velo-gubbed legs

Post-Alba post-mortem (part two Toxic Tiredness)

2012-01-31T00:06:00.021Z

I'm not blogging about ME in February, or perhaps ever again (!), I badly need a break, so this is a quick response to Part Two, I need to watch again, my thoughts now, honestly disappointed - there was a real lack of balance this week, too much focus on emotions and depression and 'being kind to yourself', which have absolutely NOTHING to do with neuroimmune illness; also too much pro-Mickel, there should have been someone who did NOT recover with MT. It all just seemed a bit pat, and I still don't understand what MT is! I couldn't follow the steps. And I certainly don't agree with David Mickel that ME belongs to a group of 'fatigue disorders'. No siree.

It just seemed a bit cobbled together this week, there was no sense of narrative, last week's felt sharper.

Delighted for Holly, though, who had clearly been severely ill (she made me think of my friend described in below's post), and I felt she was describing the ME I once knew, sitting on the stairs to get down one at a time, cos I could not walk, but also - what role does pregnancy play in improving ME, how does she know that wasn't/isn't a sustaining factor? And how did she get to the stage from being so ill to being able to be pregnant? That seemed to be pre-Mickel, but was just skipped over completely. But hers was the narrative I wanted more of. Her experience of MT would have been more meaningful to me.

Also, if you are treating someone who also has had depression - Kim the photographer - that muddies the waters. I think from a pure ME p.o.v, we need to see MT demonstrated to work on patients who are not at the same time depressed (or afraid of becoming depressed), or pregnant (absolutely no disrespect to Kim or Allison).

We also needed more Prof Behan - we had to wait 40 mins! (and I was secretly wishing my book would have been on his shelves). Quite emotional seeing him, took me back to the days of hell, when I attended Southern General.

Interesting - he now says that stressors like strokes and some post-surgery states can also trigger ME?

Loved his chat about enteroviruses and mitochondrial damage. He is the man.

Was also a bit peeved - they said - I think - I regularly take part in online debates, I stay away from forums as much as poss! I go to MEA FB - mainly for info - and occasionally Invest in ME, that's pretty much it. I neither have inclination nor energy to argue in circles with people you are on the same side as. It sucks the very life out of you, I've learned that (see three posts ago).

So, yes, I hate to say it but I feel a wee bit disappointed, but I will need to rewatch, absorb it properly. I think I said 'take psychiatrists away from the research' and I stand by that...

Still, the role of low cortisol/hypothalamic dysfunction - is that the right term? - is interesting in ME and £5 million would perhaps have been better spent on Mickel than PACE. There's a thought.

On the plus side, no shots of me looking like a bag lady who found her sunglasses in a skip - (my gorgeous precription sun specs just don't look so glam on film)...

* To clarify: approx 46 mins in, the voice over subtitles say that I've 'encountered threatening behaviour' online, which is misleading, I've personally never encountered 'threatening behaviour'! Yes, I've been upset - there is often heated debate between PWME - attributable in large part to the lack of belief and confusion of criteria - and I've been demoralised at how disrespectfully people can speak to one and other (especially those who comment anonymously), and I - for the most part - avoid those situtations. But there is also a great deal of support and warmth online, a generosity of spirit. Undoubtedly, the *ugliest* comments I've seen are from members of the public - including doctors - towards people with ME - I've been horrified at times by the prejudice and cruelty. And the most upset I've personally been was after going on the Bad Science (Ben Goldacre) forum last year, only because a comment of mine from CIF had been cut and pasted there - needless to say I never went back. As someone said, that is a lion's den - and those people are - I understand - supposed to be scientists. But there is just so much at stake here, after all the heated/recursive/looping threads, after all the laptops and iPhones are switched off, we remain ill, we still have ME.

** Pleased with my comments on biomedical research, 48.30 mins in.

Toxic Tiredness - Part Two BBC Alba

2012-01-30T02:10:00.035Z

Part Two of 'Trusadh' tonight. I'm told I just appear briefly, so I'm much less anxious, I was a wreck last week, really! Professor Behan is featured tonight, the consultant neurologist who diagnosed me in 1983/84. He has done a lot of work on ME and Coxsackie. Also featured is the highly controversial Mickel Therapy, which is a 'cure' offered by David Mickel, a GP in Aberdeen. It is a 'talking therapy', but he does *not* think ME is perpetuated by false illness beliefs, he believes it is 100% physical but down to a faulty hypothalamus - at least that is my understanding (although, incredibly, he doesn't believe it is triggered by a virus). It seems a bit like Gupta therapy to me - 're-training the amygdala' - which I tried after my book came out when Ashok sent me the DVDs for free, no strings at all: I did try saying 'stop, stop, stop' - in the supermarket, I usually kick my basket along the ground in the queue 'cos I can't carry it, but it didn't help, my arms still burned. But I think he also returns your fee if you try it and it doesn't work (though I may be wrong here). I did find the meditation parts relaxing, but no more or less so than any other meditation CDs.

My view is if you *want* to try such therapies - good luck, it can't really harm you - unlike GET - and is very different from being forced to do CBT by big bad wolves (see previous post) to reverse your 'false illness beliefs'. It's when you are told that if you don't get better that you don't want it enough, or you are not trying hard enough - that's when you want to stab people. (And Esther and her LP on children just makes me shudder.) But I understand the dread of the ME community: if a talking therapy like Mickel is seen to be helpful - for some - it just reinforces the belief (by those on the dark side) that the illness is not physical. Bring on GET! I can just hear the NICE cheerleaders: ra ra ra!

I also can't see how you would even be remotely 'well' enough to try MT when you are severe, or even be inclined to - how would you get to the sessions, or do they visit you at home? And, seriously, how can a therapy like this affect a neuroimmune illness? How?

I would in all honesty be one of those who said, Ach, if you get better with Mickel then you didn't have ME to begin with, but my friend who was also diagnosed by Prof Behan (she also had Coxsackie virus) was hellishly and unrelentingly ill for two decades, more ill than me, at her worst; over the years, she made some progress but nothing near full health and when she tried Mickel, as sceptical as the rest of us, I think no one was more surprised than her when it worked. She felt well enough to go on to have two wee lovely children, and while I am truly delighted for her (she knows this!), I still don't get it, and am not curious about trying it. She has blogged here, but she does not update very much these days.

I didn't discuss the treatments I'd tried, in the documentary, so here they are, the ones I recall, from eighties and nineties:

ACTH injections (helped a bit when i was at my most severe, immediately felt like I would not die that night)
Imunovir (anti-viral drug) no change
Efamol Marine (evening primrose oil) no change
Plasma exchange with immunosuppression (when I was at my most severe - made me worse initially but after 6 months, microscopically slow improvements)
Intravenous vitamin C and magnesium (helped a bit when I was severe (had relapsed bigtime), I would have boosts now if I could)
Anti-candida diet/anti-fungal drugs - waste of money and time

As I said last week, what has truly helped me is time and resting, resting, resting and pacing. Overdoing it always makes me worse.

*

(Extract from The State of Me, Chapter Six)

The new plasma was from a Polish donor. The technician told me I had great veins and that I might feel faint during the proceedings. It took three hours. He told me what Highers his son was doing and what colour of carpets him and his wife were getting for their new house. When it was over he said, That’s you, you’re half Polish now. He handed me a see-through bag of my old plasma. It was the colour of dirty goldfish water. A porter wheeled me back to the ward and delivered me to Bob. I had the bag of old plasma on my lap.

How to draw a wolf

2012-01-29T00:06:00.003Z

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

All the fun of the fair - part one hundred

2012-01-28T18:05:00.010Z

Just over three years ago, JH wrote a rather confusing and contradictory Amazon USA review of TSoM, which, of course, she is entitled to, but I understandably took issue with her saying the novel 'did more harm than good' (the book hammers home that ME is neurological, and not just 'fatigue'). When I saw a new UK review go up today I was curious - and then most surprised - to see JH had posted the same USA review from 2008 - though considerably more mellow than the original - 'What a shame that such a brilliant novel is so let down by poor quality medical information on M.E' - edited for the hundredth time, perhaps - on Amazon UK 2012.

Very interesting that it coincides with BBC Alba documentary (which seems to be on youtube for now, so I guess it has made its way to Australia). I mean do people usually leave three years between posting the same book review? Is she suddenly afraid that my novel is going to lead UK readers astray?

So I'm switching comments off on this post, cos I truly can't be arsed with it all, but just leaves me feeling a little sad. (And there is every chance, once JH has made her point, that TSoM, an autobiographical novel - best read with an accompanying list of political/medical facts - or best not read at all - will have - once again - edited/removed the review by the time this blog is posted).

But she has made her point - and I am making mine.

Toxic Tiredness (Part One) BBC Alba doc

2012-01-24T22:22:00.025Z

Part One of 'Toxic Tiredness', the BBC Alba documentary on ME is now available on iplayer for a month. I was so nervous before watching (though not being filmed), but am pretty happy with how I come across, and also Dr Shepherd of MEA does a very good job, remarking on 'the major scandal for the medical community' in marginalising PWME the way it has (and does). Feedback online seems mainly positive, though some are saying that severely ill people - and I mean bedridden - are not represented and that is indeed true. I know the makers of the programme certainly wanted to include more severe sufferers, I guess they could not find anyone to take part. It's a tricky one, I'm not sure I would've wanted to be filmed - or could have been - when I was severe, it's a vulnerable place to be, but unless you are close to someone who is severely ill, it's pretty hard to imagine: 'I don't think anyone can understand unless they witness it', as one of the contributors, a nurse, says. I also loved the comment by a GP, 'The more they push themselves, the more ill they become... it can take three days to recover from one bout of exercise... For the majority, it's a lifetime illness'.

Not nihilistic, not defeatist, just true.

I think everyone who took part is to be applauded, it's brave to put yourself on a platform for everyone to view (and judge!) and you don't know how you are going to be edited (which is really quite scary). I'm not certain that everyone taking part has - or had - 'classic' neurological* ME - but the conflation with 'CFS' - the lack of consistent criteria - is now an engrained part of our narrative; also, these are highly edited clips, and it is not possible to capture the full story (illness) of any one of us. At the end of the day, I can only know my own story.

Five different voices were heard, a sad tale of lives disrupted and broken - and, in one happy case, mended completely, a young student. I've said before that it can take a decade to adjust to this illness, the shock of it all, re-adjusting to a different life, absorbing the impact. If I'd been interviewed when I was younger I'd be telling a different story than now - I've had *so* long to adapt, change my expectations, my hopes - but I still have my dark moments, weeping at what I have lost: the photograph 71/2 mins in of me as a well 17-year-old had me in tears when I first watched, my mother too.

I was most moved by the policeman's story, he is the most severely affected of the other four and his ME effectively 'ended his career' twenty years ago (he had never had a day off sick). I liked the nurse's description of 'an iron bar at the back of my neck, which someone was pressing into my neck' - I know that feeling so well - and also her description of the exhaustion as feeling like 'a busy day at the peats', that's wonderfully poetic. I was also moved by both the policeman and the photographer talking about the excellent support they've had from their wives and children. I've said before this illness could undo you without strong family support.

I wasn't sure at first about the shaky camera going downstairs/outdoor shots, I look like a refugee, but the effect of being disoriented is good, it feels otherwordly, and what is ME if not otherworldly? (Incidentally, I had to keep sitting on a wall to rest for the walking scenes, just round the corner from me.) And I loved the mournful but gentle strumming in the background. So thanks, BBC Alba, for tackling the subject of ME in the first place - and letting people tell their stories. I'm also glad that they included my comment about my ongoing anger at the psychiatric lobby hijacking a neurological illness (I saw it happen, ME flipped like a pancake, 'becoming' CFS in early 90s, almost a decade after my own diagnosis). Part Two is next week, I'm looking forward to Professor Behan, he is not a man to mince his words. And also two of the people in Part One undergo Mickel Therapy, that is indeed going to be controversial. That is discussed a little here on MEA in the comments thread.

On a lighter note, in my family, this programme is now known as 'Appa on Alba'. We had a scary Auntie Appa in Pakistan, she was large and dressed in white and had a cleanliness fetish, she would not let us touch her, and when I'm bossy I'm known as Auntie Appa.

* Yes, 'neurological ME' is a tautology, but it is increasingly used by PWME to distinguish between neuro ME - the real thing - and nebulous fatigue syndromes.

** I was also thinking would be good if they could have filmed me the day after when I was shattered from the day before, it would have been a very different Appa on Alba, not dressed, post-exertional malaise (PEM) in action, just the usual. But I would be too vain, quite honestly, and the crux is: I have my book, my precious book, to tell it like it is.

*** I have just worked out where I appear if you want to re-watch: I am at beginning and then at these intervals: 7.35 mins, 18.30 mins, 24 mins, 29 mins, 40.50, and at 48.50 mins I read from TsoM and talk a bit about writing it - the prog did not include my describing the *years* that took...

Dorothy

2012-01-22T00:06:00.005Z

I was having coffee with my lovely stepdad - who is in his third year of vascular dementia - and he told me he had an appointment with Dorothy Perkins. There was a Dorothy Perkins store opposite us, so it was easy to see what had triggered his thought. I hope you have a lovely time, I replied. I told him about the upcoming Alba programme, there are still some doctors who don't believe we are really ill, I said. Bastards, he replied, in his inimitable - emphatic but polite - Scandinavian way. And then he looked lost, totally lost, I could have cried.

