Doctors who know what they're talking about

From the recent Bristol Watershed's abridged showing of Voices from the Shadows and discussion afterwards:

Dr Mark VanNess is excellent on the harm of aerobic exercise in ME patients, 'rest is crucial'. And Dr Nigel Speight, always fabulous, begins by apologising to ME patients on behalf of the medical profession.

Doctors who know what they're talking about, the opposite of the Wessely school.

And here is more on the nonsense of the PACE trial by Neil Riley, chairman of ME Association. I think we should remind ourselves of what Wessely said in 2011:  'For those who appreciate these things, the trial is a thing of beauty'. He  also described the trial as 'large and elegant'.

Enough to make you weep.

Fathers & stepfathers & childhood homes

I was surprised - and flattered - last week to learn I'd been nominated for a *Scottish Asian Women's Award, in the 'achievements against all the odds' category. I wondered what I had done to qualify: it's five years since my novel came out, though perhaps someone saw The Scotsman story or the repeat of the BBC Alba documentary.  I don't, to be honest, feel particularly representative of Scottish Asian women, though I am proud of my Asian roots, they are part of who I am.  If I see an elderly Asian man in the street, my heart collapses gently. I often say I feel  'fake' mixed race as my Pakistani father, born in British India, died when I was eight and I didn't really grow up between two cultures; I am more in tune with what an alcoholic father is than a Pakistani one (I'm in the painfully snail-slow process of writing about him - unexpectedly painful in several ways - although it is a highly fictionalised account). He was doing his medical degree in Bombay at the time of Partition, and I'm fascinated by what that must have been like for him.

I actually withdrew my name from the awards as I couldn't attend the judging panel, it was far too short notice, I must always plan my energy meticulously, though I think they are still trying to arrange a later date for me. I do, of course, feel representative of women (and men) with ME and if this nomination can spread awareness, that is fine and dandy.

I spent yesterday with my Greenland-born Danish stepdad, he continues to drift into his own wee twilight world of dementia. Sometimes, I sit with him and google Greenland just to see what comes up. We look at videos of Ilulissat, the town where he was born, and he exclaims, That's the hospital! Or That's where Per and I had our confirmation, pointing to the beautiful old church. The house he grew up in is now an art museum with a permanent collection of Emanuel Petersen, a Danish  artist. He was overjoyed when I showed him this.  

I was in my own childhood home last summer for the first time in almost thirty years. Last year, some of my Pakistani family visited Scotland, I hadn't seen them for many, many years, we went out to Loch Lomond in two black cabs, ten of us, and we stopped outside the old house. Like a scene from a movie, we lined up against the wall and had our photos taken. The owner was in her garden and kindly invited us round the back to have a look. I was  physically and emotionally shattered from the trip and when I saw my uncle's heels disappearing into the kitchen I thought I was dreaming, but sure enough the owner had invited him in. I went in after him and it was surreal to be in a house that was mine and wasn't mine. The stairs up to the bedrooms seemed so steep and I remembered how I would have to sit down to rest halfway when I became severely ill with ME. The most surreal thing was to look out the window of the back bedroom and see my Pakistani cousins' children playing on the swing.

*update: Uuganaa Ramsay won the Scottish Asian Women's Award 2014. I reviewed her book MONGOL here.

Three essays & a review

I highly recommend Deborah Levy's recently published essay, 'Things I Don't Want to Know' - it's feisty and sharp, with long, gorgeous sentences that can make you dizzy if you are not careful. Towards the end she says: 'What do we do with the knowledge that we cannot bear to live with? What do we do with the things we do not want to know?' I also enjoyed Zadie Smith's essay on writing, 'That Crafty Feeling', which I came across a couple of weeks ago on Poets and Writers,  Lines We Live By. Zadie's tone can sometimes feel a bit too artfully self-deprecating, but I love her obsession with the first 20 pages of whatever she is working on, and this: 'After each book is done, you look forward to hating it (and you never have to wait long)...'

Also enjoyed Janice Pariat's 'A line runs through', her short piece on borders in literature in which she references Saadat Manto's short story 'Toba Tek Singh'. I read Manto for the first time just over a year ago and was bowled over.

And allow me to link to this new review on Amazon of The State of Me which begins: 'This is an excellent book from a gifted writer. I don't think it ever received much publicity, and so I suspect nearly everyone reading it suffers from or knows someone who suffers from chronic illness. This is a shame as it's a superb portrayal of the "world" of chronic illness, yet at the same time it is never dreary or too depressing...'

