Monday, March 21, 2005

ME/CFS: "Some may be so bad they need a feeding tube because they haven’t got the energy to chew their food"

21 Mar 2005 report from The Scotsman:

When Lynne Mackay hit her teens, tantrums and days lying in bed followed. But this wasn’t down to normal hormones - it was the onset of a debilitating illness

STROPPY, argumentative and disrespectful, teenager Lynne Mackay’s wayward behaviour was on the verge of seeing her suspended from school.

Once a sporty outdoors type often found racing down ski slopes or competing in the swimming pool, suddenly she barely even bothered to take her PE kit to school. Previously a pupil with a perfect 100 per cent attendance record, there were entire weeks when she was hardly behind her desk.

At home, her sudden tantrums, unpleasant outbursts accompanied by long spells languishing in bed, were testing her family’s patience to the absolute limit too.

"She came very close to being suspended from school," admits mum Nicky, 41, with a sigh. "It seemed she had issues with everything, there were quite a few outbursts and a lot of inappropriate behaviour. It was hard at school and very difficult at home too, it was tough for us all."

Yet today, just two years later, Lynne, of Livesey Terrace, Penicuik, is buckling down to sit eight Standard Grade exams in a few weeks’ time. She regularly attends Air Cadet training and there’s at least another year at Beeslack High School in Penicuik, before she eventually heads for university to study engineering.

The change is remarkable, agrees Nicky. She was suffering from a weakening illness that, despite affecting 25,000 children around the UK, is still widely misunderstood. In fact Lynne, then aged 13, was suffering from ME - Myalgic Encephalopathy - the debilitating condition that leaves sufferers fatigued from just the slightest activity, with aching muscles, pounding headaches and often leaves them feeling frustrated, hopeless and depressed.

Medical experts now agree ME is a bona fide biological condition and not a psychological problem - with around 20,000 adults and 600 children in Scotland affected. Funding has just been announced for a new ME outreach worker in the Capital, whose role will be to provide support throughout the area for young people such as Lynne, linking health, education and social services professionals. The post will be based at Edinburgh’s Royal Hospital for Sick Children.

FOR Lynne, however, it was thanks to a series of self-help techniques, that she can now hope to face each day. "It was a huge relief to everyone - Lynne in particular - when the doctors diagnosed ME," continues mum Nicky. "I think she was starting to believe she was going off her head while others might well have thought she was just playing up."

Lynne, now 15, agrees that her eventual diagnosis - which followed months of extensive tests - lifted a weight from her shoulders.

"I was a normal kid," she says. "I was in the swimming race team, I did lots of dancing ... I was really active, usually doing two activities every night. Then I started to feel ill, there were headaches and earaches, I’d get a sore throat or aching muscles and joints - like a flu feeling. I was mostly staying in bed watching DVDs or speaking to my friends on the internet.

"I kept going to the doctor and they kept saying: ‘It’s a viral infection. Don’t worry’. I had been referred to the Sick Kids for a series of tests aimed at eliminating what could be wrong. All came back negative except for one test for glandular fever."

Glandular fever has been widely linked to ME, also known as chronic fatigue syndrome, for the way it leaves sufferers so weak and listless that they can barely get out of bed.

ME’s existence was only confirmed as recently as early 2002, after medical studies finally confirmed that sufferers were not simply "lazy".

Nicky explains: "I became convinced something was wrong when she took part in a ski race at the Lecht, came home and spent two days afterwards in bed. This wasn’t normal behaviour."

The family spent months challenging doctors’ assumptions that Lynne was simply suffering from a series of viral conditions - their efforts finally justified when she was diagnosed with ME while in her second year at high school.

"But Lynne felt a lot of frustration," adds Nicky. "She was so ill, she couldn’t keep up with her brother, Ian, who is now 13, or her own friends. She struggled to deal with it all and got depressed, then angry, frustrated and cross."

Children as young as five have been confirmed to have the condition, which can last from six months to six years - and longer.

"People learn to manage the condition and their lives by balancing out ‘activity’ with rest and relaxation," explains a spokesman for the Association for Young People with ME (AYME).

Mary-Jane Willows, chief executive of AYME, says sufferers’ symptoms often make the condition difficult for teaching staff and medical workers to spot.

"Some may be so bad they need a feeding tube because they haven’t got the energy to chew their food. Others may be able to continue coping with normal daily activity."

Lynne has her own self-help methods. "You have got to pace yourself to be able to cope with what you want to do," she explains.

And Nicky has nothing but praise for the staff at Beeslack High School who have supported Lynne. "They have been fantastic," she says.

And Lynne is once again a model pupil. "I do get really tired and really tearful," she says. "But I’m managing."

- Contact AYME on 08451 23 2389, or at

A biological mystery

EXPERTS believe cases of ME have been around for centuries - Florence Nightingale is thought to have been a sufferer - although the condition was first confirmed in the 1950s.

After years of controversy, during which some questioned whether ME really existed, it is now seen as a bona fide biological condition and not a psychological problem, often referred to as Chronic Fatigue Syndrome (CFS) or Post Viral Fatigue Syndrome (PVFS).

It often follows a viral infection but no-one has yet established how or why some people develop ME and others don’t.

It also affects sufferers in varying ways. Some become so weak they can barely move while others can continue to live normally.

The symptoms include extreme fatigue, which can strike quickly - sufferers often have to sit or lie down quickly, wherever they are - sleep disturbance, muscular pains, balance problems, poor short-term memory, and sensitivity to food, drugs and chemicals.

Mary-Jane Willows, of AYME, adds: "There is no predictable pattern to ME and symptoms can fluctuate greatly over short periods of time. Patients usually fall into categories of ‘mild’, ‘moderate’ or ‘severe’ ME, depending on how badly they are affected by their symptoms."


Post a Comment

<< Home