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International Awareness Day

for  Chronic Immunological and Neurological Diseases (CIND)
ME • ES/MCS  • FM  • GWI • LYME • CFS
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Guest Blog by Greg Crowhurst – Stonebird: Breaking the Silence

Guest Blog by Greg Crowhurst – Stonebird: Breaking the Silence

by | Jul 25, 2015 | May12

The following is a guest blog by Greg Crowhurst about Severe ME. Note August 8th is Severe ME Day.

“I broke the silence on October 12, 2006; that day I believe we were the first to raise awareness on YouTube of the incredibly serious nature of Severe ME.

These days my wife is infinitely more ill than she was then. I am still speaking out, Stonebird, is my platform. That video was the beginning.

Facebook had just been invented, the first tweet had just been sent, there was no such thing as an iPhone, but there were over 100 million websites.

And a pressing need for a ground-breaking Severe ME site.

Most ME websites back then and still today, do not seem to take into account the complex visual, movement, colour and cognitive difficulties, that people with ME can experience. They are often way too wordy or have fast moving or flashing images, painful garish colours and masses of complex information far too long and detailed to follow or hard to find. Site navigation is often dire.

I wanted to build an ME-friendly website.

But first, I had to learn web design!! I took a book out of the library, it seemed hopelessly complicated and impossible to understand.

So, there I was trying to figure out how to build Stonebird. As you can see, eventually I succeeded!

www.stonebird.co.uk

As an unwaged, full time carer, it was not easy, but I managed to get a carer grant to learn how to write HTML and CSS, then built Stonebird as part of the course (gaining a distinction!). I was hooked by then and with another grant under my belt, spent a further year learning how to code in JavaScript, so I could add interactivity to websites.

These days I study web design at every opportunity.

My beloved wife is diagnosed with a very severe form of Myalgic Encephalomyelitis that is nothing like the fatigue focused, minimized illness that you will see misrepresented as ME in general today; the idea for Stonebird came from her.

I had literally bought her a stone bird, in a local craft shop to look at when she was most ill and perhaps hold or touch for comfort. She loved its shape and feel, the coolness of the stone, the beauty of the curves. It reminded her of herself, trapped inside her body, but still there was a beauty, a spirit, that is indomitable and intrinsically of value, even when nothing is physically possible. Still your heart can shine.

A passionate belief in the value of each and every person, no matter how ill, how battered, how tormented, how hidden and physically unable, because of ME, was the genesis of Stonebird and is the light that we shine, the battered flag that we hold aloft still.

These days Stonebird is respected around the world, as a valuable resource for people with Severe ME and their carers. Recently I had to update it; Google are heavily pushing for websites to be fully responsive on all web platforms, mobile and desktop; what a steep learning curve!

Web design keeps you on your toes, in terms of continual learning, as does caring for someone with Severe ME. I find I constantly have to grow in awareness of the profound and complex needs of my wife and my responses. I cannot afford to ever get stuck.

After over two decades of caring for Linda, I was thrilled to be shortlisted by the British Journal of Nursing and was one of three finalists for the Nurse of the Year Award 2015. As my gift to people with Severe ME for their support, I created and published a free App, on caring for people with Severe ME, The Moment Approach; it aims to raise awareness of the vital need to understand the illness and the devastating hypersensitivities.

You have to keep dreaming. I wondered could I publish a book unlike any other on ME, illustrate it, format it as a manual, make it carer-centred, make it self-reflective, make it informative, interesting to pick-up and above all make it inspiring ?? After immense effort, Severe ME: Notes for Carers has just been released. I hope it helps.

http://stonebird.co.uk/Notes/

I vowed long ago I will raise awareness of the awful suffering and isolation of Severe ME, shout it from the rooftops. So I broke the silence, came up fighting.”

Guest Blog by Rosalynde Lemarchand – M.E. Groundhog Day

Guest Blog by Rosalynde Lemarchand – M.E. Groundhog Day

by | May 28, 2015 | May12

Well here we are again.

It’s May 12th – International M.E./CFS & FM Awareness Day

The idea originated with Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases).

Mr. Hennessy was based in the US but understood that it needed to be an International event. He designated May 12 as the International Awareness Day for the spectrum of illnesses he called Chronic Immunological and Neurological Diseases (CIND).

