Books, glorious books, and a moth that looks embroidered

In the last week, the postman has brought three classy books.

I won a copy of Maggie Gee's  Virginia Woolf in Manhattan on Twitter  (Saqi Books asked which woman writer we would most like to meet, I said Ismat Chughtai). Lovely to have this gorgeous hardback to add to my bookshelves. And I very much look forward to reading (though my TBR pile is simply scary).

My publisher, The Friday Project, sent me up Charles Lambert's wonderfully titled With a Zero at its Heart. It's getting great reviews. Though as I am in the fragile process of fictionalising childhood and fathers - at such a snail's place it feels like slow motion, but I will get there, fingers crossed -  that I may hold off on reading it. This meticulously constructed book of fragmented, themed memories is very different to my novella-in-progress - but you don't necessarily want another writer's (brilliant) words to be in your head when you are writing. Though I won't be able to resist and will dip in. It's a beautiful book to touch too.

And I ordered the second edition of Dr Melvin Ramsay's 1986 book on ME: Postviral Fatigue Syndrome: The saga of Royal Free Disease from the ME Association. My original copy from the mid-80s is worn out so I wanted to update. This is such an important, informative and honest text - I just wish more doctors and health editors and journalists would read it and educate themselves. And the references to Professor Behan and Coxsackie virus in west of Scotland in 80s, obviously resonate for me.

And last but not least, I love this moth, it looks embroidered.

Fiction, memoir and International 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.

Doctors & patients & writers ...

I attended a talk mid-week on doctors who also write, a hop and a skip from me. It was a long talk, almost two hours, and I found it so hard to concentrate towards end but it was very enjoyable hearing these three medics talk about their dual lives. You do not come across writing doctors very often and I was especially interested in their concerns about self-censorship when they also have such important social roles as doctors. During the Q&A someone referenced Virginia Woolf's essay 'On Being Ill'  - she wonders why there is so little fiction written on illness - and it seemed a good point to mention The State of Me. I said I was a patient turned writer and that self-censorship can be an issue for all writers. These doctors were all charming speakers - two are GPs, one is a child psychiatrist - and I wonder what their thoughts were when I said I have ME and have written a novel about it, that I was passionate about education through fiction. I did not mention my name or the book's title, but I wish now I had taken copies to give them.

After last week's travesty of science - and Prof Malcolm Hooper has written, as always, an eloquent response - I really have  no idea how we fix the distorted narrative. I think we have to look to the rest of the world, international biomedical research.

I have remembered a BMJ podcast from 2010 where Simon talked about ME. (This was during XMRV hype -  I always remained neutral, if XMRV was the answer, great, if not, let's move on to next thing (and we know how that all turned out). However, I have personally known since 1983 that my illness is connected in some way to my immune response to the Coxsackie B4 virus. The often not very bright media now tries and twists it to make out that it's only since XMRV that patients/researchers have linked ME to a virus. And that no XMRV = no virus. Not so.)

Anyway, in this podcast, Simon speaks around 4.25 mins in about the broad/narrow definitions of the illness, which of course is the whole crux of the conflation and chaos, though he does not seem too concerned with the chaos. The patients Simon sees/researches apparently get better with CBT and graded exercise therapy (GET), whereas those of us with my illness get worse with exercise, and I will keep saying this to those who will not listen. It struck me also that he had spoken back then about the need for other researchers to get involved, and 24 mins in, sounding very relaxed, says: 'Other disciplines should get more involved because CFS is under-researched' ...'and you'd be surprised to learn is actually  a very enjoyable and  very rewarding area of research.'

Very enjoyable and very rewarding.

No mention of the 'acute hostility and bravery' that last week earned him the John Maddox prize. The acute hostility - and I am not questioning that threats were made, I am sure they were, and no one would want to condone this - was, unnecessarily, ramped up to unbearable degrees  last year by a hysterical media, which  resulted in an entire patient population being (further) demonised. We can only wish  that Simon had perhaps practised some self-censorship in his dealings with the media.

Of course, if you actually *know* about the politics surrounding this illness  the Maddox award video seems like a spoof, like something from Drop the Dead Donkey - a newsroom satire from 90s -  an observation made by my mother. They're all daft, she said, shaking her head when I showed her. Bloody bastards, said my stepdad - who now has dementia - and later came into the living room with a pan on his head  - he loves joking with hats - but he has always been a source of great support to us throughout my illness, especially at the beginning, the utter, utter hell.

