Some articles on Pakistan election

Have been fascinated by the election in Pakistan (though I still get a bit confused with all the parties). Some great articles and different perspectives:

Writer Mohammed Hanif in the Guardian.

Journalist Declan Walsh, who was, ludicrously, expelled from Pakistan last week.

Writer Bina Shah on her blog.

Muhammad Idrees Ahmad in London Review of Books.

And this was before the election, a long article by  Mira Sethi which I still have to finish, but  gorgeously informative.

When we visited Pakistan in 1974, Zulfikar Ali Bhutto would have been prime minister, of course I was just a child and had no idea of these things.

Reading from a Chesterfield with Lister looking on...

Last week, I read at the Dissecting Edinburgh 'Writing Medicine' event in Surgeons' Hall, alongside Alison Summers and Tracey Rosenberg (their websites are listed in the previous link). Alison is writing a novel about Pick's disease, and Tracey, a novelist, has also published poetry about cancer. The venue was changed from the pathology museum to the library and what a gorgeous library those surgeons have!  I had a wonderful Chesterfield armchair and  Lister looked down from his painting behind me  - I felt protected. I should say I was not on my best form, I was wrecked  even before the reading - I was in bed until four o'clock -  but that lends to the authenticity, I guess. Alison and Tracey are both great performers, I loved their energy. This is only the second time I have read from The State of Me in public - though I did read a short extract on the BBC Alba documentary 'Toxic Tiredness' in 2011, but that felt different, the audience was not yet present, I read to a camera man at my kitchen table (you can be more sassy in your kitchen). I was saying to friends, after Surgeons' Hall, that at my Waterstone's launch in  2008 - it still had an apostrophe then! -  it felt very much like I was reading fiction aloud,  my precious novel out at last, after all the hype and craziness before publication. This time though, I felt almost tearful when I was practising the extracts beforehand - it felt like I was reading about my life - Helen Feet's plasma exchange in the eighties, and  I felt sad.  But what a treat to have read in Surgeons' Hall. And lovely to see some of my friends there and new faces too, though it is a big tangle of colour when everyone is focused on you. My head gets that inflated/pumped up feeling and I have to take myself away and untangle the threads.

* Delighted to hear from Alison that she loved The State of Me, which she has just finished reading.

The power of narrative (for good and ill)

I am increasingly interested in why we read stories, I think it might make you a better writer if you understand the seduction of narrative (though maybe it is better not to think about these things at all, and just write).  I've been dipping into The Storytelling Animal by Jonathan Gottschall:  The riddle of fiction comes to this: Evolution is ruthlessly utilitarian. How has the seeming luxury of fiction not been eliminated from human life? My stepdad continues to bemuse us with narratives based on false memories - and what else is narrative if not memory? - he told us at the weekend that he had travelled across India by train in the nineties. He also referred to dinner plates as 'big flats', which is just poetry. I've been horrified at the pre-election violence in Pakistan (my family on my father's side live in Karachi). This clip from a couple of weeks ago is unbearable to watch, capturing a young boy's trauma after a bomb has gone off in Peshawar.  I cannot claim to understand much of the political narrative that is playing out in Pakistan at the moment, but my heart sinks at the seemingly  endless cycle of violence. This is an interesting article  by doctor and writer Qanta Ahmed, who lives in New York. She explores the twisted, nihilistic  narrative that seduces young men like the Boston bombers - there is no motive, just narrative which brings 'meaning' to their senseless and cruel  acts.

Too much lactic acid in her legs

In my novel,  the main character Helen Fleet has a series of sarcastic/humorous exchanges with a stranger. Describing how she feels after trivial exercise (remember this is the eighties), she says she has too much lactic acid in her legs.

This has been validated in research reported in the Times the other day:  Professor Julia Newton's study found that PWME produce up to 20 times more lactic acid than healthy controls: 'The finding shows ME leads to a cascade of physical changes right down to the cellular level.' Consultant neurologist Professor Peter Behan, of course, discovered muscle/mitochondrial abnormalities in 80s and 90s. (I had a muscle biopsy in late 1983 - and EMG and specific Coxsackie tests - to aid his diagnosis. He told me I had a 'full house of abnormalities'.)

It is indeed heartening to see biomedical findings being reported responsibly in mainstream press. We have become so used to pejorative, ill informed articles, and PACE nonsense. I think - I hope! -  we are actually now, in the UK, looking at a horizon of proper research, where my illness will be granted the respect it has been denied for too, too long.

The biopsychosocials' position in denying  reality - conflating ME with 'chronic fatigue' for decades - trying to label a neuroimmune illness as a mental illness - is simply untenable. They will be seen to collaborate with serious scientists, then they will hopefully retreat from the scene altogether. I would prefer the 'biopsychosocialites' were nowhere near this new 'big tent' of research, but at least we can keep an eye on them, hopefully they will stay in a corner and practise their witchcraft quietly. This conflation of physical illness with mental illness has helped no one. I think the truth has finally dawned on them. They will, of course,  never admit they were wrong about ME. How could they?