Stornoway Gazette previews BBC Alba documentary

2012-01-21T00:30:00.009Z

Preview of BBC Alba documentary from the Stornoway Gazette. I'm told I am mainly in Part One, but make a brief appearance in Part Two (to comment on the need for biomedical research). I was filmed for probably two hours, so am curious what will end up being used. Professor Behan, the consultant neurologist who diagnosed me in 1983/4 appears in the second part. Coincidentally, BBC Alba filmed him in Glasgow in the morning before then coming to film me in Edinburgh in the afternoon (I had said mornings are out for me!). I remember thinking how bizarre that all these years after he treated me, we end up being filmed on the same day for a documentary. I have taken this description of his work from MEA:

Professor Behan has now retired from his consultant and research post at the Institute of Neurological Sciences (Southern General Hospital) University of Glasgow but is still involved in ME/CFS research. Along with colleagues, including John Gow and Abhijit Chaudhuri, he was responsible for much of the early research that helped to establish a biomedical/neurological model of causation. He also worked very closely with Dr Melvin Ramsay. His wife, Professor Mina Behan, who sadly died a few years ago, was also heavily involved in ME research - muscle and mitochondrial abnormalities in particular.

I still remember being horrifed when he told me my illness could last for five years. How can I bear this, I thought, how can I bear it? It was inconceivable to me - unfathomable - that I could be so ill and no one could to anything to help me. But Professor Behan was my absolute saviour, to this day I can't thank him enough for telling me what was actually wrong, 1 had been ill for over a year by the time I got my diagnosis.

And that is why The State of Me is in three parts, each of which spans five years. And that is why I still can't listen to 'Five Years' (David Bowie) - one of my favourite songs - without a pang.

Cat litter

2012-01-20T00:06:00.004Z

You know when you shred newspaper to make cat litter, that's how my head feels: all the words and facts and thoughts are chewed up. I am shattered.

Counting crows, & BBC Alba

2012-01-16T13:33:00.022Z

I love this video of a crow using a jar lid as a sledge.

And this is enlightening too, I didn't know they were so intelligent.

There are also crows in The State of Me:

helen       He’ll be so handsome in his graduation
                robe and I should be with him, wearing my
                  polkadot dress – afterwards, they’re going to
                the Ubiquitous Chip for dinner and I’ll be
                  stuck here counting rooks and crows.

stranger What’s the difference between a rook and a
crow?

helen       A rook’s a kind of crow – a gregarious
                  Eurasian crow to be precise. They nest up
                high and are very noisy.

The BBC Alba documentary on ME - as part of 'Trusadh' series - is out next Monday 23 at 9pm, the second part on Monday 30. (If I have a lisp it's because I'd recently had my wisdom tooth out.)

Come September/October of this year I will have been ill for thirty years. It's a long time to have been ill, a long time to have dealt with all the bullshit. I remember my first symptoms like yesterday, but I do not remember the last day of feeling completely well. I was not yet nineteen when I got the Coxsackie virus, which triggered ME. I had just gone to live in France as part of my degree, it should have been wonderful, and it turned out to be nightmarish. And I know I come across as feisty and fighting, but I have the fragility that all of us with longterm ME have, and I have the 'scars' of not being believed.

Even

2012-01-08T21:13:00.001Z

Even a minor cut (slicing iceberg lettuce last night, hacked my thumb instead, blood on salad, had to throw some leaves away - my friends are not cannibals, after all) makes me think of how fragile we are, physically. We are just so easily harmed.

Skim or skip or give up altogether?

2012-01-06T00:06:00.002Z

Interesting article in Guardian on skipping the boring parts in books. I think even the best books have boring parts, it's almost unavoidable. (Writing, you just can't edit it *all* out, you sometimes need to keep sections in that are not the most riveting, otherwise the book has holes. At times, I was afraid there would be nothing left of The State of Me, I'd pare it down so much.) I tend to skim rather than skip, I can't read much about landscapes, I get bored with trees and shadows and sun dipping. But sometimes skipping is necessary, as you try, try, try to finish a book that you know deep down you are not enjoying. One of the books I skipped big chunks of last year was Solar by Ian McEwan, this novel actually made me angry, it was so dull and yet so lauded. I constantly felt it was just a male writer's fantasy that hugely unattractive - emotionally and physically - middle-aged men could get heaps of women falling in love with them just because of their high intellect. It's supposed to be a comic masterpiece - there was one - admittedly - very funny episode in the Arctic and that was it, I'm afraid. And I must confess I also skipped a lot of the highly acclaimed, prize-winning Room by Emma Donoghue, the narrative voice is innovative - the first scene heartbreaking - and the subject matter harrowing, but the voice began to grate early on, for me. For a grim tale from a child's point of view I much preferred I'm Not Scared by Niccolò Ammaniti.

I read French novels occasionally and thanks to a friend's gift voucher have just ordered Lorsque j'etais une oeuvre d'art by Eric Emmanuel Schmitt. I knew nothing of this writer 'til Crafty Green Poet recommended his book to me. There's a good chance that this time next year I will still be reading it, so choppy and fanciful are my reading habits.

Extract from The State of Me, Chapter Nine

2012-01-05T12:55:00.003Z

'Terrified. Getting worse. No one can help me. Even my hands feel ill.'

Delighted that the book has two new Amazon reviews already this year. You can read them here.

And I didn't manage to finish The Hare with the Amber Eyes - before New Year - after all. Dearie me. But I will finish it, I will!

Yoyo-ing

2011-12-31T13:31:00.001Z

I love that you can email your own documents to the Kindle. Still unsure about actually reading books on it though. My sister-in-law gave me the paperback of Alone in Berlin by Hans Fallada, I had not heard of him, I am not usually into Second World War novels but this has brilliant reviews. I've only read a few pages and it is much more alluring to me to pick it up than go back to the Kindle and read more of The Stranger's Child (only read a few pages of that too). A physical book is undoubtedly part of the charm of reading. I often recall reading a particular book in a particular place - from years ago - but e-books are all the same, like they've been cloned. I miss the feel of paper, the lovely cover you see every time you pick a book up. A Kindle on the table is just not seductive! However, I remember hating reading the news online, I had to have the real newspaper. Now, I can't remember the last time I bought the Guardian or Observer. So maybe I just need to get used to it. And happy that on the last day of the year, The State of Me is still yoyo-ing in and out of top 100 Kindle literary fiction. When the book came out in 2008 I could not have imagined this. So, yes, there are advantages to being modern. When I was showing my nephews last week how to use a yoyo (exhausting on your arms though!), I thought, this is good, old-fashioned fun, this is best. They lasted five minutes then they went back to their Playstation. But we also had much fun playing snakes and ladders, we named all the snakes and printed out their names so that when we went down one, we could shriek, Evil Steve got me again! In fact, Spotted John almost ruined Christmas for me - no.94 - he got me every time.

Happy and Healthy New Year to all when it comes.

You've got the sea in your eyes

2011-12-27T11:33:00.008Z

Had lovely few Christmas days (and birthday!) with my family. My favourite time, bedtime, bantering with my nephews who I was sharing a room with. I asked if they would visit me when I was old and in a home, the 10-yr-old said of course he would, the 7-yr-old said he would write on a checklist 'have to visit my auntie', that's how he would remember. I'm still bemused that I now have a Kindle, a gift from my brother. I've downloaded Alan Hollinghurst (The Stranger's Child) and Mischa Hiller (Shake Off), I tried to download The State of Me, but apparently I cannot download the revised e-book (I downloaded the original in 2010 to my laptop when it was first released and it says I have already purchased). Since I now have a Christmas cold, the kind where the sneezes start in your feet and make their way up to your head, shaking you like a spin-dryer when they eventually happen, I will not be reading e-books or p-books (though I would like to finish The Hare with the Amber Eyes before Dec 31 as I started it in Jan this year). When I sneeze I look like I'm crying, and yesterday the wee 7-yr-old said, You've got the sea in your eyes. Though when I asked him later how to say in German - my sis-in-law is from Hamburg - I love you very much, Auntie N, he made a funny face and said Scheiße! before collapsing in hysterics with his brother. Not the only swearing going on, we got my (Danish) stepdad to say For helvede! a few times as it sounded like it was right out of The Killing.

Silent Night & Irn Bru

2011-12-22T00:03:00.001Z

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).

MRC - finally - funds biomedical research into ME

2011-12-21T13:07:00.010Z

Better late than never the MRC has revealed who is getting the £1.5 million for biomedical research into ME (just a shame it wasted £5 million on PACE). The Sjogren's seems a bit added on, and I am not sure how they overlap (do Sjogren's patients also have post-exertional exhaustion, the hallmark symptom of ME?), but it's more welcome than the irrelevant studies on ME the MRC usually funds. I am pleased about the mitochondrial research (though it is unclear whether they are directly using PWME!). Also, not so sure about the sleep aspect either, even after a good night's sleep - not disturbed - you do not feel anything like normal, though I agree that insomnia/disturbed sleep is hellish. So, seems a bit of a higgledy-piggledy assortment of research, but in UK we have to be grateful for every crumb of recognition we get, and that they are not ramming harmful therapies down our throats.

I also note that that MRC states: 'in response to the high quality of the applications received, the MRC decided to provide an extra £150,000 to support the package of successful projects.' This is no doubt a mealy-mouthed way of saying it wasted £5 million before, and that it never used to fund high quality applications but now it is going to start, as it can't honestly get away with funding psychosocial nonsense any longer.

*More on the University of Liverpool mitochondria research, I am heartened by this project, but please ignore the press release photo of the obligatory well-groomed, tired woman with laptop to represent ME.

** University of Newcastle press release on its MRC funding.

The crime of reading books before you gift them

2011-12-17T00:03:00.005Z

I don't read books before I gift them to people - my mother does, shamelessly (at least, if the book is for me, maybe not others). However, a few years ago, I found myself reading The Reluctant Fundamentalist by Mohsin Hamid, which I was giving to my sister-in-law. Before wrapping, I started to browse and simply could not put it down. I recall reading it, only half-opening the pages, trying to preserve the newness. Only a chink of words visible, it was like reading a triangle.

I have commited the crime again: I've read The Tiny Wife by Andrew Kaufman (The Friday Project), a wee stocking-filler for someone in my family. The book is small and cute, only 80 pages long. Quirky and funny - Andrew Kaufman has an imagination to envy.

The Opposite of Nonsense

2011-12-15T00:01:00.005Z

BBC Radio Norfolk: fantastic stuff from Dr Ian Gibson on ME: 'the medical brotherhood were pretty negative'.

The medical brotherhood is a lovely expression to describe Wessely and his cronies (though Dr Gibson gallantly does not mention Wessely by name).

'Let's do some proper research', says Dr Ian Gibson. 'Research is the way forward'.

Honey to my ears in the wake of the nonsense on Channel Four's 'Food Hospital' on Tuesday night. A young woman with 'chronic fatigue syndrome' had her life turned round by eating regularly. Yes, eating regularly improved her symptoms after thirteen years! I wish no offense to the young woman featured but I find it hard to believe that she has ME (and also that she had not looked at her diet in thirteen years of illness). The usual conflation of ME and 'chronic fatigue'. At the end, Lucy Jones, dietician, congratulates this young woman for 'improving her perceived symptoms of chronic fatigue'. Perceived? Bla bla bla.

Just looking at the Food Hospital's 'guide' to "'chronic fatigue syndrome' - also known as ME", you can see how poorly the illness ME has been researched - maybe an unpaid intern wrote the guide on her lunchbreak? The usual well-trodden, lazy media mantra, which appears to be 'conflation, conflation, conflation!', rather than 'education, education, education!'.

And an absolute star, Dr Montoya of Stanford, honest and charming in his discussion of what researching ME entails. This event occured after the Mill Valley screening of 'Voices from the Shadows'.

*This is an update: I also want to highlight these articles by San Francisco journalist David Tuller. Particularly, this one: Chronic fatigue syndrome and the CDC, a long, tangled tale (this is a very long article, but worth persevering).

The Opposite of Kindle

2011-12-14T00:36:00.003Z

Some days ago, I saw an elderly man on the bus reading an old, battered blue hardback - it had no jacket. He was mouthing the words to himself as he read. The pages were loose. I actually craned my neck to look, but I didn't manage to see the title.

The Goon Show

2011-12-10T00:06:00.008Z

I have honestly given up on there being a cure for ME in my lifetime - in 30 years all that the goons running the show in the UK have come up with is CBT and graded exercise (very dangerous, makes you worse) but, thankfully, we have Norway, and now Canada and also Australia with excellent news.

And here are some writers' favourite books of 2011, I haven't heard of all of these writers - I just skimmed the article - but that makes it more interesting than the usual lists.

Soup

2011-12-08T00:06:00.017Z

I had possibly been a bit nippy in the bookstore, there was confusion with my Society of Author's discount, there was misunderstanding on both sides, in the end I had to say: I am chronically ill, my brain sometimes has problems absorbing information. Please be patient. I would not usually reveal such a chink in my armour but I was so frustrated at not being able to do the sums. I really get more scatty by the day, it is fucking ridiculous. Totally unrelated, I love that you can make soup from anything. Really. It feels quite virtuous to boil up everything in the vegetable drawer of the fridge.

