ME/CFS/FM SUPPORT ASSOCIATION QLD INC. - Queensland, Australia
Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), has been described extensively in adults, but children with this illness have received less attention. However, the disorder commonly affects children. It is a complex illness characterised by incapacitating fatigue, neurological problems and a constellation of symptoms that can resemble many other disorders (including Glandular Fever, Childhood Migraine Syndrome and Lyme Disease).
Fibromyalgia (FM) is a common rheumatological condition characterised by constant widespread pain plus symmetrically displayed "tender points" in muscles, tendons and bony prominences. ME/CFS in children and Primary Juvenile Fibromyalgia Syndrome appear to be overlapping clinical entities indistinguishable by current diagnostic criteria.
Because of special problems involving child development, the diagnosis of ME/CFS in children is made by identifying a characteristic pattern of symptoms and excluding other possible causes for these symptoms. Teenagers are more likely to fit the definition published by the Centers for Disease Control (see "Understanding ME/CFS", a paper adapted by TSG from a CFIDS Association of America publication).
In general, the symptoms are similar to those exhibited by adults: substantial impairment of short-term memory or concentration, sore throat, tender lymph nodes, muscle pain, multi-joint pain, headaches, unrefreshing sleep and fatigue lasting more than 24 hours following exertion. ME/CFS is diagnosed when these symptoms persist for months.
A prominent difference is that children have a greater variation of symptoms. The change in the symptoms and their intensity and the relapsing and remitting nature of this illness are primary reasons for frequent misdiagnosis as a "behavioural" or "emotional" disorder, and in particular, as school phobia.
Another difference exists in the recognition of neurological symptoms. Adults have a clear perception of their abilities so memory loss and inability to concentrate are easily recognised. Because children are less sure of their abilities, these symptoms often manifest as progressive school difficulties. Dizziness and light-headedness are very common symptoms in children. Seizure disorder, particularly atypical petit mal seizure, is more commonly found in children.
Overall, the cognitive symptoms in children are less debilitating than in adults, because children adjust to them better. But, because these symptoms occur during a period of rapid learning and intellectual development, the long-term difficulties generated by the cognitive disorder may be greater in children.
The majority of children, particularly adolescents, have an acute onset of symptoms that marks the beginning of ME/CFS. An acute onset is characterised by the sudden appearance of symptoms within a few days to weeks, usually a "flu-like" or "glandular fever-like" illness in a child who had previously been entirely well.
Children who experience an acute onset can clearly describe their symptoms, such as the degree of fatigue or impairment and cognitive difficulties in comparison to their pre-illness state. These children may accumulate a bewildering array of diagnoses from their paediatrician, including childhood migraine syndrome, Crohn's disease, atypical epilepsy, school phobia, attention deficit disorder, ankylosing spondylitis, rheumatoid arthritis, chronic rheumatic fever, functional abdominal pain, food allergy syndrome and others.
The gradual presentation of ME/CFS seems to occur more often in young children (pre-adolescent). The appearance of symptoms gradually over several months or longer, or mild symptoms suggestive of ME/CFS (frequent sore throats, headaches or joint pains, relative inactivity, requiring more sleep than other children of the same age) prior to an acute episode would be defined as a gradual or insidious onset.
Children who experience a gradual onset are often not able to articulate the precise degree of fatigue, nor are they able to describe cognitive difficulties because they have not experienced a time period without them. Interestingly, these children frequently do not perceive themselves as being ill, most likely because they have been growing up with the symptoms and have no clear references to normal health.
After developing ME/CFS, a child must often work harder to maintain the same grades he or she was earning prior to becoming ill. In many cases, grades drop because of the physical and cognitive impairments caused by ME/CFS. A reduced school schedule supplemented by home tutoring can lead to a positive educational experience for the child.
The learning problems of children with acute onset can be traced to the beginning of the illness because learning patterns have most often been established prior to the onset of illness.
Social and behavioural patterns can also be compared to their pre-illness state. Children with acute onset may lose less time from school because the fatigue is perceived to be less severe, but the student is still not functioning at full capacity.
Cognitive problems such as loss of ability to concentrate, difficulties in short-term memory and word-finding ability and difficulties in visual/spatial perception are more likely to go unrecognised in a child with gradual onset.
These children are considered to be complainers and are not perceived as being sick. Therefore the cognitive deficits are frequently not noticed except by very perceptive educators. Some very bright children are able to maintain good grades by developing "tricks" to help them get around certain cognitive difficulties.
There appears to be considerable variation in the degree of cognitive difficulties experienced by children with ME/CFS, although specific studies to look at this area have not yet been undertaken.
Some children (and adults) do recover from ME/CFS. However, there is no standard duration of the illness. Some people get better over a period of a few years, while others cycle through periods of illness and improved heatlh. And still others report a progressive worsening of symptoms.
The first step in properly treating children with ME/CFS is making the diagnosis. There is a great body of knowledge available about how children cope with chronic illness, and if the diagnosis is established, it will help them to cope with the illness in an emotionally healthier way.
Failure to establish the diagnosis and lack of cooperation between professionals may lead to inaccurate impressions that the child is malingering and subsequent risk of isolation, insecurity, sense of failure, family stress and even legal action against the family by school authorities.
Further, an unresolved diagnosis may leave the child with uncertainty as to whether the symptoms he or she is experiencing are "all in the mind" or due to an organic illness. Otherwise, the treatment for children varies little from that for adults and includes:
There are many medications which may help with specific symptoms, such as iboprofen for muscle discomfort and other pain and mild sleep medications.
New treatments for ME/CFS are currently under investigation that may not only improve symptoms, but also affect the underlying condition.
Above all, believe your child. Children with ME/CFS need to be taken seriously by parents, doctors, teachers and others, and not to be written off as manipulative, lazy, emotionally disturbed or school phobic.
Parents must learn to listen to and accept what their children with ME/CFS communicate about what they can and cannot do. Acknowledging and validating their complaints relieves the pressure they feel to prove they are really sick. And they need advocates, people who are willing to fight for them, to educate the public, health care providers and educators about the physical and cognitive challenges faced by children with ME/CFS.
Child, Youth & Family Health Centre, and Developmental Assessment Clinic, Unara Health Village, Toowoomba Base Hospital Phone: (07) 4631 6812
This information has been taken from the "ME/CFS/FM and CHILDREN" brochure which was adapted for Australia after being produced and distributed by the CFIDS Assn. of America Inc., PO Box 220398 Charlotte NC, 28222-0398, Phone 800 442 3437, and was edited by Charles Lapp MD FAAP, medical consultant to the CFIDS Assn of America Inc.
The information contained herein is intended to help those with ME/CFS and their carers make informed decisions about their health. For medical advice please contact your doctor.