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Edith CL

@edithcl.bsky.social
177 followers 567 following 47 posts

#longcovid #MEcfsally #mèresaufront #féministe #citoyenneengagée, idéatrice congrès #ecologiedelenfance

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Reposted by Edith CL
George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Galen Warden @galen2.bsky.social · 10/05/2026
I am heartbroken to report that my sweet son James Strazza left us on May 4, 2026. His third book, Lowcountry: For the Eyes of the World, will be published in time for Severe ME week in August. I will post excerpts from it until then.
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 20/08/2026
You asked OMF to prioritize post-exertional symptom worsening in CTN Lite trials. We heard you. Your responses will go directly into trial design. This is not background research. (1/2) #pwME #MECFS #MECFSResearch
Cover page of a CTN Lite Survey on post-exertional symptom worsening in ME/CFS patients, focusing on crashes and PEM.
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David Tuller @davetuller1.bsky.social · 06/05/2026
This has been a challenging crowdfunding for Berkeley's Trial by Error project on ME, ME/CFS, Long COVID, etc, but it seems like things are catching up in the final days. Now at 80% of the goal! Thanks to all!!! crowdfund.berkeley.edu/project/49720
crowdfund.berkeley.edu
Trial By Error: Reporting on ME and ME/CFS, Long COVID, etc
Help UC Berkeley raise $75,000 for the project: Trial By Error: Reporting on ME and ME/CFS, Long COVID, etc. Your gift will make a difference!
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Billy Hanlon @bhanlon15.bsky.social · 22/04/2026
University of Montreal: A glimmer of hope for people living with chronic fatigue syndrome “ME remains difficult to define, but recent advances are gradually changing the landscape,” Moreau said. “With the rise of long COVID..is now a scientific priority..' nouvelles.umontreal.ca/en/article/2...
nouvelles.umontreal.ca
A glimmer of hope for people living with chronic fatigue syndrome
UdeM’s Alain Moreau is working to shed light on the mystery of myalgic encephalomyelitis, a debilitating disease that is receiving renewed attention in the wake of COVID-19.
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Billy Hanlon @bhanlon15.bsky.social · 22/04/2026
New Scientist: 'Exercise advice for long covid may be doing more harm than good' 'Exercise has been touted as a tool for managing and treating long covid, but much of the evidence has neglected one of its most debilitating symptoms: post-exertional malaise' www.newscientist.com/article/2523...
newscientist.com
Exercise advice for long covid may be doing more harm than good
Exercise has been touted as a tool for managing and treating long covid, but much of the evidence has neglected one of its most debilitating symptoms: post-exertional malaise
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Edith CL @edithcl.bsky.social · 22/04/2026
I just told Parliament to say NO to C-218 and YES to Advance Requests. Sign the petition: www.dyingwithdignity.ca/advocacy/tel...
dyingwithdignity.ca
We deserve to plan for a peaceful death | Dying With Dignity Canada
Today, I sent a letter to my MP in support of legislation to amend Canada’s assisted dying law and make advance requests for MAID legal.
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Reposted by Edith CL
Nancy Delagrave @nancydelagrave.bsky.social · 10/03/2026
Mon ami Amir Khadir écrit désormais sur Substack. Je vous invite à vous abonner. Amir a toujours de la famille en Iran et il est, comme toujours, bien informé. Amir est un aussi physicien, comme moi, alors on s'entend bien. Il y écrit en français, en anglais et en persan. amirkhadir.substack.com
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Long Covid SOS @longcovidsos.bsky.social · 14/02/2026
This Valentine’s Day, let’s talk about the hearts Long Covid affects. Not just romantic hearts. Human hearts. Cardiovascular health. Family life. Mental wellbeing. And so much more. Long Covid can break your heart - in more ways than you realise #longcovidsos #valentinesday #longcovidawareness
An illustration of a pink anatomical human heart centred on a torn paper background with vintage newspaper print. Overlaid text reads: “Long Covid breaks your heart in more ways than you realise.” The Long Covid SOS logo appears at the bottom.