Guns and bottoms

2011-12-07T13:15:00.002Z

My nephews are sweet as pie when you skype them on their own but together they egg each other on and it's all bottoms (the 10-yr-old showing me his and shrieking), and both with toy guns, last night, pretending to shoot me. How many aunties get bottoms and guns on Skype? I asked.

Ten aunties! the almost 7-yr-old replied.

Then: A hundred aunties!

Tee hee hee.

I love they are so at ease with me I get the bottoms and guns, though the guns are more disturbing than the bottoms.

British Journal of Radiology: research into brain changes in ME

2011-12-01T12:52:00.001Z

Some heartening news to kick off December, research which shows 'significant neuroanatomical changes' in ME.

Pandas

2011-11-30T13:17:00.007Z

I love that the pandas are being FedEx'd to Edinburgh in a Boeing 777. I have mixed feelings about zoos, but I hope this is a great conservation project, and, of course, a boost for Edinburgh/Scotland.

There is only a window of a day and half in the year when the female is receptive to the male.

Just as long as you don't want to take a tram there...

* CIF on pandas... the true price.

** The pandas have landed! As Douglas Alexander said on Twitter, Scotland now has more pandas than Tory MPs.

*** More background to the pandas.

****Letters to Guardian.

Two lovely things

2011-11-27T21:22:00.014Z

Congratulations to Kitty Aldridge and the other winners of the Bridport Prize 2011, announced yesterday! I was v. chuffed to make the shortlist of 100 (out of 6000 entries) in the short story category, a long time since I had written anything new. Also, delighted that The State of Me has been in top 100 paid Kindle literary fiction for last month (with occasional dips out). I'm sure the bargain 99p has something to do with it. A nice short Kindle review here.

Dr Peterson's talk in Stockholm

2011-11-24T00:06:00.005Z

Excellent presentation from Dr Peterson on ME, in Stockholm last month. He talks about how CFS was the wrong name in 80s (in USA), trivialising the illness. He talks about how post-exertional malaise, neurological and immunological abnormalities, and not 'fatigue', are at the forefront of research now (unless you are in the Wessely club in UK). He talks of the importance of definition, the importance of getting it right.

Really excellent, I could cry.

Wary

2011-11-22T01:10:00.002Z

I love this description of being in an unfamiliar house from Elizabeth Bowen's The House in Paris: It is a wary business, walking about a strange house you know you are to know well. Only cats and dogs with their more expressive bodies enact the tension we share with them at such times. The you inside you gathers up defensively; something is stealing upon you every moment; you will never be quite the same again. These new unsmiling lights, reflections and objects are to become your memories, riveted to you closer than friends or lovers, going with you, even, into the grave: worse they may become dear and fasten like so many leeches on your heart. By having come, you already begin to store up the pains of going away...

Blowing your own trumpet

2011-11-17T13:19:00.007Z

My back is fucked again, really it is getting ridiculous, I shouldn't be at my laptop but there are things to say.

Today is RLS day, wonderful Robert Louis Stevenson. This is the first official celebration.

I was, many years ago, shortlisted for the RLS Memorial Award on the strength of a short story. I didn't win, which in a way was good as I would not have been robust enough to go and that would have been shattering, two stays in France being hijacked, my year abroad in 1982/83 when I first got ill, and this prize, two months in a remote, idyllic retreat.

But at least I was considered, my voice was heard, and that is what is maybe more important.

It strikes me again that here is so much pretense with this illness, you pretend you are more well than you are - for many reasons.

But in the end, you can't pretend, you can't keep up the mask. You can't sustain things.

And when you are in a severe phase, of course there is no pretending. Some people never get out of the severe phase: the wonderful Countess of Mar in the House of Lords yesterday.

A pack of ME Research UK Christmas cards just arrived, there are so many charities needing support, I always spread my choices over four or five. It can feel a bit like blowing your own trumpet when you send ME cards. My friends and family support me all year round and here I am reminding them that I am ill, but the money has gone to research so that is fine and dandy. But there are Amnesty International, Down's Syndrome Association, Alzheimer Scotland, children with terrible diseases, starving children, children with no clean water, you would go mad if you thought about everyone who needed help.

And the abandoned cats in Greece (just saw an ad for them in The Big Issue).

Now I am off to do some cobras and corpse positions (yoga).

Thank you, Jesus

2011-11-16T00:06:00.037Z

Scottish Public Health Network recommends that a distinction be drawn between ME and CFS - Hallelujah! Hallelujah! Hallelujah! Sung in shimmering harmonies!

Those of us who have the neuroimmune illness ME have been screaming this from the rooftops for years, only to be told by the cult of Wesselyites that we are deconditioned and not motivated. (Insulting, patronising nonsense, of course.)

This document (for patients) is wonderful and I can only hope it pans out and does what it says on the tin: ME defined according to Canadian Clinical Guideline, and CFS (idiopathic fatigue/burnout/stress/ - or tired bankers - as reported recently in Telegraph) - defined according to NICE Guideline.

CFS is clearly a less disabling, less complex illness which seems to respond to CBT/graded exercise/having a year off - that is all fine and well if that is what you have. I would never - and will never - say I have CFS. I still recall about ten years ago a GP trying to tell me 'CFS is what it is called now' and that 'CBT was showing the best results'.

Oh, how I laughed.

The whole Scottish PHN report/background is here.

A modern thought

2011-11-15T12:31:00.001Z

I'm reading - and loving - a second-hand copy of The House in Paris by Elizabeth Bowen. Pages 17 and 18 fell out when I first opened it and I shocked myself by thinking: This wouldn't happen with a Kindle. I got over my e-moment and sellotaped the pages back in. Since I still have no desire myself to read on a Kindle, I really did surprise myself - I guess I was just having a modern thought. And delighted that The State of Me has been in top 100 Kindle literary fiction for 12 days now. This is longest it has sustained a position there and I'm very pleased, it usually dips in and out. I know the 99p bargain must be something to do with it, but the point is the book is finding new readers and hopefully people are recommending it. Thank you, e-book technology!

Posing

2011-11-14T14:13:00.004Z

One nephew is learning the trumpet, one is learning yoga. I know which one I'll be joining in with. I do enjoy the corpse pose though I wish it wasn't called that.

My character Helen Fleet enjoys it too:

Today her arms and legs are being eaten by moths. (So much for the yellow capsules.) The Tree and the Salutation of the Sun are out of the question. She likes the eye exercises and the Rabbit (you just kneel). She can do the Fish up to the part where you have to lift your legs. Her favourite is the one where you lie still and pretend you’re dead.

(Extract from The State of Me)

Prepare

2011-11-11T13:40:00.000Z

Prepare to be heartbroken and inspired: Unreported World on Gaza's disabled athletes preparing for Paralympics. Channel Four.

Woken

2011-11-10T09:03:00.001Z

I sometimes marvel that I used to actually understand calculus, I even got the Maths prize, my final year at school - and French and Chemistry, I was such a swot - but now simple ratios and percentages hurt my head. The brain fog from ME is no joke. Your head really does feel full of holes. I do miss my academic self. I am in a very bad mood cos I was woken by the magpie that sounds like a manic toy train, though today it sounds wheezy like it has a cold. The other day, I bought a bag of seeds for the birds, a bargain for a pound, but so far they have ignored what I scatter. If you haven't fed them before, how do they know the seeds are there, how can you tell them?

Blue

2011-11-08T11:45:00.001Z

Yesterday was the first day I wore my winter coat. At the eye hospital, I sat next to a window, the sky more blue than it was in summer, and a perfect autumn tree full of tiny birds flitting from branch to branch. It was hard to tell them apart from the falling leaves. Enchanting.

Memories

2011-10-29T14:50:00.002+01:00

Sadly, two of my friends have lost a parent recently, aged early seventies, and yet my lovely stepdad just celebrated his 82nd birthday, he is physically doing pretty well, has had both knees replaced, has survived prostate cancer and he always looks dapper, even when he is just shuffling round the house, I think that is because he is Danish - he never looks untidy. Still, he is now in his third year of vascular dementia, so there is much untidiness of thought. He calls Tinker, Tailor, Soldier, Spy - Tinker, Tailor, Soldier, Spiderman, and he is not joking. I know about dementia, I volunteered for Alzheimer's Scotland for five years in the nineties and my wee aunt got dementia in her forties, a few years ago - the combination of Down's and dementia surely one of Nature's cruellest quirks, she died in July. My stepdad has always had quirky sayings and I'm not sure now whether what he says is a result of his memory being destroyed, or just his own way of saying things: I don't have eyes in my neck (I don't have eyes on the back of my head) and It's on my house (It's on me, I'm paying). It was 'on his house', and we had coffee in Waterstone's and on the way in he asked if they still had my book, so he remembered my book launch from three years ago, I was impressed. But later he fell, missing the last step, not realising the bannister curved in the other direction, I did not see this mishap, my mother was with him, on their way to the toilets, but he assured me 'he had no wounds'. I am so glad he is fictionalised as Nab in my novel, some of his wonderful traits in print forever.

To hand wash or not to hand wash...

2011-10-25T00:06:00.009+01:00

Have just realised that my new lovely thick polo neck - reeking of wood smoke from the weekend - is hand wash only. I hope it likes life in the laundry basket, it will be there a while, it will take me a day's energy to wash the big bastard. So tempted to shove it in machine on WOOL, but that way tragedy surely lies.

Norwegian Breakthrough in ME research

2011-10-20T12:08:00.020+01:00

Holy moly, this is the breaking news from the world of ME research!

I refuse to get all hyped up though, we have been here before, and I am in no hurry to swallow Rituximab until absolutely proven beyond doubt, but it is still a joy to see biomedical research being done. However this pans out, it will surely lead to better understanding of the mechanism of ME. And they got their trial participants from patients who had been diagnosed by neurologists, there's a novel idea - get patients with neuroimmune illness and not patients with nebulous fatigue à la PACE trial.

Wonder how long it will be until the Wessely-led Science Media Centre will try and defy the story Gaddafi-style, frothing and spitting?

Update* Short video of Dr David Bell on this news.

Update** In light of this breakthrough, the Norwegian Health Directorate apologises for treatment of PWME.

Update*** Invest in ME's statement.

When are we going to get coverage of this research in UK media, never mind an apology from the bozos who run things here???

Update**** BBC coverage, finally. I understand the MEA persuaded them. Still, it beggars belief that the journalist felt it necessary to include 'death threats' in top five facts about ME. When is this appalling media bias going to stop? And no mention of apology by Norwegian Health Department, surely that is big news?

Update***** And The Daily Wail has also now covered, and informs us that CFS 'can last for a matter of weeks to several years'. Such high standards of research! At least no mention of THE THREATS. We should be grateful. (And you've got to love The Daily Wail's photo: next time I'm feeling crap I must put on mascara and pink PJs and grab a teddy. Though better than the oft-seen ME photo of a woman at her laptop in the office, with her head on the desk.)

Update****** From Invest in ME FB page re. 'death threats' reference: 'Our complaint to the BBC stated: 'In the article Immune system defect may cause ME By James Gallagher it is stated in the side information, under Chronic Fatigue Syndrome - "Some patients have sent death threats to researchers after disagreements over a cause or cure" This is only conjecture. There is no proof that patients have made death threats. You are only repeating what has been said by some newspapers who have not verified their facts. Where is the police report to validate this claim and how is it proven that any person suffering from ME has made any threat? You have no proof of this and this statement is pejorative and shows extreme bias against a sick and vulnerable section of the public. It is, in fact, discriminatory. We would ask you to remove this immediately' After our complaint to the BBC it seems that BBC have modified their comment - now stating - "Some researchers in the field say they have been the targets of abuse and death threats as a result of their studies." Still an unsatisfactory part of a tardy and insufficient response to the Norwegian research - and still heavily biased.'

Leonard Cohen: I'm Your Man, a film by Lian Lunson

2011-10-15T00:06:00.076+01:00

I came across this 2005 Leonard Cohen tribute film via Open Culture.

What a gem, an absolute gem.

The filmmaker is here.

Wonderful clips of Leonard, and my favourite covers are by Rufus and Martha Wainwright. (I also love Antony and the Johnsons' version of The Guests, though not in the film.)

I didn't know that Rufus and Lorca Cohen - Leonard's daughter - had had a baby girl earlier this year. Can you imagine the gorgeous lullabies she will hear?

And there is this from 1965 - it's like watching a French film, it makes you want to smoke and wear polo necks (even when you are anti-smoking, as I am, I love polo necks though).

Have I written a historical novel?

2011-10-12T12:03:00.007+01:00

Interesting to see that Jarvis Cocker is joining Faber as an editor, what a quirky, lovely event. I love Pulp and listen to Jarvis on 6 Music on Sundays when I remember he's on (listening again is just not the same). Faber's editorial director Hannah Griffiths was the agent who very much encouraged me to turn The State of Me into a novel, when I showed it to her in 2000. Back then, it was a very long short story - maybe 20,000 words - called Through the Round Window. I did not think I had the stamina to write a novel, and had no idea about writing novels, but somehow I got there. She said I wrote 'clear, gorgeous prose' - that phrase has always stayed with me. She was no longer working as an agent when I eventually finished the book, five/six years later, but she was certainly instrumental in my keeping the faith that my writing worked. Self-belief, I think, is the greatest tool to getting your book published. At the risk of sounding wanky, if you don't truly believe in your writing no one else will. I think the final word count was around 100,000 but I would need to check. BBC Alba asked how I managed to write a novel, having ME. I could not write a whole first draft, which I imagine is how most writers write. I certainly had an outline, but I would finish one chapter, polish it up as much as I could before going on to the next. I simply could not have faced having to go back over 100,000 raw words, editing from scratch, that would have been overwhelming. The book has an episodic feel - short scenes and pauses - and I think that very much reflects the illness, the many necessary rests in-between tasks, the white space, the gaps where you 'recover'. Again, this was all unconscious, I wrote what I wrote, the way that I could. I remain so happy I got there, and especially now, with all the XMRV/WPI stramash, my novel almost feels historical, pre- any of this research/debate. I think though, although it spans 1983-1995, it still very much reflects the truth of the illness, the chaos and hell we find ourselves part of. As always, my heart goes out to those who remain severely and unremittingly ill.

