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More UK families with ME investigated

As many as 125 UK families have been investigated by child protection officers because they disagreed with doctors about the diagnosis and treatment of children with myalgic encephalomyelitis (ME/CFS).

Dr Nigel Speight, a paediatrician and adviser to the Tymes Trust (The Young ME Sufferers Trust), told The Sunday Times last week that he knew of 35 to 40 families under investigation.

In the wake of the Speight revelations, Tymes Trust director Jane Colby revealed the organization had assisted as many as 125 families under similar circumstances.

[quote]…once the whole process gets going, there is a kind of almost sadistic element to some of the worst cases. They must be able to see the suffering they are causing.[/quote]

“Commonly, such cases are sparked by paediatricians wanting to impose graded exercise or physiotherapy and school attendance. They often seem convinced that such methods will work, and will effect an improvement,” Ms Colby said.

“They do not accept it at face value when parents say that these management regimes make their children worse and withdraw them from the regime, requesting home or virtual tuition, as is their educational right. Suspicions then arise, social services are informed and have to investigate.”

Myalgic encephalomyelitis (ME/CFS) is a severe illness characterized by neurological and immune dysfunction. Around 250,000 cases of ME have been diagnosed in Britain, 25,000 of which are children.

Speight: ‘neglect, ignorance or cold feet’

Dr Speight spoke frankly and in further detail about his disturbing experiences in a recent video interview, with Rob Wijbenga, chairman of the Dutch ME/cvs Association and coordinator of ‘Wetenschap voor Patiënten’ (‘Science to Patients’).

 

 

He said: “I have had about over thirty cases which have all resulted in child protection proceedings with case conferences being held and the threat of removal. Fortunately most of them we have managed to avert by early intervention, giving second opinions.

“But quite a few have actually, have seen a real threat of removal, and one or two children have actually spent time away from their families against their will. Because of court proceedings.”

In one case, a mother, Sophie Sleep, of Lipson, Plymouth, had her two sons referred to social services “behind her back” in March 2011. Doctors then demanded that one of her children, whose condition had worsened despite being put on an exercise regime, be admitted to hospital for physiotherapy and sleep monitoring, against her wishes.

“Doctors are failing to diagnose ME, through neglect, ignorance or cold feet because it is controversial. There are perfectly good Nice [National Institute for Health and Care Excellence] guidelines telling every GP how to diagnose it,” Dr Speight said.

“The educationalists have a pressure on them to ensure school attendance. So if children aren’t protected by a diagnosis they will set the motion going. I sometimes think the child-protection social workers who are handling these innocent families are relieved to have such a soft target.

“But I have to say there is something once the whole process gets going, there is a kind of almost sadistic element to some of the worst cases. They must be able to see the suffering they are causing.”

NHS turns a blind eye

The poor treatment of ME children is not a recent development. In 2001, the Countess of Mar, Margaret Mar, then Deputy Speaker of the House of Lords, pointed a finger at the UK Department of Health when she wrote in The Telegraph that the Children Act 1989 was being misused to accuse innocent parents of seriously harming their sick children and to enforce potentially harmful treatment on their children without parental consent.

“When it comes to these children being taken into council care, the parents’ fundamental liberty to bring them up is being denied,” the Countess Mar said.

“When questioned, the Department of Health acknowledges both the seriousness of the illness and the lack of effective treatment for it.

“In practice, the department ambivalently turns a blind eye to its own officers who, without hard evidence, blame parents for their child’s illness and invoke child protection law.

“Apart from anything else, this is a breach of a family’s right to a private life under the Human Rights Act 1998.”

Countess Mar noted that children were being taken away from parents and subjected to often futile cognitive-behavioural therapy and physical exercises.

Further Reading

  • Gillespie, J., 2014. 40 families reported to social services after GP disputes. The Sunday Times, [Article]
  • Verrillo, E., 2014. Cruelty, revenge and sadism – how medical professionals have failed our children. CFS Treatment Guide, [Blog]
  • ME/CVS Vereniging, 2014. Seminar 28: Interview with Dr. Nigel Speight. ME/CVS Vereniging, [Video], [Transcript]
  • Tymes Trust, 2014. A Good Practice Guide to Education for Children with ME for GPs, Schools and Families. Tymes Trust, [Online]
  • Phoenix Rising, 2014. 40 families reported to social services after GP disputes. Phoenix Rising, [Forum]
  • Mar, M., 2001. How the law is being abused to force treatment on children. The Telegraph, [Article]

PHOTO: Dr Nigel Speight

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Written by Russell Logan

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Russell Logan worked as a magazine publisher and editor until forced into early retirement through ill health with ME. He has battled with moderate to severe ME for 25 years. He now lives in Noosaville, Australia.

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