Tuesday, 24 January 2017

A change of mind...

Fiction titles are sometimes changed to be more nuanced and suit the country of publication. For example, Miss Smilla's Feeling For Snow by Peter H√łeg, translated from the Danish - I gave it my dear late stepdad in 1993 - was published as Smilla's Sense of Snow in the USA. Smilla - a half Danish scientist with an Inuit mother -  has 'a feeling for snow', which is helping her solve the death of an Inuit child who is her neighbour's son in Copenhagen.




What may be more surprising is that the UK title of Suzanne O'Sullivan's popular-science book It's All in Your Head (2015) has been changed to Is it All in Your Head? for  recent  publication in USA.


This title change from bold declaration to interrogative has, I'd bet, nothing to do with British/American English differences but more suggests that publishers are now well aware of the fire O'Sullivan has come under for her ludicrous, irresponsible and harmful chapter 'Rachel', in which she frames ME/CFS as psychosomatic. This 'subtle tweak', of course, does nothing to ennoble the content, but does highlight a lack of certainty, which is surely a little embarrassing for a prize-winning science book. We can only hope that the next tweaking will be Is it All in Suzanne's Head?

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This is a very good recent paper from Leonard Jason and Julia Newton and others, which explains the differences in criteria between 'chronic fatigue syndrome' and myalgic encephalomyelitis - signalling how crucial it is to know which disease we are diagnosing/studying (Suzanne O'Sullivan would do well to read it). Ramsay-defined ME - also known as classic ME - has the most physically impaired patients - and to fit the criteria you must have: acute onset with three major symptom categories: post-exertional malaise, neurological manifestations,  autonomic manifestations. Of course, I have all of these, though in the eighties, we didn't yet call the tell-tale burning/exhaustion in muscles 'post-exertional malaise' (PEM), we didn't know not being able to stand was 'orthostatic intolerance', and we didn't know not being able to remember the names of neighbours we had known for twenty years was 'brain fog' - we just felt as if we were dying.

Saturday, 7 January 2017

On fathers: Om Puri, Hisham Matar and some short writing

Saddened to learn that Om Puri has died aged only sixty-six. I loved him, of course, as the flawed Pakistani father in East is East. And as the taxi driver in My Son the Fanatic (based on a short story by Hanif Kureishi). I watched him more recently in Satyajit Ray's 1981 film Sadgati/Deliverance - Puri, in his early thirties, gave a devastating performance as an 'untouchable'.

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The last book I read in 2016 was Hisham Matar's The Return. Anne Enright describes it as a terrible and lovely book, and it is: the writing is lovely and the truth is terrible, the knowing and not knowing the brutality of his father's death at the hands of the Gaddafi regime in the nineties. I underlined several passages as I read, words that stay in my head: 'I have always wondered if it is possible to lose your father without sensing the particular moment of his death'.

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Happy that 2017 will see with the upcoming publication (print and digital) of Bath Flash Fiction anthology - I had a story longlisted almost a year ago - 'A widow with a bowl of wine and lipstick coming off'. This flash was inspired by seeing my dear stepfather in the funeral parlour in February 2015, the image still shocks me, though it was one of peace, but nothing about it was real, nothing.

I've not written much flash fiction, I've read more, but I think flash titles are very important, they act like a hinge for what's unfolding. I see flash fiction like fireworks - small with a beautiful punch - but still demanding time and energy in creating. Flash lends itself well to low energy writing. And as you tweak even 300 words,  you know more than ever, as you shift the words around in such a small space, how arbitrary it all is.  The story was accepted by an online literary journal at the same time as it was longlisted and I had to decide where I wanted it placed. I look forward to seeing my words - which with time passing now seem 'remote'  - see the light of day.

Wednesday, 7 December 2016

Progress...

This is great news from Griffiths University in Australia: the National Centre For Neuroimmunology and Emerging Diseases (NCNED) has been awarded $4 million dollars to research ME. In this short clip, Professor Staines says: Exercise should be contra-indicated in Chronic Fatigue Syndrome as it worsens the clinical condition of the patient and should be avoided.

This, of course,  has been corroborated by patient testimony (though largely ignored) for decades. As my fictional character Helen Fleet, who has burning muscles at the drop of  hat, says: 'she has too much lactic acid in her legs'.

There is very fine research afoot -  the report from  the IACFSME last month in Florida.

And this: five teams of scientists awarded funds by Ramsay Award Programme.

This too: a great blog on the ethical failures of the treatment of ME/CFS in BMJ from Dr Charlotte Blease and Dr Keith Geraghty (a researcher who himself has ME). I love the term 'a caste system of illness' - I often speak of the 'casual racism' towards ME patients as if you can say what you want - any minor jab or slight is 'allowed' - because you don't really mean it (and also have no idea what you are talking about).

