Child abuse nightmare of M.E. families

Some children with M.E. are suspected of being abused

M.E. has been recognised as a genuine condition in a report compiled for England's Chief Medical Officer.

Children can suffer from M.E, or chronic fatigue syndrome from as young as five, but they face specific challenges in coping with CFS/ME - and getting the treatment they need.

BBC News Online's Caroline Ryan looks at the issues faced by families of children with CFS/ME.

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Families with children suffering from CFS/ME have faced the nighmare of being wrongly accused of child abuse in extreme examples of misdiagnosis of the condition.

Over the last four years, there have been 12 cases where care proceedings have been initiated, according to the charity Action for M.E.

But all 12 were dropped once experts in CFS/ME explained how the condition can affect patients.

Problems usually occur when relationships between doctors and families break down over what kind of treatment patients should be given.

Children with CFS/ME are often too ill to play with their friends

Concerns over whether parents are suffering Munchausen Syndrome by Proxy, where a person injures another to get medical attention, or fakes symptoms, may also be raised.

The fact child abuse is raised in some cases of childhood M.E. shows how misunderstood it is, say campaigners.

Trish Taylor, who speaks on child and adolescent care for Action for M.E. said: "This is a nightmare scenario."

She said such accusations could occur if children seemed fine one minute, but poorly the next.

Ms Taylor added she had dealt with four families in the last six months who had been the subject of child abuse fears."

However, doctors do say it is important in all cases to ensure the child's safety is protected.

Diagnosis

Even when child abuse is not considered as a potential cause for a child's symptoms, doctors can be cautious about making the diagnosis of CFS/ME, especially in a young child.

Most youngsters who develop CFS/ME are aged between 13 and15, but children as young as five can have ME.

Like adults, how seriously someone is affected varies enormously.

Dr Timothy Chambers is a Bristol-based paediatrician who led the panel on the working group which compiled the report for the Chief Medical Officer on CFS/ME.

I don't see my friends at all and it's ones that I don't know as well that stood by me but I'm still isolated

Child with CFS/ME

He said: "The younger they are, the more cautious one is about diagnosis.

"There are other conditions, such as malignant tumours and inflammatory bowel disease which may present some of the same symptoms."

He said clinicians had to go "that extra mile" to reach the diagnosis of CFS/ME.

But going through a lot of tests and seeing lots of doctors can be traumatic for children, says Trish Taylor.

Needs

The new report calls for early diagnosis and treatment, flexible care by an appropriate specialist, usually a paediatrician, and consideration of educational needs, if school attendance is likely to be disrupted.

Dr Chambers said it is important to explain their condition to the child in language they can understand: "I usually say a bug has come and hit you and left your body very weak.

"Sometimes the body recovers quickly, and sometimes it takes a long time.

I usually say a bug has come and hit you and left your body very weak

Dr Timothy Chambers, CFS/ME specialist

"You can feel a bit yukky before you get better."

He said it was important to tell a child you believed they were ill.

Adjusting to life with CFS/ME means family, friends and their school have to understand what the child can and cannot do.

In the Working Group's report, children say how difficult it is for them to cope with the condition.

One said: "People are saying what's wrong with you and never what is."

Another said: "I don't see my friends at all and it's ones that I don't know as well that stood by me but I'm still isolated."

Being unable to join in sports or social activities and attending school irregularly can separate children from their friends, in addition to disrupting their education.

Maintiaining a 'normal life'

Trish Taylor said: "There are circumstances where friendships have just broken down altogether, and they don't even talk to friends, or even text them."

And she hopes educational provision for children with CFS/ME who are off school for long periods will improve after government guidelines were published last November saying children with chronic illnesses off school for longer than 15 days should be taught at home.

Children are helped through talking to others in the same position.

"We have an alliance which helps children talk to each other," she said.

"Someone has even drawn up the 'top 10 tips' which helps people get through the day, providing information about how they manage their illness.

Action for M.E's helpline can be contacted on 01749 670799.