IACCSky: Bluesky Feeds for People with Long Covid, ME/CFS and Related Diseases
(Re)Introduction to Bluesky
I started using Bluesky in 2023, soon after developing Long Covid. I’d been mostly a lurker on social media since deleting my Facebook profile in 2013, but getting sick made me want to start engaging more. Reading Twitter throughout the pandemic had helped me quickly identify that my neurological symptoms, which I developed in the weeks following a mild initial infection, were Long Covid. I’m not exactly a true believer in social media as a force for good, but I’d seen individuals and communities wield it effectively, and I wanted to participate. Also, like many people with infection-associated chronic conditions (IACCs), I had become limited in my ability to safely connect with others in person. (For me, for now, this is mostly due to the risk of infection and subsequent decline. Others have limitations or symptoms that make leaving the house very difficult, and some people with severe ME/CFS cannot physically handle in-person contact.) Like many people, I don’t find social media to be an adequate substitute for making new friends in person, but it’s the main space our community uses to gather and organize. It’s what we have, and I value the friendships I’ve found there.
For anyone who isn’t familiar, Bluesky is a Twitter-like microblogging platform that works somewhat differently. The code is open source, meaning that anyone with coding skills can easily verify that algorithms for displaying content work the way the Bluesky team says they do. By default, you see posts from people you follow in reverse order of when they were published (i.e. newest first). There’s also a “discover” page that, as far as I can tell, is widely made fun of for not working well and is minimally used. All accounts and posts are public–there’s no way to make a private account for now. But on the other hand, blocking people works much better than it does on Twitter. For an accessible but in depth guide to Bluesky and how to use it, I recommend this thread by Jaime Seltzer, ME/CFS advocate and scientific director at #MEAction (although the thread is not specifically targeted at people with IACCs). I have a somewhat different perspective on one or two of the things discussed, but it’s a great introduction for anyone who is new to Bluesky that addresses many of the issues people who find it difficult to use have raised.
Survey Background
There have been a few big waves of people attempting to migrate from Twitter to Bluesky. Every time this happens, it seems like a lot of people make an account and then can’t find their friends, have problems with the new technology, find the site’s social culture too different from Twitter etc. and give up on it. I had been mentally cataloguing the negative feedback people in the IACC community have about the site for a while, and considering whether tech solutions might exist for any of it. In general (and this is a much bigger topic), people with tech skills need to do a better job of distinguishing between primarily-social problems and primarily-tech problems. Solutions to social problems often require supportive technology, but people wrongly try to solve them with whatever tech is trendy at the moment. However, it’s possible to keep this in mind while recognizing cases where tech changes can make a meaningful difference.
I suspected, and still believe, a primary issue IACC community members have with Bluesky is a social one–not enough of their friends and favorite big accounts are there. But other issues people have raised could potentially be solved by someone with a coding background. One of Bluesky’s core principles is that it should be easy for people with programming skills to organize content however they or their communities prefer. I was interested in filling that role for the IACC community and wanted to get an idea of if it was worth spending the time. I made a short survey with the following questions:
- Which of the following best describes your use of Twitter (X) and Bluesky? (Select one: I exclusively use Twitter and have not made an account on Bluesky | I mostly use Twitter but have made an account on Bluesky | I use Twitter and Bluesky about equally | I mostly use Bluesky but am still on Twitter | I exclusively use Bluesky and have deleted my Twitter/never had one)
- If you have used Bluesky, which of the following describes your experience with LC/MECFS-related content? (Select multiple: Most of my friends in the community aren't active on Bluesky | Most of my favorite accounts for LC/MECFS content aren't active on Bluesky | I don't think my followers are seeing my posts about LC/MECFS that I spent energy on | I often miss posts about LC/MECFS that I would be interested in | I often experience harassment on my LC/MECFS posts | I see lots of posts about LC/MECFS that I strongly disagree with or find upsetting | Other)
- If you are on Bluesky, are you aware of keyword feeds for finding LC/MECFS related content? (yes | no)
- If you answered yes to the last question, have you used keyword feeds to find LC/MECFS related content? What did you think of them/how has this affected your experience on the site? (Short answer)
- If you are on Bluesky, are you aware of starter packs for finding LC/MECFS related accounts?
- If you answered yes to the last question, have you subscribed to any LC/MECFS related starter packs? What did you think of them/how has this affected your experience on the site? (yes | no)
- If you are on Bluesky, what changes (if any) would you make to the algorithm that would improve your experience as a member of the LC/MECFS community? (Short answer)
I’m extremely grateful to the 75 people who responded. It was amazing to see this many responses, since I had been expecting maybe a third of that number at maximum. I understand that responding to questions, especially ones that require short form answers, can be difficult for many people in our community. I very much appreciate your time and your energy.
