The world is fucked and books are all we have

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

 Apes

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

Poem by Adam Zagajewski, from Without End

 *

On my bedside table just now are these:

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

*

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

*

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

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

*

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

I cried last Wednesday morning when I learned Trump was elected and I cried again two days later when I learned that Leonard  had died.

The world is fucked and books are all we have.

Carlos Acosta on BBC4

With television so dumbed down and dispiriting, was a joy to come across Carlos Acosta on Boxing Day night. My favourite dance was this piece, 'Derrumbe', about a marriage ending. The female dancer is Pieter Symonds. She is mesmerising. The music is spellbinding too. The whole BBC4 programme is available here for a while.

A game, a film & a book (The Lighthouse)

I woke with a brutal sinus headache (I'm prone since an over zealous use of mothballs triggered inflammation many years ago) and took a handful Nurofen, the only thing that begins to shift it. I've hardly been out this last week, you begin to feel like a mole, and my muscles are fucked from the exertion of the holidays but I had a ball with my nephews, or 'wee meerkats' as I call them. They got a boardgame called Pandemic which I still don't understand, I don't think any of us did, the list of rules is like an enigmatic short story, but we played anyway. We watched the Attenborough documentary, the male giraffes whipping each other with their necks, I had a nephew snuggled on each side, it was one of those moments when you are simply and gorgeously content, though the giraffes were upsetting and the meat-eating crickets the stuff of science fiction. The excellent film '5 Broken Cameras', in which Palestinian farmer Emad Burnat documents life in his village over seven years, is still available to watch free online. It will pierce your heart. At one point Emad says 'I film to heal'. I've started reading the Man Booker-shortlisted The Lighthouse, I don't love it, but I'm only 50 pages in and will keep going, something off-key  in the narrative compels me, even when I feel irritated, I don't, for example, believe that Fuch kept stick insects because his ex-wife wouldn't let him have a dog, it seems contrived. Sometimes it is like that with fiction, you are just not convinced. But it is short, and I prefer short books just now, and some reviews suggest this novel takes a while to get into. And Happy New Year! In Scotland we say it well into January if we meet someone we haven't seen yet.

*Update; my review of The Lighthouse is here.

Jim'll Fix It

Watching last night's Panorama, What the BBC Knew, in which the BBC investigates itself,  I was  reminded of how deeply we were all anaesthetised - for want of a better word -  in the seventies and eighties about the reality of who Jimmy Savile was: he was avuncular and eccentric, he was a good man; he was up there with Blue Peter and John Craven's Newsround, part of the safe furniture of childhood. My wee aunt with Down's Syndrome, a couple of years older than me, used to love him and I can see her vividly, grinning and giggling, her blue trousers, legs crossed, sitting on the floor watching Jim'll Fix It.

Last night showed a clip of Jim giving out medals to some cub scouts, instead of individual medals they got one big joint one, and he looped the medal strap round all of their necks. At the time, this would have been seen by us as playful and affectionate - watching now it's like he was putting a noose around their necks.

I reference Jimmy in my novel, my very ill character Helen wants Jim to fix it for her to be better. It's 1984. It feels odd  to re-read these words now.

At the weekends, I would sit clamped against the radiator or lie on the couch while Sean and his friends watched videos. Sometimes Ivan was there. The highlight of Saturday was watching Blind Date. I would fantasise about being chosen and worried sick about being sent on a date where you had to walk a lot. Sean said I should write to Jimmy Savile: Dear Jim, Please can you fix it for me to be healthy? I’m twenty-one and live in Scotland. I could see myself sitting in the television studio, with the medal round my neck, grinning idiotically at the audience. Rita and Nab would run on with tears in their eyes, thanking Jim for the miracle.

The  current disturbing BBC calamities aside, like so many, I cannot understand how others 'knew' of Jimmy Savile's crimes, but remained silent over the decades. Different culture back then or not I just don't get it.