Warning: do not overheat your lavender wheat bag

I've been wearing my lavender wheat bag like a stole these last few months, I have intermittent neck pain - I'll get a sudden creaking noise like a tree, and a short sharp pain, then toothache in my neck/left shoulder for the rest of day. Last night, I overheated the bag in the microwave, I scorched it - amazing it has not happened before, the scorching - it smelled like a singed dog. I used it anyway, took it to bed and woke up surrounded by wheat kernels, scattered like confetti. The scorched bit had burst. I am sad. I love this wheat bag, is excellent for back and neck pain, though sometimes it does burn your skin if you're not careful.  It feels like a pet has died. But time to get a new one.

Different kinds of light

The exhibition of Chinese lantern warriors at Edinburgh University is beautiful and haunting, the figures sway gently in the wind, the old quad is a gorgeous backdrop. These ninety figures made me think of Jelly Babies marching. And there are benches for resting, always important.

And Bruce Munro's 'Field of Light', which I have not yet seen, has just opened in St Andrew Square. It looks like a glorious field of glass tulips. We are lucky to have these wonderful installations on our doorstep.

Light also in the news that 8000 research journals will now be available free online in public libraries. No more ludicrous paywalls to access  papers of interest.

And more light in American journalist David Tuller's recent article on the absolute inadequacy of the name Chronic Fatigue Syndrome to describe a serious neuroimmune illness (the name was coined in the USA after the Lake Tahoe outbreak in 1984. Dr Dan Peterson has since apologised for the nonsense of such a name). Tuller’s excellent article makes the point that the illness myalgic encephalomyelitis (ME) is not owned by any one speciality, this is true, and this is perhaps why it was possible for psychiatrists in the UK to flood into the ‘void’ and try to own the illness themselves.

I *can* see how the terminology is confusing for outsiders. In the UK, ME has been known as ME since the mid-1950s (and WHO has recognised it as a neurological illness since 1969). It was only towards the end of 1980s that the 'CFS' terminology came in to use in the UK, thanks largely to the core of psychiatrists known as the Wessely school. This school effectively tried to ‘disappear’ ME and replace it with CFS, a nebulous fatigue syndrome that is a thousand miles away from the complex neuroimmune illness that is ME. They started to use the label ‘CFS’, but this slowly became ‘CFS/ME’ as they tried to merge the illnesses and dilute the criteria for ME. And,  confusingly, ME is also now referred to as ‘ME/CFS’ by doctors who *do* believe in ME. And CFS is, even more confusingly, also the research term used across the board. 

My rule of thumb is if you see the term 'CFS/ME', you know you are dealing with skulduggery.

When I was diagnosed with ME in early 1984 - 16 months after becoming ill with Coxsackie b4 virus - by a consultant neurologist, I had never heard of Coxsackie or ME and had to educate myself. It is hard to imagine now how very little information there was in the public arena. Personally, I always refer to my illness as ME, this is the illness I have, I simply don’t know what CFS is. And the fact remains that the psychiatric lobby's choices of treatment - graded exercise and CBT - don’t make people with ME better, and in fact often make people worse. In spite of  its best attempts to 'out' us as a patient population suffering from false illness beliefs, we remain ill. The obfuscation and conflation of ME with nebulous fatigue syndromes is simply not sustainable.

Finally, I welcome this event featuring Dr Mark VanNess speaking about  the safety of exercise in PWME tomorrow in Bristol, and the wonderful Dr Nigel Speight. I wish I could go. Actual scientists, lighting the way, like hundreds of  marching lantern warriors. More on Dr VanNess's work here.

David Tuller article

Good article from American journalist David Tuller on the absolute inadequacy of the name chronic fatigue syndrome to describe a serious neuroimmune illness (the name was coined in USA after the Lake Tahoe outbreak. Dr Dan Peterson has since apologised for the nonsense of such a name). It is heartening to see journalists write factually about the illness, instead of the typically ignorant, influenced by Wessely school, articles we see here in UK - I don't know of any health editors who have tackled the subject of ME honestly or  with any real scientific curiosity.

