Julie Marcoux
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majulli.bsky.social
Julie Marcoux
@majulli.bsky.social
890 followers 1K following 10 posts
ME CFS, Long COVID, Comorbidities & disability advocate | Former social worker | She/Her/Elle | #MECFS #EMSFC #LongCovid #CovidLongue #DisabilityJustice

Tiohtià:ke | Montreal 🇨🇦
Posts Replies Media Videos
Reposted by Julie Marcoux
solveme.bsky.social
Watch the Solve - Bateman Horne Center webinar “Severe #MECFS Research: Removing Barriers to Access” w/ @sabrinapoirier.bsky.social of @icancmeresearch.bsky.social & Dr. David Putrino (Dept. of Rehabilitation & Human Performance @ Icahn School of Medicine at Mount Sinai). youtu.be/65apr_RsdFM
Severe ME/CFS Research: Removing Barriers to Access
YouTube video by SolveME
youtu.be
February 20, 2025 at 9:39 PM
Reposted by Julie Marcoux
levin.bsky.social
This artists access statement is tremendous. I want this for all of us. All shows, not just ones made by and about ME/CFS & the ongoing pandemic
My hand holds a paper in front of a lit cabaret stage. It says “Access Statement Dan Fishback is Alive, Unwell, and Living in His Apartment seeks to welcome audiences who are often not included in performance, and reaches toward a universe where accessing such a welcome is no struggle at all. The performance uses an approach called Integrated Access, in which access is tied to the show's values and purpose and is creatively structured into its core. The access in this show is not simply functional, but rather works as a way for audience members to experience access as a fundamental part of the world. All access is open, meaning that the full audience experiences the access-rich environment of the show. Audio description, projected captioning, and ASL performance, as well as required masking to protect the performers and the community, create access infrastructure that oounce off each other, reverberate, clash, and find resonance. In a 2024 hellscape of pandemic, genocide, and fascism, we have to dream galaxies into our corners of the world. For some sick and chronically ill people, much of this imagining happens from bed, and can be deeply isolating. Alive, Unwell (and the galaxy brain that is Dan Fishback) has created a way around this, wherein multiple Dan Fishbacks-alongside his ancestors-commiserate, build power, and build access. And through this access, we break into a space of collective belonging. We encourage you to use the access tools both functionally and to understand this cross-disability, coalitional approach to art-making and world-building.”
December 15, 2024 at 5:53 PM
Reposted by Julie Marcoux
davetuller1.bsky.social
The BMJ @bmj.com has published a review of Long Covid interventions that of course recommends CBT and a mental/physical health rehab program. But the studies underlying the recommendations are at "high risk of bias." This is really propaganda.
virology.ws/2024/12/03/t...
Trial By Error: Yet Again BMJ Recommends CBT and Exercise for Long Covid | Virology Blog
By David Tuller, DrPH What is going on at The BMJ? In May, the journal corrected an obvious error in a paper about a prominent Long Covid mental and physica ...
virology.ws
December 3, 2024 at 8:31 PM
Reposted by Julie Marcoux
seastarbatita.bsky.social
Today, on the International Day for Persons with Disabilities, I am beyond proud that the Canadian Institutes for Health Research have released their Anti-Ableism Action Plan, entitled "From Intention to Impact". 1/3

cihr-irsc.gc.ca/e/54121.html...
From Intention to Impact: CIHR Anti-Ableism Action Plan - CIHR
cihr-irsc.gc.ca
December 3, 2024 at 10:08 PM
Reposted by Julie Marcoux
doriec.bsky.social
Education organization: We are excited to announce our upcoming panel on equity, diversity and inclusion in education spaces.

The panel:
A collage of lifetime Christmas movie posters which all look eerily identical. Each poster features with a white woman wearing red and a white man wearing green with Christmas decorations surrounding the couple
November 30, 2024 at 2:08 PM
majulli.bsky.social
Add 13 years and it's my story. I am SO worried for all those out there repeatedly catching COVID.
kateviolette.com Kate Violette @kateviolette.com · Nov 29
I had probably-diagnosable ME/CFS for like 7 years before I managed to self-diagnose (and it was then another year or so before I actually found a doctor who knew the illness at all, to formally diagnose me)

I keep trying to tell people: what we're seeing now for LC is the tip of a terrible iceberg
sharpflower.bsky.social Da(N95)iella @sharpflower.bsky.social · Nov 29
Are there people going about their lives who don’t know they have Long COVID? “Oh, that's for sure.” - @zalaly.bsky.social 🧪

You can also find the episode on your app of choice: episodes.fm/1775839058
November 30, 2024 at 3:17 AM
Reposted by Julie Marcoux
louisemignault.bsky.social
She's right. If we don't take precautions we may pay the price. Is it worth it? Time to wear masks again.. x.com/keetmuise/st... or directly from tiktok www.tiktok.com/@mudflapbrok...
January 12, 2024 at 1:06 PM
majulli.bsky.social
Share and spread. We are failing our kids. Our kids gang!!
@thecovidinfoguy.bsky.social thanks for saying this loud and clear. 🩵
thecovidinfoguy.bsky.social Denis - The COVID Info Guy @thecovidinfoguy.bsky.social · Feb 19
By Keith @keetmuise

"Closing Schools did reduce Covid Transmission, it was warranted, and it may be necessary in the future."

