Sunday, 12 January 2014

Part Two of Trusadh: 'The Toxic Tiredness' on BBC Alba

Part Two of  'The Toxic Tiredness' documentary airs tomorrow night - Monday 13th - on BBC Alba at 9pm (and repeated tomorrow at 10pm). My original response to episode two from January 2012 is here.  I am only briefly in part two: 17 secs, 47 mins and 48:50 mins. Professor Behan appears at 35 mins, he diagnosed me in late 1983/early 1984 with severe post-viral fatigue syndrome/myalgic encephalomyelitis, after specific antibody titres of Coxsackie including IgM; lymphocyte subset analysis; detailed single fibre EMG and measurement of jitter; and specific muscle biopsy.

I had by then been ill for almost 18 months after becoming ill with Coxsackie B4 virus, my Honours degree/year abroad in ruins. I remain grateful that I was seen and treated by a consultant neurologist before the Wessely school began to hijack and really take hold of this illness a decade later, conflating it with idiopathic 'chronic fatigue'. Interestingly, in all of his writings, Professor Wessely tends not to reference key-players in the world of ME in the eighties, doctors like  Behan and Melvin Ramsay and Betty  Dowsett and John Richardson.

This film with Dr Nigel Speight is also an eye-opener, he intervenes on behalf of children with ME who have not been believed by psychiatrists/paediatricians/social workers. He describes the collusion of such professionals, their false belief that they have effective treatments in the form of graded exercise and CBT. I can only imagine the horror  of being a child or a parent of a child who is severely ill and not believed. I was not yet nineteen when I first became became ill, but at least I could not be bullied into treatments that would make me worse. An ill child is so dependent on others to do what is best for them. And they wonder why people with ME are anti-psychiatry!

If anyone has a child with a diagnosis of ME, Tymes Trust is a brilliant charity. If I had a poor wee one with this illness, this is where I would go for advice. Children do seem to have a better prognosis than adults, but being able to rest sufficiently is paramount to recovery.

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