Campaigners who want more specialist help for children with ME (Myalgic encephalomyelitis) in Wales say the illness is still misunderstood.
An estimated 11,600 people in Wales suffer from ME
In a report, the Welsh Association of ME Support says that there are no specialist paediatric services for young people in Wales.
It also claims that sufferers and their families are often denied help.
The main symptoms of ME are severe tiredness, muscle pain, and difficulty in concentrating.
ME - also known as Chronic Fatigue Syndrome - is recognised as an illness but, as its cause is not known, there is still no cure.
An estimated 11,600 people in Wales suffer from it - around 1200 of those are thought to be children and young people.
The association says the report aims to raise public awareness of the condition - particularly in children.
It criticises a lack of specialist paediatric services and claims children's' rights are being ignored.
It also says that children with ME are being denied a suitable education.
The report is being welcomed by the British Medical Association (BMA).
It says that anything that raises awareness of ME is good.
It also admits that there have been misunderstandings by health professional regarding the illness - which it says can be debilitating for adults and children.
Health Minister Jane Hutt said she was aware of the association's concerns following a meeting with its staff.
"The equality of access to health services is a key priority for the Welsh Assembly Government and I want to ensure that this is the case for ME," said Ms Hutt.
"Following my meeting we agreed for regional workshops to be held to raise the profile of ME amongst health professionals.
She said she had also asked a children's group to look at the issues raised in relation to children to see what we can do to improve the current service.