Sunday, 21 June 2015

The longest day

Today is the longest day and also Father's Day - the first one without my beloved stepdad. I can hear his lovely voice. I think of the hours I spent with him showing him pictures of Ilulissat on the iPad. He couldn't grasp how they got there, he thought I had done it, I'd explain, it's the internet and he'd say I didn't know the internet was interested in Greenland.

Since he left, I wear his Harris tweed jacket when I'm cold or missing him, it feels like he's hugging me. Today, I miss him and feel cold, it's freezing, June in Scotland usually is. So the Harris tweed is doubly needed, and I feel like a student in eighties again, when we'd wear  mansized - usually, our boyfriends' - clothes.

An orange poppy bloomed this morning, of course I see it is a sign that he's here.

And below some gorgeous wee pink wildflowers that I rescued before my mother, who was visiting, mowed away.




Saturday, 20 June 2015

The daft neurologist (cont'd) ...

My book being published has been one of the happiest times in my life - though the process was certainly not without its trials  - and on the launch night I was in heaven. The room was packed, copies of my novel piled up beside me, my nephews - then just three and six - were sitting in the audience and walked up to the front with roses during the reading. That was the only actual launch event I did, I can't run around the country/world doing writerly things and that breaks my heart.

Still.
 *

You would think/hope that thirty years after my diagnosis of ME - abnormal muscle biopsy, abnormal EMG, abnormal blood tests etc etc etc - all would be fine and dandy, we would be waiting patiently and quietly for the elusive biomarker, as dedicated researchers worked hard to help us find a cause and cure. No chance. 

The (ever more desperate) psychiatric lobby is always hiding behind you, waiting to jump out and squeeze the very soul out of you. This past fortnight we have been treated to a work called 'It's all in your Head: True Stories of Imaginary Illness' by a daft neurologist called Suzanne O'Sullivan, who apparently googled ME and then wrote her ridiculous chapter on ME/CFS and false illness beliefs. Her book sits on the table in the same Waterstones I had my launch. It is very tempting to place copies of The State of Me, offer a 2-for-1, prevent readers being  duped. And Suzanne is of course, doing the whole literary trail, book festivals galore. She seems wholly unperturbed about spreading medical misinformation.

This Bookseller article referred to her book as 'groundbreaking and controversial'.

I can confirm however that it is certainly not groundbreaking, more a dreary recycling of the biopsychosocial narrative because as I already reviewed here on Goodreads, it includes a case study 'Rachel', a young woman with 'ME/CFS' who 'fails' to manage her fatigue and doesn't get better. Naughty Rachel. She refuses psychiatric treatment (Good for you, Rachel). The chapter is manipulative and incoherent. Vacuous too. 

This is 2015, let's just remind ourselves. Yet Suzanne has not managed to keep up with the science in spite  of having it all at her fingertips. If Suzanne were not so dangerous, she would be a hoot, but this is, frankly, indefensible:
 'I will not be obtuse. I believe that psychological factors and behavioural issues, if they are not the entire cause, at the very least contribute in a significant way to prolonging the disability that occurs in chronic fatigue syndrome. Do I know that for sure? No, nobody does...'
'...So is it a somatisation disorder? ME/CFS is an illness in its own right that has not traditionally been referred to as a somatisation disorder, but that is not to say that it does not share common ground with psychosomatic disorders. It manifests as multiple medically unexplained symptoms. Sufferers of both disorders carry similar behaviours and illness beliefs and neither leads to evidence of organic disease however long you wait.'
 'There is certainly evidence that ME/CFS can be precipitated by exposure to an infecting agent (no shit, Sherlock!) but once the infection has cleared, there is no way of explaining how the syndrome of chronic fatigue develops, except perhaps to consider the psychological vulnerability of those affected and their behavioural response to the illness.'

The icing on the cake (this part is also in my Goodreads review but is worth repeating for those of us who actually have an understanding of the stinking politics around this illness):

'In my early years training in neurology I encountered many patients with CFS, but more recently neurologists have distanced themselves from this disorder and patients are more likely to seek help from immunologists or endocrinologists. I do not currently see patients for the purpose of diagnosing or treating ME/CFS, but many of my patients with dissociative seizures have a history of ME/CFS, and there is something very interesting in that fact alone.'

