A sight for sore eyes

Am boring myself rigid with all this ME talk last few days, I'd much rather talk about books and writing, and not be in tears, but the quackery and fuckery MUST be challenged, so that we can have peace to live our lives. Really. And this is just too gorgeous not to post: 

Myalgic Encephalomyelitis: International Consensus Primer for Medical Practitioners 2012

A wee snippet:

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.

See how much progress scientists and doctors can make when the lunatic fringes - yes, it's unpleasant to be unfairly labelled, isn't it? - Wesselyites, be they doctors, journalists, or members of the public who swallow any narrative presented in a newspaper article - stay the hell out of it!

The Primer link is really worth looking at, it is easy to read, lovely colours, not drab and clinical. It explains why everyone gets so upset.

Thank you.


* And a lovely new review of The State of Me. I like that Katie recognises the writing of  it half killed me. I'm not sure that everyone does.

Six gold medals

Our sodden little nation got six gold medals yesterday, three in athletics, I felt rather proud. I was hoarse screaming for Mo Farah and cried when he won. Also had tears when Jessica Ennis was presented with her medal, and earlier on, I just caught the lovely velodrome girls winning the women's team pursuit, all under 23, and I mused, for a moment, that velo-gubbed was half-Olympic, in name at least.

*And Andy Murray winning gold this afternoon was just gorgeous, especially after disappointment of four weeks ago at Wimbledon!!!

** Usain Bolt has won before you even have time to cheer him. As I've said before, I rarely watch sport and was not very interested before Olympics started, but you get pulled in just by the sheer talent and spectacle of these athletes and you grin and weep with joy.

'Birth of a book'

Wonderful: old-fashioned book printing, almost makes you want to throw away your Kindle!

A crow & a yoyo & a bomb

My 10-yr-old nephew is fast approaching the 'shrugging offness' of a teenager but when I congratulated him on Skype on his inter-school chess trophy he was beaming and ten again. The wee one - seven - always exuberant - hopped up on the computer desk and gave me a demo of the crow (yoga). Then he showed me a drawing - you have to add things to doodles - and said, What is the man throwing? It looked like a yoyo. A yoyo? I asked. No, he replied. A bomb. B-o-m-b. I didn't  ask him to spell it. Then we talked about underwater dogs and the Scale of the Universe. Then my sis-in-law lifted the cat up to say hello, she is not fond of me (the cat) and goes rigid if she thinks I'm actually there. 

Just lovely

Greenwords told me her wonderful news just before Christmas, I was overjoyed for her and her husband. She has now blogged her news and I was in tears reading what I already knew. Could not be happening to a lovelier person. She is a fine  writer too.

How to draw a wolf

I just have to post this, it is so lovely.

Silent Night & Irn Bru

I can't listent to Silent Night without crying, and I love this version by Scottish band Glasvegas.

And a wee watch of the 2006 Snowman Irn Bru  advert never goes amiss, just gallus and wonderful (though the stag and the view of Eilean Donan castle makes me want to cry too).

The difference an 'o' makes

I mistyped 'window' in an email and wrote 'wondow', didn't realise until later. I'm extreme in my hatred of typos but when super-wrecked I don't check. It struck me then that wondow is so utterly different from window, so utterly lacking in meaning, but what a lovely, balanced word.

Parody

I almost felt like I'd myself turned into a lavender plant when I put this round my neck such was the headiness and soothing. And it's a beautiful colour. I had a cup of organic peppermint tea at same time. I know, almost a parody of alternative medicine. But it felt good. (And I got it for almost half the price, locally.)

Moon

It is not a good time - especially in the UK - to have the illness known as ME/CFS, we are surrounded by grotesque characters, it feels like being in a corrupt fairytale, where the baddies are winning, and the ill people are losing. It is demoralising to say the least. Still, I try to focus on the small, good details in my life, I always have done, even during my worst times of illness. My nephews were at my mother's this weekend, it was sunny and warm, wonderful. In the evenings, we read TinTin together, I was Professor Calculus. I have never read TinTin before. And last night, the moon was beautiful.

Lovely

This from Muriel Spark's The Prime of Miss Jean Brodie, which I recently read for the first time.