I've started so I'll finish - maybe

2011-10-01T12:40:00.002+01:00

I often put books down and don't go back to them for weeks or months. Unless I utterly love what I am reading. I loved Say Her Name by Francisco Goldman, although it's almost entirely lacking in lightness. A horribly sad story - based on real life - and I liked it because the characters are flawed, and the writing meticulous. I did find it hard to read as a novel though, I read it more as a (fictionalised) memoir, though if the author says it is a novel, then a novel it is. I quite liked Tea on the Blue Sofa by Natasha Illum Berg. It's very slim and I chose it because of its name. The writing can be clunky - and at times indulgent - but there are beautiful moments and the background is startling (which I knew nothing of until after I'd read the book). Also based on a true story of losing the love of one's life, but her lover is not presented as flawed, instead impossibly idealised. I returned this book to the library recently, it's like the airport now, all automated and scanned. I've just gone back to The Hare with Amber Eyes by Edmund de Waal. This book reminds me of my wee aunt because I got it when I was up north seeing her at the beginning of the year. I enjoy the writing but it's very detailed so a little goes a long way. The other night, I opened at the bookmark and read the line: Ignace was the second richest banker in Vienna, owning another huge building on the Ringstrasse and a block of buildings for the bank. I thought who the hell is Ignace, I'd completely forgotten. I had to go back to the family tree and remind myself, but the essence of the characters had gone and it took me a while to get back in. I will definitely finish this book though because the writing is so good and I knew nothing of netsuke before this. But gone are the days when I would force myself through a book out of a sense of duty or discipline.

What the writer intended...

2011-09-28T20:06:00.000+01:00

Love this.

A bird & a lisp

2011-09-26T21:17:00.004+01:00

There was a dead bird in the garden yesterday. Under a tree. It was unruffled, unmauled - as if it had fallen from the tree and simply died. Or simply died and fallen from the tree. I couldn't leave it there to rot so I shovelled it up - it took a couple of tries - it spooks me, the stiffness, the legs sticking out - and buried it lightly at the back and put a brick over it so the cats don't dig it up. Poor wee thing. I was filmed for the BBC Alba documentary on ME last week, it went well. Though I may have a slight lisp since my tooth came out. Not audible in everyday conversation but definitely on a recording. Well, it was when my friend did a test-run the weekend before last. Hopefully, it had disappeared by the time Alba captured me. Just when the toothache had (mostly) gone, I thought all was fine and dandy, then I found I may have (had) a temporary lisp.

Those lovely boys

2011-09-18T14:24:00.007+01:00

Last night, two emails from 6-yr-old nephew - who never emails.

'hello'

'how are you?'

I probably won't get another for a year, but these wee fragments make me smile.

I spoke with 10-yr-old last week. I joked with him - is the pilot wearing pants today? He replied earnestly, Yes! and told me what colour of boxers he got for his birthday. Not really dark blue, not really light blue. (Our in-joke - when we played at air traffic controllers last time I had to report him for not wearing pants in the cockpit.)

Perhaps

2011-09-16T11:26:00.036+01:00

Have been having a really shitty time with dry socket. I am glad I didn't know this was a possible outcome of wisdom tooth extraction. So really been living on painkillers and dental hospital visits. I'm accustomed to pain, but there is something unrestrained and vicious about toothache, it overwhelms you, kept on the periphery for a couple of hours by drugs, then back with a vengeance that quite stuns you.

Yesterday, I'd arranged to access my medical records, I wanted to see what happened in eighties when I was originally diagnosed with ME. I was hazy about the chronology of events and wanted to refresh my memory for BBC Alba documentary filming next week (the doc will be in English with Gaelic subtitles). It was vindicating to see the consultant neurologist's diagnosis: Severe postviral fatigue syndrome, myalgic encephalomyelitis, but also upsetting to see the letters that had gone back and forth between various doctors before, with my - then - feckless GP at the helm, writing in 1983 that I was 'a very clever girl at school and had gone to France as part of my degree and come home after two weeks with chest pain'. Not actually true: I came home after 6 weeks after severe gastric symptoms and back pain and chest pain. I also returned to France TWICE in spite of my health worsening and an absence of diagnosis after many tests - thought the second time I only got as far as Victoria bus station (from Glasgow), I felt too ill to go on. My GP also flagged up that 'I felt as if I was dying' and in his infinite lack of wisdom referred to 'unresolved issues with the late Dr N. Jafry, consultant anaesthetist'. What a stupid, stupid man (my father Dr Jafry had died ten years earlier, and I never showed signs of not coping). This GP wrote several times he thought my symptoms were psychosomatic.

Like my main character, Helen Fleet, I was only diagnosed with Coxsackie when a locum came out to see me about nine months into my illness, my mother had called him out because I was lying on the couch crying in pain, again. The locum suggested Coxsackie immediately and that set the ball rolling for viral studies and then my poor mother - who must have been at her wits' end, I was only nineteen - started calling round and we ended up at the neurology clinic after she learned that Coxsackie was causing illness in others. One doctor, a lovely colleague of my father's, who had secretly been in cahoots with my GP about 'unresolved issues', was then writing letters that Coxsackie B4 could perhaps explain my 'lightheadedness and muscle twitching'. Yes, perhaps. We severed contact with the GP, who had also been a family friend for years. I recall my mother having a blazing row with him on the phone.

So: I got ill in September 1982 and got my diagnosis of ME and 'immune abnormalities' in January 1984. I'm certainly not in good shape just now after 9 days of toothache, and probably a bit emotional, but I was so fucking angry yesterday reading these suggestions in black and white about psychosomatic illness. At one point my GP had stated that he wanted me to see a psychiatrist and that I 'got very upset and said that was not right'. Well, good for me, is all I can say. And hurrah for the locum who came out and hurrah for the consultant neurologist. And in a follow-up consultation with a neurology registrar six years later when I was back at uni part-time but still feeling ill, he had advised that if 'I felt unwell not to push myself.' So refreshing to read common sense, though that did not stop me moving to London to look for part-time work and relapsing catastrophically. I've photocopied the letters of ME diagnosis and the various immunotherapies I tried, I feel like framing them and putting them on the fucking wall.

Crafty Green Poet reviews TSoM

2011-09-12T11:46:00.007+01:00

My tooth which seemed better has been louping since Saturday night so off I go back to dental hosp. Meanwhile, a review of The State of Me from Edinburgh poet, Juliet Wilson, who also blogs as Crafty Green Poet.

Goldfish & wisdom

2011-09-09T13:11:00.035+01:00

I had a wisdom tooth out on Wednesday so still feeling a bit fragile but keeping it all at bay with illegal amounts of Nurofen and codeine. I got adrenaline-free local as adrenaline is not great for ME, though I wondered - briefly - if the dental surgeon perhaps thought I had false illness beliefs after the media circus last month, though he gave absolutely no indication of this (I console myself that most people can probably see through the bollocks of Wesselymania). He was great and I came away loving our NHS. In my novel, the main character's father is a dentist and I've been thinking of this scene:

My real father Peter had his own dental practice above a butcher’s shop. He had minty breath and slept with his nurses. (A little more suction, please, Denise!) When you went through the close to get to the surgery upstairs, you could smell the meat from the butcher’s delivery entrance. Sometimes there was blood on the ground. There was a fish-tank in the waiting room and the goldfish always had a string of white shit hanging from its tail. Peter left when I was ten but we still went to him for fillings. I didn’t find the divorce traumatic – I’d never really liked him. The only thing I have in common with him is that we both love raw onion.

I did a search for 'goldfish' to find this scene and found three occurrences, that always intrigues me, recurring images that I have forgotten.

Perhaps

2011-09-05T13:04:00.005+01:00

‘Perhaps someone was thinking of me in another country; or perhaps some thought of my own had come and gone unnoticed, and yet done me good. For some thoughts, which sure would be the most beautiful, vanish before we can rightly scan their features...’

Travels with a Donkey in the Cévennes

Robert Louis Stevenson, 1879

Gorgeous, gentle book, just wish he'd been kinder to Modestine.

Puffed up

2011-09-04T00:06:00.017+01:00

Am usually happy to see the ten o'clock cat but not last night - it's just gone midnight. He appeared at eight-thirty with a new blue collar, and I prayed he wouldn't see the wee baby bird that had been cooried up behind a tree all day. I think it's learning to fly. I rescued it several times from a spying tabby I haven't seen before by knocking on the window. Once, I had to go down, the tabby was looming right over the bird, I shushed it away. The wee bird all puffed up and trembling. I can't stay up all night patrolling and I just hope it's learned to fly by tomorrow. I read on RSPB, when you see a wee bird like this, it's not abandoned, its parents are nearby looking on. I hope Ten O'clock and Tabby aren't looting around during the night, following their instincts.

A few words...

2011-09-03T11:42:00.107+01:00

I saw my book as an ebook for the first time, last night, my friend brought over her new Kindle. I'd seen the 'raw' epub file on Adobe Digital but it's not the same, you don't get a proper sense. I'd already downloaded the first Kindle for PC version, a year ago, but the spacing was wonky in parts so it was withdrawn. The spacing is thankfully fixed, though, because they can't convert asterisks easily, in Chapter 17, FAQs, it looks like one long conversation between the stranger and Helen rather than snippets. Original is here. I also came across 'the Tag', this should be the Tay, in case you are wondering, a river in east of Scotland, we have not gone to Germany.

I imagine in many books where the format is not exactly straightforward there are wee glitches, the technology is still evolving. So, yes, I am happy enough with my ebook, though it still seems odd to me, I cannot imagine reading one. Scrolling through the text, my arm got tired, repeatedly pressing the same key. My friend's a total convert, she downloads stuff to her phone too, and finds it thrilling. I think the key is to see ebooks as well as not instead of. We toasted my first glimpse of the Kindle TSoM with pomegranate juice, I would've preferred champagne but I have antibiotics for wisdom tooth (being taken out next week).

Still, paper books are objects of beauty. They are irreplaceable, to me.

Scrolling to the end of the ebook, I was struck by the epilogue, and probably the most important fragment of my novel, especially resonant now:

If we look through the round window, and really strain our eyes, we can see some of the powerful people who didn’t believe in the illness – GPs, psychiatrists, journalists – standing shamefaced in the corner. They are wearing dunce hats and stuttering apologies.

There has been a leap in ebook sales since 'The Threats' so I can only hope more people are reading and learning (and enjoying the novel as a novel). And for that I am very grateful to Kindle.

*I should add I've started using Kindle for PC just to download book samples and that is very handy. I love the immediacy.

** International Consensus Criteria for ME, July 2011, now on PubMed.

'The Threats', a stunning new thriller from UK media

2011-09-01T00:06:00.013+01:00

Hoping to draw a line under the hyperbole and bias in the media that have caused so much stress and despair to people with my illness, this last four weeks. We've had the threats of 'suicide bomber' patients ramped up to such an extent that if researchers into ME weren't actually scared off before - a fact which has been ludicrously and harmfully exaggerated - they sure as hell will be now.

Thanks, Simon.

And any letters of reply from our point of view or our charities' - ie people with ME, who live with it, who know it, who research it - have been so brutally edited, we've been lucky to get an adjectival phrase published.

'The Threats' has been a highly entertaining, unnerving mini-series, broadcast over a month:

First, we had Nigel in BMJ.

Then Tom on the BBC, who was so excited he sounded like he was in a spoof documentary.

Then Esther on Radio Five.

Then a panoply of small scale reports.

Then Rod; then David; then Stefanie with Simon himself in the Times.

Then Robin in the Observer.

Then a lovely cartoon in THES (removed).

Then Simon in the Spectator.

Then Max in the Telegraph, unplugged on Friday (then removed, remixed by Monday).

Then Robin on the Guardian Science Weekly Podcast in case we hadn't got the gist in the Observer.

Then Simon repeating himself on the Spectator blog, Coffee House.

So, I think we've got the message now, loud and clear - Simon and his followers will do anything to prevent biomedical research into ME, they desperately want to keep it all to themselves - with their loveable, eccentric and conflating notions of 'false illness beliefs' and 'chronic fatigue syndrome'. I return to an excellent quote regarding this whole stramash, from a journalist in 2007:

“I’m sure there is a lot of psychiatric literature on how denying another person’s reality triggers all sorts of deep hostile responses”.

No one endorses threats, obviously, but the point spectacularly missed by the media is that Simon and his disciples are responsible, in the first place, for creating a climate in which such threats might flourish, by denying the reality of a neurological illness for decades, the way they have.

My final point on this - I am so very, very, very weary with it all - is: Simon, if you want to be a neurologist so much - stealing neurological illnesses and labelling them as psychiatric - then why on earth did you become a psychiatrist?

