Support for Parents of Children with

 Chronic Fatigue Syndrome

SPCCF


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    Musculoskeletal

 -exercise intolerance

 -post exertional malaise

 -muscle and/or joint pain

 -pallor

 -flushing

 -icy extremities, poor body temperature control

 -weakness

       -partial paralysis  

    Gastrointestinal

 -nausea, loss of appetite

 -diarrhoea

 -abdominal pain

 -reflux

 -food intolerance

       -marked weight change (loss or gain)

      -prone to classroom infections eg. colds and flu


    Neurological

-dizziness

-headache/migraine

-noise and light sensitivity

-cognition dysfunction (numerical, word recall,

 short-term memory, concentration)

-visual disturbances (blurring, eye pain)

-sleep disturbance

-irritability, mood swings, distress, despair or

 depression (frequently parallel with

 disease fluctuation).

-abrupt episodes of anxiety/panic


    Generalised Symptoms

-cardiac irregularities with associated chest pain

-urinary frequency and burning

-shortness of breath and breathing difficulties

-chemical sensitivities


What is Chronic Fatigue Syndrome?


There is no definitive test that diagnoses Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME) but routine tests, including blood tests, are often carried out to exclude any other possible causes of the tiredness as many other medical conditions can cause fatigue. If all test results are negative, a diagnosis of CFS/ME is often made by a process of elimination and by taking a recording of medical, school, social activity and family history.


Between two and six young people in every 1,000 have CFS and it‘s probably the most common medical reason for absence from school.





Some children with CFS can look quite well which can lead to misunderstanding of the child's true disability and as the symptoms can vary from day to day or even hour to hour, suspicion can arise about the seriousness of the condition. These children do not only have to cope with their illness but also with disbelief from some teachers, peers and at times, even family members.

Many children with CFS get very depressed because of their constant fatigue and isolate themselves from their peers, the peers might sometimes translate this into a ‘can’t be bothered’ and stop contacting their sick friend. This can spiral the child into a deeper depression and low self-esteem, it is therefore essential that these children have a supportive school community with understanding and flexibility.


Symptoms of Chronic Fatigue Syndrome