There is something very interesting alone in the fact that Suzanne does not seem to have actually met (m)any patients with classic Ramsay-ME  - in 1990s when she was training, the Wessely/CFS school was just taking root. ME was being 'disappeared'. The patients she sees with dissociative seizures most likely don't have classic ME in first place. (Who knows what they have, given that ME/CFS has become a dustbin diagnosis, thanks to Oxford criteria, so loved by Wessely school.)

But O'Sullivan seems not to be unaware of the problems with criteria. (She really ought to watch Leonard Jason, professor of psychology, his 2014 presentation on case definitions and criterion variance is excellent.)

And we don't ever find out what happens to Rachel, she is not followed up. O'Sullivan also fails spectacularly to describe the experience of probably all of us with ME, of pushing ourselves to recover only to relapse catastrophically.

So, a doctor who is not an expert in ME feels entitled to devote a whole chapter of her book to ME, in which she shamefully undermines all the years of hard work those of us with the illness have done to educate. She is taking the piss. She will not rock the science, of course, it is progressing nicely, but she could well do damage to someone with ME who has faced disbelief from friends or family.

What I have realised, though, is there is little point in railing against the oafs, it only makes you more ill. And to my surprise, even book review threads contain oafs, I did not know this. I was naive and thought that book threads might be a useful way of educating other readers about ME. People who read are nice, friendly, reasonable. Not so.

Oafs abound. And they steal your energy, they are noise in your head. They are self-important, bloated and entirely lacking in self-awareness. They know best, you see. Your thirty-three years of lived illness does not equal their opinion. And they also have a skill of blocking out hard, objective science. They have convinced themselves that 250 000 people in the UK are somatising across the decades. As someone on the book thread said, their blocking out of evidence is a psychologial phenomenon in itself.

The Countess of Mar has written a stonkingly good letter to O'Sullivan and copied it to her publisher Chatto and Windus (and also to Simon W's seemingly joined-at-the-hip friend David Aaronovitch). It is just so dispiriting that Suzanne's publisher saw no harm in her framing of ME as psychosomatic. I guess they just see £ signs (ooh, controversial, edgy science).

The truth is, of course, that O'Sullivan has indulged herself at our expense, and her publishers have indulged her too, by including a neuroimmune illness in a book of 'all in your head' disorders.  It goes without saying that no one in the ME patient/research community had heard of her until a few weeks ago, and yet readers - frighteningly gullible - are willing to bestow authority on her.

Dearie me.

Happily, the Annals of Internal Medicine have just put this very fine NIH  report online: National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

I have decided not to blog about ME any more, not unless there is good news to report,  advances in research, positive events. I have educated others as much as I can,  but it is simply too draining, physically and emotionally to challenge nonsense.

Science is winning, it always has been.

But in the meantime, I have banished the oafs.


Thursday, 11 June 2015

Hanging bath mats on the gate

It is eighteen weeks since my wonderful stepdad passed away - I can still not write the word 'died' beside him, in the same sentence. The raw shock and awfulness has faded, but I miss him terribly and still find myself in tears unexpectedly. I found some writing from three years ago, when I was visiting him and my mother:

A seagull shat on me today, I thought, at first, it was a giant raindrop on the back of my hand. I looked up, the sky was empty and blue. My stepdad said he'd seen the shadows of *two* seagulls. Hard to know if he had as he is  retreating more and more into his own world (he puts the olive oil in the fridge, I take it back out, he puts it back in, I take it back out). Then he hung the bath mats on the garden gate to dry, they had been on the clothes horse, but for his own  - perfectly valid, I'm sure - reasons, he wanted the clothes horse back in the garage, and the mats on the garden gate. 

I remember him hanging the bath mats on the garden gate: a chemical engineer with a head full of equations and science, hanging the bath mats on the back gate.

*

So, to mark eighteen weeks without this lovely man,  here he is with his identical twin in their beloved Greenland, probably 1933.


Friday, 5 June 2015

A Series of Unexpected Events - The Well Made Project

As part of London  Creativity and Wellbeing week 4-12 June, The Well Made Project is hosting an online exhibition called A Series of Unexpected Events. 





'Over the course of a week, this online exhibition on art and health will publish an artwork by a different artist each day. These distinct pieces, each conveying the impact of a life event, will gradually build up a wider narrative around wellbeing.'


