NASIM MARIE JAFRY: ON WRITING, READING and CHRONIC ILLNESS: NIH State of the Knowledge workshop

Thursday, 7 April 2011

NIH State of the Knowledge workshop

National Institutes of Health State of the Knowledge 7 - 8 April workshop live now. Line-up of speakers here. Note that there are no psychiatrists present - exactly as it should be for discussion of a neuroimmune illness. How it should be, how it should always have been. I often think that even if there were a unique biomarker/cure for ME tomorrow the damage wreaked by the intrusion of certain psychiatrists over last twenty years could never be undone.

Update* I dipped in and out, I listened rather than watched, it was fascinating and refreshing to hear scientific discussion about ME with no bullshit abracadabra PACE nonsense.

Day One available to watch/download.

Day Two available to watch/download.

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Reviews I like

'Stylistically The State of Me is an easy, unpretentious read, peppered with acerbic internalisations that every ME sufferer wants to vocalise to every well-meaning person with a suggestion on how to get better. That said, there is no real bitterness to the book, quite the contrary, and the stories of those surrounding the narrator (nostalgically evoking the 1980s) give it many layers.' Mischa Hiller, author of Sabra Zoo and Shake Off '

'The amazing feat of this novel is to give one a sense of the pain and frustration of this condition, and yet to be bouncing with life, the inner life and the irrepressible psyche of Helen' Elizabeth Baines, author of The Birth Machine

'They say the ending can make or break a book, and the ending of The State of Me is beautifully crafted and uplifting' Lisa Glass, author of Prince Rupert's Teardrop

A remarkable first novel ... word perfect on neurological ME' Tony Britton, Publicity Manager, ME Association

'A really enjoyable read, with a wicked sense of humour... It took a little time to get into, but after a while it was like The West Wing, I was hooked and did not want it to end' John Barrett, MP for Edinburgh West, 3 May 2009

'Nasim writes in spare, measured sentences. The effort is contained and elegant as if the author had to calculate each word, the length of each paragraph before attempting it' Peregrinations blog

'...is it at all possible that your book is more about the destabilising power of love than ME? I don't know how you'll receive this - and I'm not sure how to describe it, either - but the ME, whilst central, is also (I know, this sounds ridiculously contradictory) secondary, a kind of despairing background noise to the main event' Periodic Englishman, writer and blogger

'It is a balanced, non-didactic account of a young person grappling with a dreadful illness. All doctors will benefit from reading The State of Me' NHS blogdoctor

NASIM MARIE JAFRY: ON WRITING, READING and CHRONIC ILLNESS

Thursday, 7 April 2011

NIH State of the Knowledge workshop

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