BBC News England, 27 June 2017: Carers of children with ME ‘accused of fabrication’

Chronic Fatigue Syndrome, or ME, affects about 25,000 children in the UK
A “significant number” of those caring for children with ME have been accused of fabricating their child’s illness, a survey has found.

The charity Action for ME said a safeguarding referral to a child protection team had been made against one in five respondents.

Its chief executive said children and their carers faced the “double whammy” of an ME diagnosis and not being believed about their condition.

NHS England has been asked to comment.

Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome, is a debilitating disease that has a major impact on the lives of those affected. It causes persistent fatigue that does not go away with rest or sleep.

It affects about 25,000 children in the UK.

Out of 270 respondents to the survey, one in five said they had had a safeguarding referral to a child protection team made against them.

Half of the referrals involved allegations that parents had fabricated or induced their child’s illness, although 70% of all the cases referred to social services were dropped within a year.

‘Lives stolen’
Sonya Chowdhury, CEO of Action for ME, which is based in Keynsham, near Bristol, said:

“Ninety-six per cent of the parents felt that their children’s care had been affected by a lack of understanding of ME and nearly 100% of parents were concerned their child had not been believed.

“If people are not believing a child about an illness even when there is a diagnosis, those children are facing a double whammy.

“Not only have they had their lives stolen as a result of illness, they’ve had their lives affected and traumatised as a result of the system.”

She said the charity would be carrying out further investigations into the claims.

England’s chief social worker Isabelle Trowler said:

“It’s important that all the professionals who work with young people have a firm understanding of conditions like ME and the impact these can have on their daily lives, so they can access the same opportunities as their peers.

“I have met and continue to meet with groups and organisations including Forward-ME, and will work collaboratively with them and a national network of social workers to further professional understanding of children with ME.”

An investigation of the survey and treatments for ME was on Radio 4’s File on 4 on Tuesday at 20:00 BST. Listen again

Read Dr Charles Shepherd’s comments on the programme in the comments section at our post: ‘Believe ME’ on BBC Radio 4 Tues 27 June 2017 at 8pm

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