Extracts of my novel will be used at some point, I don't know how/when/where, which makes it even more interesting!

Even if you are not on Tumblr you can subscribe to the event here.

Enjoy.

Tuesday, 2 June 2015

Do No Harm by Henry Marsh; & another doctor turned writer (Suzanne O'Sullivan, who believes ME is psychosomatic) *updated

I'd read a couple of chapters of Do No Harm before I realised that Henry Marsh is the subject of Geoffrey Smith's 2007 award-winning documentary The English Surgeon, which I saw four or five years ago. The film first came to my attention because at that time a production company was planning to use my novel as the scaffolding of a documentary about ME and Geoffrey Smith was the director. (It fell through, as these things do, and the film seems now to have halted - and I am no longer in the trailer.) I warmed very much to Henry Marsh in the documentary and I love him again in Do No Harm: his humility and self-deprecation shine through his brilliance as a surgeon, he is honest about his faults - he can be short-tempered and vain. He mocks himself for getting annoyed at having to queue at a supermarket check-out when he is an important neurosurgeon. His gorgeous, pared down prose reflects a surgical precision, he says what has to be said, no more, no less. The details of the neurosurgery he practices can be hard to read, I grimaced more than once, and while the technicalities are fascinating,  it is Marsh's humanity and wry humour that makes the book so readable. A doctor who admits wholeheartedly to the luck that is involved in a complicated operation succeeding or failing, a doctor who admits to his own mistakes and can't bear to think of the patients who have suffered at his hands. My favourite line is when he describes how important it is for doctors themselves to experience the anguish of being an angry or anxious relative (or patient) - his baby son had a, thankfully, treatable brain tumour: Doctors, I tell my trainees with a laugh, can't suffer enough.

I often think that doctors who have experienced illness themselves  make better doctors.

*
Not all doctors can write although the publishing world seems awestruck when they do. A new book came to my attention at the weekend by Suzanne O'Sullivan, she has been at Hay promoting It's All in your Head: 'True stories of Imaginary Illness', and the papers have had interviews and extracts. The Sunday Times reported that she controversially thinks ME is psychosomatic. So there you go, a doctor I've never heard of, her opinion slips in like a wee sharp knife - I'm hardly going to warm to her. Still, I can admire good writing even if I dislike the writer's opinions, but the extract in the Guardian is plodding and dull, this happened and then that happened, clichés sprinkled here and there, my interest flagged. And the subject seems derivative, a mix of Oliver Sacks (whose writing I loved) and Elaine Showalter (the horror, the horror!).

Just imagine for a moment you had ME and you were referred to this neurologist, what would she say to you, that it is all in your mind? My consultant neurologist ordered a muscle biopsy and EMG in order to confirm suspected abnormalities, but this of course was pre-'CFS' days (nowadays, you can apparently google 'chronic fatigue', pop down to your local fatigue clinic to get a diagnosis of ME, then get better in a few hours after the Lightning Process, this is one journalist's experience - and he actually confirms O'Sullivan's suggestion that some patients are ill because they google symptoms, he refers to himself as a prolific 'cyberchondriac'. This, of course, is not the experience of patients who have actual ME).

These doctors, such as O'Sullivan, who continue to deny that ME is a physical illness are making a choice not to listen, to ignore the research and abundance of literature, it is very worrying. Their position is  untenable, but still they hang on.  Who benefits? - not patients with ME, that's for sure. The ME Association has just published a report on the harms of CBT and GET as primary treatments for ME, I wonder if it will make a blind bit of difference.

First, do no harm...

Precisely.
_________________________________________________________________________
*Update 

Suzanne O'Sullivan's book does indeed include a chapter on 'ME/CFS' - 'Rachel'.  It is,  unsurprisingly, manipulative and incoherent. In Suzanne's world, you google ME and decide it matches your symptoms and that is what you have got.  (She also patronisingly said on Radio 4: 'I don't think the internet has been so much of a problem for doctors as such, I think it is a problem for patients and people.')

And this may, in fact, be the most revealing passage in the chapter:
'In my early years training in neurology I encountered many patients with CFS, but more recently neurologists have distanced themselves from this disorder and patients are more likely to seek help from immunologists or endocrinologists. I do not currently see patients for the purpose of diagnosing or treating ME/CFS, but many of my patients with dissociative seizures have a history of ME/CFS, and there is something very interesting in that fact alone.'

