The debilitating chronic fatigue and post-exertional malaise of ME/CFS means that children with ME/CFS have little energy, are chronically tired and needs lots of rest. As a result, their activity levels are reduced by at least 50% and often more.
In the early stages of the illness, children with ME/CFS need lots of sleep. It is not uncommon for them to spend 18 or more hours in bed sleeping, and the rest of the day lying on the couch.
Even ‘minor’ activities, such as climbing stairs, walking, sitting upright for long periods, long conversations and mental activity, can lead to exhaustion in a child with ME/CFS.
Once exhausted, a child with ME/CFS often finds it difficult to think and concentrate, so they may have difficulty following conversations or understanding simple instructions.
Over time, children with ME/CFS may become better at knowing how much they can do without over-exerting themselves. However, the desire to be ‘a normal kid’ when they feel better means that they often ‘overdo it’. If they push themselves too far beyond their limits, they may take weeks or months to recover.
The unpredictable day-to-day and hour-to-hour fluctuations in symptoms add to the frustrations of living with ME/CFS.
The fluctuations also make it difficult for people to appreciate how sick the child really is, because they usually only see the child when they are ‘out and about’ on their good days. They rarely see them when they are confined to bed on their bad days.
Having to deal with the scepticism that results from people’s lack of understanding of ME/CFS and only seeing them when they are at their best can markedly undermine the child’s self esteem and general well-being.
The restrictions imposed by ME/CFS mean that the child misses out on all aspects of life, ie family, social and recreational life as well as school life. This can have a devastating impact on their social development.
Effects on those close to the child / young person
Having a sick child in the family is stressful and frustrating for everyone, particularly when the illness has no cure and is as debilitating as ME/CFS can be.
Siblings may become resentful if they feel they are being excluded and deprived as a result of the attention given to the sick child.
Managing a child with ME/CFS is a family affair in which parents usually play the primary steering role, even if the child is older.
The steering role involves not only managing the child’s illness, but also managing other people’s reactions to their illness, and the mistrust and scepticism often directed at ME/CFS.
“In their shoes” – stories from children / young people with the condition
Going home I didn’t feel quite right. Something was wrong. Almost overnight my sleep patterns went haywire. The muscle fatigue which had plagued me for so many years returned. I had headaches and pains, especially in my legs. I’d taken a massive step backwards and all the hard work and progress I’d made in the last 4 months was lost. Lessons learned the hard way – never underestimate ME/CFS.”
Alistair Lynch – AFL Footballer (From his book, Taking Nothing for Granted)
Young people’s experiences of ME/CFS
What do you think is the worst thing about having ME/CFS? “There is a whole period of grief and loss that you go through because, effectively, you’ve lost part of your life; I think that is a big thing to deal with.”
What do you miss? “I miss being a teenager. I miss being able to go to school and I miss being able to dance; I miss being the person who was confident and ran around doing everything and was always smiling.” Sacha, Age 17
“I have found the isolation that is associated with months and even years of being housebound and being unable to enjoy social contact with other teenagers particularly trying.”
“…Of great reassurance to me when unable to do school work was the advice of my school headmistress who said, ‘Education does not only occur from nine ‘til three between the walls of a classroom.” Alison, Age 19