Heartening indeed to see this in yesterday's Independent.
Dr William Weir, Professor Malcolm Hooper and Countess of Mar, are to be applauded for publicly challenging the decision to give Simon a medal. A chink of light in the grotesque sitcom of cronyism, that has seen the opposite of science - conflation and obfuscation - dominate the treatment and management of my illness in the UK.
And, in today's Telegraph we have Dr Charles Shepherd, medical advisor to the ME Assocation - both of us, at different times, had muscle biopsies under Prof Behan - speaking of the need for biomedical research.
Since people with ME have virtually no right of reply when the Wessely PR machine spins out its spin - and it is spin - it is glorious to see Dr Shepherd's words: 'The NICE guidelines on ME are not fit for purpose'.
This is the guideline (in England*) that has been so heavily influenced by the Wessely school, the guideline that is oft-quoted by journalists with an almost religious awe, journalists who have no curiosity about truth. The guideline that advocates CBT and GET, the guideline that harms people with this neuroimmune illness.
*The Guideline in Scotland is not quite as bad.
Dr William Weir, Professor Malcolm Hooper and Countess of Mar, are to be applauded for publicly challenging the decision to give Simon a medal. A chink of light in the grotesque sitcom of cronyism, that has seen the opposite of science - conflation and obfuscation - dominate the treatment and management of my illness in the UK.
And, in today's Telegraph we have Dr Charles Shepherd, medical advisor to the ME Assocation - both of us, at different times, had muscle biopsies under Prof Behan - speaking of the need for biomedical research.
Since people with ME have virtually no right of reply when the Wessely PR machine spins out its spin - and it is spin - it is glorious to see Dr Shepherd's words: 'The NICE guidelines on ME are not fit for purpose'.
This is the guideline (in England*) that has been so heavily influenced by the Wessely school, the guideline that is oft-quoted by journalists with an almost religious awe, journalists who have no curiosity about truth. The guideline that advocates CBT and GET, the guideline that harms people with this neuroimmune illness.
*The Guideline in Scotland is not quite as bad.
3 comments:
Excellent post Nasim.
Hey Sylv, Nice to see you here. Not sure if you have seen this: Simon has updated his own website:
http://www.meactionuk.org.uk/Wessely-is-misunderstood.htm
And we have this now in Science Media Centre anniversary brochure, they just can't let go the threats story, anything to bolster the rapidly-losing-crediblity of their psychosocial therapies: pg. 16
http://www.sciencemediacentre.org/wp-content/uploads/2011/10/SMC-Anniversary-Brochure.pdf
I would like to remind Esther that she doesn't use PEM in her diagnosis of ME:
http://www.bmj.com/rapid-response/2011/11/03/rewill-adopting-canadian-criteria-improve-diagnosis-chronic-fatigue-synd-0
Meanwhile, I was pleased to see that consultant neurologist who diagnosed me in 1983/4 - when ME was ME, before the distortion - has recently put his CV on Twitter: https://www.box.com/s/8iudyj7a0eyhzfn2mjyf
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