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Bruce Springsteen @brucespringsteen.net · 28/01/2026
I wrote this song on Saturday, recorded it yesterday and released it to you today in response to the state terror being visited on the city of Minneapolis. It’s dedicated to the people of Minneapolis, our innocent immigrant neighbors and in memory of Alex Pretti and Renee Good. Stay free
youtu.be
Bruce Springsteen - Streets Of Minneapolis (Official Audio)
YouTube video by Bruce Springsteen
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Millions Missing France @millionsmissingfr.bsky.social · 12/12/2025
🥀 Nous avons la tristesse de vous faire part du décès de Isabel Wirth, survenu en Suisse le 10/12/2025 à l’âge de 41 ans, ainsi que celui de Megan Pendleton, survenu en Virginie (pas d’informations sur l’âge ni la date exacte).
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Edith CL @edithcl.bsky.social · 09/01/2026
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
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Nancy Delagrave @nancydelagrave.bsky.social · 03/12/2025
1. L'entrevue du Dr Amir Khadir avec lequel je collaborre depuis avril 2020 et dont je respecte énormément la générosité, l'intégrité, les connaissances et la curiosité intellectuelle. @cmq.org Ép. 03/12 | Amir Khadir radié six mois par le Collège des médecins www.qub.ca/balado/isabe...
qub.ca
Ép. 03/12 | Amir Khadir radié six mois par le Collège des médecins | Isabelle Maréchal | QUB | QUB radio
Retrouvez Ép. 03/12 | Amir Khadir radié six mois par le Collège des médecins | Isabelle Maréchal | QUB, un média québécois offrant des contenus d'affaires...
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Marie-Michelle Bellon @docteure19.bsky.social · 02/11/2025
Voici une pétition en soutien au Dr Amir Khadir. Cette phrase du texte m’a particulièrement interpellée: « Une démarche guidée par l’éthique, non par l’insubordination - Les actions du Dr Khadir ne relevent pas d’un refus d’autorité, mais d’un devoir moral de soigner. » c.org/fHHBgNfvhH
c.org
Cette campagne a besoin de vous
Appel collectif - soutien au Dr Amir Khadir
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Steven Guilbeault @stevenguilbeault.bsky.social · 27/11/2025
J’ai informé le premier ministre de ma décision de démissionner comme ministre de l’Identité et de la Culture canadiennes, ministre responsable des Langues officielles, ministre de la Nature et de Parcs Canada, ainsi que comme son lieutenant au Québec. Ma déclaration complète:
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Simon Spichak @spichaksimon.bsky.social · 05/11/2025
And coverage for Day 1 of the #ICanCMEConference by the @icancmeresearch.bsky.social. Features a link to my live tweets. simonspichak.beehiiv.com/p/icancme-da...
simonspichak.beehiiv.com
Day 1 of the ICanCME Canadian Collaborative Conference on Myalgic Encephalomyelitis
A brief summary of the presentations.
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🇨🇦Joe Vipond🇨🇦 @jvipondmd.bsky.social · 21/10/2025
Proud to have co-authored this piece with amazing collaborators at the @thewhn.bsky.social. Let me know what you think. whn.global/whn-joins-in...
whn.global
WHN joins in the chorus: Medical masks are not PPE - WHN
Overview Throughout the COVID pandemic, there has been confusion from public health and medical leaders over which masks to wear to prevent transmission of the SARS-CoV-2 virus. Inadequate supplies of...
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Bateman Horne Center @batemanhornecenter.bsky.social · 19/09/2025
For decades, people with ME/CFS faced stigma and little research funding. Now, NIH has spotlighted ME/CFS in its feature on mitochondria—a step toward recognition. Learn about the mitochondria connection & why this matters for #MECFS, #LongCOVID, & related conditions: bit.ly/4mjda8g
Illustration of a mitochondrion glowing in orange against a dark background with silhouettes of a man and woman, titled "Mitochondria in the Spotlight".