And Berkeley journalist/academic David Tuller, who has done so much to expose the PACE circus, is now illuminating FITNET in all its flawed and awful glory (Prof Esther Crawley's FITNET was excessively and misleadingly - unsurprisingly - reported in UK media a few weeks ago as it it were a cure for cancer).

In my early fifties, ill now for thirty-three years, I find myself even more hurt and angry at what people with ME have had to endure because of wilful ignorance. I hope with all my heart that the next generation of ill, young people will not have to suffer the insults we did and have effective treatments too if not an actual cure. (It beggars belief that in 1984, when my own diagnosis was confirmed with abnormal muscle biopsy and EMG, we had the nuts and bolts, right there, to build upon, but research was wholly hijacked in UK and taken in completely the wrong direction by 'belief-led' psychiatrists, one in particular, at the end of the 1980s).

I seem to collect inflammatory responses. After a cough from hell in August/September, I now have costochondritis, which is inflammation of the rib cage. One of the drugs I have tried is Nefopam but it cloaks me with nausea and makes me totally out of it  (I got on the wrong bus a couple of weeks ago and have probably now bumped into every 'obstacle' in my flat). I had never heard of costochondritis but it's interesting that those with fibromyalgia seem to be prone.

And something beautiful and cheering, a cat on a radiator, an iPad painting by David Hockney.



Friday, 18 November 2016

The world is fucked and books are all we have

The world is fucked and books are all we have. When things are tough, I look for illumination in poetry, nothing has helped, but then a few days ago someone tweeted 'Apes' (1990) by Adam Zagajewski.

 Apes

One day apes made their grab for power.
Gold seal-rings,
starched shirts,
aromatic Havanas,
feet squashed into patent leather.
Deeply involved in our other pursuits,
we didn’t notice: someone read Aristotle,
someone else was wholly in love.
Rulers’ speeches became somewhat more chaotic,
they even gibbered, but still,
when did we ever really listen? Music was better.
Wars: ever more savage; prisons:
stinking worse than before.
Apes, it seems, made their grab for power.

Poem by Adam Zagajewski, from Without End

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On my bedside table just now are these:



Last weekend, I read Claudia Rankine's prose-poem Citizen, which is startling and unsettling (for me, more prose than poem, but well worth reading). I often stop books for no good reason and take weeks/months to go back, it may be a concentration thing. This summer, I stopped The Vegetarian a third of the way through and started a thriller (Apple Tree  Yard by Louise Doughty, which I loved). I will go back to The Vegetarian soon (I also really liked the story behind the translation). The Blue Devils of Nada by Albert Murray is a gorgeous dipping-in book of essays and there are some gems there. I will also, of course, go back to James Baldwin (started and stopped for no good reason). Jackie Kay's Trumpet is a secondhand book passed on to me, which I look forward to.

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The Goldfinch painting by Carel Fabritius has come to Edinburgh (how sad he died aged 32), which prompted me to start my Kindle version of Donna Tartt's Pulitzer-winning novel - I've had it for two years, unread. I'm 100 pages in and love the plot, but the style is too wordy for my liking. The micro-details clutter the prose, which is exhausting to read. I recall mixed reviews at the time. Julie Myerson was not too keen. Not sure I can stay the course. I think it would make a great film though.

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A couple of weeks ago, I watched John Berger and Susan Sontag discussing the process of reading and writing in 'To Tell a Story' on Channel 4 in 1983. The discussion was part of a series called VOICES (I don't remember VOICES, Channel 4 had just started and I was at the beginning of the nightmare of what turned out to be ME). Berger and Sontag are so compelling, you agree with both of them even when they have opposing views. Their earnestness almost seems quaint now, but I was struck by their respectful disagreement with one another. They are mesmerising to watch and listen to.

And I have just discovered Scottish doctor, filmmaker and  poet Margaret Tait (1918-1999), what a remarkable woman. (‘Emily’: ‘Emily Dickinson shut herself in a room / And wrote about her pain. / She wrote too about joy’.) You can hear a recording of Margaret Tait reading 'Emily' and other poems  here on the Scottish Poetry Library website.

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And Leonard Cohen is dead, that is hard to know. Since 1980, I have loved his poetry and his music and his beauty. He was old-ish, I guess, 82, but I have so many folded-up memories that his songs unfold again. 'Suzanne' is mentioned in my novel. ('...and she feeds you tea and oranges that come all the way from China' has to be one of the most beautiful lines ever).
 
I cried last Wednesday morning when I learned Trump was elected and I cried again two days later when I learned that Leonard  had died.

