Monday, 26 January 2015

The pantomime of PACE

More nonsense from the PACE trial/biopsychosocial gang in mid-January. The BMJ and the Lancet and the Telegraph and the Times and the Guardian and the Independent and the BBC and god knows where else reported with varying degrees of ignorance and insult that people with ME were exercise phobic, as insulting a red rag as you can get. And they wonder why people with my illness feel hostile towards such  'research'. It's a fucking pantomime. The BMJ did not at first post my comment but a week later, it has appeared. You can see the other rapid responses too, though the fact it took them a week to put mine up is not exactly rapid (and my comment should read biomedical research consistently *ignored*, ignored is missing). Lots of great comments from doctors and patients and charities. We all keep saying there is a wind of change, that this idiocy has been stamped out, finally, and then they pull another mendacious rabbit out of the bag. Professor Trudie Chalder, one of the lead actors in the pantomime - but not the only one in a tightly-knit clique of offenders - has been gloriously satirised here, described as having an advanced degree in rocket science from the church of behave therapy. That sounds about right, considering the nonsense she comes out with. I was also amused to discover that chalder is an old Scots word for a measurement of grain. The possibilities are endless.

Monday, 29 December 2014

Carlos Acosta on BBC4

With television so dumbed down and dispiriting, was a joy to come across Carlos Acosta on Boxing Day night. My favourite dance was this piece, 'Derrumbe', about a marriage ending. The female dancer is Pieter Symonds. She is mesmerising. The music is spellbinding too. The whole BBC4 programme is available here for a while.

Saturday, 29 November 2014

The Missing Story

A couple of months ago my friends lent me Tagore's selected stories, recommending one in particular, 'Kabuliwallah'. When I looked it up I thought I had the wrong page because the story was not there and after checking several  times, I realised the story was missing, it had been removed. So I read another couple of stories instead and loved 'Exercise-book', a story about a little girl who loves writing so much she will write on any surface she can get her hands on. His stories can be saccharine but there are gorgeous details, and unexpected harshnesses that stab you like drawing pins in a warm bath. When I mentioned the missing story to my friends they explained they had given me the wrong book, that they had another identical edition, and that 'Kabuliwallah' had indeed been carefully removed a long time ago to fax to someone. So we swapped over the books and they gave me the edition that did have 'Kabuliwallah' on page 115. As  I was reading it, the pages fell out and I thought what have I done only to realise that these were the few pages that had been removed from the first edition, now slotted into the wrong book.  In the end, I got two 'Kabuliwallahs'; these are the tiny beautiful details that make the world go round.



Wednesday, 5 November 2014

Autumn: research & lumberjacks & novel reprinted

Watching the 2003 film Monsieur Ibrahim et les Fleurs du Coran the other night, I was reminded of my time in France at L'Université de Caen, in the scene where the son feeds his father cat food and passes it off as pâté. My flatmate and I used to buy jars of pâté, from Carrefour that looked and tasted like cat food. I still remember the red and white chequered lids. I came across my carte de séjour the other day, which gave me a pang, more than just the nostalgia of finding student items from the '80s, it was when my life changed forever. In this student ID photo, I'd already picked up the Coxsackie B4 virus (while still at home in Scotland) and was having bizarre, frightening symptoms, with no clue, of course, of what lay ahead. In the photo, I'm wearing a purple and red and white lumberjack shirt - my then boyfriend's. Lumberjack shirts were fashionable then. 

The lumberjack theme is resonant:

In interesting new research from Professor Montoya's team at Stanford, they've found specific brain anomalies in ME patients:

The analysis yielded three noteworthy results, the researchers said. First, an MRI showed that overall white-matter content of CFS patients’ brains, compared with that of healthy subjects’ brains, was reduced. The term “white matter” largely denotes the long, cablelike nerve tracts carrying signals among broadly dispersed concentrations of “gray matter.” The latter areas specialize in processing information, and the former in conveying the information from one part of the brain to another. That finding wasn’t entirely unexpected, Zeineh said. CFS is thought to involve chronic inflammation, quite possibly as a protracted immunological response to an as-yet unspecified viral infection. Inflammation, meanwhile, is known to take a particular toll on white matter.