David Tuller’s excellent article makes the point that the illness ME is not owned by any one speciality, this is true, and this is perhaps why it was possible for psychiatrists in the UK to flood into the ‘void’ and try to own the illness themselves. When I was diagnosed with ME in early 1984 - 16 months after becoming ill with Coxsackie b4 virus - by a consultant neurologist, I had never heard of Coxsackie or ME and had to educate myself. Dr Melvin Ramsay’s book ‘The Saga of Royal Free Disease’ is an excellent introduction. His book actually refers to the Coxsackie outbreak in west of Scotland which triggered my own illness.

I can see how the terminology is confusing for outsiders. In the UK, myalgic encephalomyelitis (ME) has been known as ME since the mid-1950s (and WHO have recognised it as a neurological illness since 1969). It was only towards the end of 1980s that the chronic fatigue syndrome/CFS terminology came into use in the UK, thanks largely to the core of psychiatrists known as the Wessely school. This school tried to ‘disappear’ ME and replace it with CFS, a nebulous fatigue syndrome that is a thousand miles away from the complex neuroimmune illness that is ME. They effectively tried to banish ‘ME’ and instead used ‘CFS’, but this slowly became ‘CFS/ME’ as they tried to merge the illnesses and dilute the criteria (for ME). And,  confusingly, ME is also now referred to as ‘ME/CFS’ by doctors who *do* believe in ME. (And CFS is, even more confusingly, also the research term used across the board.)

Personally, I always refer to my illness as ME, this is the illness I have, I simply don’t know what CFS is. I have seen my illness being  hijacked by the Wessely school over the last two decades, but the fact remains that their choices of treatment - graded exercise and CBT - don’t make people with ME better, and in fact often make people worse. In spite of the psychiatric lobby’s best attempts to out us as a patient population suffering from false illness beliefs, we remain ill. The obfuscation and conflation of ME with nebulous fatigue syndromes is simply not sustainable. 

Ann Beattie in Granta mag

I love this article by American writer Ann Beattie in Granta mag:

All those echoes, all those memories nipping at my heels. I guess that like a lot of writers, I write for myself, hoping I’ll believe the fiction, that the stand-in will make what happened (or what I thought happened) less painful, or at least more remote.

Short story in The Scotsman

Delighted to have a short story in today's Scotsman, they showcase emerging - I will be forever emerging -  and established writers in The Write Stuff. I sent off  'A Small Punishment' last November and heard back in less than a week that they wanted it. So refreshing to hear back so quickly, usually you are waiting for months and months when you submit on spec. The story should have appeared before Christmas, but I was nudged over by the great man. And thanks to my friend Ciara for giving me the heads up about the feature (she had one of her own stories published last autumn). My story was, in fact, shortlisted for the Bridport Prize in 2011, but has never been published. I have edited it significantly since then - also, made it less sweary - that's the great thing about a piece of writing, you can leave it for months or years and go back to it. It is never really finished. Five years on I still want to change sentences in The State of Me.

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.

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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.

Art & catastrophe, & BBC Alba documentary, repeated on 6 and 13 January

The BBC Alba 'Toxic Tiredness' documentary from January 2012 is being repeated tonight at 9pm*. The Gaelic parts are, of course, subtitled. I previously blogged about both episodes here (part one) and here (part two). I appear in episode one right at the beginning looking like a bag lady, with my usually rather funky prescription sunglasses - they filmed us at weird angles outside for a few shots, the effect is alienating and disorienting, maybe that was the intention. And then at approx - 2.30, 7:30, 13, 18:30, 24, 29, 40:50 and 48 mins (I talk about the novel here and read an extract).

And Professor Peter Behan, the consultant neurologist who diagnosed me in 1983/84, appears in episode two, 35 mins in. He is magnificent. I especially liked:

  '... there is an essential biochemical component to the illness which needs to be elucidated, and research should be along the grounds into these illnesses rather than dealing with psychological talk the talk nonsense'

Dr Charles Shepherd  of the ME Association - also diagnosed by Peter Behan -  makes a great contribution too (though I don't necessarily agree with *everything* he says). The early-mid eighties was still a hard time to get a diagnosis, it took me almost 18 months, but  the psychobabble that we know today was yet to reach its dizzying heights of obfuscation -  this conflation of  serious neuroimmune illness with 'chronic fatigue' has, as we know only too well, done untold damage. We can only hope that science is now progressing, albeit slowly, unfettered by the hijackers. Here's to some decent biomedical research in 2014.

* Part 1 repeated Tuesday 7th at 10pm and soon on iPlayer

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And I came across these wonderful photos by Penny Clare the other day on the Centre for Medical Humanities blog. She took them while severely affected and bedridden. I particularly like A fingernail celebrates New Year (I don't want to breach copyright so am not posting any photos here).

