During my early bedridden years, mobile phones didn’t even exist. The only info on ME was two tatty library books and they were crap Being isolated back then, really meant complete isolation. My version of social media was letter writing to people all over the world. Waiting to see if a letter would arrive or not each day was the only thing i had to look forward to; this helped to keep me connected to the outside world to an extent. I was addicted to that the way people are to facebook etc now. But with letters i could pour my heart out if i wanted to knowing it was very private between only me and one other person. It felt more theraputic than typing on a screen (though probably torture for the person trying to read my writing usually scrawled in the dark) I’ve never trusted social media and feel really relieved that i’ve never used it. The only 2 things i use frequently is this place and youtube. I can imagine social media is a godsend for most ill people these days.
Agree with the article. I thought it was going to be about the dilemma ill people face when using social media is their only lifeline, but their social media use can also be used against them to deny benefits. Also found this ironic from the Guardian, considering their ME coverage: I think I'll fund David Tuller instead if that's ok.
And now you have..... It all started very simply. A friend lived far away & suggested facebook to keep in touch. Then I connected with another friend and before I knew it I was beimg tormented by it. Always with the encouragement to share more. No thanks. I emailed my friends and explained I was removing myself and that was that.
Glad you escaped the trap of social media, I did too, though I suspect there are many shadow profiles of us anyway. Social media, good for chatting and meeting people as if you were in public, terrible and dangerous for a heart to heart. I think national charities would do well to give people a good education on the internet, and collaborate on ways for their members to connect privately using existing technology. I was just think earlier about when things actually tangibly existed, like letters, vinyl records etc. Then I realised I'd managed to loose 4 biscuits and felt very old. I'm glad you survived the isolation, it must have been very hard, especially for people who are naturally extroverted.
I really don’t like Facebook I only joined to be part of a local ME group. I don’t like the format comments easily get lost in closed groups so there’s a lot of duplication and in the bigger open pages like AFME it’s like going out to an informal get together in a local park where anybody can come along and derail things by talking random rubbish about the experience their cousins best friend had with xxx whatever the latest claptrap is. Or worse cults like LP send out their believers to hop on to threads to try to hook people in.
OK that counts too but I meant in the context of #DeleteFacebook movement. I think most of the people are just threatening, but in the end almost no one will delete their facebook account.
I haven't deleted my facebook account mainly because it's the only way I get to see news from some of my extended family around the world, and because I find Facebook messenger a useful tool for quick contact with a few people, and I play Words with Friends with a few people too. I only look at my FB newsfeed about once a day, and I think I've only posted one thing on FB in the last year. I'm still on Twitter, but have given up following it and joining in since the latest misunderstandings involving Jen Brea's tweets. I think it's a useless medium for real communication, though I do understand some people like the brevity of the messages. I gave up on the MEA facebook group once I found forums which are so much better for real communication and information sharing. I wish organisations like the MEA (@Russell Fleming) and @Action for M.E. would regularly advertise this and other forums for their members. I only discovered PR by accident about 2 years ago and wished I had known about forums years earlier. I missed out on so much, both information and interaction. There must be lots of other MEA members who would love to be part of S4ME who are simply unaware of our existence.