Monday, 3 October 2016

Thursday, 29 September 2016

Nothing to see here, sorry to spoil the party

The PACE recovery data has been released and analysed - the results are not pretty, confirming what ME patients, their charities and advocates, and informed doctors have been saying all along: PACE is seriously flawed. It is not news that it's flawed, it has always been flawed, but the trial was spun and spun and spun to be the best thing since sliced bread, thanks, mainly to the UK Science Media Centre. I am too weary to write more, but here is David Tuller hosted by virologist Professor Vincent Racaniello. And Julie Rehmeyer, a science writer in USA, in STAT. Sir Simon, unsurprisingly, is still defending PACE, it is risible (he says he is 'sorry to spoil the party'. Such respect for a patient community jubilant that his colleagues' nonsense is exposed for the circus it is). He also has said, according to Julie's article, Nothing to see here, move along. Well, there is plenty to see. Plenty.

News of the debunked trial has been widely disseminated in USA, so far only one UK journalist has taken the bull by the horns, the headline is excellent: Exercise and therapy cure for ME is ‘seriously flawed’, but we have, of course, Peter White, the lead co-principle investigator still defending PACE - and he has enrolled his friend George the homeopath to help. The PACE gang are simply running out of people to speak up for them. The article, also, does not scrutinise the harms of GET, nor the appalling smearing and misrepresentation of patients along the way, but it's a start. The ME community is owed too many apologies by too many journalists, who simply didn't listen. And I will never understand those doctors who have spread and continue to spread misinformation - based solely on their own fragile beliefs.

*Update: Peter White  now has his swansong in the Guardian. Peter has turned into Jesus, and is now very concerned about the wellbeing of ME sufferers. He's not as smooth as Wessely (who loves the limelight) in his media outings - I have never seen such an unctuous, disingenuous piece. The comments are excellent, a real education for those who wish to know why  the science of PACE has failed so horribly. My own comment here.

The mainstream press in UK are still not picking up the story, though independent journalist Jerome Burne has written about the whole debacle here. 




Sunday, 11 September 2016

Like being in a boxing match

I'm very prone to post-cold coughs that go on forever - possibly because I have chronic sinusitis (from over-using mothballs years ago) and I can't use steroidal decongestant sprays  because of my eyes - but this has to have been the worst, almost five weeks of coughing. I had a vile summer cold beginning of July, that came and went, then a few weeks later I developed a cough from nowhere. Three lots of antibiotics and now an inhaler (which I think is helping, though I had to get a spacer, I just couldn't use it properly, all new territory for me). I am coughing much less now, but my poor ribs are still battered after more than four weeks of coughing and it feels like I am boxing myself whenever I cough or breathe deeply - the pain is so sharp and sudden. If I feel I am going to cough I have to clutch a pillow to my chest to try and cushion the blow. And even when not coughing, it can feel like having a clamp round your heart. I'm entirely used to back pain and am necking prescription painkillers (plus Ibuprofen) I use for my back for my ribs. I was hugely relieved that I got through my six-monthly eye check-up on Monday without coughing.

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The  razamatazz and spin of the PACE trial saga has also felt a bit like a boxing match.  After spending £250 000 to prevent the recovery data from being released - QMUL are finally releasing the data,  a result, of course, of the recent tribunal. There has been, understandably, celebration and much anticipation on social media: the narrative of harmful nonsense has finally been toppled.

This graph (by Simon McGrath) represents published Lancet data (2011) versus original protocol-specified data (2016): 


The graph is explained more fully  here by Tom Kindlon, an Irish patient, who has worked hard to debunk PACE. Tom has been ill for over twenty years and is housebound as a result of graded exercise therapy (GET). Aside from the appalling anti-science of PACE, it is the narrative of 'mad, bad patients' that has been so galling, as health journalists unquestioningly and sycophantically jumped on the PACE bandwagon, ('cos The Lancet said it, it must be true). The Science Media Centre is certainly culpable for the way it has perpetuated this narrative of 'militant, dangerous ME sufferers':
“Mr Matthees points to press releases from the Science Media Centre, a body working with PACE researchers, to the effect that they were “engineering the coverage” to “frame the narrative” in such a fashion to discredit those with legitimate criticisms as misguided extremists by sensationalising a small number of indefensible actions to the detriment of the vulnerable wider patient ‘community’. This has been highlighted by respected scientists, and clinicians (see p87­90/B7). Rather, no evidence of a ‘silent majority’ in support of the PACE trial has been put forward.”[1]

All ME patients and advocates have much to thank Alem Matthees for, the ME sufferer in Australia, who is currently bedridden from his efforts of challenging PACE. It is unacceptable that someone with ME would have to go through so much in order to get to the truth. I hope the PACE team are  proud of themselves.

Tom Kindlon had this to say, which made me smile.

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And thanks to @kafkaboots for telling me about Pierre Bonnard's Le Boxeur, it fits right in with this post:




More of Bonnard here, I love The White Cat too.