ME/CFS IN CHILDREN - Our daughter (a thread)

As some of you may know, our wonderful 8 year old daughter Hayley was diagnosed with ME (Myalgic Encephalomyelitis) just a few weeks ago, after having symptoms for approximately 1 year. This is the same condition my wife

Sarah has lived with for 7 years. They now know that genes play a huge role in this illness, I was not aware that it could be hereditary. There many cases of ME where there is no history of the condition in the family. I wanted to share the common symptoms...

(which in children have slight differences to adults), as this illness is massively under diagnosed. Awareness of this condition is the only thing which will lead to prompt diagnosis.

• Complaining of being tired, poor sleep (difficulty getting to sleep, restless during sleep), sore throats, headaches and muscle pains in legs and arms. Visibly lethargic in evenings
.
• Stomach issues, pain when eating, nausea, loss of appetite intermittently

• Difficulty concentrating - seen as a deterioration in school performance & slow progress on homework
.
• Sick often due to poorer immune system

• Irritability, sensitivity to noise, light and also chemicals & creams, that previously caused no issue.

Key Symptom: PEM - Post Exertional Malaise. This is when a child has a busy day or busy few days and will be exhausted for days or weeks after, all symptoms will be worse during this time.

The silver lining is that my wife was able to recognise the signs & push the doctors to address it. There are many cases of children all over this country where GPs with no knowledge or training in ME, gave incorrect diagnosis to families, explaining it as a long acting virus.

Unlike adults, children have a much better chance of recovery if treated correctly, most recover within 3 years. Children who received an incorrect diagnosis continue with sports activities and attend school full time. This can be detrimental to their health

Keep in mind ME can develop gradually, but often develops following a severe illness, in children, we see it often after glandular fever. In some cases it develops after intense periods of sports training.

#MyalgicE #ME #MECFS