There is something very interesting in the fact that Suzanne does not seem to have actually met (m)any patients with classic Ramsay-ME (in 1990s when she was training the Wessely/CFS school was just taking root). Rachel, the girl in her book with ME/CFS is, to my mind, an artificial construct, a composite character with the 'behaviours' of ME patients - internet diagnosis, increasingly helpless, 'over-helpful' parents - that the Wessely school adores. Rachel rejects the psychiatric treatment offered her. We never find out what happens to her, though Suzanne says: 'The impact of our emotional well-being on our health is not a trifling problem. I only wish I could convince Rachel of this'.

Her apparent lack of contact with patients who actually have ME - coupled with not following the science - would perhaps explain why she felt that including ME in a book of imaginary illnesses was acceptable. But hallelujah! Suzanne is still at pains to tell us that she does believe we are ill, honestly, she believes us, but we just have to be good and understand that it is all in our heads.

I have reviewed the chapter on Goodreads (and Amazon).

The ME Association has complained to the Times about David Aaronovitch's review of the book - and his re-assertions - yawn yawn - that ME is probably psychosomatic. Invest in ME has also complained to The Times. How many hundreds of hours have we had to waste challenging these oafs?

How many hours?

Tuesday, 26 May 2015

Jean Luc Godard's 'Film Socialisme'

I first tried to watch Jean Luc Godard's 'Film Socialisme' the Friday after the general election but I was just too upset to absorb the very disjointed narrative. It hurt my head. I tried again - twice - and finally last Saturday night was able to watch without being annoyed by the complete lack of plot. In the end, I came to love the images, they forgave the tedium. The subtitles, for some reason, kept disappearing and my French is far from fluent so I have to concentrate enormously without subtitles, which is exhausting and takes away any enjoyment. But then I realised it didn't matter, none of the film makes sense in any conventional way, so I just watched the images and that was enough. The cruise ship scenes I loved.

Tuesday, 12 May 2015

12 May: ME Awareness Day; and people who think they are made of glass (updated 17 May)

Today, 12 May, is ME Awareness Day. I have nothing new to say, nothing that I haven't said a million times before. My friend Catherine has written a brilliant post for mumsnet blog about life with ME, I urge you to read this if you want to understand more.

I also want to thank the ME Association for all they do for us.

 *
Yesterday, I came across an article about people who think they are made of glass, it fascinated me, this exceedingly rare mental illness. I imagined 'glass delusion' sufferers - almost mythical, fairytale creatures - perhaps being prescribed CBT (cognitive behavioural therapy) and graded exercise (GET). I thought of them protesting: But we can't do graded exercise, our legs will break! I thought of them being told, your legs won't break, there's nothing wrong with you, it's in your head that you're made of glass. In the case of believing you are made of glass, this would indeed be true, that it's in your head. In the case of the neuroimmune illness ME, our legs do indeed break when we are *forced* to do exercise. Our muscles cannot cope and we might as well be made of glass, so fragile do we feel. But the PACE brigade continue to support the insupportable theory that ME is perpetuated by false illness beliefs. GET and CBT as a primary treatment for sufferers of ME is a grotesque fairytale, the PACE trial, an evil stepmother.

***Update 17 May: Have just listened to 'The Glass Delusion' programme on Radio 4, v interesting, though tainted somewhat by the appearance approx 20 mins in of  Prof Edward Shorter, a medical historian in Toronto, who has been in the past extremely hostile towards ME sufferers. He wrote this article in February in response to the USA's Institute of Medicine proposing new criteria for and naming - Systemic Exercise Intolerance Disease (SEID) - of  CFS. He seems to have edited the original article to make it slightly less unpalatable.  I see Shorter is actually mentioned in the original BBC article I posted above, but I didn't notice, is very far down, near end. This is what comes of not reading the whole article...seems anyway that my blog post was prescient. Also, good to see Dr Enlander challenge Shorter when his nasty article came out. 

Still, 'The Glass Delusion' is very worth listening to.  I liked the novelist's comment that Cinderella's slippers would be much less fascinating were they made of velvet.