Social Media and MS – Are You Keeping Up?

With the average person spending nearly two hours a day on social media , the way we consume information has changed dramatically over the past 10 years. 82% of us now have a Facebook account ; and when we’re not browsing friends’ status updates, we’re scanning our Twitter feeds (where more than 65 million tweets are now posted daily), or checking out the 2 billion videos on YouTube , (with 400 hours of videos being added every minute! ).

But social media isn’t just for keeping up with the latest juicy gossip. More and more of us are using it as a health tool, too. In fact, for anyone with a chronic condition like multiple sclerosis, social media is a valuable way to stay connected and keep abreast of the latest medical developments . Here’s how to make it work for you:

Know Who’s Who

You might not be able to get an appointment with the leading authorities on MS, but following him or her on Twitter is the next best thing! Healthcare providers and health organizations have been embracing social media more than ever, which means you can now follow top experts from around the world and learn more about their research. Professor Gavin Giovannoni and Professor David Baker from St Bartholomew’s hospital in London, for example, write regular posts on The Multiple Sclerosis Research blog (www.ms-res.org), reporting on the latest studies and inviting readers to comment and interact.

Keep Up to Date

Yes, social media has a wealth of pointless cat videos and celebrity GIFs, but if you customise your channels effectively, you’ll have access to valuable information which could inform your own treatment. Follow specialist health websites (like ours), organisations like the MS Society (@mssociety) and your favourite health journalists for breaking news on MS. Of course not everything you read online can be trusted (like that link to ‘The Miracle Herbal MS Cure’ your mum may have sent you, for example), so ask your doctor which sites he or she recommends, and speak to other people in the MS community to find out who they follow.

Educate Yourself

Worried about a procedure? Check out one of the many health videos on YouTube, covering a range of different procedures from lumbar puncture to undergoing an MRI. You’ll also find a number of interesting TED talks and vlogs including one by Marlo Donato who posts frank accounts of her life with MS, covering everything from bladder issues to her sex life.

Find Your Community

Social media is a great tool for reaching out to others within the MS community, allowing you to share your experience, discuss your concerns, and evaluate the latest treatments. For example, search Twitter using the hashtags #mymsjourney, #multiplesclerosis or #msresearch; look for MS Facebook groups (the National Multiple Sclerosis Society posts regular updates, from tips to breakthroughs); and check out MyMSTeam.com – a social network platform exclusively for people with MS with over 31,000 members .

Make Yourself Heard

Being part of a large community gives you a bigger voice – one that the medical establishment can’t ignore. Patient groups are taking to Twitter and other social media platforms to share their views, raise awareness and lobby for healthcare reforms. So whether you feel strongly about research funding or disability rights, shout about it and help set the agenda.

The Future of Medicine

In a recent survey , more than half of respondents said they’d like their healthcare provider to use social media more, from making appointments and reporting test results, to sharing health information. Who knows, maybe one day you’ll be able to Facebook message your neurologist rather than trek to the hospital, or simply tweet at your MS nurse whenever you have a concern.

One thing’s for sure, with so much information and support just a few clicks away, having a chronic health condition like MS no longer feels quite so isolating. So if you’re reading this article on your smartphone after a friend has posted it on Facebook, or perhaps tweeted you the link, be sure to share. If nothing else, it’ll make a nice change from all those cat videos…

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