Facts on the Condition
General description including types, causes, prevalence, signs and symptoms
ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is a complex illness that affects many parts of the body, particularly the nervous, immune and endocrine (hormonal) systems. It can cause marked disruption to all aspects of a child’s life.
Every child is affected differently, depending on their particular combination of symptoms and the overall severity of their condition.
- ME/CFS can cause a vast array of symptoms of varying severity.
- Each child’s combination of symptoms and symptom severity is unique, as is their overall illness severity.
- The symptoms fluctuate in severity, usually from day to day, but sometimes from hour to hour.
- The symptoms may also vary over the course of the illness. For example, flu-like symptoms tend to be more common in the early stages of the illness.
Effect of activity and post-exertional malaise
The symptoms of ME/CFS typically worsen with physical or mental activity. The amount of activity needed to worsen symptoms varies from child to child, and from day to day, but it can be minimal.
In addition, children with ME/CFS take much longer to recover from activity than healthy children, at least a day and often substantially more.
If a child exceeds their ‘activity limits’, they may develop ‘post-exertional malaise or fatigue’ and may even ‘crash’.
Post-exertional fatigue is a complete lack of mental and physical stamina, extreme muscle and cognitive fatigue, muscle pain, and a worsening of the child’s usual symptoms.
If a child over-exerts themselves to the point of ‘post-exertional malaise’, the time needed to recover from the exertion may be extreme, ie weeks or months.
Persistent or recurring unexplained fatigue
The fatigue of ME/CFS is an overwhelming physical and mental exhaustion that does not readily improve with rest. It may be accompanied by debilitating weakness, heaviness, malaise, light-headedness or sleepiness.
It is not like the ‘tiredness’ that healthy people experience after strenuous exercise or a hard day’s work. It is also not the ‘chronic fatigue’ that many people with chronic illnesses experience.
ME/CFS fatigue reduces a child’s activity levels by at least 50% and often more.
Neurological and cognitive problems
The neurological and cognitive symptoms can be extensive, and may include:
- difficulty finding words
- short-term memory and concentration problems
- problems processing and recalling information
- difficulty making decisions
- difficulty reading and writing
- difficulty with mathematics
- intermittent dyslexia
- inability to do more than one task at a time
- poor balance
- muscle weakness
- problems focusing the eyes
- ringing in the ears
- increased sensitivity to light and sound.
Sleep dysfunction, including unrefreshing sleep, excessive sleep and disturbed sleep rhythms. Pain, including headaches, muscle and joint pain that may be widespread and migratory, and widespread tenderness.
Symptoms of autonomic nervous system dysfunction, including light-headedness on standing, nausea, abdominal cramps, diarrhoea and/or constipation, urinary frequency, extreme pallor, palpitation, and breathlessness with exertion.
Symptoms of neuro-endocrine system dysfunction, including fluctuating or low body temperature, feelings of feverishness, episodes of sweating, cold extremities, flushing, anxiety and panic attacks, worsening of symptoms when stressed, and marked changes in weight.
Symptoms of immune system dysfunction, including tender lymph glands, recurrent sore throats, general malaise, flu-like feelings, allergies, and food, chemical and medicinal sensitivities.
ME/CFS most commonly develops after an acute infection, such as a flu-like illness, an upper respiratory infection, glandular fever or Ross River fever.
Less commonly, it may be triggered by exposure to chemicals, heavy metals or environmental pollutants, an injury such as major surgery or a serious accident, immunisation, or an anaesthetic.
ME/CFS may also develop gradually without any identifiable trigger. This insidious onset appears to be the way many children develop the condition.
Although a trigger can sometimes be identified, it is probably not the only factor that leads to the development of ME/CFS. More likely, it is the combined effect of several factors, including a trigger and a genetic predisposition, that results in a child developing ME/CFS.
There is no simple diagnostic test for ME/CFS.
A diagnosis is made only if the child has a specific combination of the symptoms discussed above, and comprehensive tests and investigations have shown that the child does not have any known illness associated with those symptoms.
Who gets ME/CFS?
ME/CFS affects people of all ages, including very young children.
Children tend to develop ME/CFS after the age of 8, and most commonly around the onset of puberty.
The Royal Australasian College of Physicians estimates that ME/CFS affects between 0.2% and 0.7% of the population. Assuming the rate is the same in children, this means that approximately 1100–3750 students in Victorian Government schools suffer from the condition. This equates to 1 child in every 143–488 students (based on 2006 enrolment figures of 537,646 students).
Treatments, including role of specialists, effects of treatments, use of devices, daily routines
At this stage, there is no cure and no universally recognised treatment for ME/CFS.
Treatment aims to improve the child’s health and quality of life by alleviating their symptoms and reducing the severity of their post-exertional malaise as much as possible.
Many people with ME/CFS improve slowly over a period of months or years. Some people recover well, but many remain severely affected by the condition, and some even deteriorate. Less than 10% of people regain their previous level of health.
Relapses and remissions are common.
Individualised treatment plan
It is widely recommended that each child have their own individualised treatment plan drawn up by a medical practitioner in close cooperation with the child and their family.
The plan is tailored to the child’s symptoms, total illness severity, illness history, developmental age and personal circumstances.
It is also flexible enough to accommodate the fluctuations in the child’s symptoms and activity limits, so the plan can be adjusted depending on how the child is feeling at the time.
The treatment plan is designed to help the child and their family deal with the unpredictable relapsing and remitting nature of ME/CFS, so the child can lead as normal a life as possible without aggravating their symptoms.
The plan may include
- pacing (see below)
- coping strategies, including lifestyle and environmental changes, aimed at facilitating healing and removing factors known to aggravate the child’s symptoms
- medicinal treatments to alleviate specific symptoms
- other treatments aimed at treating the possible causes of the condition, such as antibiotics, antiviral medicines and essential fatty acids.
Pacing is the most important tool for managing ME/CFS, especially post-exertional malaise.
Pacing is essentially ‘working’ within the child’s activity limits to prevent any over-exertion that might aggravate their symptoms and precipitate post-exertional malaise. It aims to maximise the child’s activity levels without worsening their illness.
Pacing requires the child
- to consciously schedule and monitor their activity throughout the day to ensure that they keep within their limits for that day
- to intersperse periods of activity with periods of rest
- to adopt energy-saving practices
- to stop mental and physical activity as soon as they start to feel any signs of reaching their activity limit.
There is evidence that living within their activity limits can lead to an improvement in the child’s condition.
Conversely, going beyond their activity limits too often is thought to delay recovery and lead to a long-term worsening of the child’s condition.