Why I watched an episode of 'Doctors' - a daytime BBC medical soap

I can honestly say I never watch daytime TV, with the exception of when the Chilean miners were rescued, but I was curious about the ME storyline in Doctors I'd read about on the ME Assoc site so re-watched on iPlayer. You're hardly going to get an accurate portrayal of this complex neuroimmune illness in a fluffy, half-hour medical soap, but you could see the writer  was trying hard to weave some truth into this minor storyline. A young, hardworking girl felled by ME (no mention of the hideous CFS),  unable to start uni ('no one worked harder', her mother says), and left behind by all her friends. A supportive GP, going through his own traumas, and the overprotective  mother, both urging her not to overdo it.  However, the girl seemed only to have exhaustion, no other symptoms. 'Structured exercise' was the treatment (though she did not seem to be coerced), and the girl was cooperating, which is alarming as we know that graded exercise (GET) does not help ME (much more likely to exacerbate), but obviously the writer's research had led him to this. I can just imagine him googling and coming across all kinds of PACE nonsense.

Happily (ie realistically), the girl gets more ill from overdoing it, not stronger. But her 'relapse' - she is  dramatically found, crouched on the ground, leaning against a fence, out of breath  after walking too far to the shops - is not truly a relapse, but classic post-exertional malaise (PEM), which people with ME experience most of the time after exertion, to a greater or lesser extent, even if they don't overdo it (though she had overdone it for the sake of the storyline). It's unfortunate that relapse is misrepresented as feeling crap after overdoing it. A true ME relapse is catastrophic - a ton of crushing symptoms leaving you housebound/bedridden after a period of 'better' health. And I can't see a GP coming out on a housecall because you overdid it, that is simply ridiculous, but this scene was contrived to highlight the GP's own frame of mind, the girl with ME is coping psychologically, the GP is not (someone died in a fire, I have no idea of what went on).

I liked that the girl was feisty and jokey - irritatingly so, at times - and not remotely depressed. She was doing her best to get on with things, though the notion of confidence was overdone (getting on has nothing to do with confidence, it's to do with physical wellbeing). But it was made clear she was not lazy or depressed or a malingerer. I didn't like the GP's line that it's impossible to know the cause of ME, stress being the only suggestion (by the mother), and not a jot of a mention of a viral trigger. And, early on, the young girl says: That's the great thing about ME, everyone wants to help - and makes a daft joke about a funeral procession slowing down for her, but this just jarred, as it is simply untrue. Not everyone wants to help, no mention of the  doctors/health editors who have done so much harm since the eighties, and the not always supportive family and friends. Still, this is a very 2012 version and maybe regular Doctors viewers will have gleaned a little of the reality of ME. You can watch the episode here for another few days.

*I see  that the writer of this episode, Bill Armstrong, has written  an award-winning daytime drama The Indian Doctor. I find this reassuring.

Tumbling & falling

Realised yesterday the Olympic flame will go right past my flat, just like the Pope. At least I'll be prepared this time, and not think I'm hallucinating. There are coal tits - they are tiny! - tumbling and falling in the tree in the garden, like they're having their own Jubilee party - without the excruciating, ingratiating behaviour displayed by BBC -  and you can hear squeaking from the wall where they are nesting. Brilliant essay by Malcolm Muggeridge from 1955 on the toadying by public and media towards the royal family.

Have been dipping into Simon Barnes' Birdwatching With Your Eyes Closed. It's funny and informative, gorgeous, short chapters. I'm still hopeless at identifying birds by their song, but it's a joy to lie with your eyes closed and just listen.

 My 7-yr-old nephew is the more gallus of the two, though he can be painfully shy. Watching Springwatch last week, when the wee nesting warblers got eaten by a domestic cat,  he said: 'Cute cat'. How can you say that? I asked. He just smiled. Later, glimpsing David Cameron, he said: 'That man looks like a baby'.

My mother is improving - thankfully - though she's still not out of the woods. At times, I've been so exhausted, I've found myself walking around with my arms folded, holding them up, because they are so ragged. It reminded me of the darkest days of ME when  at one point I actually had a sling for my arms, they felt so ill. And I remembered not being able to stir soup.

A sabbatical from my sabbatical

Taking a wee sabbatical from my sabbatical from ME blogging, I just have to link to this Ulster TV interview with Dr William Weir and Dr Derek Enlander: 4:59 mins in Dr Weir refers to 'irrefutable evidence of immunological dysfunction' in ME and at 5:48 Dr Enlander speaks of the urgent need for a multi-disciplinarian approach: 'Psychiatric ailment in this disease is *secondary* to primary physical disease. This is a physical disease'. We all know this, these fine doctors know this - many fine doctors know this - but there are unfortunately silly billies (substitute another word for billies if you wish) who *still* don't get it. Tut tut!

