Brian Shuell @Bshuell@qoto.org

So proud of my friend Ryan Prior who just published his book on the patient movement to understand & research long covid. Ryan developed serious chronic illness in high school, made a documentary about it, improved enough to finish college & land a job at CNN, where he wrote two of the most read stories on CNN's website. Now he's written the definitive account of how people who never recovered from covid have built a movement. #covid #longcovid #bookstodon #books https://www.amazon.com/Long-Haul-Pandemics-Changing-Healthcare/dp/1637581416?ref=d6k_applink_bb_dls&dplnkId=67995777-948a-488e-af06-c08b7936d0ed

I highly recommend that people watch Unrest by Jennifer Brea.

This documentary gives a glimpse into what it’s like to live with M.E. It’s sensitive, powerful and the best piece that I’ve seen on the subject. Such an important film. Especially no, as the number of people that are being disabled by Long Covid & M.E are rapidly rising.

#UnrestFilm #MECFS #MillionsMissing #LongCovid #ChronicIllness #NEISVoid

New York Magazine have published an outrageous article on #LongCovid , claiming post-viral illnesses such as #MECFS are treatable using #psychotherapy - implying such illnesses are driven by psychological factors not physical dysfunction.

This outdated view is widely discredited #pseudoscience. Shocking to see it rehashed in 2022.

Here, journalism professor David Tuller, who was mentioned in the article (but not interviewed for it), reports on some of the reaction.

https://www.virology.ws/2022/11/12/trial-by-error-more-on-that-new-york-magazine-piece-pushing-psychogenic-view-of-me-cfs-and-long-covid/

Guess what?

On Mastodon, your follower/follows ratio doesn't matter. No one cares about your #clout. You don't need to build a #brand.

If you follow a bunch of people it shows that you are curious and want to hear ideas from diverse sources. Go crazy with the #follows and the #boosts. The more the better.

But feel free to #unfollow if things get overwhelming. And use #Lists to put your follows into more manageable cohorts to see what a limited group of people are posting.

It's actually pretty amazing that a open source product developed by a tiny non-profit, running on a network of servers self-funded by volunteer administrator and moderators has managed to absorb some portion of one of the world's largest for-profit social networks.

It's a miracle the whole thing didn't collapse or catch fire.

Great job everyone.

Last #fediverse comment and then I go to bed. There’s nothing watching you. You can like a picture of a cat and nothing will steer 100 more cat pictures into your feed. Nothing fills your screen with cat food and cat beds and ads for cat services. You can visit the timeline of someone #NSFW and nobody knows and nobody cares. It doesn’t feed anybody’s AI model about you and who you are and what you’re like. You’re not for sale here. The timeline: it’s chronological. There’s no steering it or reordering it or buying the top slot. It’s just like the weather. It just happens. Lean into it.

Another quick PSA for the newcomers:

There is no Mastodon.

As in, there is no entity out there called Mastodon that needs to "get it together" or "make things easier."

Every server is a unique collection of hardware and software operated by a unique team of (usually) volunteer humans funded by (usually) donations.

Some days will be smoother than others. We new folks have flooded the network. Cut the volunteers some slack. Better yet, offer support.

Can someone please kill the concept of 'immunity debt'? Getting infected with pathogens doesn't make you healthier.
https://globalnews.ca/news/9272293/immunity-debt-covid-19-misinformation/

If you are anything like me, you are looking through this shiny new thing you discovered (Mastodon) and building your new cozy niche. But as as someone with #PEM I must remind you to go slow and save your spoons! Now time to take my own advice… #pwME #chronicIllness #spoonies

I was struck by this comparison in this CNBC story on number of people with #LongCovid (16.3 million) versus 1.7 million with cancer a year.
But the NIH gives $6.4 Billion per year to cancer research and only gave $1.15 Billion to Long COVID (over 4 years). It’s not enough, especially when Long COVID could cost the US $3.7 trillion.

https://youtu.be/RMzoCNPctuo