 More of Penny's photos can be seen on the excellent Phoenix Rising site.


For me, these photos highlight the link between creativity and illness, we are 'forced' by the illness into places we never knew we would go. We are still ourselves but catastrophe has given us a different way of expression. I often think of my novel/fiction as  my response to catastrophe. Writing often is.

Being nudged over by Nelson, gently

When I woke up on Thursday morning the shed had been blown over on its side like a Monopoly piece. I'd been awake for a few hours before I actually noticed, and it was utterly dislocating to see. I felt powerless. When I went to bed on Thursday night Nelson Mandela had just died.  I  lit candles - these rituals we have because we don't know what else to do - and shed a fair few tears at some of the television footage. I was due to have a short story in the Scotsman this weekend but it has been postponed because they needed space for  tributes. It's something  of an honour to have been nudged over by Nelson. The shed is happily fixed (thanks to neighbours and joiners), and I'm now brimming with Mandela memories. So much to link to but I will just link to these: Nadine Gordimer  in The New Yorker; Marina Hyde in The Guardian; Teju Cole in The New Inquiry; this by Musa Okwonga; and  Jon Snow's blog .

Some thoughts on Doris Lessing

By a quirk, I just finished reading my first Doris Lessing novel last week - The Memoirs of a Survivor - though I have a signed copy of Briefing for a Descent into Hell (which I could not finish) - and was saddened to learn on Sunday that she had died, aged 94. I love this clip of her reaction to learning she had won the Nobel Prize for literature in 2007, she was then 88.  She is one of those hallowed writers you feel guilty for not having read more of. An interesting article on her life from the Telegraph, and this, which I still have to read, from the Guardian, Diana Athill and others on The Golden Notebook (I hope to read The Golden Notebook at some point but will probably never get round to).  I would though definitely like to read Under My Skin, having just read Hilary Mantel's review in the London Review of Books from twenty years ago.

My Goodreads review of The Memoirs of a Survivor here.

Red Cross Appeal and Authors for the Philippines

With enviable coordination,  writer Keris Stainton has organised a fundraising auction to raise money for the Red Cross Typhoon Haiyan Appeal. She did a similar thing for the Japanese tsunami relief fund in 2011. I have donated a signed copy of The State of Me, and am delighted to see there is a starting bid of £20. If you can, please join in the donations, there are many wonderful writing/book-related items to bid on.  

The State of Me is lot no. 288.  Please scroll down to see and bid.

Questions about browsing lots and bidding answered here.

Thank you.

Update: the auction has raised £55, 124.73!

Radio 3: Childhood, memory, autobiographical narrative & fiction

I have been for some time now been attempting a novella which involves a fierce scraping of my memories in order to fictionalise events in the life of my Pakistani doctor father. Apart from the usual writing/energy challenges, it feels like quite a brutal mining of myself, and for reasons beyond me the narrative is emerging as third person omniscient. A writer friend suggested that the technical challenges of this point of view mirror the emotional challenges. I like that theory.

I am, therefore, fascinated more than ever by childhood, memory and  narrative.

Some interesting radio programmes from Radio 3's 'Free Thinking' series:

Autobiographical writing and Contemporary Fiction', a 15 minute essay slot which explores the complex intertwining of autobiography and fiction, the blurring of selves: 'These gaps between the different versions of the self leave spaces for fictional invention'.

References are made to Lydia Davis, Paul Auster and Siri Hustvedt.

I also liked the sentence: 'Memories are revised every time we remember'.

And here on childhood and memory, a longer 45 minute programme: 'Who's Got Hold of Children's Imaginations', writer Patrick Ness suggests that writing is 'the novelist's way to pin down the world and . . .  contain anxiety'. (8.30 mins)

Lou Reed, Doris Lessing and Lionel Shriver

I felt sad about Lou Reed, 71 is not old (especially as I am approaching 50). You feel sad not only for the (at times, grumpy) man, but for the person you were when you listened to his music. Transformer was an album I listened to countless times with my first boyfriend in early 80s. We were together for five years. I can still see us taking the album out of the sleeve to put it on the record player. He lived in a 'rough' area and his dad was a communist. He'd shout upstairs, It's time Nasim was going over the road, and  the boyfriend would  dutifully walk me home. All of them are dead now, the druggy boyfriend, the father and Lou Reed. In that order.