* I'm pleased 'The Threats' wasn't in any Scottish broadsheet, but I could, of course, be forced to eat my words.

** I just saw this very moving trailer from Voices from the Shadows, premiering this autumn in Mill Valley, California.

Clanging

2011-08-31T00:06:00.007+01:00

An MRI scan's like being in a dream state - hospital gowns and tunnels of white light - while surrounded by road diggers. It is so noisy it makes you want to laugh. And the 'bed' is actually very comfy. During the 'quiet' intervals I found the whole experience quite relaxing: in a capsule, cut off from the rest of the world. I could've stayed in longer after the clanging finally stopped.

All the fun of the fair (again)

2011-08-29T23:00:00.010+01:00

*Fabulous response by Prof Malcolm Hooper to very misleading narrative in last weekend's Observer:

No right-minded person could condone any campaign of vilification against scientists (“Chronic fatigue syndrome researchers face death threats from militants”; The Observer, Sunday 21st August 2011); equally, no right-minded person could condone what psychiatrists such as Professor Wessely have done to the UK ME community for the last 25 years.

** Max Pemberton's edited article which appeared in today's Telegraph (29 Aug). He blocked me on Twitter after I'd responded a few times to his lack of substance (he blocked others too), I have never been blocked or barred from anywhere online, I feel like an insurgent, I shall wear my Max blocking as a badge of honour. He has toned things down, the original, more offensive version here, over which I lost sleep on Friday - I'm sure many did - I was so upset by Max's little indiscretions. He also described the ME Association as 'disingenuous' simply for looking out for the people it represents (now edited out). Yes, they are weavers of fine tales, these blinkered medics. Purveyors of fine untruths.

*** Invest in ME have issued a letter to the Press Complaints Commission regarding recent ME articles in the media which have presented only one viewpoint.

I'm not sure what Simon was doing when I was in a neurology ward having a plasma exchange for my false illness beliefs in 1984, but I'm sure as hell Max was still potty training.

Am having an MRI scan tomorrow - sciatica - and one of my brothers told me it's a 'noisy clanging bastard' - the machine. Still, will be a pleasant change from the persistent din of Wesselymania.

All the fun of the fair.

Comment is free, so is exaggeration (by psychiatrists)

2011-08-27T01:16:00.024+01:00

I have a wee post up on Comment is Free, one of four on living with chronic illness. I think the thread is open for a couple of more days, you just need to register with the Guardian. Easy peasy.

Simon up to his tricks again - this time in The Spectator, yesterday. Simon has moved away from the threats theme - he really has milked that one - and is now - incredibly - slagging off ME patients from late 80s, claiming they irritated the neurologists to whom they had been referred. We have to take Simon's word for this - and we know what a reliable witness he is. He claims that these patients were pissing off neurologists by insisting they had an illness called ME. Funnily, enough I didn't tell my neurologist I had ME, he told me! I'd never heard of it (1984). I think that's what's meant by diagnosis, Simon. In fact, my neurologist was so irritated by me, he offered me a plasma exchange and immunosuppression - which I accepted. You see I was so fucking ill I would have done anything to get better.

It truly beggars belief that an individual doctor can seek - with catastrophic results - to overturn the reality of so many patients, and the reality of other doctors and researchers. You really have to wonder what makes him tick. And the journalists who endlessly recycle his beliefs as if he had won the Nobel Prize for Medicine are no better.

The ten o'clock cat

2011-08-26T00:06:00.007+01:00

Am overjoyed when the seasons change and you can cast off your socks and have feet warmed up by the sun. I can barely admit it's time to put them on again. My overriding memory of this summer is when we had gales in May and the beautiful pink poppy was battered to death, not even 24-hours-old. It looked like a murdered ballerina, lying in the grass. In July, a cat started to come to the garden nightly around 10pm. He lay down next to the lavender and chives. There must be a hot spot he likes. He is huge, black and white, like a Holstein cow. I call him the ten o'clock cat. He's stopped coming though he was here last night at 8.30pm.

Storytelling (6)

2011-08-24T00:06:00.003+01:00

Interesting blog post here from BMJ - discussing the way we use metaphors to understand and describe illness. I left a comment and only later realised the author of the piece is a psychiatrist; my comment has not been published so perhaps he is of the Wessely persuasion, who knows (or perhaps he simply has not had time, I prefer to think that is the reason, but one never knows, these days). Professor Wessely, as we know, takes metaphors and illness a step further and actually declares the illness to *be* the metaphor itself. Quoting him from the Times, the weekend before last: “Like it or not, CFS is not simply an illness, but a cultural phenomenon and metaphor for our times.”

Yup. All getting a bit Elaine Showalter.

It's worth noting that there are, of course, fine psychiatrists - and psychologists - who fully understand that ME is neuroimmune and don't give us more grief to cope with than we already have - ie coping with the illness itself.

I also want to flag up Hillary Johnson's Osler's Web website. I still remember receiving my copy of Osler's Web in 1997, my brother had posted it to me from USA. It's funny, in my head the book is orange, but in reality it is only the spine that is orange, the cover is black and red with a little white - but my memory is of opening a package with an orange book inside. I went to Hillary's blog last night to follow up a comment I'd left earlier and was delighted that she mentioned she had very much enjoyed The State of Me, she calls it 'classy writing'.

In 1997, the year I opened an orange book that was not really orange, I'd only started thinking of the possibility of writing a novella - never imagining I would cope with a full length novel - about the illness. There is, interestingly, orange - the colour and the fruit - in The State of Me. It features a fair bit, no idea why. (Swans do too.)

This extract describes Helen Fleet's 21st birthday:

She has lots of cards with a dual message: Congratulations on the key of the door! Get well soon! She thanks everyone politely. Her arms and legs are injected with poison. She doesn’t have the strength to peel an orange. Her mother has made beef stroganoff (the cows haven’t gone mad yet) and fresh cream meringues. Helen has her birthday meal on a tray in bed. She has a sip of champagne. Jana sits with her and makes her put on her new lipstick. Helen feels like a clown, a grotesque invalid wearing bright red lipstick and titanium earrings.

* My comment on BMJ blog has been posted, so I am glad, not being censored, after all.

Storytelling (5)

2011-08-21T15:38:00.047+01:00

More Wesselymania from a UK press apparently lobotomised when it comes to reporting on ME. Wessely jerks these health editors like puppets, it's truly obscene, this cartel of hyperbole and hysteria. We have been treated by the media to a cruel distillation of events since 29 July. Only one side of the story is reported. No mention of the abuse PWME endure from CBT psychiatrist militants. Really - why are Wessely and co still going on about these threats? If they have indeed come from a *tiny* minority of the patient community - why then the need to bleat to the media every week? The way this is being reported you would think these researchers were trembling for their very lives as we speak. Has the Science Media Centre secured Simon a slot in every newspaper every weekend 'til the end of time? (As someone said elsewhere the Science Media Centre is the Science Mendacity Centre when it come to the reporting of ME, which it constantly conflates with 'chronic fatigue'. And Simon, of course, sits cosily on the SMC panel.)

I also see he has changed his wording about Iraq, he is less glib now.

It is really time these people grew up, and left biomedical researchers to do the real job. If they want to research nebulous 'chronic fatigue' - apparently common! – ME is NOT common – that’s fine. But please leave those of us with neuroimmune illness alone and stop causing us harm with your obsessions and inability/refusal to embrace actual science.

And let's just remind Wessely and his disciples of the International Consensus Criteria for ME, published in Journal of Internal Medicine in July 2011.

From Abstract: The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).

And let's also remind them of a recent BMJ thread which the Observer writer must surely have missed when he was recycling - sorry, researching - this article.

Storytelling (4)

2011-08-17T09:00:00.009+01:00

Been resting solidly for two days to be okay for some storytelling today at 4pm. There's a teaser trailer audio clip here (and the text of my flash fiction). Some great new writing talents emerging, I'm enchanted to learn of them. My library books are overdue - can't renew them online as others want them - but I've had to measure out energy like gold coins and am not certain I'll get them back by the end of the week. I feel like a bad citizen. I'm very proud to be doing this wee ten minute slot today at the book festival. Take note, Wessely school: people with this illness do everything they can to achieve, in spite of it all!!! (Just realised am shelved above James Joyce, that makes me smile!)

*There is some great storytelling going on here, I urge you to check out some of the others. The way it works is the pre-recorded clip goes up in the morning as an appetiser and the full texts are published after the 4pm reading. (And I dig how the banner photo makes me look like I was standing - I was sitting and managed to kick a glass of water over during the reading, naturally.)

A Guatemalan poem

2011-08-14T00:06:00.000+01:00

I love this gem by Guatemalan Maya Indian poet Humberto Ak'abal, translated into Scots by James Roberston. The collection is called Drum of Stone . I came across the link in the first place here. Thanks, Twisted Knickers. A fabulous wee poem.

Wee oors

In the heich oors o the nicht
stars strip aff
and douk in the rivers.

Hoolets grein for them,
the wee feathers on their heids
birse up.

Writing emails when you should be the air traffic controller

2011-08-13T00:10:00.006+01:00

I don't want to give Stefanie Marsh's love letter to Simon Wessely last weekend more oxygen than it has already had, but a week later I'm still angry - and incredulous -at such sycophantic nonsense being published. There have been some excellent responses which we will no doubt not actually see published - or if we do, they will be edited versions that very much dilute the criticism aimed at both Marsh and Wessely - so I'm highlighting the 25% ME Group's response and also the European ME Alliance's. Both bang on. My own response will, of course, have been rejected, I imagine it is too tongue-in-cheek. When I wrote it in draft, I had both my nephews at my feet, literally, they were on the floor playing at airports, they have a plastic runway map and toy planes; I explained to them I had something very important to do. I was the air traffic controller and I apologise to them again for taking time out of such an important game to write the email, wasting precious time with them. I just felt so misrepresented - and insulted - I had to do something.

Dear Editor

Stefanie Marsh's interview with Professor Simon Wessely ('Doctor's hate mail sent by the people he tried to cure', 6/8/11) would be almost amusing in its bias and hyperbole, were her inaccuracies not so alarming. I was diagnosed with virally-induced myalgic encephalomyelitis (ME) in 1984 by a consultant neurologist, so it's fair to say I have an in-depth knowledge of the illness. It's worth noting I'd never heard of ME - and the label CFS had not yet been coined - when I got ill, but I was transformed from a vibrant, straight 'A' undergraduate to a grey and bedridden 20-yr-old. I feel obliged to say that I do not recognise Professor Wessely as 'Britain's foremost authority on ME' and I do not know any ME sufferers - or doctors - who do. I wonder, therefore, if Stefanie Marsh could provide us with a list of these 'health professionals' - in the UK and worldwide - who hold Professor Wessely in such high esteem in relation to my illness? She reports with great confidence on Professor Wessely's credentials and I am genuinely curious to know.

Yours sincerely,

Nasim Marie Jafry, author of 'The State of Me'

Edwin Morgan poem

2011-08-11T13:19:00.006+01:00

I came across this Edwin Morgan poem in the comments thread of an article on the riots by James Meek in LRB.

Glasgow 5 March 1971
With a ragged diamond
of shattered plate-glass
a young man and his girl
are falling backwards into a shop-window.
The young man’s face
is bristling with fragments of glass
and the girl’s leg has caught
on the broken window
and spurts arterial blood
over her wet-look white coat.
Their arms are starfished out
braced for impact,
their faces show surprise, shock,
and the beginning of pain.
The two youths who have pushed them
are about to complete the operation
reaching into the window
to loot what they can smartly.
Their faces show no expression.
It is a sharp clear night
in Sauchiehall Street.
In the background two drivers
keep their eyes on the road.

Edwin Morgan

Storytelling (3)

2011-08-03T00:52:00.077+01:00

This is a (much needed) happy post about storytelling, no sleekit medics twisting narratives of illness to suit their own agendas. (Nice to have a shiny PR machine to cover your back whenever it suits. 'Researchers are leaving the field because they are being abused.' Really? A shame ME sufferers can't leave the field because they are being abused. And this, the icing on the cake, which just really leaves you speechless, such are the inaccuracies. What these journalists care not a whit for - and actually seem to get off on - is that grotesquely skewed articles like this leave you feeling upset and dazed for the rest of the day. I could barely function on Sunday, the words go round in your head, the crass injustice of it all, still going on. Still. I put frozen fish in the oven instead of the defrosted piece I'd left out. A whole fucking fillet of (partially baked) iced fish wasted as I had to throw it away when I realised.)

No, I'd much rather talk about a fabulous initiative called Story Shop, which gives emerging local writers a platform for their words at Edinburgh International Book Festival. I have a wee ten minute slot, although I'm more 'emerged and resting'. As a writer, my trajectory is not the norm, to say the least - I live more in the margins of the writing life - necessarily so - and this is a lovely opportunity, I'm thrilled. The Spiegeltent - a fixture at the book festival - which I shamefully just learned means mirror tent - is like stepping into a magical kingdom where anything could happen. I will read 'The Bangle Man', the flash fiction I contributed to the fundraising anthology 50 Stories for Pakistan, last year, and hopefully get new readers for The State of Me. More than ever the truth needs to be heard.

