this sentence from Todd is a huge and painful truth

“ME/CFS is still the most common thing nobody's ever heard of”

I’ll quote it several times in my life I guess

As an emergency physician from day 1 of the pandemic, who was offered a COVID vaccine the first week it was available, I had watched young, healthy people die in alarming ways, but I was worried about sticking this stuff into my arm that was approved under an emergency authorization. 1/

Stigma occurs when the story of those with lived experience differs from the story being told — and when this ‘told story’ devalues their identity. That’s why it’s important to listen to those with lived experience.

#pwme #mecfs #chronicillness #disabilityjustice

Disbelief and Disregard in Health and Social Care for people with Energy Limiting Conditions YouTube video by Challenging Disbelief and Disregard

So great to connect with people in the #ChronicIllness community. Here’s our animation on energy limiting conditions. youtu.be/AtdpgiNs_xg?... Animation by @stacybias.bsky.social & @fourfooteleven.bsky.social Research with @alisonallam.bsky.social @thelrm.bsky.social #NEISVoid #ME/CFS #LongCovid

Day 98 - Realizing no outside help is coming, you hit the online forums hard to see if anyone has found a way to improve. The answer is yes, and no, but mostly maybe, kind of, a little, I guess. Undaunted, you try one thing, then another. But not the hook worms. That's just weird. #LC #LongCOVID

Minister Butler (front right) addressing a conference table of speakers for the Parliamentary Friends of ME/CFS group.

The Parliamentary Friends of #mecfs meeting in Canberra has opened with the Minister for Health and Aged Care. He recognised that a clinical guideline that is more than 20 years old is inadequate, and his government is proud to have supported its update.

There are 170 people watching online.

You most definitely have!! Thanks Simone, I appreciate your summaries so much

This is so true. The lack of information/advice from doctors doesn’t help this. When I first developed Long COVID I presented to the GP thinking I was a “temporarily embarrassed healthy person”. I received no information whatsoever to prepare me for what was to come. Now bed-bound.

Such a great idea, thanks for spending your precious spoons on it

Infection-associated chronic conditions: Why Long Covid is our best chance to untangle Osler’s web A research agenda that studies Long Covid in the context of related conditions could transform our understanding of these disabling illnesses.

“Infection-associated chronic conditions: Why Long Covid is our best chance to untangle Osler’s web” by Michael J. Peluso, Maureen R. Hanson, and Steven G. Deeks

👉 www.science.org/doi/10.1126/...

I would love to tell you about the times vaccines prevented me from getting sick, but every time it happens, I don’t notice. I just keep feeling well.

Neither do you.

Public health, when it’s working, is invisible.

Atta boy. Go get ‘em! 😆

💫To help build our community, as Bluesky goes from strength to strength, we're going to start a STARTER PACK 🧵
If you have a good one please add it to the list!
go.bsky.app/Ba6FATY

A post to pin to my profile—hope this starter pack helps you find some familiar faces!

Note: starter packs currently have a 150-account limit so it’s necessarily a very incomplete list; if you see anyone missing (like yourself!), I encourage you to start another pack to cover more of the community!

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.

Thanks for pointing out the “relevance to patient functioning”. Just. So. Critical.

Amazing thanks for this! All followed and off to a roaring start…

Brilliant, can’t wait!

Fabulous article, well done team! Hope this prompts more researchers to view Long COVID in the context of Infection Associated Chronic Conditions. It is so frustrating that we still repeatedly see research and discussion of Long COVID and ME/CFS occurring in seemingly completely seperate silos