I voted twice. ME community is helpful, and other. I enjoy finding people with my same wacky symptoms, but also find it depressing/tiring hearing about people getting worse and daily stuff. But even knowing I could push too hard and get worse, I still do it. It’s a love hate relationship?
I don’t think my brain is working so sorry if this doesn’t make sense.
it's all in how you use it and where you go - it takes a while to find how to use it wihtout it damaging your mental health, but ultimately once you know how to use it it is helpful - not necessarily to improve the ME but it makes life more tolerable because you feel connected.
I quit social media way before I got ME/CFS. I didn't like the "feeling" of it (though had no negative experiences.) I still have a twitter and Facebook hanging there as I didn't shut them down, but never go on them.
However, I may decide to go back one day. Who knows? I can imagine social media, groups, etc can be very helpful as well as comforting with specific subjects such as ME/CFS.
for me it's "meh" - simply boring and without meaning, so I don't use them. I guess if I was using them actively to connect with friends, then it would be depressing to see others people traveling, building relationships and achieving something with their lives while the only thing that keeps you moving in life is trialing experimental treatments (that is, if you have the guts to do it).
Before ME I disliked social media,I used to say „I actually have a Life“ but now,the opposite is the case. Only social media makes it possible to feel connected with the world even though I cant leave my bed. It must have been horrible to have ME in earlier times.
The problem I found was that social media was so time consuming, and the more that dropped onto my "to do" list, the later I got to sleep at night basically. Then the to-do list became harder to manage with ME/CFS, and so something had to give.
I didn't mind at all, hearing about what others were up to with their lives, families etc. Most of what excited them had ceased to interest me for some reason a long time ago, but I was pleased to hear their news, for their sakes.
The trouble was, it got harder and harder to keep up with everything and I felt like my mind was getting too overwhelmed with it all. To much stimulus coming in all the time.
The one thing that did get to me though, was my inability to do animal (dog) rescues, fosterings etc (as I subscribed to lots of pages about those things.) It used to make me cry. Too much.
I have a love-hate relationship with social media - I don't like connecting "real life" identity with internet identities. I intensely dislike Facebook, use Youtube, despite the fact that it is run by a corporation who doesn't really care about people (many Youtubers are regularly screwed over by Youtube). I use Twitter anonymously, though I note that it can turn into a cesspit of negativity, or abuse if you use it wrong. Twitter can be nice for concise reviews of papers or commentaries from conferences, as well as a way of connecting to people who you might not otherwise have been able to communicate with - but it needs to be used with care.
Some people are overwhelmed by some of the toxicity or negativity on Facebook or Twitter (or Reddit etc) and so I'd recommend anyone who chooses to use social media to do it with some self reflection, such that you stop using it if it brings down your mood or stops you from focusing on the meaningful things in your life.
In my experience, specific internet forums have much more of a community feel, where you actually start to care about the people you chat with, despite not knowing them in real life. As opposed to Reddit where it always feels like you're communicating with complete strangers. But forums also have risks of personality conflicts, disruptive individuals and formation of cliques which leads to it's own problems.