It struck me yesterday that 'The Bangle Man' includes a line about a memory of an earthquake - 'white dishes sliding off the table at breakfast'. The memory is my own from childhood, fictionalised. And I recall, a few years ago, being in the Spiegeltent with friends and I'd sat down on the edge of a trestle table to rest - always looking for somewhere to sit - and in slow motion the table started to collapse and the cups slide off. It reminded me of the earthquake - or the memory of the earthquake - which is now in the story. So now I have a memory of a memory of a memory. My friend rescued the table and I didn't cause too much chaos.

I've written very little since The State of Me, only a few short stories. It's hard to explain just how exhausting writing a book is - writing is more physical than you would think, as Martin Amis says - and I still have not felt able to embrace a new project, a sustained piece of writing, though I have ideas - there are always words in my head. Always. (So much of writing is thinking.) But my absolute priority just now is to be as 'well' as possible, which has been even more thwarted this last couple of years as I've had to deal with some bizarre autoimmune quirks, recurrent uveitis being the most frightening, in remission for now, thank God, but still being treated. I don't blog much about it but it's been scary as hell.

I love when Geoff Dyer says in Out of Sheer Rage: '... books, if they need to be written, will always find their moment'. The travel sections of Dyer's book can seem a bit dated but he makes me laugh out loud with his observations on writing. He is also very funny on Beryl the Peril as academic.

So here's to storytelling, the good kind! And new voices.

Horror stories

2011-07-28T10:58:00.060+01:00

So disheartening to read that there could be more floods in Pakistan. Really - how much can these people take? Too much bad news just now: I've refrained from commenting on Norway. Or Amy Winehouse. Seeing the news of her death last week against the background of the massacre in Norway was almost like a parody of bad news, you couldn't really absorb it or take it seriously. Still, I think people who - uncharitably - commented along lines of 'Norway was real tragedy, Winehouse was self-inflicted' were simply so upset by Norway, they didn't have room for anything more. However, neither did I go all dewy-eyed at Amy's death. The media of course made a gargantuan meal of her untimely passing. This BMJ article was best thing I read. My father was also an addict - alcoholic - and also talented - a consultant anaesthetist, handsome in an Omar Sharif way. He took his own life when he was fifty-four. He left behind a twenty-eight-year-old widow and three children under eight. Addiction is ugly - whether you are famous or not - and there are a million horror stories out there. Some manage to turn their broken lives around. Some don't.

Robert Louis Stevenson

2011-07-22T00:06:00.002+01:00

I've been dipping into the collected letters of Robert Louis Stevenson, he makes me smile: Yesterday I had toothache, and today I have a crick in my neck. These are details, but eloquent to me. I like his lack of self-pity (he was ill with TB for most of his life).

I also came across his description of John Sargents' painting of him and his wife Fanny: Sargent was down again and painted a portrait of me walking about in my own dining room, in my own velveteen jacket and twisting, as I go my own moustache; at one corner a glimpse of my wife in an Indian dress and seated in a chair that was once my grandfather's, but since some months goes by the name of Henry James's for it was where the novelist loved to sit...

We did Weir of Hermiston in my final year at school, I really should re-read it. He died before it was finished, he was only forty-four. When I read the book, I had no sense of how tragically early his death was. I was sixteen.

Will adopting the Canadian criteria improve the diagnosis of ME?

2011-07-21T12:43:00.117+01:00

All of us with ME - the neuro-immune illness myalgic encephalomyelitis - want the Canadian Clinical Guidelines to be universally adopted, so that when our illness is being diagnosed/researched we know it is our illness and not less complex, nebulous fatigue 'syndromes'. It's hardly rocket science. The current chaos of criteria is why we have people all over the Internet claiming to have recovered from ME, touting nonsense about how 'believing they can get better, got them better'. It's because of hopelessly flawed criteria that these people have been told they have ME in the first place, or more worryingly may have diagnosed themselves. This is why we are so angry about the PACE trial, almost £5 million being spent on, well, nothing. (PACE used the Oxford criteria, devised by UK psychiatrists, which actually exclude neurological disorders, so that people who are a bit fed up and deconditioned can actually be diagnosed with ME. Yes, you couldn't make it up!) Dr Esther Crawley and others have revived the recent BMJ thread on ME and posed the question: Will adopting the Canadian criteria improve the diagnosis of chronic fatigue syndrome? The answer is, of course it will! Dr Crawley and her colleagues are - unsurprisingly - dragging their heels. Responses including my own here. I love how Dr Enlander, an ME specialist who practices in New York, subtley disses the Oxford criteria.

Thanks to Dr Speedy for the link to the Canadian Guidelines above.

***And here we have the recent 'International Consensus Criteria for ME' from the Journal of Internal Medicine, which highlights the ludicrousness of the term chronic fatigue syndrome. And furthermore suggests 'post-exertional neuroimmune exhaustion' as the key symptom instead of 'post-exertional malaise'. Hallelujah! They have my vote!

Candle

2011-07-20T00:17:00.009+01:00

I lit a candle for my wee aunt yesterday in St Giles' Cathedral , which is a hop and a skip away from me. I can't recall ever going in, I have only lived here for fifteen years! Though I'm sure I must have. It is simply breathtaking inside. I must go more often, it is an oasis.

Storytelling (2)

2011-07-18T00:57:00.087+01:00

Truly disheartening to see 'chronic fatigue syndrome' - unforgivably and ignorantly - referenced as a modern form of hysteria by Asti Hustvedt in her book Medical Muses - this from Guardian reviewer:

This turns Hustvedt's book into a study of how the diagnosis of illness can be chosen, a negotiation between doctor and patient. With a nod to contemporary life, Hustvedt points out that "no drug exists to cure anorexia, bulimia, self-mutilation, chronic fatigue syndrome and multiple personality disorder and no genetic flaw has been found to explain them. Furthermore, as was true for hysteria, these contemporary disorders are thought to be contagious, spread by suggestion, imitation and therapy."

It would appear she needed some juicy 21st century illnesses to compare to late 19th century 'hysteria', and lazy googling led her to believe that 'chronic fatigue syndrome' fits the bill. Of course, one is immediately reminded of the dreadful Elaine Showalter. A shame she (Hustvedt) hadn't been more diligent in her research, her book sounds like it might have been interesting, but this juxtaposition of chronic fatigue syndrome with anorexia and self-mutilation and multiple personality disorder is simply alarming.

More here.

It also made me think of the novel The Story of Marie and Blanche by Per Olov Enquist, about which I wrote a few lines a few years ago. Am sure certain medics (and a certain academic) would still love to get out the ovarian compressors for women with ME. Maybe the NICE guidelines can add the compressors to CBT and GET?

Storytelling

2011-07-13T13:30:00.008+01:00

I finished The Vagabonds' Breakfast by Richard Gwyn a couple of weeks ago. The author is undeniably amiable and erudite, someone you'd want to have coffee with, but I found at times there was a lack of narrative drive, he seems to endlessly hang out with a ragtag of bohemian drunks in exotic, interchangeable locations, and you almost get the feeling he is putting this all down not for us but for himself. Still, all in all, a pleasurable read and his tone is always calm and poised even though he's often describing chaos and darkness. You almost forget he is ill he has so many (other) interesting things to say. Towards the end he discusses our need for narrative both as writers and human beings, the endless retelling of stories we go through:

...This eternal recounting, this need to tell and tell, is there not something appalling about it - and not only in the sense of whether or not we consciously or intentionally mix reality and fiction? Are there not times when we wish the whole cycle of telling and recounting and explaining and narrating would simply stop - if only for a week, or a day; if only for an hour?...

I absolutely loved that part.

And I hope this is still available for listening. An Irish writer with ME, Mark O'Sullivan, discusses his craft and illness: 'The whole thing with ME is about pacing'. (I also like his comment about building a book very, very slowly with 400 words a day, though for me it was often less - or no words at all. And it's the editing that really kills, leaving you on the floor, weeping with exhaustion.)

And some fabulous new fiction (an intentional mix of reality and fiction) here from the RCGP (Dr Gerada, Wessely's wife is the Chair), attempting once again to reclassify ME as a functional disorder rather than neurological. Did you know that according to the authors of this paper my illness is 'known colloquially in the UK as ME', so when I was diagnosed in 1984 and the consultant neurologist said I was gravely ill with myalgic encephalomyelitis (ME) - which I'd never heard of - he was using a colloquialism! Really, these spin doctors should get a major literary prize for their fiction.

Some more gems from these new guidelines:

GPs are encouraged to 'connect with patients by listening carefully to their beliefs about their symptoms'. Oh, just fuck off, will you! (Did you get that, Mr Hawkes, do you see what a hooligan patient I am?)

'Take a detailed bio-psychosocial history'. (Easy-peasy: I was absolutely well until I got Coxsackie B4 virus and then I was absolutely ill. End of story. An abnormal immune response which has ZERO to do with psychosocial bla bla bla.)

And still, all too predictably, peddling CBT and (dangerous) GET as the most effective therapies - oh, they are tenacious, these storytellers extraordinaire!

I will let the legendary Dr Speedy have the last word.

Gorgeous

2011-07-10T11:41:00.017+01:00

My wee aunt's service was beautiful and simple, overwhelming too, I'm all cried out. A Catholic service just as my granny and grandad - and she herself - would have wished. I have no religion but the hymns were gorgeous and even the interludes of readings/prayer - a kind of buffering from what is about to happen, the actual burial. Like any funeral or wedding, family members thrown together, people we don't see for years on end, suddenly in the same space. There's much to catch up on, but not enough time, conversations started and not finished, and as usual I was talking so much - someone asked me about my book - I did not manage to finish eating, the tables were being cleared, so I nabbed a scone away with me though I had to forgo the jam and cream. The last time we were all together was at my granny's service almost three and half years ago. At that time, my publisher had just gone into liquidation and the book's future was in horrible doubt, so it was so lovely, this time, to have people coming up to me saying how much they had enjoyed it. The morning of the service we were staying with my aunt and uncle who live very near the street I grew up in and I joked with my mother that I was up so early I felt like I should be going to school.

Shameless

2011-07-06T00:06:00.015+01:00

Some shameless self-promotion for which I apologise (to myself mostly), it feels a bit wrong with all that is going on, but the Kindle version of my novel is currently only 99p. What on earth can you buy for 99p these days? (And while I'm sure the Kindle version is lovely, it's not identical to the paperback, asterisks have been substituted with white space to indicate new sections/episodes, so the narrative pauses *may* feel subtly and slightly different in some places. I'm very interested to hear feedback from anyone who has read the Kindle version, what does it feel like?)

(And if you are an Apple person, 99p here too).

Darling wee aunt

2011-07-03T00:06:00.014+01:00

My wee darling aunt passed away yesterday. I didn't think I'd get up north in time last week and it was such a gift that I got to see her and kiss her and hold her hand again. She had strong notions of heaven - she was brought up Catholic and loved the campness and pomp and ceremony of it all. I hope in her heaven there are tomato sandwiches (her favourite) and Scottish pipe bands (she loved dancing) and policemen (she loved men in uniform) and giant packets of felt pens (she was a dabhand at colouring in, never going over the lines) and most of all, her beloved mum and dad. All of us - her cynical/agnostic/atheist family - so very touched to see her rosary beads wrapped round her wee hand - placed there by my uncle, I think - as she lay in hospital these last six days. She inspired the character Brian in my book and I love that some of her quirks are in those pages forever. So, goodbye, my darling wee aunt. I hope you are peaceful now. If I can be half the auntie you were I will be doing just fine.

(I would like to add that her care this last week was exquisite and sensitive, all thanks to our wonderful NHS.)

All

2011-06-26T22:58:00.011+01:00

All I've seen of Glastonbury is two Glasvegas songs; one Coldplay ('Yellow'); a few seconds of U2 (can't bear them); and tonight I happened to switch on and Tricky was on stage with Beyonce for a fragment of time, it was bizarre, he was like a wee scared boy miming, you couldn't actually hear him. I wanted more of him. I vaguely recall, some years ago, seeing him in a documentary where he was wearing a dress - or said he liked wearing dresses, my head is not clear - and I loved him, there was a poignancy. I must dig out Maxinquaye.

BMJ editorial on ME

2011-06-23T12:05:00.018+01:00

Here's a recent BMJ editorial on ME by Fiona Godlee and my response (which has been slightly edited, I stated that Wessely and colleagues had conflated ME with chronic fatigue, but their names have been removed). We are illness of the week! There are three other articles: one by an ME sufferer Ollie Cornes, one by the deputy editor Trish Groves and one by a freelance journalist Nigel Hawkes, which is breathtaking in its distortion of events. We are being manipulated to feel sorry for psychiatrists. All the fun of the fair! The MEA has linked to the full articles here.

*I also now have a comment up on the Hawkes' article, also one rejected, (see below in comments). There are some excellent responses to Nigel Hawkes.

** I see Norway has rejected CBT and GET as therapies for ME. If this were the Eurovision they would get douze points!

***A brilliant response to Fiona Godlee by ME sufferer and former director, Caroline Davies.

Seeing the light

2011-06-17T12:02:00.010+01:00

I had to replace a 60 watt bulb (a real light, the incandescent kind) the other day and the choice was dazzling - halogen, energy-saving, LED - guided by a chart converting watts to lumens (lumens are the new watts). There's no equivalent to 60 watts, I was advised on 55, the nearest, and of course it's rubbish, too dark. Saving energy is all very well (I'm an expert, after all!) but I confess I yearned a little for the days where the choice was bayonet/screw-in and soft pearl/harsh prison light. And in case anyone is losing sleep wondering what the hell a lumen is, here you are, it all comes down to candles on a cake.

