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jengovey.bsky.social
I dress up in fancy dress for the charity Invest in ME Research to raise funds & awareness of Myalgic Encephalomyelitis. In a previous life I worked in film. I’m an advocate for good science, treatments & better healthcare for #pwME.
12 posts 1,264 followers 170 following
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Posts 13 Comments 10

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.

submitted 566 days ago • 1 comment

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...

submitted 605 days ago • 23 comments

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.

submitted 590 days ago • 3 comments

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.

submitted 591 days ago • 48 comments

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

submitted 591 days ago • 1 comment

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.

submitted 633 days ago • 23 comments

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

submitted 593 days ago • 1 comment

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.

submitted 593 days ago • 56 comments

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.

submitted 610 days ago • 0 comments

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.

submitted 609 days ago • 8 comments

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

submitted 613 days ago • 1 comment

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?

submitted 610 days ago • 11 comments

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

submitted 609 days ago • 1 comment