Post-Alba: 'Toxic Tiredness' (Part Two) - updated

(*Having re-watched Part Two, I've now added to this post in bold at the end.  And Part One is blogged here. **Also, both parts are available on you tube  now. One here and Two here.)

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 consider pregnancy? 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 35 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 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. (And I comment on BMJ when necessary.) 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.

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 - I improved for a *very* short time with ACTH injections - 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 47 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/dismayed at how disrespectfully people can speak to one and other (especially those who comment anonymously or under pseudonyms), and I - for the most part - have learned to avoid those situations, where whatever you say will be skewed. However, 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. 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: 'Take psychiatrists out of the equation. Let psychiatrists study psychiatry, let neurologists,  immunologists, virologists, let all those good people study ME.'

Update: I'm less disappointed in Part Two on a second viewing. I think the story of ME  has been represented in as 'simple' a way as possible (and I mean that in a positive way). 'Trusadh' is a human interest/documentary format, it is not investigative journalism. As I've said before, it would take a six-hour Panorama special to portray what has gone on in the world of ME since my diagnosis. Kim (the photographer) has discussed in a new blog post his experience of being dissed ('CFS is not as real as ME'). I commented on his blog, in a respectful way, to highlight why this may have happened (not that anyone should diss anyone else, it is the medics who need dissed.) And I'm truly happy for everyone featured on Alba who has experienced an improvement in health. I did wonder if the young student featured in Part One had had a self-limiting post-viral state, or maybe he had a milder ME and recovered fully because he had rested sufficiently?

To have Prof Behan saying on television that there is an 'essential biochemical component to the illness which needs to be elucidated, and research should be along the grounds into these illnesses rather than dealing with psychological talk the talk nonsense' is just priceless. Also, I didn't realise he had examined some of the original Royal Free patients thirty years later, and that his late wife, Professor of Pathology Dr Mina Behan, had identified abnormal mitochondria in *those* patients.

Psychologist Professor Roddy Cowie rightly points out that scientific debate is often heated, not just ME. However, the history of prejudice against people with ME and the re-defining (hijacking) of criteria is what marks it out. After  almost 29 years of illness, I passionately adhere to the theory that ME is neuroimmune and CFS is biopsychosocial, and that it has been hugely harmful, misleading - and divisive - to conflate them. Still, the conflation is part of the narrative, and 'Toxic Tiredness' has shown this. But when anyone starts talking about changing lifestyle, and acceptance and banishing fear, I am pretty sure they don't  experience the same illness I experience.

The last word goes to Prof Behan: 'I have not seen any form of cognitive therapy or talking therapy to be of any value. I'm not saying that if someone who is in authority and who offers you warmth and kindness . . . won't have an effect for the benefit, it will, but the answer that it's the cure, I'm afraid, is wishful thinking.'

Toxic Tiredness (Part One) BBC Alba doc

Part One of 'Toxic Tiredness', the BBC Alba documentary on ME is now available on iplayer for 7 days. 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.

Also, although no longer severe (I describe myself now as moderate with severe dips, I am typically housebound for at least half the week, with essential sofa/bed resting in between), I think  I'm fairly typical of the long-term path from very severe to moderate/severe - with many relapses - major and minor - along the way -  reaching a plateau that you just can't get beyond. I often think of the very severe phases like a grim apprenticeship that we all must serve, and it is utterly tragic for those who remain unremittingly severe.

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, 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.


* 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 me, 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 the beginning and then at these intervals: 7.35 mins, 13 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...

Stornoway Gazette previews BBC Alba documentary

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.

Counting crows, & BBC Alba

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 almost 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.

You've got the sea in your eyes

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.

The Opposite of Nonsense

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).

Prepare

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

Shapeless

With typical aplomb I hurt my back on Boxing Day - brushing my teeth. I was forced to stay in bed. At least - at last! - I finished Wolf Hall. Such relief! Am in a festive haze of NSAIDs and co-codamol. It suits the time of year, such limbo, no man's land, neither here nor there, everything is shapeless. I surprised myself by watching a whole episode of Top Gear, they drove across the Middle East. Tomorrow, I will be glued to Dr Zhivago and cry my eyes out. Then my nephews come, I hope I am in less pain. I leave you with a fine post from Digitalesse on self-help books. I still have one of Dig's photos on my kitchen wall, a beautiful white cup.

