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

MSEsperanza

MSEsperanza

Senior Member (Voting Rights)
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 @ahimsa , @Tom Kindlon 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.

Edit 2:
ahimsa said:
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.
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MSEsperanza said:
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 @ahimsa, @Tom Kindlon and others who posted on the forum or let me know by other means. But some of the new 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?
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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
 
MSEsperanza said:
Good to see so many familiar names on Bluesky. Maybe there will be a bridge to Mastodon and other social media someday.
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Just FYI, there's already a bridge between Bluesky and Mastodon (and other Fediverse platforms)

https://fed.brid.gy/docs
Bridgy Fed said:
Bridgy Fed is a decentralized social network bridge. It connects the fediverse, the web, and Bluesky. If you're on one of these networks, you can use Bridgy Fed to follow people on other networks, see their posts, and reply and like and repost them. Likewise, they'll be able to see you and your posts too.

Click here to get started, or read on for more information and setup details.
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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.
 
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MSEsperanza said:
But where's David Tuller?
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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.

David Tuller - Fediverse feed for Trial by Error blog.png

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.
 
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MSEsperanza said:
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.
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@ME/CFS Skeptic who in my opinion is one of the most incisive and informative activists is now posting his material regularly on Bluesky and Mastodon: not just individual posts but also whole threads
e.g.
https://bsky.app/profile/mecfsskeptic.bsky.social/post/3lbmkj6ux632t
https://mastodon.online/@mecfsskeptic/113532405281804913

Edited to add: I forgot to mention X also:
https://twitter.com/user/status/1860307848137228617
Click to expand...
 
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