'. . . It was then that Miss Brodie looked beautiful and fragile, just as dark heavy Edinburgh itself could suddenly be changed into a floating city when the light was a special pearly white and fell upon one of the gracefully fashioned streets. . . .'

Violence

I love the violence of ice hockey.

Also

Also cheers me up when I get an email from a stranger - who has severe ME - thanking me for 'speaking out with courage and integrity'.

'Music for Gaza'

A six-month-old music school in Gaza was bombed during the siege. Dutch charity Music in Gaza will help rebuild the school when possible. This is a lovely short film of an imaginative concert organised by La Vie Sur Terre last year in Bethlehem. The project was called Carried by the Wind and musicians performed on rooftops on both sides of the Israeli security wall.

Absolutely Fabulous

My hope is TSoM will appeal to a wide range of readers because it is quirky; those with ME will shiver with recognition, and those without will learn something.

Great to see the launch listed in the ME Association events - they will review the book in October. InvestinME will mention it in their next newsletter. I got a warm email from them, they enjoyed the book immensely.

A review here from another blogger-writer, Sally Zigmond. Her thoughts are interesting, she too enjoyed the novel but felt it should have been marketed as fictionalised memoir - I won't get into that debate again except to say I am reading Hanif Kureishi's My Ear at His Heart, and I smiled at his father's reply to an agent who'd suggested he (the father) re-submit his novel as memoir to increase the chances of it being published. His father 'continued to argue it was fiction' and refused.

Mell D is loving the book, took it to the pub and showed her friends. Jude fell in love with Ivan and couldn't put it down. And Cusp has put a review on Amazon, thought it may not have appeared yet... People have been telling me they love the dialogue with a stranger, peppered throughout the book. Cusp emailed that she imagined the stranger to have the voice of Joanna Lumley. In my head, the stranger has always been a man, but Cusp hears Joanna Lumley.

Fabulous. Absolutely fabulous.

Thank You, Clare & Caroline . . .

This is a long post, please bear with me. I have tweaked and updated it over the months/years.

I'm not given to self-pity, but I can truthfully say that having ME has fucked up my life (I became ill in autumn 1982 after contracting the Coxsackie B4 virus when I was a student - after over a year of illness I was diagnosed with ME by a consultant neurologist). It has been virtually impossible to establish a career. I am probably then doubly delighted that Clare Christian at The Friday Project wants to publish my novel, The State of Me, the story of how ME – 'yuppie flu', an illness few people believed in during the 80s – impacts on student Helen Fleet's world. While all her friends go on to graduate and have careers in London, she is forced to return to her parents’ home, bedridden with vile symptoms that doctors can't explain and often don't believe. She becomes a still point while life around her continues in a blur. The book is unashamedly autobiographical, but it is a novel, not a memoir, and I'm so happy that Clare responded to it as such.

I had a huge impulse to fictionalise the illness (truth comes more easily as fiction) - I consciously didn't want to add to the ME memoirs/self-help books already published (useful as they are). I hoped, through fiction, to make the subject more accessible, make it 'sexy', and most importantly, dispel the myths. There is still huge controversy and misinformation about the condition, sufferers are still marginalised, not really believed. Biomedical research in the UK is woefully under-funded. Sometimes, I feel we are the Palestinians of the medical world, our voices being ignored by those in power, those who have a vested interest in not listening, making up their own truth about us. As people with ME we have no state, we do not belong.

I'm happy to see Mischa Hiller, author of Sabra Zoo, echo the Palestinian analogy here (scroll down to Common Reader interview). It may seem like an extreme analogy but I think most people with ME would agree, especially in light of the horribly flawed recent draft NICE guideline. (This guideline was officially published in Aug 2007. A judicial review of the guideline took place in Feb 2009 at the High Court. Tragically, the case was lost. The guideline has been roundly condemned as 'unfit for purpose'.)

