Click on link for full article (may be behind paywall) http://www.thesundaytimes.co.uk/sto/comment/columns/CamillaCavendish/article1455512.ece The state may threaten but a parent knows when a child is sick The Sunday Times, 07.09.14, News Review, page 6 By Camilla Cavendish, Associate Editor, firstname.lastname@example.org Parts of article relevant to families with ME (see link above for full article): My youngest son turned five last month. If he were diagnosed with a brain tumour, like Ashya King, and if he were deteriorating after surgery, I know that I would pursue the thinnest threads of hope to the ends of the earth to save him. I certainly wouldn’t hesitate in spiriting him away to Spain as Ashya’s parents did. … ... I was recently contacted by a family who believe their child has ME (myalgic encephalomyelitis). Their doctor prescribed psychiatric treatment that the parents claim made the child worse. They say the hospital tried to stop them getting a second opinion, even though they were happy to pay for it. When they finally got a second opinion, from a doctor who diagnosed severe ME, the hospital’s response was not to review its own treatment plan but to alert social services. The parents are terrified that they are being presented as a risk to their child. There are mutterings about “fabricated or induced illness” (FII), a condition in which a parent either invents, exaggerates or creates their child’s illness. FII is similar to Munchausen’s syndrome by proxy (MSbP), the theory put forward by Professor Sir Roy Meadow, the paediatrician, in the 1970s. These syndromes do exist: one of the mothers cited by Meadow had put her own blood into her child’s urine sample to make him look ill. But it is widely accepted that they are extremely rare: far rarer, I suspect, than the number of allegations that are routinely made. Munchausen’s is a pernicious thing to be accused of, because one sign is that you are very concerned about the health of your child. The theory was tarnished after Meadow became associated with the wrongful murder convictions of three women. But FII is even more iniquitous than MSbP because one of the signals that someone has it is a refusal to co-operate with treatment. This brings us perilously close to the point where the state is presumed to know better than any parent who is concerned enough about their child to refuse a treatment that doesn’t seem to be working. Other families are facing similar problems over children with ME and many are trapped in the catch-22 of FII/Munchausen’s. Over the years I have been struck that most of those accused of these syndromes turn out to have upset the authorities in some way. Some have complained about poor hospital treatment; others about inadequate help for a child with learning difficulties. Like the Kings, such families are often mouthy and independent-minded. Unlike the Kings, few are middle class with the resources and contacts to prevail against the system. And few will go public for fear that the authorities will take revenge by removing their children. … ... Yesterday I spoke to a doctor who has acted both for and against parents in court cases where they have been accused of child abuse. He described a recent conversation between a paediatrician who was insisting on a certain diagnosis and a child’s family he thought were exaggerating. “You must be open minded!” the paediatrician exploded in exasperation. “Why can’t you be open minded?” asked the mother. “That we could just be a normal family with a sick child?” Ashya King’s case is rare, complex and challenging. But it has exposed a streak of vindictiveness in certain institutions of which they should be ashamed. Ends Unfortunately, the article is behind a paywall which makes public comments difficult. You can join for £1 for the first month and cancel 15 days before the second month (£26 per month from then!) which makes public comments difficult. But people could email Camilla on email@example.com to thank her for writing about this awful issue, to encourage greater education about ME for health and social care professionals and also far more biomedical research which is finally getting off the ground now in the UK. We need to capitalise on this publicity for the dire situation in which many of us and our families find ourselves.