Elene Naeverlid’s rituximab story in Chat magazine, 15 December 2011

December 20, 2011

From ‘Chat' magazine: Patient Casebook, 15 December 2011

‘I got my life back at last –
Now I can't sleep, knowing I'll be able to celebrate for the first time in years!'
by Elene Naeverlid, 26, from Bergen, Norway

As my family pulled crackers and clinked glasses, I stifled a yawn. Bah, humbug, right? Wrong!

I desperately wanted to enjoy Christmas, but could barely stay awake long enough to finish a mince pie.

It'd all started six years earlier, in March 2001.

Everyone of my muscles aches and I'd a sore throat. ‘I think I've got the flu,' I moaned to my mum Kari. Worried, she raced me to the doctor.

‘It's just a virus,' he said. But when I still felt rotten a couple of months later, Mum took me back.

I was referred to hospital for blood tests. ‘You've got ME/CFS, or Chronic Fatigue Syndrome,' they explained. ‘The virus probably triggered it.'

Did that mean I'd have to go to bed earlier for a while? ‘Most people feel tired occasionally. ME sufferers are permanently wiped out,' I was told.

What? Just 16, I'd shopping to do, parties to go to.

‘I'm afraid there's no cure. You'll have to work your life around your body's need to rest,' the doctor added.

It sounded awful, but unfortunately it was true.

I ached all over, was always burnt out, and I couldn't find the energy to concentrate on anything. By the end of the summer, I could rarely manage two classes a week at school.

My parents bought me a dog, thinking the exercise and fresh air would help. But nothing ever worked.

My life was put on hold. All I could manage to do was sit in a chair or lie in bed.

Sometimes I'd sleep for 18 hours on the trot, and would still wake up feeling drained.

It can't go on like this,' I sobbed to Mum in January 2007, as yet another Christmas came and went.

Then, 11 months later, I was offered a lifeline…

‘Doctors have discovered that rituximab, used to treat certain cancers, eases ME symptoms,' my doctor explained. ‘Are you interested in a pilot study?'

‘I-I'd be a guinea pig?' I gulped.

Then 22, if I wanted my life back what choice did I have?

So, after a string of tests, I had my first intravenous dose. Docs kept a close eye on me.

But, instead of making a difference, nothing changed.

Until five months later, May 2008…

‘Morning,' I chirped, as my parent's mouths fell open. ‘I'm just taking the dog for a walk.'

But sadly my excitement was only to be short-lived.

Over the following two years, I suffered a series of relapses as docs tracks how my body reacted to the drug.

Then, in February this year, they nailed it and I finally got my life back.

My parents could barely keep track of me as I made up for lost time catching up with my friends. Plus, I passed my school exams at last.

And, as I lay in bed a few weeks ago, it felt like all my Christmases had come at once.

Presents. Tick. Parties. Booked in. Energy to plough through the Christmas dinner with all the trimmings. Plenty!

Who knows, I might even be able to party for 18 hours this 25 December.

• For more info, visit www.meassociation.org.uk

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