How?

2011-06-15T14:03:00.014+01:00

This week, BBC Alba ordered my book for researching a documentary on ME. And last week, I asked HarperCollins to send Yvette Cooper MP a copy after her interview in The Telegraph. I love that the novel continues to make its mark, slowly but surely. Recently, I quipped on an ME Association forum that it was almost 'easier' having ME in eighties, pre-Wessely, pre-PACE, pre-XMRV, then it was more simple (but still terrifying), us against the rest of the world, people with ME were very sick, lives torn up, no half measures, and the 'yuppie flu' label was our fight. It seems more complicated now, so many subsets of the illness, even more of a battle to be heard, and I'm glad I'm no longer bedridden (occasional dips, as long as I pace) as I don't think I would cope with the controversies. How can we have made so few steps forward in thirty years? (Well, I know how...)

*When I say no longer bedridden, I mean no longer forced to be in bed day in, day out, with the toxic awfulness of symptoms. I still have to rest a lot, bed or sofa, especially after exertion. I think of the enforced bedridden phase as a kind of ME apprenticeship that many of us have served, and sadly, some still serving, an unrelenting, unforgiving apprenticeship that never stops.

The cheek of magpies

2011-06-12T13:02:00.016+01:00

There's a magpie that ignores me when I knock on the window, it flies away and dips right back, its chatter reminds me of an evil toy train, starting up and stopping, over and over and over. I think of chapter seven of my book, Helen Fleet:

Can’t sleep for the clenching pain in my spine and legs. The birds have started. They’re like electronic gadgets set on a timer. They start off one by one and you can’t switch them off: a pigeon, a woodpecker then the din of the crows. I hate them all. I can’t stop thinking about Valerie’s blue lips.

I think she will die soon.

The difference an 'o' makes

2011-06-11T00:06:00.003+01:00

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.

Standing around...

2011-06-04T13:00:00.010+01:00

Standing is often more exhausting than walking, I will always sit down, as soon as possible. At my local bus stop, there is no seat so I sit on the window ledge of the shop, no doubt peeving the owners. The other day, waiting an interminable amount of time for the green man at a pedestrian crossing, I felt the very life drain from me and I had to step back and lean against the nearest wall, a beauty parlour recently closed down. It occured to me later, this must have looked odd, my leaning, one knee raised up - I may have looked like I was soliciting.

Narratives of illness

2011-05-26T00:06:00.095+01:00

I've been thinking recently about what books I read when I first got ill. I didn't read about illness, I simply read what I was already reading: novels. I struggled to read French, my huge dictionary clunked beside me in bed, I was trying to hang onto myself, the person I was. I never finished Voyage au bout de la nuit, it's still on my shelves. I persevered and persevered with Midnight's Children. My copy is yellowed now and I cannot open it or smell it without remembering being very ill. And yet it's one of my favourite books.

The only book on ME I had was Dr Melvin Ramsay's slim The Saga of Royal Free Disease (1986) - it is still my bible. I had a couple of self-help books by Drs Anne MacIntyre and Charles Shepherd, but that was not 'til the early nineties, I can't recall exactly (I gave one to a boyfriend, I still have one on my shelf). It was in the nineties that I actually read most illness books, a good few years after getting ill. I borrowed (and still have, I'm a bad person) Norman Cousins' Anatomy of an Illness (1979) (he used intravenous vitamin C, a treatment I'd also tried with positive results) from an American friend. In a more spiritual phase, I bought a book called The Alchemy of Illness (1993) by Kat Duff. My brother sent me Osler's Web (1996), which I still dip into and refer to. And I still love and dip into Susan Sontag's Illness as Metaphor (1978) - who doesn't?

These days, when diagnosed with an illness - any illness - you have a treasure chest of books to try - self-help and memoir - not to mention the stories, some gems, that Google can unearth. Naturally, you devour this information, you need to know exactly what has punched into your life, derailed you. You are sustained by others' narratives. You need reassurance. You need confirmation (certainly in the case of ME, so great has our fear been of not being believed). Of course, the quality of all of these shared narratives - online and off - varies greatly. There have been one or two ME self-help books I couldn't get to the charity shop quickly enough.

The misery/illness memoir really took off in mid-late nineties and by the time I was writing about my own illness the genre had - in my opinion - been done to death so I veered as far away from it as I could. This did not stop some editors from trying to pigeonhole my novel as 'sicklit'.

There are, I think, many more works of fiction on mental illness than physical illness. Perhaps mentally ill characters are seen as more interesting, they are more likely to behave 'badly'. (If you are physically ill you are dull and boring, not taking part. Or you die.) I did read Helen Garner's novel The Spare Room (2008) - about friendship and cancer - I enjoyed it but didn't think it lived up to the hype (the ill character also has intravenous vitamin C, and she is definitely not dull).

Now, when I read about illness (non-fiction), I want to read about other things, not just the illness. Last year, I loved Elisabeth Tova Bailey's The Sound of a Wild Snail Eating, it is very much about other things. And I'm currently reading The Vagabond's Breakfast by Richard Gwyn, I saw Me and My Big Mouth review it. I don't always share Scott's taste in books - he hates Midnight's Children! - but I'm very much enjoying this. It is about other things.

And the writing has to charm me, always the writing.

I guess what I am saying - in a very longwinded way, what the hell is happening? I prefer brevity in all things - is that when you are ill and you have stopped being stunned by the event, you may actually hunger for illness narratives; later, you simply don't need or want them (unless they stretch out beyond the illness and tell you about the world). I know that people who are not ill will see things differently. The world of illness is new to them. Unusual and strange.

***A lovely quote from Kat Duff, which I just found underlined in green pen (can't help wondering how long ago I did this and why green pen): ... Frankly, from the point of view of illness, healthy people seem ridiculous, even a touch dangerous, in their blinded busyness, marching like soldiers to the drumbeat of duty and desire.

'One Of Us Cannot Be Wrong'

2011-05-19T00:06:00.015+01:00

'One Of Us Cannot Be Wrong' is, of course, one of Leonard Cohen's (many) fabulous songs. I've had it in my head since The Lancet published its editorial the other day on the hugely negative patient response to the PACE trial:

...But one cannot help but wonder whether the sheer anger and coordination of the response to this trial has been born not only from the frustration many feel about a disabling condition, but also from an active campaign to discredit the research...

Oh for Jesus' sake, patronise and demonise us some more, why don't you?!

The Lancet received forty-four letters of complaint and published eight. It did not publish any from patient charities. Here once again are the ones rejected.

Dr Speedy, as always, has a wonderful take on things.

So it goes on, a handful of (biopsychosocial) researchers v. patients worldwide disagreeing passionately on the safety and efficacy of graded exercise and CBT for a neuroimmune illness that has torn up many of their lives.

As Leonard says: One Of Us Cannot Be Wrong.

***Cheney P, Orlando Workshop, International Congress of Bioenergetic Medicine 1999, audio tape #2 (“The most important thing about exercise is not to have them do aerobic exercise. If you have a defect in the mitochondrial function and you push the mitochondria by exercise, you kill the DNA”).

******If you are on FACEBOOK, please take a few minutes to vote for Whittemore Peterson Institute, it desperately needs funding. Nicky has clear instructions on her blog! Many, many thanks. The PACE trial wasted almost £5 million pounds on psychobabble, just think what biomedical gems that money could have unearthed.

**********Oh, it just gets better and better. I had wanted this to be a short post, I am so fucking exhausted with PACE and its fallout. Now we have them telling Professor Hooper that the trial was never about ME but about the much more nebulous 'chronic fatigue'.

Really, these PACE people should come up to Edinburgh and get a slot in the Fringe comedy circuit this August: the blackest medical comedy ever written and performed!

************** Countess of Mar wins award for outstanding services to PWME

Parody

2011-05-18T00:06:00.007+01:00

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.)

Heaven

2011-05-16T12:01:00.006+01:00

This is my idea of heaven.

Tweets & Kindles & Tulips

2011-05-14T11:36:00.073+01:00

Am almost afraid to blog after the last few days of chaos, previous comments still not restored, but I just want to link to an excellent post by Johan Mares. And this is positive news too. I felt like I'd been on a demo on Thursday night after tweeting for #may12th (reading tweets is energy consuming too, a cockpit of information), and I was pleased that Marco Biagi (newly elected MSP) and AL Kennedy (one of my favourite writers) RT'd one of my tweets, but of course the health editors ignored me, they ignored all of us. Someone remarked that Richard Horton (The Lancet editor) has his head in sand, I would like to suggest that his - and all the PACE supporters' - is somewhere considerably less pleasant. This is a timely article on the editing of health journals: 'Are journal editors like used car salesmen?'

The Kindle version of my book was briefly at #92 in literary fiction, I guess it spiked as a result of tweeting. I am told that Kindle is now 80% of market (of ebooks), though when I see one on the bus - kind of infrequent up here - I still think it has something of Star Trek about it.

I went into the garden on Thursday evening - post-demo - even though it was very windy, I needed air. My arms felt like rags, and my head had that horrible heated up, inflamed feeling. The tulips were streamlined by the gusts and made me think of a dog's ears being blown from a car window. They made me smile.

International ME Awareness Day

2011-05-12T12:49:00.001+01:00

I tried to integrate this image with my post below and all hell broke loose, my fonts have gone crazy, that's why yesterday's post may look like it has been typed, it has that strange typewritery font (though it may have been fixed by now). Anyway, hope the sentiment is still clear. All you unenlightened politicians and health editors and doctors out there - and there are good ones among you too, I know that - time to take your blinkers off. If any of you were unlucky enough to succumb to ME you would not be in the jobs you do, you would instead be fighting for recognition the way all of us with ME are. As Invest in ME said recently, addressing Richard Horton, Lancet editor, 'ignorance is not an option'.

Daisy Miller & ME Awareness Week

2011-05-11T14:24:00.005+01:00

What has Daisy Miller by Henry James got to do with ME Awareness Week? I recently came across the novella on my bookshelves and a sheet of paper dropped out: lecture notes from spring term, 1982 - my last term at uni as a well person. I recognise myself in these notes and it stabs me that when I wrote them I was essentially a different person. The notes brought back a memory of a letter from my English tutor congratulating me on my 'excellent' finals' paper - I think I'd answered on Daniel Defoe's Roxana. Of course, I was never able to finish my joint Honours French-English degree as I became ill that autumn, my year abroad in France totally disrupted. I had to come home - though (unlike my character Helen Fleet) I returned to France twice, desperately ignoring how ill I felt - and spent most of that year having medical tests. Foolishly, I dragged myself back to uni in autumn 1983 - all I knew was that I'd had Coxsackie B4 virus. The symptoms persisted, I remember clearly the overwhelming nausea and pain in my spine. I managed to get an Ordinary Arts degree, a degree all the same, but a lesser degree. I only needed one subject - a couple of classes a week - luckily I'd earned enough credits in my first two years. I was ill at my graduation and I look hellish in the official photo. I wouldn't let my mother display it.

My friends had not yet graduated, they were still studying for their Honours degrees. I was experiencing that first walling off, of not being part of the life I should be leading. That summer I got worse - my symptoms had literally multiplied - and was bedridden. I was diagnosed with ME by a consultant neurologist and in winter I had a plasma exchange, the first of many experimental treatments. The toxic awfulness of severe ME is almost impossible to describe:

We were all guilty of clichés.

Have to get worse before you get better.

Tomorrow’s another day.

Light at the end of the tunnel was the favourite, but my symptoms continued to synchronise themselves in a vicious kaleidoscopic pattern and all I could see was black.

(Extract from The State of Me)

I remember hell and enforced resting and hoping then pushing myself (again, far too soon) back to study part-time for an MSc - never feeling well, always feeling I was overdoing it. I've no idea how I got that degree, I took the 'easiest' modules, I took only afternoon classes so I could sleep late in the mornings. I sat in lectures feeling like I had a brick weighing my head down. I forced myself to go to classes even when my legs were like spaghetti. My academic self was lost, I couldn't retain anything, I cried in my GP's surgery because I couldn't remember. Some days were better than others. Then - was I fucking crazy? - I moved to London to look for part-time work - all my friends were in London and I thought there would be more choice of interesting jobs with part-time hours. I was thinking maybe eight to ten hours a week. I remember loving listening to GLR. I started volunteering at a centre for people with learning difficulties. One of the young men couldn't pronounce my name and called me semen, I don't think he knew what he was saying.

Four months later my whole body literally went numb in Oxford Street one day - a relapse so catastrophic that my mother had to return from abroad to care for me. There had been signs but I ignored them. Not everyone in my family was as supportive as they should have been and I haven't spoken to that person since (I think all of us have experienced someone close letting us down).

As I've said before, these days, I describe myself as moderate with severe dips (and I know I often come across as more well than I am). I must live my life by strict pacing, I have no choice now. It's intuitive, I don't even think about it. I can feel dramatically ill out of the blue, no warning. I'm never symptom-free and activity always makes me worse. Any activity. And even with pacing, the energy I do have would make a healthy person weep with disbelief and despair. I'm always housebound at some stage(s) in the week, just from the daily tasks of living. And yet I am lucky compared to some. But I can't help wonder how I would be now if I hadn't forced myself to 'recover' early on. I suspect considerably better. The problem was I didn't know what I was dealing with, I didn't know the nature of ME until I had lived it. It probably took me a decade to understand. And how could I ever have known that almost thirty years after getting ill, the circus of PACE would be the biggest show in town?

