Ed: Note Dr Esther Crawley is a medical adviser to AYME (Association of Young People with ME) whose members also took part in this AfME Survey.
“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”
TREATMENT IS MAKING TEENAGER’S ME WORSE
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.”