Survey Results
85% (63/74) of respondents to question 1 reported that they mostly or exclusively use Bluesky, and only 10.8% (8/74) reported mostly using Twitter. In retrospect, I would have needed to do something differently to reach more mostly-Twitter users. I posted the survey on Bluesky and while friends kindly shared it to Twitter, Twitter suppresses links and doesn’t seem to reliably show posts to peoples’ followers. And since most of the subsequent questions were about Bluesky, it makes sense that people who were more familiar with the site would have more to say. A survey of Twitter users on what they like about Twitter and what could persuade them to try a different platform, or more detailed research on overall use of social media in the community, could be very interesting and I hope someone does that work someday.
The most selected option as a response to question 2 was by far “I often miss posts about LC/ME” at 56.7% (38/67). A large number also said most of their friends in the community (31.3%, 21/67) or favorite accounts (34.3%, 23/67) aren’t active on Bluesky. 16.4% (11/67) reported feeling like people don’t see their posts about LC/ME that they spent effort on. Notably, no one (0/67) reported frequent harassment on their posts about LC/ME or seeing lots of posts about LC/ME that they strongly disagree with or find upsetting.
The next questions were about two Bluesky features meant to help users find posts about specific topics and other users who discuss those topics. Bluesky has a third-party app that allows users to easily create “keyword feeds”, which display all posts containing certain words. There are several keyword feeds that already exist for chronic illness—I found some by searching “long covid” and then clicking the “Feeds” tab of the results. Creating your own custom keyword feed doesn’t require writing code and is free. Only 50% of survey respondents were aware of keyword feeds, but most respondents who shared additional thoughts about them had positive or mixed opinions:
"Sort of hard to figure out which ones to use sometimes, but they help connect people"
"I have quite a few LC MECFS, chronic illness feeds that I check every day but I do find I have missed some content. It is great to see more of the researchers on BlueSky and other key people in the LC MECFS community are now using BlueSky"
"I’m aware of them but haven’t found the spoons yet to figure out how they work. I do think it would help if more of the community knew how to use these features."
"I spend most of my Bluesky time in the main covid-conscious feed, a chronic illness feed and a LC feed. Tbh I hardly check my followers feed. It feels good to scroll knowing most or all of the posts will be on topics dear to me."
"Eh, they’re ok but I would like a version that’s just the people I want to hear from on those keywords?"
Bluesky also has “starter packs” which allow users to follow a bunch of people at once. Starter packs of users who frequently post about Long Covid and ME/CFS can be found by searching “long covid starter pack” or “me/cfs starter pack” on the explore tab. 77% of respondents to this question were aware of starter packs. Again, the additional thoughts were mixed to positive:
"It has helped me find accounts I had followed on Twitter but couldn't find on BlueSky just from searching"
"I am in some and it’s made my account bigger than I’m comfortable with, and I am not subscribing because I can’t track so many people. I really miss private lists!"
"Yes, it was helpful. More of these would be great."
"I didn’t bulk-subscribe but did look through and find many people to follow. I’m also in at least one of them and do clearly get followers from it."
"Starter packs don't mean much when there's no option to be notified of every post by people I particularly want to follow. That's a big disadvantage of BlueSky."
"I prefer to go through the lists and select which individuals to follow one by one when I have capacity, so that I can find folks who are more aligned with my values and to avoid transphobic and other problematic behaviour. (Yes this sadly exists in our community)"
Finally, some respondents shared general thoughts about their experiences on the site:
"I do wish I could make private lists so I could sort out the different people I follow based on what they post, without the organizing being public lists"
"Although I’m following a lot of people, I don’t seem to view as much about research"
"There are two kinds of LC posts: one is news about the disease, its spread, treatments and politics around it; other is people describing all their symptoms or all they had to do to get thru a day. These are not perfectly separated inside a post or by account, but roughly I’ll admit to favoring the former, newsier category. I have long covid and I’m a journalist looking to learn more about the disease and what the world is doing about it."
"I appreciate all the LC accounts, posts and support. One thing I do wonder though is how to get better results for mutual aid requests. Twitter sucked bad for that. Facebook has me so shadow-banned that nobody sees my MA requests or much of anything else I post anymore. Bluesky is better but not by much...When people can just add "fundraiser" etc. to their mute lists, it's not great. People don't get how financially devastating LC/MECFS can be."
"I cant use social media much, so maybe a daily/weekly recap with the most popular posts that i can look at. I feel very much stuck in my own circle of 5 people on my personal feed currently I often miss things and than only see them days or weeks later"
"I would be interested in a UK feed as well as an international one"
IACCSky Feeds and Secret List Hack
I developed six different Bluesky feeds with custom logic for the IACC community based on survey feedback. If that sounds like a lot of work, it was, but six feeds was only marginally more work than just one would have been. So it’s totally possible to deploy additional feeds with custom logic if community interest exists. For the purpose of the feeds, I am defining “IACCs” inclusively to cover Long Covid, ME/CFS and related conditions such as EDS, POTS, MCAS and fibromyalgia. To see a full list of which keywords are associated with which feeds, or to access the code itself, check out my github.
