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ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.


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Wirral teenager tells of her ME struggle to mark Awareness Week

Friday 6 May 2011

From UK newspaper Wirral News:


Wirral NewsWirral teenager tells of her ME struggle to mark Awareness Week

May 4 2011
by Jane Clare, Heswall News

DO YOU EVER find it hard getting up in the morning? Find it hard getting dressed? Making breakfast? Well I find it almost impossible.

I have ME/chronic fatigue syndrome, an illness which affects around 250,000 people in the UK and many of these people are children.

ME is a real illness that affects people in many different ways.

Some people may still be able to go to work or school and have a reasonably good life.

Others are more serious, being housebound, bed-bound and having to use a wheelchair to mobilise.

There’s a range of symptoms including extreme tiredness, often to the point of collapse, muscle and joint pain, poor short- and medium-term memory, nausea and anxiety.

These are just a few of the symptoms you can experience when you have ME. A lot of people who suffer with ME don’t get taken seriously, and people don’t believe their illness is real.

But it is.

We not only have to deal with our illness, but we also have to fight for people to believe us.

My name is Sophie Lees and I live in Heswall, Wirral.

I have been ill for two and a half years. I’m only 15 and like many other teens with ME, my teenage years have been taken away from me.

I had glandular fever in 2009 which was then followed by ME in 2010.

My ME wasn’t that bad, as I could walk around, go into school part of the time and see my friends.

But, three months ago I took a turn for the worse. I woke up one Sunday morning not being able to move. This day changed my life to what I know it as today.

All my dignity was taken away, as I now had to crawl everywhere because I couldn’t support my own body.

I had to stop going to school, stop going out with friends, stop nearly everything that I used to enjoy.

The thing that frustrated me was that it wasn’t a choice I had made.

I hadn’t chosen to become totally reliant on my mum and family, or to stop going to school and seeing my friends. My body made this decision without informing me.

It couldn’t cope anymore and had given up.

I was used to not being in school every day, but now I can’t go to school at all. I was in Year 11 at Wirral Grammar School for Girls and it was a pretty big year for me, doing all my GCSEs in summer. But that’s all been put on hold.

I’m now taking a year out, having some tutors at home for half an hour an day as this is all I can manage.

I hope to do Year 11 again next year. My school has been great and are supporting me every step of the way.

My friends try and understand about why I’m not in school. But it’s hard for a healthy teenager to contemplate being so ill that you have to use a wheelchair to get around.

Or that you are so ill that you can’t go to a party or the cinema.

You become totally isolated, as everyone is getting on with their lives but you’re stuck the same.

I don’t lead a normal life like other teenagers do. But there are other people like me.

There’s a charity called AYME – Association of Young People with ME – which helps young people with ME meet other sufferers of ME.

I have made some amazing friends through this website, and without them I wouldn’t be where I am today.

They know exactly how I feel when I say I can’t move, when I say it feels like all the energy has been sucked out of me. We help each get though the hard times and laugh through the good ones. We help each other stay strong.

There’s a reason why I’m writing this.

Its ME Awareness Week from May 8-14, and all of us who have ME are trying to raise as much awareness as we possibly can.

By people not believing that ME is real, it’s making our illness worse.

When you’re ill every day you learn to smile, you learn to laugh even when you feel like you’re dying inside.

Just because we seem happy doesn’t mean we’re not ill!

So in aid of ME Awareness Week, if you know someone with ME just drop them a text and tell them you’re there.

It will make all the difference to their life, knowing that people haven’t forgotten about them, and that people care.

For more information about ME log on to


The above originally appeared here.



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