‘Poor quality of life for kids with ME’ – Scottish TV, 17 May 2010

From the Scottish TV website, 17 May 2010

Research by Dundee scientists finds majority of youngers with the condition are not well enopugh to attend school full-time.

Youngsters with chronic fatigue syndrome have a much poorer quality of life than their healthy counterparts.

That’s according to research carried out by scientists at the University of Dundee which reveals that the physical well-being of children with the condition is seriously affected and their mental health suffers too.

Little is known about the experience of children with the illness and the study asked a group aged between 10 and 18 years old, and their parents, to complete a standardised child health questionnaire.  

Their responses were compared to carefully selected peers and those with other illnesses and children with ME scored a great deal lower in ten out of the 14 areas covered.  

The findings, published in the US journal Paediatrics, show that young people with ME reported low levels of physical functioning and high levels of bodily pain and discomfort.  

As a result, the illness was found to impact hugely upon schooling. Only one child who took part was well enough to attend school full-time, whilst nearly 50% attended part-time and just over 30% had to receive tuition at home.

Youngsters were found too to be limited socially.

The effect of the child’s health on family activities was much greater than that of the average youngster.

Low self-esteem was also reported.

Overall, the quality of life of those with the condition was also worse than those of children with type 1 diabetes or asthma, as found in previous studies.  

The physical symptoms, researchers concluded, can also be as least as disabling as multiple sclerosis and other chronic conditions and 68% said their condition developed quickly. Nearly 90% started to become unwell with ME following an infection.

However more than half felt their symptoms were improving, with the illness lasting for an average of around four years.

Dr Gwen Kennedy, who carried out the study said: “We hope our work will give further scientific credibility to a condition that is often dismissed.  It is clearly extremely debilitating and our research, substantiated by parents, gives a valuable insight, demonstrating that the lives of children with ME are significantly impaired.”

Dr Neil Abbot, of ME Research UK, one of the charities which funded the study added:  “Childhood, as we know, is a particularly crucial time of life when disruption to education and family can have severe and long-term consequences.  That’s why it’s important that ME is recognised, diagnosed and understood in children – only then can they receive the necessary support.”

Jane Colby, Executive Director of the Young ME Sufferers (Tymes) Trust added: “As a former head teacher and severe ME sufferer, I see too many children whose ME is not taken seriously. I would welcome more research into how children relapse because the education system doesn’t take proper account of their illness.”

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