IACC-Specific Feeds
IACC Following: Posts about IACC thoughts and experiences from ONLY people you follow.
IACC Discover: Discoverable posts about IACC thoughts and experiences from people you DO NOT follow. A post is discoverable if it contains "#[keyword]" such as #LongCovid or #mecfs or #fibromyalgia.
IACC Links: Posts from people you follow OR discoverable posts that include links with specific keywords. This feed will contain links to research, news, blog posts, etc. about IACCs and related social issues.
IACC Mutual Aid: Posts from IACC mutual aid community members about mutual aid or about IACCs. For your posts to appear on this feed, post or reply "@iaccsky-updates.bsky.social AddToMutualAid" without the quotes and you should get an automatic notification within a few minutes that you are added. To remove yourself so your posts will no longer appear, post "@iaccsky-updates.bsky.social RemoveFromMutualAid" without the quotes.
Although it only came up a few times on the survey, I have noticed several people discussing how difficult it is to fundraise on Bluesky. I absolutely encourage people to use this feed to support community members who are fundraising, if you are able: give someone a dollar if you can; “adopt” someone’s fundraiser and repost it a few times a week if you can; leave a comment telling someone you hope they get what they need, if you can. Things are hard for lots of people right now and fundraising sucks. I will be periodically reposting fundraisers I see on this feed and would love for others to do the same.
IACC United Kingdom: Posts from IACC community members in the UK. For your posts to appear on this feed, post or reply "@iaccsky-updates.bsky.social AddToUnitedKingdom" without the quotes and you should get an automatic notification within a few minutes that you are added. To remove yourself so your posts will no longer appear, post "@iaccsky-updates.bsky.social RemoveFromUnitedKingdom" without the quotes. Note: feeds for other countries or regions can easily be deployed if people are interested!
Secret List Hack
IACC Secret: Posts about anything from people on your secret list. You can set up a secret list by following the instructions in this thread. Your list will not be associated with your Bluesky account, and will not be visible if someone accesses your profile or on any public third-party apps. Another person accessing this feed won’t see posts from people on your secret list; they will only see posts from people on their own list, if they have one.
Replies Setting
All feeds will include replies by default. If you would like to keep replies from appearing for you, you can post or reply "@iaccsky-updates.bsky.social RepliesOff" (no quotes) and you will get an automatic notification that replies will no longer be visible. To turn them back on, post or reply "@iaccsky-updates.bsky.social RepliesOn" (no quotes).
Moderation Policy
I don’t want to be responsible for people encountering hate, so the feeds will have a moderation policy. This will probably come up rarely, if ever; Bluesky currently doesn’t appear to have the same volume of trolling or malicious discourse that Twitter does (though others may have had a different experience). People should tag me at https://bsky.app/profile/iaccsky-updates.bsky.social if they see behavior that meets any of these criteria. An account can be banned from appearing on the feeds for these reasons:
- Having a username or handle that supports hate movements. For example, users “hitlerfan1488.bsky.social” and “Proud Terf” would get banned.*
- Using hashtags (appearing on the IACC Discover feed) to harass individuals or groups (including on the basis of race, gender, sexuality, ability etc.). For example, posting “#LongCovid isn’t real” or “gay guys shouldn’t have jobs #mcas” would get someone banned for harassment using hashtags.
- Using hashtags (appearing on the IACC Discover feed) to maliciously compare different IACCs for the purpose of hurting others. For example, posting “#mecfs just means you’re tired, but #LongCovid is real”. This is about pretty egregious cases that I haven't seen on Bluesky as of today.
- Otherwise using the feeds for harassment in some way. I want people to let me know if something obviously bad is going on that involves the feeds, even if it doesn’t technically meet the above criteria.
*I’m not going to preemptively ban people (this would be too much work for me), so if you see hitlerfan1488 somewhere other than on one of the IACCSky feeds, please don’t tag me. If hitlerfan1488 has Long Covid and posts about it such that they appear on any of the feeds (excluding IACC Secret–if you see them there, it’s because you put them on your secret list), let me know.
Conclusion
I really appreciate the community participation in this effort. Thank you so much to everyone who responded to the survey, and to everyone who pointed out software bugs with the feeds as I was working on them. I believe we deserve the best digital spaces we can create for ourselves, and will continue to work toward that goal in whatever ways I can. For any questions, feedback or suggestions, I will be available at https://bsky.app/profile/iaccsky-updates.bsky.social.