Monday, 16 March 2015

M.E. Awareness, and the progress that has been made

A post about the progress that the M.E. community has made in recent years, with regards to awareness, education and expression of the illness.

Last year M.E. and Fibromyalgia awareness really seemed to kick off!  Every year on May the 12th my Facebook feed is filled with posts and comments in order to raise awareness of M.E.  However last year was the first time that any of my non-M.E. friends also got involved.  Even better, they weren't doing it because they knew me.  They were doing it because they had other friends who were raising awareness of the illness.  This was the first time that I could legitimately say that I had been reached by M.E. advocacy, outside of my own connection to the illness.  To me this was a real sign of change, and a moment that I know I will never forget!

Obviously a lot more needs to be done to change the public's perception of the illness.  There is still a huge amount of injustice and misunderstanding.  This post is not about softening the harsh reality that is living with a largely unrecognised debilitating illness.  But as someone who has suffered with this illness for a while, I have noticed a small change in the way that people talk to me, (my university were fabulous) and a very small slow change in the way that these things are represented in the media.  Which doesn't mean a diminishment of derogatory articles, but dose mean an increase in media publicising the genuine existence of this disease.

Take for example the sale of books discussing M.E.  When I first became unwell in 2007 naturally myself and my family took to Amazon to try and find books to help us out and provide insight.  There were very few available, and some were seriously dodgy! e.g. bogus remedies and theories written in the 80's!  Now I log onto Amazon and search "myalgic encephalomyelitis" or "ME/CFS" and a whole list is available, the majority written in the last few years, with a huge number written in 2012,13 and 14.  The tide is turning!  This is amazing and something that we need to celebrate in the M.E. community.  I can only be thankful for the incredible progress that has been made in the last 7 years, and of course am proud to say that I have personally known some of the people who have been involved in this!

For those newer to the illness it may seem frustrating that so little is known, and that the public are so ignorant.  It was ridiculous 5-10 years ago when I was first ill, and unimaginable 20 years ago.  We are going through a real time of change and I believe that now, and in the next few years the groundwork is being laid for spectacular change.

The M.E. community is quick to jump on rogue media articles, and false research claims - and rightly so.  However I have noticed that the community are less eager to celebrate positive media and research.  I know that this is due to the fighting spirit that so many of us have.  The same spirit that has go us to where we are; with very little help from others and a lot of bad press to our name.  But it is also good to take stock, and appreciate everything that has been achieved over the past few years.

There are so may positive campaigns these days.  Another thing that stood out to me last year was the Twibbon campaign (where people attached a blue ribbon to their facebook/twitter profile pictures to raise awareness and show support for the condition).  The uptake was relatively small compared to other awareness days.  However this was the first year that there had been a successful social media campaign for M.E! ...I know it will be even bigger next year.  I really do feel that as a community we are beginning to get organised and act as one.  In previous years there have been many conflicting campaigns with different images and a poor uptake.

 With the rise of organisations like Let's do it for ME! and projects such as the independent film Canary in a Coal Mine things are beginning to move along.  Now there is a place for those who want to support the cause to come together.  Something that has never happened before and has been long overdue.  It is a exciting time to have this illness - if I can even go as far as saying that!  It will be even more exciting once we have a cure, or even biological test!  I am at least beginning to be able to imagine this happening  now.  The first step is allowing the community to gain momentum, and interest/support from those who are not affected.    Never has  M.E. awareness been so thought out.  I know that there is still a long way to go, but we are getting there, our future is brighter than our past.

The plans for this years M.E. awareness week are already being put into place.  I'm confident that yet again this year there will be more media coverage than ever before, and that much more people will engage on social media.  It is a given that more money will be raised than ever before, and rightly so!  I'm still riding high on the success of last year!  Will you be doing anything this year to make M.E. awareness week better than ever? 

MEAW 2015: 11th-17th May

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