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Guide for ME families dispels myths

In October, I reported on the escalation of false allegations and instances of institutionalised abuse against families of children suffering with Myalgic Encephalomyelitis (ME/cfs) in the UK, and also world-wide.

I also highlighted Dr Nigel Speight’s crusade against bureaucratic indifference and the extraordinary support being provided to ME families by Tymes Trust, one of the few charities focused on this issue.

At the time, according to Tymes Trust, as many as 125 UK families had been investigated by child protection officers because they disagreed with doctors about the diagnosis and treatment of their children.

[quote]The booklet looks at whether ME management regimes are making children worse, why parents are being suspected, and the intent behind authorities using the courts to admit children to psychiatric units.[/quote]

Tymes Trust now reports that 137 families have been subject to bureaucratic scrutiny, a disturbing increase in such a short time.

 

Further to this story, Tymes Trust has just released a booklet which provides guidance and support on the issues of false allegations, exercise treatments and graded programmes – essential reading for families of children with ME.

The booklet also looks at a number of pressing issues such as whether ME management regimes are making children worse, why parents are being suspected, and the intent behind authorities using the courts to admit children to psychiatric units.

Jane Colby, Executive Director of The Young ME Sufferers Trust (Tymes Trust), is leading the fightback against growing bureaucratic antipathy towards ME families.

She sees the new booklet as a vital tool in spreading knowledge of the injustices faced by many families of children with ME.

In addition to addressing the issues of false allegations, Ms Colby said the booklet “gives a clear, referenced analysis of why exercise treatments and graded programmes of school attendance may often make children worse, as reported to the Trust week in, week out.

[quote]So the booklet is a tool with which you can educate your school and your GP, and back up your requests for the type of education and general lifestyle which your child needs and is entitled to…[/quote]

“It examines why such activity management programmes are still being imposed on families despite the frequently reported negative outcomes. And it addresses the difference between ME and CFS, explaining the confusion that has resulted from the adoption of the terms Chronic Fatigue and Chronic Fatigue Syndrome.

“So the booklet is a tool with which you can educate your school and your GP, and back up your requests for the type of education and general lifestyle which your child needs and is entitled to, in order to make the best recovery possible whilst still not missing out on a good education.”

Tymes Trust recommends that you obtain a copy of your child’s medical and school records to check what has been written about your family.

It is a parent’s legal right to choose how to look after their child. If you want to discuss this, please phone Tymes Trust’s Advice Line on 0845 003 9002. [UK only]

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]
  • 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]

Handy Resources

  • Tymes Trust, 2014. False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME) Tymes Trust, [PDF]
  • Tymes Trust, 2014. A Good Practice Guide to Education for Children with ME for GPs, Schools and Families. Tymes Trust, [PDF]

PHOTO: Holding Hands by Jeffrey

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Written by Russell Logan

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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