ME is REAL! Why ME Awareness Week matters more than ever… | 18 April 2019

April 18, 2019


Helen Hyland, Fundraising Manager, ME Association.

ME Awareness Week runs from 6th to 12th May. This year, the ME Association’s campaign is “The REAL M.E.” Telling the world about the REAL People that suffer because of this REAL disease, for day after day, week after week, year after year, and in some of the cruellest cases, decade after painful decade.

Real People. Real Disease. Real M.E.

We believe that the best people to tell the story of M.E. are Real people. People, like all those who share their lives with the M.E. monster each and every day. People, like those pictured in our main campaign poster.

REAL people – not models or actors. People of all ages, all walks of life, at various stages of their illness. Real people who have kindly donated their images to what we believe to be the largest such gallery of Real People with M.E. in the UK today.

The poster opposite (just click it to download) is just one of several that we have created for ME Awareness week.

Thousands of these have already been printed and sent out to our members.

The office has more, should you want a hard copy and are not able to print it at home or share as a download (01280 818964 weekdays, between 9.30am and 3.00pm. Email: Head Office.)

We’ve all got our stories to tell. It took me nearly 10 years to tell my own. I remember exactly where I was when I told it.  I was chatting with Elaine Newman, my predecessor, in our handover meeting in April 2014.

The story was hard to tell. At one stage we both burst into tears, stopped speaking and just hugged tightly – both oblivious to everything going on in the coffee shop around us. Both sharing the pain, but also the relief of speaking to someone else who totally understood what we had been through. It was so good to talk.

M.E. gets you that way. For me in my (then) new role, it was the first of many such emotional conversations. They don’t get any easier, but it is vitally important that these REAL stories are shared and told.

And that, to me, is what ME Awareness Week is all about. Real People. Real Disease. Real M.E.

The Success of ME Awareness Week

It is frankly hard to believe that so much has happened in those five short years since I joined the ME Association. The film, Unrest has happened, and as a direct result there is now strong political will across the spectrum to push governments for more support for sufferers and more funding for research.

The ME Association has worked hard to help make these happen, and we continue to do all we can to keep M.E. at the forefront of public consciousness. ME Awareness Week has also grown out of all recognition with many more people with M.E. now doing all they can to share their own stories to raise awareness about, and more funds for, this horrid disease.

What’s the saying? “From little acorns….”  Well we too started small all those years ago. Anna Jones (now Redshaw) set the tone beautifully for my first official ME Awareness Week with her hugely successful Blue Sunday virtual Tea party.

A beautifully simple idea – sharing tea and cake with friends and family, and inviting Facebook and Twitter friends to join in the fun online. She’s done so every year since.  All Anna asks is that each person donated the price they’d pay for a cup of tea and a piece of home baking.

With Anna’s kind permission and blessing, we ‘borrowed’ her idea and Go BLUE for ME was born. The aim was to encourage anybody and everybody to do what they could to spread awareness of this disease, but in their own unique and creative ways.

Why BLUE?  Because blue is the internationally accepted colour for M.E. and because this hideous invisible illness has got to be coloured in for others to see and understand.

You can’t get more unique than a filmed head-shave at a football ground, but that is exactly what Barbara Shuttleworth did in 2015. The next year saw our first official Go BLUE for ME JustGiving campaign – created largely by our own fundraisers. It took off, and the ME Association’s own Facebook page nearly broke under the strain of its busiest week ever!

Companies joined in the fun – like Subway (pictured above), Fujitsu, and Mazars, as well as schools and colleges. 2017 saw Mary Cousins setting out with ‘Wobbly Steps' to conquer all the country’s cathedrals, and the fountains in Trafalgar Square lighting up blue in support of our campaign.

In 2018, Lauren Childs exhibited her knitted blankets in Coventry Cathedral – knitted from squares gathered from sufferers and their families from all over the world.

ME Awareness Week 2018 was our busiest yet, and also a huge milestone for me personally as it saw me addressing my first ‘Millions Missing' demonstration and re-telling my own story, this time to hundreds of people.

But is ME Awareness Week now as relevant? YES!  Never more so! Because there are still people out there who do not understand or believe that M.E. is real – parents, teachers, employers and doctors amongst them.

And because M.E. remains woefully unsupported, underfunded, and under-researched. And because we all need to cling to the hope that with more equitable support and care one day our nightmare will be over, and effective treatment or a cure will be found.

Help and Support

The ME Association is here to support you with whatever wacky fundraising ideas you have – with moral support, better fundraising leaflets and posters than ever before, and a madcap community that is more determined than ever before to make its mark.

And what about raising awareness? Well you need to get your thinking caps on. Now is the time to get ready so that from May 6th to May 12th this year, you too can do all you can to share stories, highlight issues, and join thousands of our members who will putting up the posters we have sent them with their ME Essential magazine.

What can you do? 

Please share REAL stories and images far and wide between 6th and 12th May.

  • Stories from our website – which we will begin publishing from the 1st May 2019 and will be from REAL people with M.E. These are stories that are featured in the current edition of ME Essential magazine and many others that we have arranged to be published in news outlets across the UK during the course of ME Awareness Week.
  • Posters (see above – just click the image to download) that you might like to print and display, or share on social media etc. You can request hard-copies from head office (01280 818964 weekdays, between 9.30am and 3.00pm. Email: Head Office.) and we will be publishing more posters from 1st May.
  • Images from our website gallery – not of models or people pretending to have this cruel disease, but of REAL people who suffer with it every single day. We will be publishing photos with REAL quotes from all those featured in our campaign as info-graphics on the website and social media from 1st May and hope that you will share them across your networks.
  • Share your own image and story, if you feel that you can, and highlight the issues that you feel need to be addressed e.g. research funding, medical education, medical care and support etc. and we will do our best to promote your stories across our networks.
  • Please quote these words in each post you create or story you share: “Real People. Real Disease. Real M.E.” and let's also reach as many people outside our community as we possible can.
  • Please also share our JustGiving campaign page and encourage others to support our vital work.

It doesn’t matter what you do, just so long as you do something. Anything. Let’s make this the biggest and best ME Awareness Week yet! Please?

The ME Association

Please support our vital work

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

If you would like to support our efforts – particularly during ME Awareness Week – and help ensure we can continue to inform, support, advocate and invest in biomedical research, then please donate today.

Just click the image opposite and visit our JustGiving page for one-off donations, to establish a regular payment or to create your own fundraising event.

Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive our exclusive ME Essential magazine.

ME Association Registered Charity Number 801279




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