In the reporting of these findings, one news outlet accompanied its article with a photo of a tired looking lumberjack. It's hard to overstate how fucking irresponsible this is, though we are used to articles about ME with stock photos of fatigued women decoratively slumped over laptops, or sitting on beautiful white sofas looking a wee bit peaky. And as for the illness being 'real', well, the wise/informed among us have known that for decades. But when you get idiots in the medical community renaming a serious neuroimmune illness as 'chronic fatigue syndrome' - as happened in the late eighties/nineties - and reframing the illness to suit their own agenda - you probably can't expect the media to be anything other than sloppy.

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I used to count the years after I got ill in 1982, I stopped some time in the late nineties. But, still, when autumn comes, I know deep down that another year has passed. The State of Me has, happily, just been reprinted. The cat food scene is in there, of course.

Friday, 10 October 2014

'Dans la rue': a few thoughts on Patrick Modiano

Like many, I had not heard of Patrick Modiano when he was announced yesterday as the 2014 winner of the Nobel Literature prize.  He sounds like a lovely man, overwhelmed by the news. I listened to a short interview here in French and this illuminating discussion in English. He was walking in the Jardin du Luxembourg when he got the call he'd won.  I love that he was 'dans la rue' when he heard the news. 'Dans la rue' is one of the first, most simple phrases you learn in  French and  Patrick Mondiano is 'dans la rue' when he hears his words have just won him the Nobel prize for literature. I also love - from a writer's perspective -  that his work fuses autobiography and fiction and his books are only 100 pages, shorter than the length of the typical publishing house model - probably that is why he has not (yet) been widely translated into English.

I can still read French novels - slowly, slowly - if they are not too taxing. I downloaded a Kindle sample of Modiano's Pour que tu ne perdes pas dans le quartier yesterday but it will most likely be on the virtual shelf for a good wee while with all the other samples. (I started reading  Véronique Olmi's Bord de mer in paperback a couple of years ago but it was too bleak to finish.  I may go back though.)

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I was living in France 32 years ago, exactly, I'd just started my year abroad, the third year of my joint Honours French and English degree. I was ill from the start, I'd gone off to France, not knowing I had picked up the Coxsackie B4 virus (there had been an outbreak of this enterovirus at home in the west of Scotland). The rest, as they say, is history. I just  hope the next 32 years bring some real hope to people with  ME. I believe that if I had not spent the first decade fighting my illness, pushing myself, I would be more recovered than I am today. I didn't do GET, it was not yet invented, and I would have refused to do it, but I did do real damage by 'forcing' myself better even when I was clearly still very ill. So, please, can I say again if you have classic ME, rest, rest, rest, do not go near GET, the bizarre therapy peddled by those bizarre medics. They don't know what they are talking about. Listen to the doctors who *do* know, the informed ones, the educated ones.

Thursday, 2 October 2014

Colm Toibin & Hanif Kureishi & Bach

This is just perfect from Colm Tóibín, a five minute film on writing generally, and specifically on fictionalising family trauma. I agree with him about having to write the loss: using fiction to fix it and 'get it back'. A kind of rearranging, putting things back in place. I strongly feel my own writing of fiction is a response to catastrophe. I also love his comment about being able to go back to a piece of writing ten years later (what I'm currently doing, my progress is a just faster than glacial but I'm happy with the words I'm getting down). And I've been listening to Hanif Kureishi snippets on Radio 3's 'Essential Classics' - he always has gems. He says that in a world of 'lies and silence', we need art and music and novels - especially novels - to tell us the truth (1 hr and 45 mins in). I've fallen in love with this Bach piece - Prelude in B minor - from the same program (1 hr and 38 mins in). And writing this I have realised I have something in common with both these writers: like Colm Tóibín I lost my father at a young age (though I was younger), and like Hanif Kureishi I have a Pakistani father. I don't think, though, I have anything in common with Bach.