I've just started Doris Lessing's The Memoirs of a Survivor, it's been yellowing on my bookshelves, I've no idea when I got it. I'm only 35 pages in but love its strangeness and clarity, and Hugo the yellow cat/dog. Am smiling that her character smokes one cigarette every day, one of the characters I'm writing just now does too - her luxury in one dreadful day after another. These coincidences always happen, and are always going to happen, but just so you know I'm not nicking from Doris. (I met a woman once who smoked one cigarette every New Year's Eve.)

I'm having an eye saga again, no uveitis, thankfully, and touching all the wood in the world, every single tree, but the pressures have risen again, no idea why as there is no inflammation, and I stopped using steroid drops two years ago, but the pressure-lowering drops do not agree with me, they cause eyelid swelling - most eye drops do in my case, and ME can make you especially sensitive to drugs - which is just not on. And my poor eyes are dry as stones. When you have an opthalmology appointment now, they phone you a week before and you press this key and that  key to confirm. I'm always scared I make a mistake, but I love our NHS and would happily press keys every day to confirm.

And speaking of eyes, am very tempted to say to Lionel Shriver, Dry your eyes, Lionel. Also tired of her and Jonathan Franzen badmouthing social media, they don't understand that many writers use it intelligently and creatively. Yes, Lionel, dry your eyes.

'While my brain is not shaming me.'

Last week, I took my Danish stepdad to an SNO concert at the UsherHall for his 84th birthday. A hop and a skip from me. He loves classical music, knows much more than me, though has forgotten most of what he knows. It's well-documented that music is beneficial for people with dementia, it seems to unlock memories (I've started visualising dementia as having a huge padlock around your head). Whenever I am with him now I automatically take his hand or link in to his arm. He always tells me that he can't walk fast these days - he has completely forgotten that I can't either, and his pace is perfect for me. 

The conductor was Danish, Thomas Søndergård. My stepdad told me how to pronounce his name and when he came onto the stage he said,  not quietly, There's Klaus.  It’s not Klaus, it's Thomas, I whispered back. I had the programme on my lap and he must have taken it about ten times during the concert and read it and handed it back to me. He also had his walking stick between his legs, propping up his hands periodically. I kept an eye on the stick, afraid it would fall and clatter. I felt like I was doing my own conducting, making sure things would stay calm. I kept looking at his knees, he was wearing his new brown cords, so dapper! 

If I sit for more than twenty minutes I get vicious pins and needles, so I kept moving my feet, subtly (I hate fidgeters myself and want to stab them). I held my stepdad’s hand off and on and kept looking at his face to see his responses to the orchestra. At times, he seemed transported by the music, at times, he was not focused at all, looking around the hall. He kissed the side of my head a couple of times.  During the Mendelssohn, he turned to me and said, not quietly, Good pianist. I gently said Ssh, and he said, twice, They can’t hear us. I suppose he had a point. And the pianist was wonderful. I was fascinated by the whole orchestra, their arms, all those arms,  violins and cellos, all that lactic acid. I can’t see this kind of thing without marvelling at the ability to sustain movement without utter exhaustion. 

At the interval I’d pre-ordered a wee Glenmorangie for my stepdad, and the bar, standing only, had kindly put two seats aside for us. My stepdad was happy, but asked if he could have ice in his whisky. He has never in his life taken ice. On the way home, I asked him if he had enjoyed himself and he said, Up to a point. He enjoyed the Mendelssohn but found the Brahms finale 'a bit too fierce'. We both loved the second movement. Later, he said to me, While my brain is not shaming me, can I thank you for the lovely time you gave me? He is still aware that he has memory problems and will sometimes knock his head with his fist in frustration. He had already thanked me several times and will do so again the next time I see him.  I loved my evening out with him, I had a gorgeous time.

On the same page

I saw Dr Nigel Speight, retired consultant paediatrician, speak yesterday afternoon, it was a joy to listen to a doctor express such openmindedness and curiosity and compassion about ME. He was on the panel of the International Consensus Criteria 2011, so it is not surprising he is such a great advocate. It was frightening to hear what some children with severe ME are being exposed to in terms of psychiatric assessments. Shame on all of those assessors. This from an ME conference in Northern Ireland in August gives a flavour of what he was saying yesterday.

(Interesting too that when he first got involved in ME in the mid-1980s in Durham he was seeing a lot of Coxsackie, which of course is the virus that triggered my own ME.)