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Bateman Horne Center @batemanhornecenter.bsky.social · 22/09/2025
☕ Introducing Coffee with a Clinician, launching Oct 2025! Free monthly Zoom (30–45 mins) led by expert knowledge. Learn from the Clinical Care Guide or join Q&A. An optional $5 “coffee” donation helps us connect with more clinicians worldwide: bit.ly/4grlbXr #MECFS #LongCOVID #Fibro
Invitation to "Coffee with a Clinician" on Wednesday, October 8 at 10:00 am MDT. Visit batemanhornecenter.org/events to register
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 12/09/2025
A new review from Melbourne ME/CFS Collaboration, in collaboration with Collaborative Center at Montreal, highlights the potential of metformin, an antidiabetic agent, as a treatment for #MECFS and #LongCOVID. 👉 Read the full publication: ow.ly/uXQJ50WVZax
Cover of a review article titled “A Perspective on the Role of Metformin in Treating ME/CFS and Long COVID,” with author names, the OMF logo, and a 3D illustration of a mitochondrion.
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Edith CL @edithcl.bsky.social · 16/09/2025
Première preuve solide d’une contribution génétique au MPE dans l’EM. #encephalomyelitemyalgique #myalgicencephalomyelitis #MEcfs #EMsfc #PEM #MPE
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#ApresJ20 - Association Covid Long France @apresj20.bsky.social · 10/09/2025
📝 En résumé 🔹Environ 1/3 des personnes infectées développe un #CovidLong. 🔹La prévalence reste élevée même après 2 ans 🔹Facteurs aggravants : non-vaccination, comorbidités, sexe féminin
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#ApresJ20 - Association Covid Long France @apresj20.bsky.social · 10/09/2025
⚠️Facteurs de risque majeurs 👉OR (odds ratio) = rapport de cotes👉 traduit en augmentation du risque : 🔸Non-vaccination : OR 2,34👉+134% de risque 🔸Comorbidité : OR 1,59👉+59% de risque 🔸Sexe féminin : OR 1,55👉+55% de risque
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#ApresJ20 - Association Covid Long France @apresj20.bsky.social · 10/09/2025
🧩Sous-types les plus fréquents 🔸Respiration : 20% 🔸Fatigue : 20% 🔸Psychiatrique : 18% 🔸Neurologique :16% ➡️Le #CovidLong touche plusieurs systèmes
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#ApresJ20 - Association Covid Long France @apresj20.bsky.social · 10/09/2025
⏳ Évolution dans le temps 🔹 Moins d’1 an : 35% 🔹1 à 2 ans : 47% 👉Pas de baisse notable. Le #CovidLong reste fréquent à long terme
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#ApresJ20 - Association Covid Long France @apresj20.bsky.social · 10/09/2025
🌎Variations géographiques 🔸Amérique du Sud : 51% 🔸Europe : 39% 🔸Asie : 35% 🔸Amérique du Nord : 30% ➡️Des écarts importants selon les régions
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#ApresJ20 - Association Covid Long France @apresj20.bsky.social · 10/09/2025
📊 Prévalence globale Le taux estimé de #CovidLong est de 36% (IC 33–40%) après infection au SARS-CoV-2. 👉 Plus d’1 personne sur 3 est concernée
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#ApresJ20 - Association Covid Long France @apresj20.bsky.social · 10/09/2025
🧵Une méga-analyse mondiale révèle l’ampleur du #CovidLong 429 études (2021–2024, mise à jour juillet 2024) ont été analysées pour estimer : 🔸la prévalence, 🔸les sous-types 🔸les facteurs de risque. Résultat : le Covid Long reste une menace mondiale. #ApresJ20 @oxfordacademic.bsky.social
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Marie-Michelle Bellon @docteure19.bsky.social · 09/09/2025
On ne vous le dira pas, mais si c’est un enfant de 14 ans qui est à la caisse à l’épicerie du coin, c’est pcq il y a une crise de main d’œuvre, et cette crise est alimentée par tous ces gens qui sont désormais trop fatigués pour travailler à temps plein ou pour travailler tout court. 3/
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Marie-Michelle Bellon @docteure19.bsky.social · 09/09/2025
On ne vous le dira pas, mais le Paxlovid et la Metformin prise pendant 14 jours lors d’une infection covid aiguë réduisent vos chances de développer la covid longue. Encore faut-il avoir accès aux tests de dépistage, puis à la médication. 2/
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Marie-Michelle Bellon @docteure19.bsky.social · 09/09/2025
On ne vous le dira pas, mais les cas de covid sont à la hausse depuis la rentrée de septembre. On ne vous le dira pas, mais chaque réinfection augmente votre risque de développer la covid longue. 1/ @baptistejean.bsky.social
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ME/CFS Science @mecfsscience.org · 02/09/2025
1) On May 12 2025, a group of researchers signed an International Declaration stating that "there is a moral, medical, economic and scientific imperative to invest robustly in international and collaborative research into the pathophysiology of ME/CFS and Long COVID."
