Julie Marcoux

YouTube video by SolveME Severe ME/CFS Research: Removing Barriers to Access

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

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.”

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

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...

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...

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

Education organization: We are excited to announce our upcoming panel on equity, diversity and inclusion in education spaces.

The panel:

Add 13 years and it's my story. I am SO worried for all those out there repeatedly catching COVID.

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...

Share and spread. We are failing our kids. Our kids gang!!
@thecovidinfoguy.bsky.social thanks for saying this loud and clear. 🩵

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...

📌

Yes! Thank you @sunsopeningband.bsky.social Repeat after me: " Long Covid (and ME) isn’t FND" Pass it on.

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

Thank you so much @spichaksimon.bsky.social writing about his major and very concerning issue. 🩵

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.

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. 🧪

Thank you so much for doing this very needed and helpful paper 💙

@katebrowne.bsky.social go.bsky.app/9EF74eY

Public Comment - Canadian Guidelines for Post-COVID-19 Condition (CAN-PCC) [...]Read More...

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...

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.

📌

✨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/?)

📌 Awesome introduction. Very helpful

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.

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

“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/