#Covid19 #NotMild  #Maskup #LongCovid #CovidIsntover #SafetyNow #CleanAirNow #Measles

Watch video here: twitter.com/keetmuise/st...
November 28, 2024 at 12:44 AM
Reposted by Julie Marcoux
thecovidinfoguy.bsky.social
By Keith @keetmuise

"Closing Schools did reduce Covid Transmission, it was warranted, and it may be necessary in the future."

#Covid19 #NotMild  #Maskup #LongCovid #CovidIsntover #SafetyNow #CleanAirNow #Measles

Watch video here: twitter.com/keetmuise/st...
February 19, 2024 at 1:27 AM
majulli.bsky.social
Yes! Thank you @sunsopeningband.bsky.social Repeat after me: " Long Covid (and ME) isn’t FND" Pass it on.
November 27, 2024 at 4:37 AM
Reposted by Julie Marcoux
dalupton.bsky.social
Your regular reminder that the COVID pandemic is NOT over. Please use language accordingly. Don’t refer to ‘during the pandemic’ or ‘post-COVID’ or ‘since COVID’. We are still in the thick of it - wave after wave. People are still dying or becoming disabled from Long COVID
November 24, 2024 at 6:23 AM
majulli.bsky.social
Thank you so much @spichaksimon.bsky.social writing about his major and very concerning issue. 🩵
November 26, 2024 at 2:21 AM
Reposted by Julie Marcoux
sabrinapoirier.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.
November 22, 2024 at 11:26 PM
Reposted by Julie Marcoux
kakape.bsky.social
I think many people really underestimate how likely a new pandemic is to occur in the next four years.
Even if you think of a pandemic as a once-in-a-century event, that's a 4% chance over the next four years. And I think in the world we live in a pandemic is far from a once-in-100 years event. 🧪
November 24, 2024 at 8:33 PM
majulli.bsky.social
November 23, 2024 at 3:36 AM
majulli.bsky.social
@katebrowne.bsky.social go.bsky.app/9EF74eY
November 21, 2024 at 11:01 PM
Reposted by Julie Marcoux
spichaksimon.bsky.social
I've got something brewing about the recent CAN-PCC recommendations for Long COVID...

Feel free to reach out if you're a Long COVID/ME researcher who wants to discuss the draft recommendations which are currently open for comment.

canpcc.ca/public-comme...
Public Comment - Canadian Guidelines for Post-COVID-19 Condition (CAN-PCC)
[...]Read More...
canpcc.ca
November 21, 2024 at 4:33 AM
Reposted by Julie Marcoux
sunsopeningband.bsky.social
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.
November 16, 2024 at 7:03 AM
Reposted by Julie Marcoux
exceedhergrasp1.bsky.social
✨Welcome, Newskies, to Bsky! ✨

This is going to be a thread of introductory fino. The first thing we're going to do is reply to this post with a "pushpin" icon in the emoji stuff below.

Do that now, and I'll explain why in my next post! (1/?)
October 17, 2024 at 1:22 AM
Reposted by Julie Marcoux
broadwaybabyto.bsky.social
We need to make respirators cool, free, accessible & understood.

People had to understand the threat of HIV and the efficacy of condoms to be willing to wear them.

We’ve been lied to about the threat of Covid AND people don’t understand the true efficacy of respirators.
November 12, 2024 at 6:55 AM
Reposted by Julie Marcoux
sabrinapoirier.bsky.social
Sharing this again because we need to find each other and our communities on here. 💙

We need to be connected now more than ever. 💛

If you create new starter packs, please include as many of us as possible.

go.bsky.app/KnwWePQ
November 8, 2024 at 5:15 AM
Reposted by Julie Marcoux
sabrinapoirier.bsky.social
“It takes a village…”

I need a village. My family needs a village.

Genuine question:

How am I to build a new village when I have no energy to connect and when I do, it’s too hard to be vulnerable and not fall apart doing so?

(My previous village basically forgot I exist.)

1/
November 2, 2023 at 2:37 PM