Thankfully, as a powerful antidote to this circus we have Invest in ME 6th International conference taking place on 20 May. I have now put Daisy Miller next to The State of Me. I sense that is where it belongs for now. I would like to re-read it. Less than ninety pages long, that's my kind of book!

Funking up illness with an umlaut

2011-05-04T12:06:00.031+01:00

So BACME (British Association of CFS/ME) have finally launched their website and are looking for feedback.

I'm immediately alarmed by their 'cool brand, ME with street cred' approach: I think it somewhat trivialises a neurological illness to add an umlaut, make it funky. Do these people think they are selling Scandinavian furniture or yoghurt? And correct me if I am wrong but does the umlaut over 'm' even exist?

Of course, when you look at the names behind BACME - Esther Crawley and Alison Wearden - you realise you just can't take this site seriously - and I hope others don't. They seem desperately to be trying to appear to believe that ME is neurological but everything about their language and tone - not to mention support of PACE and the Lightning Process - tells us otherwise.

Lining up

2011-04-23T00:06:00.002+01:00

When we were kids we lined up our Easter eggs on the window sill in order of size. By the time you took the egg out of its enormous packaging it was half the bulkiness. Separating the chocolate halves without breaking them was a skill. And finding the wee packet of smarties, or other treats inside, always such a thrill.

Ignorance about ME is unacceptable when you are editor of The Lancet

2011-04-19T13:29:00.066+01:00

I was updating my sis-in-law on PACE at the weekend and she said: 'Why are they doing this, what's in it for them?' I replied: 'I think they are in so deep with their lies, it is just easier to keep going than stop and say, Look we have been wrong all along, we are sorry.' My sis-in-law is German and she often refers to my 'pudding legs', meaning 'jelly legs', it always makes me smile.

Yesterday, I listened to Richard Horton, the editor of The Lancet, defend the PACE trial on an Australian radio programme. Horton described detractors of PACE as 'a fairly small, but highly organised and very damaging group of individuals who have ... I would say... actually hijacked this agenda, and distorted the debate ... so that it actually harms the overwhelming majority of patients'. (The irony, of course, is that he could be describing CBT/GET psychiatrists. And most people with ME are passionately against the bogus science of PACE, we are not a small group.) He went on to express his disdain for protestors for 'undermining the credibility and integrity' of the conductors of PACE.

And what about the PACE scientists undermining the credibility and integrity of patients with ME? (Got ME? Just get out and exercise, say scientists, The Independent, 18/2/11)

Meanwhile, Professor Sharpe had earlier said in defence of CBT and GET: '... you can actually make some changes in your illness, you don't just have to lie back and wait for time, it's worth a try ...'. It's that deadly little phrase that gives away the profile of these people: 'You don't just have to lie back and wait for time'. How dare he! Maybe if I had just lain back and waited for time, I might be more recovered than I am today, twenty-eight years after getting sick. I know from experience that graded exercise is harmful, I know pushing yourself beyond limits results in catastrophic relapse. (But I have neurological ME, not idiopathic chronic fatigue, so PACE is meaningless for me, contrary to the belief of its architects.)

What is disturbing is that if you had listened to this interview knowing nothing about ME, Michael and Richard could have come across as reasonable, rational medics - though Richard does at times seem petulant - while the ME population and its advocates are portrayed pretty much as rabble-rousers. The lack of balance is quite alarming. (This is reflected in the comments on the show's website. Why was there no patient representative on the programme?)

Invest in ME have now invited Richard Horton to the 6th Invest in ME International Conference, suggesting to him that such ignorance about ME for someone in his position is simply not an option. And Professor Malcolm Hooper has just published his official complaint to The Lancet online, which Richard referred to as a '43-page diatribe' during the Australian interview. I also see that The Lancet has just rejected the ME Association's letter of complaint about PACE.

And I thought an editor's job was to edit not censor!

***I would like to add that I just saw that Richard Horton had in March 1997 written an article for The Observer's Life Magazine, entitled Why Doctors are Failing ME Sufferers' (scroll down to Alison Hunter Memorial Foundation link to see the full reference):

Horton acknowledged that "today, physicians do not take kindly to being challenged. They feel defensive and insecure. They have become accustomed to unqualified respect and genuflection. Nowhere is this trait more obvious than in the treacherous swamp of confusion that is myalgic encephalomyelitis (ME)". Outlining the objections of the Royal College's Committee to the term ME as an unsatifactory label, Horton noted "they used this semantic quarrel to establish a cardboard case against the idea that chronic fatigue syndrome is an organic brain disease."

What on earth, we may very well ask ourselves, has happened to Richard Horton's critical faculties in the intervening fourteen years?

Full transcript of radio interview here via ME Assoc.

Moon

2011-04-18T14:14:00.012+01:00

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.

Professor Jose Montoya of Stanford University

2011-04-15T14:32:00.004+01:00

Professor Jose Montoya of Stanford University: 'In my view, chronic fatigue syndrome is another form of death...' 5.45 mins in.

And here we have - the opposite of science - a lamentable, patronising defence of the PACE trial by Vivienne Parry.

Bad attitude

2011-04-14T12:59:00.058+01:00

Interesting article on how ME is often perceived by doctors when you are consulting them for something unrelated. I recall a few years ago being given some test results by a consultant, they were normal, my book was about to come out, this was in my notes - when I told him what the book was about he did some internal shifting and said something like, Off you go now and enjoy life as if I were a five-year-old child who had grazed her knee. The word ME not only had zero impact, it had negative impact. I was furious afterwards, the way he had dismissed twenty-five years of serious, life-changing illness. He, of course, would - I hope - have no idea of the profound insult he had delivered me, he was just hopelessly misinformed about ME.

In her article above, Toni Bernhard, author of How To Be Sick: a Buddhist-inspired guide for the chronically ill and their caregivers, speaks chillingly of how a doctor 'disengaged' with her during a consultation as soon as she mentioned she had CFS. It's scandalous that we as a patient population still have to put up with this nonsense. If I had told the charming consultant I had MS, I imagine his response would have been very different. When I first moved to Edinburgh I had to 'shop around' to find a GP who believed in ME - this was mid-nineties. One woman I had a pre-registration consultation with told me I was too thin, asked did I eat enough, and made it very clear that 'she did not believe in ME, but she couldn't speak for her colleagues'. I left with a lump in my throat, consumed by anger and hurt at being treated so unjustly. It's exchanges like this that nick like paper cuts and after a lifetime, they turn into sores. Like most people with ME, I have a list of such stories.

And the PACE scientists have just reinforced this erroneous belief that ME is not a serious neuroimmune illness, but one that is reversible, curable by 'words and walking'. One of my favourite moments of the NIH workshops was when psychologist Fred Friedberg, in response to a neurologist's question about Chalder et al's claims to cure ME, dismissed the 'UK studies' as 'inflated claims'. It's 118 mins in.

NIH State of the Knowledge workshop

2011-04-07T13:29:00.023+01:00

National Institutes of Health State of the Knowledge 7 - 8 April workshop live now. Line-up of speakers here. Note that there are no psychiatrists present - exactly as it should be for discussion of a neuroimmune illness. How it should be, how it should always have been. I often think that even if there were a unique biomarker/cure for ME tomorrow the damage wreaked by the intrusion of certain psychiatrists over last twenty years could never be undone.

Update* I dipped in and out, I listened rather than watched, it was fascinating and refreshing to hear scientific discussion about ME with no bullshit abracadabra PACE nonsense.

Day One available to watch/download.

Day Two available to watch/download.

A review from USA , & an Israeli novel

2011-03-31T20:42:00.028+01:00

Thanks to Janis in USA for this interesting review of TSoM. I like her inclusion of other works that deal with illness. It really is lovely to still be getting reviews 30 months after book came out. I don't tend to write my worst days here, but I have been unable to do much today at all. I went outside for five minutes, it was freezing and the daffodils have been battered by the gales. I kept going back to bed, but I hate the feelings in my muscles, so I got up again. I went to the sofa and tried to read but my arms hurt holding the stupid book - no, not true, it's not a stupid book, it's a rather good novel called CrocAttack! by Israeli writer Assaf Gavron. Then I tried to 'meditate' - ie lie with eyes closed, but I can never empty my mind, NEVER - with some crappy New Age music - a CD I got in San Francisco in nineties - I feel like a parody when I listen to it, but it is undeniably relaxing all that cheesy tinkling of water.

Lovely

2011-03-27T00:06:00.006Z

A new Amazon review.

Good news

2011-03-25T16:18:00.007Z

Authors for Japan has raised almost £11,000 for the British Red Cross relief fund. Keris Stainton did a brilliant job of organising the auction and I'm pleased that The State of Me has been a tiny part of the project. I'll be posting off a copy to a young English woman who lives in Germany. I kind of like this connection, with my nephews being half German, it has synchronicity. And I will see those wee ragamuffins when they visit in a few weeks, the nine-year-old is a bit peeved that I don't have a football team that I actually support and was not remotely impressed when I cited Totti (Francesco) and Henri's (Thierry) handsomeness as reasons to support their respective teams.

'Untitled', a poem by Angela Carter

2011-03-16T01:20:00.006Z

Two unpublished poems by Angela Carter in last weekend's Observer. The one I have copied below is not online, only in actual newspaper:

Untitled

My cat
Is the snow queen,
This frigid virgin four
Winters old crooks
Her paw to wash a face
White
As starlight, twice
As cold.
She puts back
her ears like spoons
to listen to the wind
behind her.
She eats
For breakfast, hearts;
For supper, northern lights.

Mid-1960s

'She puts back/her ears like spoons/to listen to the wind/behind her'

I absolutely love that line, just love it.

Authors for Japan Auction

2011-03-14T17:40:00.039Z

Writer Keris Stainton is arranging an auction to raise funds for the British Red Cross Japan Tsunami Appeal. You can bid for signed copies of many authors' books and services. I've offered a signed copy of The State of Me, (#91). Bidding will start on March 15th at 8am and end on Sunday 20th. Please check out the auction tomorrow, lots of wonderful books on offer! Looking at media reports on the tsunami and earthquake, it is almost impossible to absorb the scale of catastrophe.

Imagine

2011-03-12T13:32:00.054Z

I was speaking on the phone to a friend with ME yesterday and we wondered what it would be like to have this illness without having to deal with the constant assault of ignorance. Imagine just having an illness, without the stress of feeling you are on trial constantly. (Imagine what our poor adrenal glands are dealing with, years and years and years of having to defend ourselves.) Most of the time you try and switch off, rise above it, get on with things, but then one morning you wake up to broadsheet headlines telling you that 'ME can be cured by exercise' - clever scientists say so! This unleashes such feelings of injustice and rage, you can't ignore it. You have to fight it. There is too much at stake. Then a few weeks later, as you are just calming down, back on an even keel, you happen to catch the end of a radio programme, a programme you wouldn't usually listen to, you are not usually awake. You are once again assaulted - by a tiny detail that may have gone unnoticed by many listeners, but not by you. You hear an actress whom you have admired in The Thick of It and Getting On, Joanna Scanlan, referring to her collapse from nervous exhaustion which led to a year's illness in the nineties. She describes how she had to give up her job as a senior lecturer and go back and live with her parents. She describes (51:30 mins in) how she had become disconnected from her passion for acting and how listening to Nirvana's 'Smells Like Teen Spirit' really helped her 'get back in touch with this creative path'. But in the middle of the conversation she slips in something deadly: Eventually the doctor diagnosed my illness to be what is sometimes called ME, probably in the old days used to be called a nervous breakdown... So once again the myth that ME is a mental illness is being perpetuated by a long, slow drip. I'm sure this actress has no idea of the blow she has just delivered, after all her doctor told her she had ME. It's great she recovered from her own particular exhaustion and found Kurt so rousing. Still, I wouldn't be surprised if the next headline is 'ME cured by listening to Nirvana'. It never fucking stops. And that is why we are so angry.

Blogging a tweet if that's okay, and not overkill

2011-03-11T17:07:00.014Z

Was very pleased to see Michael Nobbs, an artist with ME, tweet: I'd love to make Nasim Marie Jafry's novel The State of Me required reading for friends and family of anyone with ME!

I had no idea Michael was even reading the book.

As our illness continues to be spectacularly misrepresented by those in power - and those not in power - I am just happy that in a small corner of the world my book continues to inform and entertain.

Thank you, Michael, for your words.

The art of lying

2011-03-07T14:22:00.003Z

I refuse to waste any more energy or words getting angry or upset but this is how health editors were able to report so irresponsibly on PACE. The Science Media Centre, centre of obfuscation and confusion, as far as ME is concerned.

Light

2011-03-05T00:06:00.002Z

I love the evening light, I went into the garden the other night, just to look. In a corner, some beautiful wee blue flowers are pushing through, my neighbour gave me the seeds some time ago. They grew into a gorgeous carpet last year. I'm so pleased to see them coming back. This night I stared, I'd forgotten completely their name. I crouched down (my back stabbed me, which I did not like one bit) and touched them and wondered: what the hell are you called? This is what is meant by cognitive difficulties and M.E, it's not normal absent mindedness, it's like part of a database has been erased. There's a hole where the word should be. I can be in a roomful of people and suddenly not know the name of someone I've known for years. Anemones. They are called anemones.