Am highlighting again this young scientist's blog where an informative discussion went on after the Maddox prize - it makes a change to have a thread where PWME are not drowned out by obnoxious, hostile, uninformed voices. *And then there is another young medic who exuberantly denounced PWME for 'stigmatising mental illness' and told us we have to grow up. He has obviously been fed the Wessely school narrative, and nothing else, but I  hoped he would be willing to educate himself and learn there is another narrative to explore.

After my novel came out in 2008 I breathed a huge sigh of relief, I honestly thought I'd never have to defend my corner again, I felt my job was done. But when we are continually assaulted  - and it *does* feel like assault - by twisted narratives and half-truths, we have to speak up, though it is truly and godawfully  sapping.

We have to speak up. These are our lives.

*I see this page has been removed, perhaps the young medic at www.thetwentyfirstfloor.com had a rethink about being so rude about an illness he clearly knows little about...

Tagore & Virginia

One of my friends is big on Tagore and when I told him I'm into birds now he mentioned the tiny poems Stray Birds. I dipped in - really dipped in, just read fragments - but found it all a bit sentimental - almost like 326 spiritual greetings cards, the kind you find in New Age shops - though these are translations, so maybe something is lost.

This one's a gem though, number 2:

'O troupe of little vagrants of the world, leave your footprints in my words.'

And I love this, from Virginia's essay 'On Being Ill':

'Comatose with headaches. Can't write (with a whole novel in my head too - it's damnable).'

That's from the introduction by Hermione Lee, I haven't read the essay yet.

Lipstick turns into green eyeliner

ME gives me crazy dreams, cinematic, and it's a boring sin to tell your dreams to others - unless they are actually in them - but I'm telling you anyway. I was enrolled at an Italian university and needed photos, there was a booth across the road, and I put on lipstick but it was not lipstick but green eyeliner, no matter how many times I tried to smudge it off and reapply. Eventually, I said to the booth woman, I don't care, please take the photo anyway and she was not happy. I've started reading The Stranger in the Mirror by Jane Shilling, perhaps the dream comes from there. She was 47 when she started writing the book, a year younger than I am now (well, I'm only 48 and four months, I do, sadly, count the months now).

I love the cover, Shilling herself, posing naked, she looks fabulous.

I don't look my age - and I'm glad of that - though it's all down to genes and having to sleep a lot, not by being virtuous in any way. Still, I am my age and, in truth, the thought of middle-age creeping up horrifies me quietly, I think because it underlines that much of my adult life has been shaped by illness and it's honestly depressing to think back to what could have been - that's why I don't. I often think these days I have one foot in the well world and one foot in the ill world - am sure I've said this before - and I hop between them, constantly losing balance (although it probably appears that I am balancing more easily than I actually am).

I'm told The State of Me Kindle version is going up from 99p to £2.99, so if you want a bargain now's your chance (you can barely get a cup of coffee for £2.99, so it's still a bargain). My brother just gave me an Amazon voucher (he gifted me the Kindle, he's a real convert) and said - only half-joking - it's for e-books not shiny hardbacks. I've (slightly) guiltily just bought a shiny hardback cos it's not available in Kindle (and the paperback is not out 'til autumn). I've ordered 'On Being Ill', the essay by Virgina Woolf.

Shilling's book is full of lovely literary references - she speaks of the importance of the comfort to be found in reading fiction - and I was struck by Virginia's words, which she quotes: Considering how common illness is, how tremendous the spiritual change that it brings, how astonishing when the lights of health go down, the undiscovered countries that are then disclosed . . . when we think of this . . . it becomes strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature.

I was trying to say something similar here.

Virginia

Am in a very bad mood. Was kept awake by students partying in one flat. Then woken this morning by workmen hammering in another. The snow is melting, but I see more is forecast for weekend. I am exhausted, I would prefer to hibernate. I have finally started reading Hermione Lee's biography of Virgina Woolf, which I've had on my shelves for over ten years. It's a big book, 800 pages, God only knows how long it will take me to read. I love these words of Virginia: ... In fact I sometimes think only autobiography is literature - novels are what we peel off, and come at last to the core, which is you or me.