ME Advocacy Project

Please join @putrinolab.bsky.social and I for this free webinar on Tuesday where we will be talking about increasing accessibility and collaboration in research. 👇

Thanks for hosting us and this discussion @solveme.bsky.social and @batemanhornecenter.bsky.social ! 💙

Given how much our infection-associated chronic illnesses community (including #MyalgicEncephalomyelitis #LongCOVID #POTS #MCAS, #hEDS, etc) has had to fight the very same battles for decades, I wanted to contribute to their efforts and learn more from them too.

Please join me in welcoming @defendpublichealth.bsky.social to BlueSky.

This is a group I’m involved with.

We’re just getting started but already I can tell you that there are many brilliant and deeply passionate individuals who care about science and fighting misinformation and disinformation.

People Who’ve Had COVID Could Be Almost 8 Times As Likely To Develop ME/CFS New research finds levels of the chronic condition are now 15 times higher than pre-pandemic.

"Scientists calculated that the incidence of ME/CFS is now 15 times higher than pre-pandemic levels, and found that people with a history of COVID are almost eight times as likely to develop the chronic condition." 🧪

www.iflscience.com/people-whove...

Everything Wrong with Canada's Proposed Long COVID Recommendations The proposed Canadian guidelines for treating Long COVID pose harm to patients and risk psychologizing the disease.

Canada's proposed Long COVID recommendations (CAN-PCC) pose harm to patients.

I spoke with experts + advocates including @sunsopeningband.bsky.social, Adriana Patino, @sabrinapoirier.bsky.social to breakdown why.

#pwME #LongCOVID #CanadaSky

simonspichak.beehiiv.com/p/everything...

Jordan’s long COVID story YouTube video by Department of Health Victoria

You can protect yourself & your loved ones from COVID with these 6 steps:

😷 Wear a respirator mask
🏠 Stay home if sick
⏰ Test if you have symptoms
🌳 Let fresh air in or meet outdoors
💉 Stay up to date with your vaccinations
💡 Talk to your GP about COVID medicines.

youtu.be/FlBfq22nxt8?...

Thank you for doing this to support our fight in Canada! 💙

Just tagging in some Canadian advocates who can help me spread this wider.

@carriemcginn.bsky.social
@phillatouche.bsky.social
@meadvocacyproject.bsky.social

Red and white graphic of CAN-PCC Canadian guidelines for post COVID-19 condition. CAN-PCC recommendations public comment survey – November 2024. Draft recommendations for input.

Advocacy alert ‼️ New Canadian draft recommendations for Long Covid are out, & they include concerning guidance to EXERCISE to prevent Long Covid, & to use CBT as a treatment.

Have your say by Wednesday Nov 27 at 8:45 pm Pacific / 11:45 pm Eastern: www.research.net/r/CAN-PCCRec...

Hey everyone. Please sign the international list if you haven’t already.

Our friends in the US need our support! Canadians benefit greatly from the advocacy and research done in the US too. 💙

Press release: The Sick Times announces one year of covering the Long COVID crisis - The Sick Times “Our reporting on Long COVID remains as vital today as it did when we launched,” executive editor Miles W. Griffis said. “Many of our colleagues in the media continue to minimize the disease and the o...

"Many of our colleagues in the media continue to minimize the disease and the ongoing COVID-19 pandemic — but not The Sick Times." - @mileswgriffis.bsky.social

It's our birthday! One year of covering the #LongCOVID crisis without denial, minimizing, or gaslighting. bit.ly/3USv2w6

Yes, it's less a treatment and more of a deeply imperfect survival skill.

I get annoyed when some ppl describe pacing as treatment for PEM/PENE. It’s not treatment, it’s more of a measure taken for damage control and I’m tired of pretending it’s not.

Could I be any more touched to see our researchers wearing masks at a conference?

Nope. 🥹

Thank you so much @binitakane.bsky.social @resiapretorius.bsky.social @putrinolab.bsky.social @profmarkfaghy.bsky.social @laelyonker.bsky.social ! 💙

#Solidarity
#Safety
#LeadingByExample
#Allies

10 RFK Jr. conspiracy theories and false claims, in his own words Here are the debunked health claims that Robert F. Kennedy Jr. has made over the years that concern medical experts.

It is important to reflect on just how WRONG this guy is...

10 RFK Jr. conspiracy theories and false claims, in his own words www.washingtonpost.com/health/2024/...

Pushes:
- Autism/vaccine myth
- COVID vaccine lies
- Ivermectin nonsense
- Misinfo about antidepressants
- AIDS lies
- etc etc etc

Additional scripts for cis het white men who want to be better allies:

“What a weird thing to say”

“Do you hear yourself right now?”

“You shouldn’t say shit like that to people”

“I won’t let you talk to them that way”

“That’s a disgusting opinion to have”

“Shut the fuck up, dude”

How Did We Get Here and What Comes Next? Disabled people have been warning others for nearly 5 years that eugenicist Covid policies would lead to a rise of fascist, racist, bigoted, misogynistic hatred. It's here now. So what’s next?

Folks are shocked at the increase in racist, misogynist, ableist beliefs. Especially where “your body my choice” is concerned.

You know who’s not shocked? Disabled people. Those who’ve been fighting for Covid mitigations.

The masks came off years ago - Tuesday’s election just made it louder:

Reminder: Masks protect against all types of airborne viruses.

If another pandemic starts, masks will be a key first line of defense, especially as we won't have a vaccine right away.

#pwME #pwLC who isn't over here yet from the bad place that we need in our corner? Advocates, allies, journalists, researchers etc?

Wondering if we need to appeal to them to set up an account here too if they are staying there

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

www.youtube.com/watch?v=278v... Videos of the PolyBio symposium held on Friday are available on youtube. Lots of exciting work being done by so many researchers. Thank you so much.

Oh you made it! Thanks so much for doing that.

This is helpful. Thanks for sharing.

Where is this from? (It would be better for sharing if it had references on the bottom.)

"Kids don't come home and say, 'Mom, I have 'PEM', I have brain fog,'" he said. "What happens is that they start doing poorly in school, & parents find out weeks & weeks later."
If at all. Uncounted marginalized children will fall victim to the carceral system.
www.cidrap.umn.edu/covid-19/not...