Nasim Marie Jafry's Blog, page 3

Zaibunissa Street

I recently learned that Elphinstone Street (named after British official Monstuart Elphinstone) in Karachi was re-named Zaibunissa Street in 1970 after writer and journalist Zaib-un-Nissa Hamidullah. This interests me as Elphinstone was in Saddar, the area my paternal family migrated to in 1950s after Partition. I've read that Saddar was then full of book shops and (Iranian) tea houses. The streets were washed every day. Elphinstone was a street people strolled down. There was ballroom dancin...

'Moments'

I've just learned to do 'moments' on Twitter.

All a bit higgledy and random.

You could really go on forever adding tweets to tweets.

Maybe you could write a novel.


Fiction as truth, my novel describes young woman dxd w severe ME 1980s pre 'CFS'

The walling off that illness brings

At the end of January I spoke at a Scottish Parliament event to raise awareness about the dire lack of services for ME sufferers: there are currently no consultants in Scotland with expertise in ME - and only one specialist nurse in Fife. We do, disturbingly, have the Lothian ME/CFS clinic - again, no expertise in actual ME, it appears to treat 'chronic fatigue' - and people are reporting harms from graded exercise therapy on offer. I met a young woman who now uses a wheelchair because of bei...

Learning to swim in Lahore; Muriel Spark and Kjersti Skomsvold

I recently reviewed Isambard Wilkinson's Travels in a Dervish Cloak, this passage stays in my mind:

Pakistani novelists of  a certain vintage remember a golden era in Pakistan's first decades when Anglo-Indians danced at Karachi's Metropole, hippies spun vinyl at discotheques, Pakistan was advertised as an exotic holiday location and Dizzy Gillespie beguiled a Sindhi snake charmer's serpent with his trumpet. That innocent age, if it ever existed, was dead.

It makes me nostalgic for a Karac...

My thoughts on UNREST (2017) ★ ★ ★ ★

UNREST is a new film from USA about ME directed by thirty-five year old Jennifer Brea. The film has garnered much praise and documents Brea's own descent into ME (or CFS as it's interchangeably referred to in the film - this is not without problem as the toxic reframing of ME as CFS remains unexplored). Still, ME sufferers have been starved of representation (though we've also had VOICES FROM THE SHADOWS (2011) and FORGOTTEN PLAGUE (2015)) and it's unsurprising there's been such a buzz about...

My thoughts on UNREST (2017)

UNREST is a new film from USA about ME directed by thirty-five year old Jennifer Brea. The film has garnered much praise and documents Brea's own descent into ME (or CFS as it's interchangeably referred to in the film - this is not without problem as the toxic reframing of ME as CFS remains unexplored). Still, ME sufferers have been starved of representation (though we've also had VOICES FROM THE SHADOWS (2011) and FORGOTTEN PLAGUE (2015)) and it's unsurprising there's been such a buzz about...

Comment piece in The Medical Independent referencing my novel

Am delighted that the current issue of The Medical Independent, a fortnightly Irish medical journal, has a comment piece on ME  ('George Winter examines the evolution of recognition for myalgic encephalomyelitis (ME)'), which  references my novel, TS Eliot, Hilary Mantel and Virginia Woolf. PACE is discussed too. It is so very refreshing to read a science writer who has an intellectual curiosity about the illness - and the literary slant is lovely too.

Good news: NICE review - and a science writer who listens

Finally, some good news from NICE, they dug in their heels for ten years with an absurdly harmful guideline - recommending graded exercise and CBT for mild to moderate ME - which they conflate with fatigue - and simply ignoring severe ME - but now they have agreed to a full  review. We can only hope that all the cosiness and networking behind the scenes will be broken down by actual evidence and science. The Royal College of Psychiatry, who naturally did not want an update - must be disa...

The scandal of PACE trial continues to shock

Last week the Journal of Health Psychology published a special edition on the travesty that is the PACE trial. Editor David F Marks knew nothing of the trial until a year ago and when he looked at the evidence he realised - as anyone rational would - that this highly spun - harmful - research is abject nonsense from start to finish. By pitting himself against the UK medical/academic establishment he has learned just what ME patients have been tolerating for decades.
Of course, the Science Medi...

'Re-writing the hurt' (Jeanette Winterson)

Podcasts can fill me with dread because *sometimes* they are dull and you (often) can't fast-forward. I listened last night - lying down with my eyes closed - to a Jeanette Winterson podcast from 2012, it is a joy and delight. Her clarity and honesty soar and you could listen to her forever. She talks about 're-writing the hurt' in order to be able to cope with the narrative or the memory of what happened. On the writing of truth versus fiction she says she realised - with sadness - after Ora...