May 12 was chosen as it coincided with the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale became chronically ill in her mid-thirties with a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)-like illness. She was often bedridden for the last 50 years of her life. Despite suffering from a debilitating illness, she managed to found the world’s first School of Nursing.

A few years ago I wrote a poem for 12th May and it seemed appropriate to call it M.E. Groundhog Day (after the film of that name where the same day is repeated over and over again).

It can feel as if we are stuck in the same way. In order for things to change we have to reexamine our lives and our priorities. In order for things to change we need to keep raising awareness and understanding.

Once again I’m reflecting on whether anything has changed since last year.

Sadly there are still too many in the medical profession who know nothing or very little about M.E.

Sadly too many are struggling on their own with this illness and receive little or no help and support.

The most severely affected are left in a living hell.

Sadly there are many who are still disbelieved and abandoned by family or by friends.

Sadly too many have to fight for benefits and to prove that they are genuinely and seriously ill.

Sadly still not enough money is invested into research of M.E.

Sadly more time, money and effort seems to be wasted on the appropriate name which only causes more confusion and conflict.

However there are some glimmers of hope with new studies taking place and some studies that have recently published results providing further evidence that M.E. is a real physical illness.

At least we now have inter-active social sites on the internet which help provide information, help, support, and a stage to raise awareness and understanding as well as to promote campaigns.

Personally I have been trying to raise awareness and understanding by writing poetry. Through my poems I have been able to express not only how I feel but others as well. My poems are a window on what it’s like to live with M.E.

You can find more about me and my poems in my blog here

I have pledged that in May all the sales of my book will go to Invest in Me

Additionally, in 2015 I’m well on my way onto completing book number two of poems about M.E.

There is still so much I want and need to write about.

So what are you going to do this year?

Perhaps you could share my poems and my blogs to help others to understand.

Thank you,
Ros Lemarchand

Guest Blog by Sally Burch: Why Campaign for Awareness?

Guest Blog by Sally Burch: Why Campaign for Awareness?

by | May 14, 2015 | May12

“Why?” is a question we often ask, because it is human nature to seek answers. However, despite this natural human curiosity, awareness-raising is still not an easy task.

It seems that as our knowledge increases, so we each have less inclination to explore deeper dilemmas and to question our own established views. Consequently, our views become simplified, and moulded to the mood of the time.

Awareness-raising campaigns therefore need to challenge each of us to revisit our perceptions of a particular situation. It’s never an easy task, but popular opinion is not static, so it can be done. And the more people who participate, the greater the momentum for change.

The 12th of May is “Awareness Day” for a several much maligned and deeply misunderstood conditions. Having Fibromyalgia, Lyme Disease, Multiple Chemical Sensitivity or Myalgic Encephalomyelitis does not induce much public sympathy, for the simple reason – that the public do not understand the severity of the conditions.

So what can we do to change that? We can of course spread awareness at any time of year, but having a particular day makes it easier to strongly make a point. It’s the difference between a dripping tap and a river bursting its banks. Way more notice is taken of the latter.

So every year advocates, charities, patients, carers, and friends start creating a wave of enthusiasm to do something towards changing public perception.

It’s somewhat ironic that prior to any good Awareness Day, there must be a strong campaign to make people AWARE of the Awareness Day! So in the weeks coming up to May 12th there are already campaigners promoting their activities and encouraging others to join in.

And this is where everyone else makes such a difference, because more voices make more noise, and the bigger the noise we generate on the day the more notice we get for our case. We all need to believe that by doing what we do, all at once and with enthusiasm, that we will eventually get our cause heard and things changed!

Yet, there is another spin-off, because the collaboration undertaken during these events brings people together – not just united by a common cause – but also united by making lasting friendships and relationships that will help to sustain each one of us throughout the rest of the year.

In this way awareness raising becomes much more than shouting our case in isolation – it gathers momentum precisely because it can also be fun in itself! Whether it be having a Blue Tea Party, dressing as a Princess, lighting up a landmark, or writing a short blog, there are so many ways to make a difference.

So check out the May12th.org Awareness page here, and see if there something that makes you think “I could do that!” Then connect with others doing the same, and know that even though each action is small, collectively our voices are getting louder!

Sally K Burch

We thank Sally for being our 1st Guest blogger.  You can read her blogs here

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