Profile avatar
snowypanthera.bsky.social
Animagus. Hearty but not hale. Celebrant of beautiful action. Likes bicycles. Note: The only time I post with my real name is in scientific journals.
116 posts 64 followers 123 following
Prolific Poster
Conversation Starter

Advocacy is an ongoing process. Whenever you are feeling up to taking action, check the list below.

Use Signal. We promise, no AI clutter, and no surveillance ads, whatever the rest of the industry does. <3

Well-done, and worth a read: "Make Better Choices" Isn't Public Health Policy by @maggieboxey.bsky.social maggieboxey.substack.com/p/make-bette...

“We’ve created a culture where if someone is sick or disabled or struggling, it must be their fault, a failure of effort or character. Public health isn’t about personal choices. It’s about the systems, environments, and policies that shape what’s possible”

1) One of the studies that noted 'something in the blood' of ME/CFS patients has now been replicated with a large sample size. Unfortunately, no effect was found.

I am one of the millions missing. Author, educator and advocate Maggie Boxey shares what her life is like living with ME/CFS, and how she has found a community of people for whom "feeling better" might never be an option. [14 mins] +Transcript tinyurl.com/3hbxkku8

🧵 I thought this was good (as I'd expect from @oonaghcousins.bsky.social & @thereforme.bsky.social team): "The importance of understanding rest: How my experience of rest as an athlete clashed with my experience of rest as a patient" www.thereforme.uk/p/the-import... #MEcfs #LongCovid 1/

I hate articles like this, the journalist should check their own privilege...

🧵 Medscape (widely read by health professionals): ‘Symptom Invalidation’ in Clinically Uncertain Diagnoses Can Leave Lasting Mental Health Harms www.medscape.com/viewarticle/... (may require free registration) Thought this was good & interesting. #lupus #chronicillness #MEcfs #IBS #POTS #FMS 1/

So worse than fiction then?

Clip from The Golden Girls (1989): Dorothy confronts the doctor who dismissed her. She says he made her feel crazy, that a man might’ve been taken more seriously, that if doctors knew what it was like to be sick and scared, they might learn more — and patients need to be listened to.

Psychology Today: 'The Negative Consequences of Invalidating Patients' Symptoms' 'Patients suffer when clinicians dismiss, ignore, or minimize symptoms' 'This is particularly true of the last five years...including long Covid and POTS' www.psychologytoday.com/us/blog/shou...

www.youtube.com/watch?v=Jrpg...

If your business model doesn’t work without breaking the law, then you’re not in business. You’re in organized crime.

Does anyone know what the deal is with getting a sci-net.xyz invite code?

Some smart people are finally pushing back against "AI" hype. www.understandingai.org/p/i-got-fool...

I was dumped by a GP this week, took the kindness and wisdom of receptionists to find another, although many of the best doctors were not taking on new patients so it was a bit of a wild goose chase. Sometimes I think that receptionists have better people skills and would make better doctors than...

Do me a favor if you want to get into medicine but only take care of perfect patients who know their medical history and all of their medications and get upset when they don't, maybe think about why you want to be a doctor.

Latest blog: Pandemic contradictions - and why we need to to reflect on our discourse, and be as critical of ourselves as we are of those we disagree with: dontbelievehype.co.uk/covid-%26-va... See full blog for some commentary, but some pandemic contradictions include 👇🧵

"Notes on Vanishing" www.youtube.com/watch?v=cqhi...

By @anilvanderzee.bsky.social "Doctors as Patients (with subtitles)" www.youtube.com/watch?v=J0yw...

USA based but: www.youtube.com/watch?v=Md3L...

People like to buy themselves out of solutions when the correct answer is call your legislators and ask them if they or their children (if they have them) want to die from a food borne illness and if not to get the fda and usda back to proper staffing levels

Continuing my Paypal boycott, managed to convince a few small-scale sellers to provide alternative payment platforms other than Paypal which is nice.

These guys took their famous catchphrase from my comic but ok www.theguardian.com/australia-ne...

🧵 It would be great if friends of people with ME/CFS or long COVID would take the time to read this. These conditions are very socially isolating and lonely and patients would love to maintain friendships www.emerge.org.au/how-to-suppo... #LongCovid #MEcfs 1/

“Long Covid is not rare. It’s not limited to ‘only the vulnerable’. People of all ages, walks of life & health status are dealing with this debilitating condition. If you know more than a handful of people, odds are you know someone battling Long Covid….” #speirgorm #spéirghorm #COVID #BrainHealth

You can eat all organic food, drink green juice every day, do yoga, get vitamin D and touch grass… and still become disabled. Wellness culture can’t save you from disability. What’s worse, most wellness “gurus” will blame you when you become ill. Wellness culture is toxic & eugenics adjacent.

OK I kind of need to dig into this a little. DIY healthcare exists because of how this country has always treated chronic illness: we often have no choice but to access what we can by ourselves. And then able-bodied folks will mock sick folks for turning it to DIY methods like supplements & diet.

Healthy people: you shouldnt let your disability define you! ✨ 🌈 Disabled person: *does something fun* 🤗 Healthy people: r u even that disabled tho? 🧐

Chat from bed on the ME Diary channel about seeing the world of the ill from the world of the well www.youtube.com/watch?v=pgNn...