Connecting via Bluesky
Building a stronger ME community
I’ve been on Bluesky for a little while, but many from our ME community haven’t been on there… until now. A LOT of people have now joined the platform and it looks like it may become a good place to connect.
I wanted to share some information about joining and participating.
No invite is necessary. Previously someone had to invite you to join, but it is now open to everyone. To join, download the app at bsky.app. Create a username and password. You will have to provide your email address and birthday.
Once you have joined, a good next step is to fill out your profile. By sharing information about yourself, people can easily see if you have common interests. (This can be edited later). My current profile says:
Colleen Steckel @colleensteckel.bsky.social
Advocate for #MyalgicEncephalomyelitis using ME-ICC.
Contracted ME in 1989
Substack: colleensteckelmeiccinfo.substack.com
Volunteer at www.MEadvocacy.org
Aspiring writer of paranormal fiction
There is a character limit for profile and for posts. The limit for Bluesky posts is slightly larger than on X.
You can upload a banner and a profile picture similar to what can be done on other social media platforms. I am using the same blue butterfly profile pic as seen on my other social media accounts.
Connecting with others
Here are some tips to find people affiliated with the myalgic encephalomyelitis community.
Using the search box enter “myalgic”. On a computer this should pull up the following options.
Top and Latest will show posts that include the word myalgic.
People will list people on Bluesky who have the word myalgic in their profile description.
Feeds provides a list of feeds you can follow.
On a phone you will see the same options after you initiate a search.
Feeds
I think feeds on Bluesky is one of their better features. I have found it much easier to see discussions on specific topics. Instead of having one feed decided by an algorithm, you can choose from a wide variety of feeds created on specific topics.
Once you have found a feed you are interested in click on the + sign. Once you have added it to your list of feeds, it can be pinned to the top to make it easier to quickly move between feeds. Anyone can create a feed, so there may be more than one feed on any topic.
To see all the feeds you have added click on the # symbol in the top right hand corner. Below that list is a “Discover New Feeds” section.
Some of the feeds have a post that explains what will be found in that feed. The following are the most active feeds I have in my favorite list:
Discover - shows a variety of trending posts from your personal network.
Mutuals - post from your mutual follows
#ChronicIllness - “This feed pulls in posts with the keywords of #mecfs, #cfs, #LongCovid, #eds, #lupus, #fibromyalgia, #fibro, #POTS, #MCAS #MigraineChat and #NEISvoid”
ME/CFS (blue background & white radio signal symbol) - “Finds keywords of #mecfs #cfs #MEScience ME/CFS and #MEAwareness.”
ME/CFS (battery symbol) - “This feed picks up ME/CFS specific acronyms: MyalgicE, MECFS, ME/CFS, CFS, PwME, CFS/ME, PEM, PESE”
Science - “The Science Feed. A curated feed from Bluesky professional scientists, science communicators, and science/nature photographer/artists.”
Neuroskyence - “Neuroscience posts on BlueSky!”
#Disability - “Any post that contains the keywords of disability, #disability, #pwd, #NDIS, #accessibility, and [handicap symbol] will be picked up in this feed.”
MedSky - “a place for the medical community to get together and exchange ideas.”
Some feeds are much more active than others.
Connecting with friends
As with other social media platforms, you can search for people using their name and/or handle. I have noticed the search function sometimes misses people who I know are on the platform, but I think that may be the result of some growing pains.
If you want to see who is following you, click on “followers” found under your name on your profile page.
You reach your profile page by clicking on your account icon. In that list of people who are following you, it is easy to see who you have not followed. There is an option to follow them back on that list.
There are lists that have been created to help people find each other.
These are starter packs that I have used. You can follow many at once using the option “follow all”.
The following are feeds that include lists of people. To see the people included click on “about”. These are all created by @longcovidadvoc.bsky.social.
Private conversations
Bluesky now includes a way to do direct messages. This is the symbol to look for:
So far you can only talk to one person at a time.
There are options to limit messages under settings/chat. You can set it to “everyone”, “users I follow” or “no one”.
To reach settings on the phone click on the three lines in the upper left hand corner, scroll down to reach settings.
To start a direct message click on the chat button. On the computer it is in the left hand column and on the phone it is on both the bottom and it is accessible via the three lines in the upper left hand corner.
There are no group chats available.
More info
The following are some guides I have come across that you may find helpful.
Bluesky directory website offers a variety of tools including a list of starter packs, it can be found HERE.
Bluesky directory website also includes a tool to find and follow the same users you are connected to on X (Twitter). That tool is “Sky Follower Bridge” found HERE. (I have not used this.)
An easy to follow video explaining the basics of Bluesky by Machine Pun Kelly can be found HERE.
Long COVID Advocacy wrote a good article, Navigating the Bluesky 101, which I found helpful.
Socializing online
I hope that was not too confusing. I dreaded moving to another platform and it took me a while to get comfortable on there. I still have a lot to learn!
I am winding down my Twitter/X account and will be focusing on Substack, Facebook and Bluesky. I am also on Threads, Mastadon and Instagram, but am not very active on those at this time.
I look forward to connecting with many more people. I see social media as a great way to connect with fellow patients and to educate others about the reality of living with myalgic encephalomyelitis.
Aiming for a better future…
Colleen
P.S. There is a counter tracking how many are joining Bluesky. There are over 17 million and as of right now it is growing by 15 people per second. See HERE.
Information provided here or in comments is not to be considered medical advice
Glad your found it helpful. Thanks for your efforts to help people find each other as well!
This is great, Colleen. Thanks for taking the time to create this. I'll make sure to send to all the folks who are not thrilled about learning a new platform.