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So Eleanor Catton has won the Man Booker for her second novel The Luminaries, hugely impressive at 28-years-old, her acceptance speech was gorgeous, though I have to say the book itself does not appeal to me.  I don't think it appealed to Robert McCrum either, who wrote this, a bit uncharitable I think,  before the prize was announced. Still, passions run high when it comes to the Booker.  I did agree with him about the Ozeki and my mother liked it even less, she left me a message on Tuesday night saying, Thank God that awful book didn't win (I'd persevered because it was Booker-shortlisted and I believed it had to redeem itself at some point, she persevered because my stepdad had given it to her for her birthday, which means I had given it to her as I choose all my stepdad's gifts for her now, his dementia is, of course, worsening).

 In this Guardian interview, I like Catton's comments:

It is the peculiar constellation of her age, gender and the particular nature of The Luminaries that has, she believes, provoked "a sense of irritation from some critics – that I have been so audacious to have taken up people's time by writing a long book. There's a sense in there of: 'Who do you think you are? You can't do that.' Something else related to that is to do with the omniscient third person narration of the book. There's a feeling of: 'All right, we can tolerate [this] from a man over 50, but we are not going to be spoken to like that by you.'"

In my current writing project, am wrestling with 3rd person omniscient myself, though I will soon be as old as those male critics. But it is a challenge and I will hopefully get there  (I like that much is made of the ten year gap between both Ruth Ozeki and Donna Tartt's last books - for those of us who have horribly limited energy, ten years are nothing.)

 I also enjoyed dipping into this timeline of the Booker, the backstage gossip.

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Very long novels can be off-putting, and Cornflowerbooks has written a post asking if we are discouraged from reading books  because of their length (I'd say yes).  Still, I am keen on reading The Goldfinch, though have not been able to get into Donna Tartt before. I loved her on The BBC Review Show last week,  her clarity and confidence. When Kirsty Wark suggested that secrets were at the heart of all of her books, she replied that secrets are at the heart of all novels. This I loved. And while Kamila Shamsie (above) raved about The Goldfinch, Julie Myerson was not impressed at all.


And if there were a Booker 2013  for ME doctors, I'd give it to Dr Speight. He has helped children with  ME enormously (I think he said he had seen almost 600 cases nationwide over the years). With fiction you can argue whether a book is good or bad, it is subjective. Medicine, of course, is not always black and white either: experts can disagree, have conflicting views on the best treatments. That is different though than manipulating a neuroimmune illness, turning it into a psychiatric illness, moulding it like Plasticine, as the Wessely school have done since the late 80s. Dr Speight began his talk by apologising for the medical profession's treatment of people with ME. You know you are on exactly the same page when a doctor does this. We need many more like him, those who are passionate about the pursuit of truth.

More on Dr Speight's career here,  scroll down to see.

A Tale For The Time Being, some thoughts

I have only read one of the Man Booker-shortlisted novels and am afraid I was rather underwhelmed. Here is my recent Goodreads review of  A Tale for the Time Being by Ruth Ozeki. Even some of those readers who loved the book and gave it 5 stars seemed to find the sections narrated by 'Ruth' to be a little dull. I really was disappointed in this novel but have tried to highlight the positives as well as the negatives - it is always easier to write the negative stuff when talking about a book - or film you - didn't love.

'Everyone must leave something behind when he dies...'

I came across this wonderful Ray Bradbury quote today:

Everyone must leave something behind when he dies, my grandfather said. A child or a book or a painting or a house or a wall built or a pair of shoes made. Or a garden planted. Something your hand touched some way so your soul has somewhere to go when you die, and when people look at that tree or that flower you planted, you’re there.

It doesn’t matter what you do, he said, so long as you change something from the way it was before you touched it into something that’s like you after you take your hands away. The difference between the man who just cuts lawns and a real gardener is in the touching, he said. The lawn-cutter might just as well not have been there at all; the gardener will be there a lifetime.

Ray Bradbury, Fahrenheit 451

America and the Man Booker

I haven't really given it much thought - whether America should be in the Man Booker - though am probably more against than for - but I like meandmybigmouths's thought no.10.

Have just started one of this year's shortlisted, Ruth Ozeki's A Tale for the Time Being. I can't say I love it yet, but books don't always reveal their strengths immediately. I certainly want to keep reading it.

And delighted to see this great new review of The State of Me up on the Booksquawk review site.