Finding (patient) advocates and (civil) scientists on social media

There were a couple of social media accounts on ME/CFS research and advocacy, as well as more general research relevant for ME/CFS I used to follow in the past.

I haven't checked them for a while due to diverse reasons, including diminished capacity / downturn in my health.

I was happy to occasionally find some of the 'old' accounts now on Mastodon, thanks to @Tom Kindlon[/USER] and others who posted on the forum or let me know by other means. But some of the new Mastodon accounts now seem to have been given up, too.

I thought it could be helpful to have a single thread where we could share any lists on useful accounts on diverse social media platforms.

I'm aware there is some on members only off-topic chat threads where similar information gets posted (e.g. Bluesky starte packages) but at the same time more general discussion about diverse social media happen.

So how about a thread only for sharing accounts useful for ME/ CFS advocacy, including information on accounts that moved to other platforms, but also accounts still (mainly) on X/Twitter?


Edited for clarity.

 

I've posted a lot of starter packs for Bluesky in the last week or so to this thread:
https://www.s4me.info/threads/bluesky-and-related-discussion.35467

 

Here's some 'starter packs' on Bluesky to get started with:

ME/CFS Advocates: https://bsky.app/starter-pack/mecfsskeptic.bsky.social/3lb2n3xzjom2c
ME CFS Long COVID: https://bsky.app/starter-pack/lindaoh.bsky.social/3lagl6khbkr2z
ME, Long COVID & Co: https://bsky.app/starter-pack/chromatowski.bsky.social/3kzuwom43qs2m
Long COVID Advocacy's Starter Pack: https://bsky.app/starter-pack/longcovidadvoc.bsky.social/3l6wnyg6mxd2y
Disability, Neurodivergence, Chronic Illness: https://bsky.app/starter-pack/lizzzs.bsky.social/3l4md7cq33f2r
Real Life Disabled People: https://bsky.app/starter-pack/jesshoneybadger.bsky.social/3lathcpxv4l2n

 

Thank you @Dolphin and @EzzieD-- that's very helpful.

Good to see so many familiar names on Bluesky. Maybe there will be a bridge to Mastodon and other social media someday.

For those who don't have an own account ( I don't have either), here's how you can access the accounts listed in the starter packs -- on some packs the accounts are just clickable. If not, try this:

https://bsky.app/profile/[name or alias]bsky.social

As many people seem to use the same name or alias as they used on other platforms, you can also try searching for accounts that aren't listed in any packs yet.

For example, I didn't see roberthmcmullen on any of the collected packs, but putting the alias together to a handle as described above worked -- here they are:

https://bsky.app/profile/roberthmcmullen.bsky.social

Same with: https://bsky.app/profile/neurostingl.bsky.social

 

So I remembered Brian Hughtes' website where I found he's on Bluesky now too (and posting, whereas no activity on Mastodon for several months now)

https://bsky.app/profile/bmhughes.bsky.social

But where's David Tuller? @dave30th ?

Link to his blog here

 

https://bsky.app/profile/davetuller1.bsky.social
https://x.com/davidtuller1

 

A starter pack maybe useful for those interested in clinical trial methodology:

https://bsky.app/starter-pack/katiegillies.bsky.social/3lbd5pt5kno23

(Surprised by the very broad spectrum of disciplines and subdisiplines)

 

Just FYI, there's already a bridge between Bluesky and Mastodon (and other Fediverse platforms)

https://fed.brid.gy/docs

In case it's not clear, this bridge is opt-in, not automatic.

By the way, I do post a fair amount about ME/CFS and Long Covid (mostly on Mastodon), but I also post about other topics. And I boost A LOT of posts on other topics. I wouldn't want someone to think that my account is mostly about ME/CFS.

 

The posts from his Trial By Error blog are posted to the Fediverse automatically so you can follow that feed on Mastodon. Search for user " @ david @ trialbyerror.org " (delete the spaces) and then follow.

Note that this is not an interactive account.



NOTE: I edited this to fix the Mastodon user name. I added spaces because it looked like it was trying to tag a forum user.