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TREATMENT IS MAKING TEENAGER'S ME WORSE
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BY ALEISHA SCOTT EPNEWS
07:00 - 16 May 2008
A young ME sufferer says a treatment recommended by the Government makes her
feel worse, not better.
Helen Wood, 18, from Thornbury, is not alone. A survey by Action for ME
revealed a third of people with the condition who had a treatment called
graded exercise therapy, also reported it made them worse.
ME, also known as chronic fatigue syndrome, causes a range of symptoms
including muscle pain, tiredness, headaches, sleep disturbances and
difficulties with concentration.
The charity, which released the figures as part of ME Awareness Week, also
said GPs were still largely unsupportive towards patients who had ME.
Helen was diagnosed with ME in 2005 but is thought to have had it for at
least 10 years.
The condition makes her immune system weak and vulnerable to infection and
she said she was constantly exhausted and suffered from aches and pains.
She has not been to school since April 2004 and despite having home
education, has not been able to finish her GCSEs because of the illness.
She sees a psychologist at Bristol's Frenchay Hospital and also a dietician,
but is rationed to just one appointment a month with her GP.
Her graded exercise therapy involves her walking up and down the stairs or
getting in and out of the bath - easy enough for most people but not for
Helen.
"I have been told to walk up and down the stairs a few times a day to get my
muscles working but sometimes it makes me feel bad and sometimes I feel
worse afterwards," she said.
"I'm not able to do much at all and I feel really achy all the time and
tired, I would really like to go out more but I just can't manage it."
She added: "Talking helps the most because I can get things off my chest.
"But I would like people to understand ME better, I don't think that doctors
do at all because they think it is all in the mind but it's not, it's a
physical thing."
The National Institute of Clinical Excellence (Nice) guidelines tell doctors
to develop a personal plan for each of their patients, recommending
cognitive behavioural therapy and graded exercise therapy as treatments.
Graded exercise therapy encourages patients to gradually increase physical
exercise or daily tasks irrespective of how they feel.
But while Action for ME accepted the treatment could help some, it said that
34 per cent of ME patients in its survey said graded exercise therapy had
made their ME worse.
However Dr Esther Crawley, an ME specialist based at the Royal National
Hospital for Rheumatic Diseases in Bath and who helped to draw up the Nice
guidelines, dismissed the findings, saying the survey was unreliable.
"This survey is based on a biased sample of people who have had an issue
with treatment and we cannot deduce who had graded exercise therapy
delivered by a specialist, as Nice recommends," she said.
"Delivered by a specialist, it actually reduces activity to a stable level
and then to a small amount each day. We have had above 85 per cent of people
who said they have been happy with their treatment.
"We do not say to people they have to have the therapy, we give them a range
of options and they choose."