Wednesday, 24 September 2014

Five days after the morning after

It seems like months ago we voted to stay or go - I had a tear in the polling booth, it felt like destiny was weighing on you -  a real chance to make a fairer country - but not even a week has passed since the Scottish referendum. Last Thursday night, it felt like Hogmanay, but you didn't know when the bells would be, or if there would even be bells. I sat up 'til just after midnight but had to go to bed, woke up at six, so nervous, saw a FB message from a friend in Australia, saying, I don't understand all these Nos, my heart sank, and I turned on television to see that No had just won. Alex Salmond made a speech. I wept. My mother - I was staying with her for a few days while my stepdad was in respite care -  knew before me - she'd been up during the night. Friday was a day like no other I have experienced: a tangible grief being felt by 1.6 million people in Scotland, while 2 million others were celebrating, or, if they'd voted No out of fear, thanking their lucky stars. Worth noting, again, I think, that many of us who voted Yes - I think almost half - are not nationalists We simply want a better country, a better everything.

But there was  an 85% turnout, which is, in itself, a wonderful thing. Most of my family voted Yes, half of my friends voted No. There were interesting discussions to be had, certainly, but no one fell out.

Of course, the extra powers promised - aka the vow/bribe made to Scotland by a sleekit, panicked Westminster galloping up north when it thought Yes might just win - were instantly clipped onto wider constitutional reform - the question of only English MPs voting on English issues - when Cameron made his victory speech early on Friday morning. When - if at all - we will see those extra powers remains to be seen. I'm not holding my breath. As Lesley Riddoch said, we've been put to the back of the constitutional queue.

I read so much before and after the 18th, it has all blurred into one, but I thought this was a good article by Jonathan Freedland, the day after.  Also enjoyed this yesterday, by Iain Macwhirter.  I am gutted we didn't get independence, but the referendum was a fascinating event to live through and I will keep my polling card forever. I do believe that politics in the UK will never be the same again. SNP membership has doubled since the result on Friday. The Greens and Scottish Socialist Party are enjoying increases too. Labour is standing in the corner in disgrace for its part in joining with Team Tory to scare the bejesus out of us if we voted Yes.

My stepdad came home from respite on Monday and my mother asked him what he thought of the referendum  results. He replied, What referendum?  Knocking his forehead with his knuckles, he said to me: My brain is mud. My intelligence is still here, but my memory is not. He had a postal vote, but has no recollection.  Later, as he poured himself a wee whisky, he shouted through from the kitchen, Where is Arran?

I've had a *horrible* few days of illness, classic ME, and was mostly in bed for three days (tweeting from my pillow). Thirty years on, this is beyond a fucking joke. Still, on Monday I had an hour in my parents' garden reading, an Indian summer indeed (though it's dark now by half seven).

The article in the photo is from The Sunday Herald - the only newspaper to back independence - well worth reading, by Paul Hutcheon. And I ordered 'Autobiography of an Unknown Indian' by  Nirad C Chaudhuri after reading Ian Jack's very interesting pre-Indyref article last week: Is This the End of Britishness?  Personally,  while I love some things about Britain - our precious NHS - increasingly under threat - is a gem of gems - I've never felt particularly British. I feel Scottish, emotionally and psychologically, though my outlook by default is international. My mother is Scottish, my late father was an Indian-born Pakistani (I'm slowly exploring my Pakistani side, such as it is, in my current writing project). My stepfather is Danish, my sister-in-law is German. My most meaningful longterm relationship has been with someone not from UK. Moreover, the referendum to me was not about Britishness or Scottishness, or anti-Englishness - the worst accusation slung around by media - it was about fairness and social justice. I knew we weren't going to wake up in Norway, but a Yes vote would have surely given us the template for a more equal society.
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I'm home now and desperately hoping the baby squirrels haven't been hurt by the ever-present, prowling gangster neighbourhood cats. And I just love the poem 'The Morning After' by Christine de Luca: here it is being recited by Scottish 16 and 17-year-olds, first-time voters. Indeed, 'there are dragons to slay whatever happens'.

And here are the results in full. But, as Jonathan Freedland above said, 'When close to half the population of a nation inside a union wants to break away, the state of that union is not strong. It is fragile'.

There are, for sure, interesting times ahead.

*Update And this by Gerry Hassan worth reading too.