Jen DressForME

So true. It’s the hardest of lessons. I reframed “giving in” as listening to my body and giving it what it needs. Nurturing. Switching from what the mind wants you to do to what the body actually needs was an important shift for me.

Inaccessibility, failure to accommodate and exclusion of disabled people are not an “inconvenience.”

They are hostile acts that impose segregation, isolation, discrimination and trauma upon disabled people.

I don’t know, but the brain is the biggest user of mitochondrial energy in the body so we can get PEM from it & blood can pool in the legs in pwME because of POTS so maybe that’s why? 🤷🏻‍♀️

Overjoyed to announce my Concise Clinical Review of ME/CFS in Mayo Clinic Proceedings (with updated diagrams!) Very glad to have worked with
Stephanie Grach, and Ravi Ganesh and Tony Chon on this! #MedEd #MedTwitter 🧵 www.mayoclinicproceedings.org/article/S002...

Oh yes it’s getting pretty bad over there. Most seem to be coming here from the community. So this may be the replacement we’ve been looking for!

Inadequate medical training and the lack of a biomarker put pressure on #MECFS patients to describe how they feel (mostly to be disbelieved anyway). I don't recall my mum, for example, having to rack her brains to describe what having cancer was like before receiving chemo.

This is so real. I’ve reported on this over the years in many forms. Coral reef scientists. Conservationists caring for endlings. Public health workers in the pandemic. Journalists covering all the above. The people bearing witness are not okay.

Person with phone taking picture of painting

Person looking at art installation in gallery

Two people viewing a painting

I love taking photographs in art galleries. Always fascinating to watch people interact with art.

Took these while travelling during the summer

#photography 📷 #art #galleries

Why You Should Rest—a Lot—If You Have COVID-19 It could help prevent Long COVID

So many folks are sick again so I share this with love: you must rest. Rest won’t guarantee you don’t get long covid but it’s a huge mitigator. Even if you have an accute mild case. Even if you don’t feel it at all. Send this to your boss. Make your partner clean or use disposable dishes etc.

@ravihvj.bsky.social Ravi! So cool to see you here too! 🥳😍😃

They dug up a huge chunk of London to improve the water systems that eradicated cholera etc. Building regs & legislation for Legionnaires Disease. Why not invest clean air? Improved health outcomes & also protects from future pandemics & all airbourne pathogens. Lower Co2 levels good for health too.

An opinion I feel should be universal at this point: All indoor public spaces (but especially schools, workplaces, and medical facilities) should be subject to air quality regulations and continuous monitoring and CO2 and particulate concentration numbers should be accessibly displayed.

Sorry Jaime. It always autocorrects your name & sometimes it’s just my ME brain….

Yes and they don’t trust various scientific papers or basic physics… but they trust some shady conspiracy dude on YouTube who just repeats Koch sponsored propaganda and… memes….

Remember: The people giving you weird looks won't be there to help feed you or take your trash out when you're too sick to get out of bed.

Maybe decide not to give a fuck about what anyone thinks, who doesn't have skin in the game of your well-being.

Woohoo! @exceedhergrasp1.bsky.social has arrived here! A key follow for anyone interested in #mecfs, with her finger on the pulse of scientific, clinical and advocacy issues.

Woohoo!!! Too.!!!

Funny as I was just searching for Jamie! 😂

A wave and a shoutout to the MECFS, LongCovid and chronic illness community. Nice to see lots of familiar faces on here.

Thanks to the absolute gem that is @julierehmeyer.bsky.social too, as always.

Look forward to discussion on here. :)

#MECFS #LongCovid #pwME #MillionsMissing #ChronicIllness

I don’t miss DMs but bookmarks are so useful!

Let me know, guys, about prominent folks in the chronic illness community who I haven’t found or thought to shout out here. I’m sure I’m missing people. Any key #longcovid folks here? #POTS? #EDS? #MCAS?

@eleanoralbaugh.bsky.social Yay Eleanor! Welcome to Blue Sky! :)

Yay! I just found you! I have the same photo as the other place to help. Lol. I think looking through others follow lists is a good way of finding people.

If I’m not under the tree I’m by the tea and donut truck. 😆 🤣

Hi Dave! Did not know you were banished. Lol it’s good to be able to have a back up! (It’s Jen Dress For ME)