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Answer to tired teen mystery
Saturday 3 December 2011
When children hit adolescence, it's not unusual for parents to have trouble getting them out of bed and off to school. Nor is it unusual for teenagers to undergo significant emotional changes and to complain of joint pain and sleep disturbances.
For some young people though, "typical" teenage tiredness and growing pains can morph into something far more serious, leading to debilitating illness, social isolation and months or even years off school.
These are the teens diagnosed with chronic fatigue syndrome, a complex and often misunderstood condition most commonly associated with adults. The symptoms are identical - chronic and persistent exhaustion, joint pain, sleep disturbances, headaches, poor concentration and a raft of other symptoms - leaving some sufferers bedridden for weeks or months.
However, while adults may have the condition for years or even indefinitely, adolescents make a complete recovery.
"It may take months or even a few years but the outlook for adolescents is excellent," said paediatrician Donald Payne, head of Princess Margaret Hospital's department of paediatric and adolescent medicine. "We see a lot of people like this and we get them all better." Dr Payne said the main concern was the impact on teens' education and development.
"One of the major problems they get is that they're not going to school," he said. "Prolonged absence from school because of fatigue is a major problem and, if it isn't addressed, can have lots of consequences for their future."
Teens with CFS, estimated at between 0.2 and 2 per cent of the population, can also become isolated from their peers. Many stop going out or pursuing interests, becoming heavily dependent on their parents at a time when they should be exploring their independence.
"If you think of a teenager - what are they trying to do," Dr Payne said. "They're trying to get an education, find who they are, get increasing independence from their parents and develop an adult identity.
"There's a very big focus on the whole separation from immediate family and identifying with your peers and just moving from childhood to adulthood. If you have a chronic condition like chronic fatigue syndrome, you miss out on that normal progression through adolescence."
While the hospital does not have a dedicated CFS unit, Dr Payne's department sees a steady stream of the most severely affected teens and has developed a team-based program to help them recover physically, mentally and socially.
About 15 cases a year are admitted for a two-week "rehabilitation admission", when they are assessed by specialists including a paediatrician, physiotherapist or physical trainer, occupational therapist, psychologist, dietician, school teacher and school liaison officer.
Once other potential causes for persistent tiredness have been ruled out, the team devises a program to support physical recovery - often through graded exercise and other routines - and works on reconnecting patients with their school and social lives.
A liaison officer works closely with the adolescent's school to modify timetables and workloads, and teens are taught to recognise their limits and to pace themselves to avoid crashing.
At the same time, their mental health is assessed, with the team looking out for the depression, anxiety and loss of confidence which can often accompany CFS.
"The treatment is really holistic and involves approaching every aspect of that young person's life," Dr Payne said. "Recently, we've had a few patients come in who have definitely got CFS but the primary issue at the moment for them seems to be more loss of self-confidence and anxiety about their social situation, and about going back to school.
"They go from people who have been usually quite bubbly, energetic and active, to almost shadows of themselves because they have just lost that spark and that confidence they need to get back into life.
"So we have a real focus on not just the condition itself but also on how is this affecting this young person in their journey through adolescence and what can we do? We treat the symptoms but also manage those other bits and pieces - integration back with their friends, involvement in music, sports clubs, that sort of thing."
Dr Payne said families were often at their wit's end by the time they were referred to PMH, having bounced from one health provider to another - including GPs, paediatricians, cardiologists, rheumatologists and alternative practitioners - in a frustrating hunt for answers.
Although there is no quick fix, many feel deeply relieved and validated to have a proper diagnosis.
"It's very important to acknowledge that this is a severe and debilitating condition which is well recognised," Dr Payne said.
He said that while CFS had a stigma, there was no doubt about its validity as a medical diagnosis and its impact on sufferers.
"It's a very real thing," he said. "The effects on a young person's health, wellbeing, lifestyle are as significant as any other chronic illness in adolescence. Quality of life for a young person with chronic fatigue syndrome can be absolutely awful."
It's not yet known what causes CFS, although it is believed to be triggered by viral infections such as tonsillitis or glandular fever.
It's an emotive topic, with continuing controversy over just what treatments do and don't work.
Families looking for resources and support can contact the ME/CFS Society of WA on 9346 7477 or visit mecfswa.org.au.
The full – and very lengthy – article, with comments, originally appeared here.
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