This  new Science Media Centre collaboration is nicely explored here  by  Invest in ME.

I welcome all research into properly defined ME, and sincerely hope we are turning a new page. I don't want to have to live another thirty years without effective therapies.

* A good summing up of the state of play here by Simon McGrath.

Fiction, memoir and consensus criteria

Charming article from Chimamanda Ngozi Adichie  on fiction and memoir, she says: 'I long for a new form, a cross between fiction and memoir...' and speaks for us all when she says that 'fiction is more honest than memoir'. This is exactly why I wrote The State of Me as a novel and not a memoir, I wanted to get closer to the truth, as I described here. Also, I love that she is so laidback about fiction and memoir overlapping.

I'm re-reading 'On Being Ill', Virginia Woolf's brilliant essay in which she ponders the lack of novels about physical illness: 'The public would say that a novel dedicated to influenza lacked plot ...'.  It made me think of this extract from chapter eleven of my novel:

stranger   What did you do today?

me              I made cheese scones and put a dead bee in the bin. 

*

Last week, I received a few printed and bound copies of The International Consensus Criteria 2012 from Invest in ME, and on re-reading, am struck again by how important such a document is:

Problem
The label ‘chronic fatigue syndrome’ (CFS), coined in the 1980s, has persisted due to lack of knowledge of its etiologic agents and pathophysiology. Misperceptions have arisen because the name ‘CFS’ and its hybrids ME/CFS, CFS/ME and CFS/CF have been used for widely diverse conditions. Patient sets can include those who are seriously ill with ME, many bedridden and unable to care for themselves, to those who have general fatigue or, under the Reeves criteria, patients are not required to have any physical symptoms. There is a poignant need to untangle the web of confusion caused by mixing diverse and often overly inclusive patient populations in one heterogeneous, multi-rubric pot called ‘chronic fatigue syndrome’. We believe this is the foremost cause of diluted and inconsistent research findings, which hinders progress, fosters scepticism, and wastes limited research monies.
 
Solution
Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease. Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name. Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.

*

 

I wish every GP in the land had a copy on their desk, would stop them writing derivative nonsense like this  (annoys me more as Margaret McCartney is a Glasgow GP, perhaps she thinks consultant neurologists at Southern General routinely gave plasma exchanges for somatisation disorders in 80s?).  Her article is from 2008, maybe she has educated herself since then about biomedical abnormalities, one can only hope. 

The ME Association is, in fact,  sending out educational material to GPs this May. Patients have given names of practices they wish the booklet to go to. Education of GPs is, of course, paramount to stopping the  lazy perpetuation of myths and fiction that has done so much harm to people with my illness. Am curious: are there any 'meeja' doctors in UK who write responsibly and accurately about ME?  I honestly don't know of any.

Margins, B-cells behaving badly, and a wee dance

Interesting post  - and discussion - on medical humanities and literary medicine from the Centre for Medical Humanities Blog. And a wee reminder that I'm reading extracts from The State of Me at Dissecting Edinburgh event  'Writing Medicine'  on 2 May. I  often say I live on  the margins of the writing life, I can't run around promoting my book, so it's lovely to be joining the mainstream for an hour or two. Is the first time I've read from the novel since 2008. Tickets free, though I'm told there are not many left. The reading will take place in the fascinating pathology museum in Surgeons' Hall.

Is ME all down to B-cells behaving badly? Rituximab research of Norwegian doctors Mella and Fluge reported in Discover Magazine. Good article, but the oft-used photo of a model in crisp white shirt looking like she has a bit of a headache to represent neuroimmune illness is beyond annoying.

Very encouraging to see Norfolk and Suffolk standing up for the neuroimmune model, they are pushing for CFS and ME to be treated separately, and advocate a biomedically driven, consultant-led clinic rather than the currently flawed CBT/GET 'fatigue' clinics (their clinic was in fact biomedically led until 2005). Of course, the Scottish Public Health Network recommended the same, but we unsurprisingly got the Lothian ME/CFS clinic instead.

At the weekend,  after reading this article, I discovered the Wagah border-crossing ceremony, a huge tourist attraction, where the Pakistan and India flags are lowered every day, and the border closed, before sunset. Michael Palin has called it 'choreographed contempt', and there is more than a touch of Monty Python to the whole thing. Gloriously camp, though, obviously, serious undertones.


*Had an email today from a reader whose partner has ME. I loved this: 'Great read, shit illness, be proud for looking it in the eye and spitting'.

Poetry of dementia (2)

Last weekend, I was googling Greenland just to see if I could find anything of interest for my stepdad (he grew up there in thirties and forties), and we came across this article from the Independent on how they can now grow vegetables in Southern Greenland because of warmer temperatures. I printed the article and he read it a couple of times. Where did you get this? he asked, fascinated. The internet, I replied, everything is on the internet now. That's great, he said, I didn't know the internet was interested in Greenland.