Miranda & Voltaire

I don't watch I'm a Celebrity, Get Me Out of Here. I can't watch the spiders, that big one that they have between shots (the camera zooms in and I freeze). And I find it undignified eating insects unless you are actually starving. I happened to glimpse the quite awful not really a doctor Gillian McKeith, in the opening episode. I believe she has been pretending to faint. I do watch Miranda, though always forget it's on. I like the all too knowing nods and winks to seventies' comedy. And she is funny. Also enjoyed, on Monday, The Essay, Radio 3, on Voltaire. I listened in the dark with my eyes shut and a cup of Earl Grey (which I stopped drinking for years, it gave me a headache, but I recently restarted and remember how much I love it). I quite often sit in the dark and silence with a cup of green or black tea, just to completely rest my senses. I never take milk (in tea or coffee) and I hate herbal tea. This episode of The Essay had extracts from Candide, one of my favourite books. I still have my well-thumbed copy from uni, 1982. It is pink with a yellow trim, faded now.

Those corrections...

Forty seconds into The Review Show Jonathan Franzen realised there were errors in the UK edition of his new novel. I'd be furious too but 80 000 books being pulped makes me want to cry.

A deluded Baroness

I'm over my Pope moment and back to being an 'aggressive secularist'. Still overdosing on Lemsip and menthol pastilles. Still angry - and insulted - at Sayeeda Warsi talking crap on Newsnight, saying that people of faith are more likely to donate to charity and do voluntary work. (I undoubtedly succumbed to a massive relapse of ME as a result of doing voluntary work in London in late 80s, and have volunteered periodically during stages of my illness.) I can make dodgy, spurious claims too, Baroness, and I would like to suggest that people of faith are more likely to be racist, sexist and homophobic. Looking forward to Stephen Hawking on Channel 4 though I am so muffled with cold, it is hard to absorb much.

The future of the novel

Loved the discussion of the future of the novel on BBC Review Show last night. David Shields - his book was discussed - wants more reality in fiction, I am certainly intrigued by his book Reality Hunger: A Manifesto. The panel seemed to have mixed views about ebooks. I don't think I'll ever be a fan. I like my books made from trees. And the thought of libraries not surviving (ebooks) is just too bleak for words. Also, it has come to my attention that the asterisks have inexplicably disappeared in the Kindle edition of my book (#95 in Kindle literary fiction I just saw, next to Ovid, no doubt a brief status!), and the stranger/Helen sections are not very easy to read, publisher is looking into. If you do not have an ereader you can download Kindle for free for PC and sample the first four chapters of the novel.

* The ebook is being withdrawn until the glitches are fixed.

'A black man in Plymouth'

I've never really 'got' Twitter, am an infrequent user, but last night during the election debate, I saw how fast and furiously bullets of opinion/information can be shot out. It was dazzling, if a little bizarre. And exhausting, a cockpit of letters and symbols to be negotiated.

I was a bit underwhelmed by the debate, none of them are great orators, but Nick Clegg came out best. Cameron was ribbed mercilessly on Twitter for his black man in Plymouth line. I cringed when he said it, and couldn't imagine either of the others having done so. I find myself leaning more and more towards the Lib Dems, the fear, of course, that if you vote for them the Tories get in, and that is just too bleak to contemplate. But maybe we just need to take a leap of faith. And also, it was a Lib Dem MP - John Barrett - who read The State of Me (bought his own copy!) and blogged about it last May (3rd), showed he understood the issues surrounding ME. I sent copies in 2008 to both the Scottish Parliament and my own MP, c/o The House of Commons, but no reply.

I also 'panicked' when I saw our prospective leader(s) were standing up for the debate: How can people stand for an hour and half and speak intelligently? You have to sit down, I thought (my energy radar worrying vicariously). I also found the setting a bit too seventies' game show. We just needed Les Dawson and we would have had Blankety Blank. Alastair Stewart looked knackered and old (I don't watch ITV and probably haven't seen him since the 90s, he looked like he was still recovering from Diana's death). I turned off the televison debate after an hour and listened to the rest on radio.