptom-based surveys that aren’t validated for purpose and reinforce disease stereotypes, and including pacing with CBT: 🤬🤬🤬 * deep inhale 🤬🤬🤬 Go ahead and quote me.

Here’s the thing with symptom-titrated exercise in #MECFS, friends: 1. You never get away from the energy robbing nature of this disease 2. Never 3. See #1 and #2 If all your patients miraculously seem to improve in response to your special exercise regimen, they’re probably talking to me instead.