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valebodi.bsky.social @valebodi.bsky.social · 07/09/2025
New study out of Norway Killer cell immunoglobulin-like receptor (KIR) alleles suggested to be associated with #ME/CFS www.sciencedirect.com/science/arti...
sciencedirect.com
Killer cell immunoglobulin-like receptor (KIR) alleles suggested to be associated with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic and debilitating disease with unknown cause. Involvement of infection and imm…
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Edith CL @edithcl.bsky.social · 21/08/2025
Par la fenêtre, je vois la vie le ciel bleu soir le sorbier en fruits le mainate affamé la voisine assise dehors à profiter des derniers rayons de soleil j’ai juste envie de sortir la rejoindre comme les soirs d’été comme avant …
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Edith CL @edithcl.bsky.social · 16/08/2025
www.vietnam.vn/fr/nuoi-con-... #maternite #allaitement #environnement #ecologie #parentalite
vietnam.vn
Allaitement maternel : ajouter 1 mois équivaut à planter 300 000 arbres
(Dan Tri) - Selon les estimations, si chaque mère ayant un enfant de moins de 6 mois allaitait son enfant exclusivement pendant un mois de plus, l'impact environnemental de cette pratique pourrait êtr...
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Edith CL @edithcl.bsky.social · 16/08/2025
www.change.org/p/the-nhs-mu... #me/cfs #mecfsawareness #severemecfs
change.org
Sign the Petition
The NHS must take measures to STOP Dill deteriorating
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MEAction UK @meactionuk.bsky.social · 12/08/2025
The horrendous situation that Sarah Boothby found herself in as her daughter lay dying is still being faced by parents, usually mothers, around the UK. ow.ly/nlhv50WCEp4 #MyalgicEncephalomyelitis #VerySevereME
ow.ly
As my daughter died of ME, the state met in secret to blame me
Maeve Boothby O’Neill’s mother had no idea she was being accused in private of causing or fabricating the illness that would take her life aged 27
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Canadian Covid Society @covidsociety.ca · 14/08/2025
Help shape Canada’s respirator standard! Until August 19, the CSA Z94.4 standard is open for public comment — and for the first time, it includes protections in health care settings. 1/
Graphic with text and images. 

Woman wearing an N95 mask and medical gloves, with the following text beside her: Support the CSA draft standard for respirator masks in health care. Public feedback is open until August 19th!
 
Image of a tablet showing a webpage with the following text beside it: DoNoHarm BC has created a thorough guide on providing feedback.
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Adriana P. LongCovid Canada Collab. @longcovid-adri.bsky.social · 14/08/2025
CANADA!! We need to keep pushing for this so we can have SAFE HEALTHCARE! Help by entering your comments, it can take as little as 5mins and share far and wide! WE NEED TO GET LOUD! 🖤🤘 @ninjazz636.bsky.social @longcovidcan-co.bsky.social @young.me @edyong209.bsky.social @exceedhergrasp1.bsky.social
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T. Ryan Gregory 🇨🇦 @tryangregory.bsky.social · 14/08/2025
No one could have foreseen this.