The narrative was in my head for a long time, it started as a (very) long short story in late nineties (I'd had some stories published and been shortlisted for a couple of short story awards over the years). I didn't think I had the stamina to write a novel, but slowly, slowly, the book emerged, the crucial thing being that I was under no pressure to write it. My illness means that no activity can be sustained, and overdoing it results in major relapse, or worsening of symptoms, to be avoided at all costs. Though exhausting, I found the process of writing the book hugely cathartic, as well as creative, and I was getting positive feedback on the quality of the writing ('clear, gorgeous prose' from one agent, who sadly had changed jobs by time the book was finished). Weeks - many weeks - could go by where I did no writing at all, it took me almost seven years, but I was determined to get the novel - and the message about ME - out there. I knew this would be impossible without an agent, and I went through the usual agonies of finding one. I can't count the number of emails I had to send out, a gruelling task, but was ecstatic to finally nab one who found the book 'compelling, charming and perfectly formed'. However, she was adamant she wanted to pitch it as a fictionalised memoir rather than a novel. She gave me time to think about it and although I was very opposed to this pitch - I knew my book was a novel not a memoir, and apart from anything else, as a reader I would find it rather odd that someone of mixed race would write a memoir that totally excised her roots - allowed myself to be seduced: agents are like gold dust and when you find one who gets your writing you don't want to let go.

She submitted straight away to the 'big' editors and publishers. Most of them greatly admired the writing (though not all, that is to be expected and fair enough).

One enjoyed 'the spiky candour and immediacy'. Another said it was an 'extraordinary memoir'. Hmm. Another said: 'She evokes the period so well - growing up in the Thatcher years, the student culture - and the love story is beautifully portrayed. She writes movingly about living with a chronic illness that is misunderstood by so many people but we are concerned that it may be tricky to publish. The best-selling 'sick lit' seems to originate from high-profile journalists writing about themselves or those close to them and this is a far more literary and subtle take on things, which makes it far harder to pitch in this competitive market, so I'm afraid it's a regretful pass...'

I was learning that it is not enough that one editor loves the writing, but that the whole marketing department has to approve it too. The agent felt she had done as much for me as she could and suggested I approach small presses on my own (sadly, most small presses now require agented submissions). This was a harsh lesson for me.

It's all so exhausting and disheartening. And contradictory. One small press told me they 'rarely get such well-crafted writing through the door', but they regretted their list was not the best platform for my book. Another I contacted had a receptionist who told me snootily 'they only considered agented submissions'. In the last year, I had stopped actively looking for a publisher - I felt so ground down by it all, the months and months of waiting to hear... it was truly becoming detrimental to my health to pursue the book any longer. I was content now just to post extracts on this blog.

Six weeks ago, I got a surprise email from Clare, asking to see the manuscript. Caroline Smailes had emailed her about my book, I was so touched by Caroline's generosity of spirit, and when Clare's email came in saying she wanted the book, I was not able to fully absorb the news as I was naturally geared up for another rejection. That she said yes was a bit of a shock - a good shock. I am thrilled. So are my family and friends. I know not everyone will like my book, that is the way of it - I often can't finish books that others love - but the point is, it will be out there, it will have the possibility of being read. So thank you, Clare, and thank you, Caroline.

Update* The Friday Project went into liquidation at the beginning of 2008. It was a dreadfully unhappy time for all concerned. Thankfully, my precious book survived - not everyone was so lucky - and crossed over to the new imprint at HarperCollins. The State of Me was finally published in August 2008. ** In early 2015, The Friday Project imprint wound down, but The State of Me continues at this time to be published by HarperCollins.

Soup Made From Flowers

Yesterday, we made soup in the garden. This involved filling bowls of water with leaves and gravel and blue flowers and a dead bee. (The bee was already dead, there was no cruelty.) My cousin's five-year-old garnished the soup with rosemary, and it looked quite lovely. My nephews have gone now, every bone, every muscle aches, I feel stretched on a rack. For the first time, my older nephew asked my mum why Auntie nmj had to rest so much, my mum said 'cos she is a sick auntie, and I said to her later, you shouldn't tell him I'm ill, he'll be scared of me.

A New Fridge & a Ceasefire

This has been a nice start to the week - a new fridge and a ceasefire. The new fridge is so quiet, in fact too quiet, and I am almost afraid it's not working properly. I got so used to the gnashing of the old one.