Sunday, 16 February 2014

Blogging, FaceBook & Twitter: Campaigning ME

Next month it will be two years since I came down with ME, and still sometimes I wake up expecting to just go and DO all those things I used to do. I can't. So I've had to find other outlets.

To be honest, the computer is now a big feature in my life.

In the first months it was a research tool, and Googling "chronic fatigue" quickly brought me to an ME forum and the advice that protected me from doing massive exercise-induced damage to my health.  There, I learned about good pacing techniques and how important it was to avoid that dreaded Graded Exercise Therapy. 

Next I found Facebook and an amazing network of ME Groups.  Some of these are very much of the coffee 'n' chat variety, whilst others have a strict focus on a particular campaign.  Some are "open" with posts visible to all comers, others are "closed", or "secret".

Facebook has become an incredible means of spreading the word about campaigns, petitions and events. It is remarkably easy to "share" posts across groups and to individual walls so that a message gets quickly promoted for almost instant results.   Indeed the recent demonstration at Stormont (see this post) was able to gather a huge number of letters of support within a few short days, simply due to the networking ability of Facebook groups and individuals.

Twitter took a bit more getting used to for me! It limits posters to very short statements.  However the addition of tags, links and the ability to "retweet" makes it an incredibly fast means of information sharing.  Some tweets can almost go viral, but most are transient.  Yet using links to more permanent internet places, can make Twitter very powerful and retweeting can take the message far beyond the reach of the original poster.

The petition campaigning for a second medical opinion for ME patient Karina Hansen made excellent use of both Twitter and Facebook.  Petition Link  Please take a look at this and consider signing and sharing. 

And finally Blogging!  I have had several blogging false starts.  The first two I set up at a time when I was fit and well and just far too busy "being out and about" to keep a blog up to date.  Believe me I have absolutely NO regrets about letting them slide into oblivion.  I now have three blogs that I post to periodically.  Blog posts stay permanently, and can therefore be a more permanent record.  It is a great way to "say something" and then to be able to point others to the message whenever appropriate.

For those of us with ME or other disabling illness, the internet can be a powerful way to instill some meaning into life.  I may not be as physically active as I would like, but having a voice, and collaborating with others via my screen and keyboard has become a powerful motivator for my life.

I look forward to hearing what others have to say!

In the mean time - here is a Wordle created from the words in this post! 


  1. I totally agree with all that you say in this blog. The computer, internet, face book, twitter and so much more has become an important part of my life. It has helped me to fill that hole that my `real` life once occupied and now I live in a virtual world.
    I would be totally lost without it. I have also met some wonderful people and made some fantastic friends - you being one of them xxx

    1. Thank you Rosalynde. It is amazing how much it helps isn't it. :D xx

  2. Well said Sally. Twitter is a huge part of my life. I have friends who are precious to me that I have never met and one or two whom I've actually met in the flesh who are exactly as I expected them to be. It is an invaluable source of information and support and fun!!

    very best wishes xx

    1. Thank you. I've met in RL a few friends made through cyberspace - and it's it's remarkably how easily we get chatting... :D

  3. I agree with everything merrydholl has said. I've 'met' so many new friends, some who I might never get to meet but that doesn't make our friendship any less real.

    My first port of call was to join an online forum for M.E. sufferers. I know that my M.E. journey would be much harder without the online community.

    1. Yay to the Online ME community. We definitely get more help there than from the confused medical profession!