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Marc Veldhoen @marcveld.bsky.social · 11/08/2025
Possible long COVID biomarker: identification of SARC-CoV-2 related protein(s) in Serum Extracellular Vesicles Is it, a biomarker discovered? Or is this a bit of fluff? link.springer.com/ar... 1/5
link.springer.com
Possible long COVID biomarker: identification of SARC-CoV-2 related protein(s) in Serum Extracellular Vesicles
Infection -
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#MEAction Network @meactnet.bsky.social · 08/08/2025
As we come to the end of Severe ME Day, I wish I had some powerful words that could bring you peace, hope, and encouragement. What I can do is remind you that your words have power. Your stories matter. #SevereMEday #UnitedForME #pwME
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Cynthia Johnson @minetodo.bsky.social · 05/03/2025
You are not forgotten I see your faces, I know your names, I remember your stories. #StandByMEcfs #StillSickStillFighting #MillionsMissing #TeachMETreatME #GlobalVoiceForME #EndMEcfs
Photo description: A hand with End ME/CFS blue bands on wrist. Photo credit: Cynthia Johnson (who has suffered from ME/CFS since 2009).
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#MEAction Network @meactnet.bsky.social · 08/08/2025
In honor of #SevereMEday, #MEAction is honored to share the Severe ME Artists Project 2025! www.meartistsproject.com/severe-me-ar... Over 100 of you submitted photos, drawings, writing, music and videos of your work for our 5th Severe ME Artists Project! #SevereME #UnitedForME #pwME
Frame hanging on gallery wall with bench in front. Text in frame: Severe ME Artists Project Gallery 2025 Now open for virtual showing at #MEAction website: bit.ly/SMEAP25
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Emily Johnson @emilyrj.bsky.social · 08/08/2025
If you want to learn more about the recent @decodemestudy.bsky.social Myalgic encephalomyelitis study that found 8 genes associated with ME patients, join this free webinar on August 14 at 10:30 AM EST: us02web.zoom.us/webinar/regi... #pwME #MECFS #MedSky
us02web.zoom.us
Welcome! You are invited to join a webinar: DecodeME Initial Results Webinar . After registering, you will receive a confirmation email about joining the webinar.
Welcome! You are invited to join a webinar: DecodeME Initial Results Webinar . After registering, you will receive a confirmation email about joining the webinar.
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Larre Bildeston @larreau.bsky.social · 09/08/2025
My son has been bedbound for a few years now. He is 17. I miss his company terribly even though he is always home.
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ME Association @meassociation.org.uk · 08/08/2025
The new album release for #SevereMEDay - 'In Limbo', by the late, great Kara Jane Spencer meassociation.org.uk/2025/08/kara... #InLimbo #karajane #MECFS #MyalgicEncephalomyelitis #SevereME #MEResearch #MEAssociation #ramsayresearchfund #charityalbum
meassociation.org.uk
Kara Jane's new album is out today - The ME Association
‘In Limbo' is the name of the new album released […]
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ME Association @meassociation.org.uk · 08/08/2025
World ME Alliance: #SevereMEDay "Around 25% of people with ME/CFS experience severe or very severe symptoms." Please help us to raise awareness of this debilitating condition this Severe ME Day. Graphics: worldmealliance.org/what-is-me/seve…
IMAGE DESCRIPTION: A black background with the image of a woman's face, partly hidden and looking somber. Wording - Severe ME means watching my peers lives move on while I am in stasis. #SevereMEDay, August 8th. World ME Alliance logo. IMAGE DESCRIPTION: A black background with the image of a persons face looking out, half hidden in shadows. Wording - Severe ME means I am hidden from society. #SevereMEDay, August 8th. World ME Alliance logo. IMAGE DESCRIPTION: A black background with the image of a man's face looking down. Wording - Severe ME means noise and light are intolerable. #SevereMEDay, August 8th. World ME Alliance logo.
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C.H. Romatowski @chromatowski.bsky.social · 08/08/2025
August 8 is Severe ME Day. It recognizes the 25% of people with myalgic encephalomyelitis (ME) whom this neuroimmune disease has left so severely ill, we're home- or bedbound. 1/
A darkened picture of me, a 40ish white woman, leaning against a pillow. Overlaid text reads August 8 is Severe ME Day
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