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). 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, clich├ęs 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?

10 comments:

Sabine said...

I agree with you completely on both counts. Henry Marsh's book and the documentary are exceptional. And that book on psychosmatic illness, or rather the Guardian piece, made me so mad! I am sure there are genuine cases of psychosomatic illness/disease patterns but in many instances - and the author describes some, to my mind - it's a cop out. A pity diagnosis, much to the relief of the experts.

nmj said...

Hey, Sabine, Thanks for commenting. I'm sure there are psychosomatic illnesses, I have no problem believing that, and I can believe the patients she mentions in the extract did have psychosomatic illnesses. But when I know this doctor believes my own neuroimmune illness to be psychogenic it is hard to be excited by her work. But mainly, the writing does not appeal, it is dry and unengaging.

Digitalesse said...

Good grief! I thought we were over all that 'psychosomatic' rubbish! Apparently not, according to some. As for the Lightning Process, it probably does work for psychosomatic conditions which are misdiagnosed as ME. These tales of people being cured within a few hours and then going on long bike rides, hillwalking and so on… if they were as incapacitated as they describe, spending years in bed and being pushed around in wheelchairs, then where did this instantaneous physical strength and stamina magically appear from. I have very extreme doubts about the veracity of their stories. Obviously 'cyberchondria' has no long term effects on muscle strength!

Digitalesse said...

I just want to add… I actually know someone who did the Lightning Process and relapsed very badly several weeks later. A few years on, she's still not better. She increased her activity levels in the short term because that's what people are encouraged to do—to pretend away their symptoms and ignore the signs of fatigue and so on. She did as she was told, kept pushing through her increasing symptoms and guess what? She had a major relapse. Of course, she was told she hadn't been doing it "properly". These are the stories we DON'T hear. Airbrushed out of the narrative because it doesn't coincide with the PR about miracle cures and tales of instant mountaineering and marathon running.

nmj said...

No, Dig, apparently not, the psychosomatic rubbish is alive and kicking. I see that Suzanne O'Sullivan, above-mentioned neurologist, has indeed included a whole chapter on ME/CFS in her new book. It is a hoot, so predictable and weary. She is careful though to acknowledge how disabling ME is, and makes clear there is huge controversy, but then goes on to say: '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'. Then she says: 'Do I know that for sure? No, nobody does; but I am influenced by the lack of evidence for an organic disease'.

Worryingly, she refers to, one assumes, Simon Wessely - without actually naming him - as 'one of the foremost experts in CFS in UK'... who has 'devised the most effective treatment programme for sufferers and has been vilified for encouraging neglect of patients'.

She then informs us that CBT and GET are the best treatments (!) we have for at least some PwME, & glosses over entirely the harm done by psychiatric lobby. She has of course been highly selective in her research. She also seems to think no one is offered immunotherapy for ME, anywhere. Where to begin, Suzanne, where to begin?

It just peeves me that this is prob going to to be one of those popular sciencey books and people will be wholly misinformed about our illness, all over again.

I have more to say on Lightning Process, will do so in another post, must have a break now.

nmj said...

Some more links to Suzanne O'Sullivan's book, sadly not 'groundbreaking', as described by her publisher, but rather incoherent, disingenuous and simply a recycling of psychs' narrative with bells on:

https://twitter.com/velogubbed/status/606851516260065280

I suspect she has included ME because she did not have enough actual psychosomatic illnesses to fill the pot, she had to pad things out. Her ME/CFS chapter is manipulative, disingenuous - and illuminating only in what it omits. Disgraceful that a doctor would produce this guff in 2015.

nmj said...

And this:

https://twitter.com/velogubbed/status/606857892801744896

And this:

https://twitter.com/velogubbed/status/606855421085786113

A review of the book here in Independent, I left comment, but I can't waste any more energy on this person: http://www.independent.co.uk/arts-entertainment/books/reviews/its-all-in-your-head-true-stories-of-imaginary-illnesses-by-suzanne-osullivan--book-review-frustratingly-fails-to-answer-the-questions-it-raises-10300946.html

It just never stops.

Digitalesse said...

I sincerely hope that this book doesn't become one of those bestselling 'science' books because those opinions can infiltrate the general view of ME outside of the medical profession, and it's not too great for us when we're dealing with health professionals at the best of times. Ms SOS is actually rather ignorant of the on-going research at the clinic where the unnamed expert worked—apparently he swings by that clinic about once a month, I don't think he even treats patients there these days. I've just donated my DNA for research there, BTW. They've found abnormalities in cortisol/adrenaline in PWME as well as finding different areas of the brain being both overactive and underactive during cognitive tasks which are distinctly different from healthy controls, for example. We heard a lot about the mouse virus a few years ago which turned out to be a diagnostic red herring, but it was simple enough for the press and some patients to latch on to — a simple cause and effect model with a test that could prove it — but in reality the research isn't coming up with easy-to-understand readymade answers. It's a complicated condition and so far there are no definitive answers that say "this is the cause and this is the proof", yet there is evidence that things are going awry.

As for CBT, I also know that the unnamed expert's (former?) clinic has done work with MS patients and other long term disabling conditions, not as a cure but as one way to manage (not treat) living with a chronic illness. It's not touted as a cure for ME either, it just helps people to pace a bit better. It's worrying how many doctors do actually hold such erroneous opinions about psychology and exercise as being the answer. BTW, it's actually official that GET failed to help my condition despite working with an experienced and knowledgeable physiotherapist, That's in my notes now, and it's the opinion of "that" clinic, so they are well aware it is not a universal cure-all.

nmj said...

She seems to contradict herself in acknowledging there *are* abnormalities, but because no unique biomarker yet, she has shut her mind down to the very real potential of it being found...She seems almost not to want science to progress, she is supremely happy in assuming ME is psychological while at great pains to show us that she respects us. So patronising and insulting to PwME and all the wonderful biomed researchers currently working to help us. Her chapter is manipulative, illuminating only in what it omits....and she talks only about fatigue, seems (wilfully?) ignorant of the different criteria...what angers me is that the book has been promoted as groundbreaking, when the ME chapter is just a tired recycling of the psychs' narrative, nothing new... and already journalists taking it in like soup...

https://twitter.com/velogubbed/status/607143208070594560

And the journalist in my blog post who was cured in a few hours with Lightning Process has also recently written in Spectator about his severe anxiety and mentions LP as a method of coping. I also discovered that he convinced his GP at one point to diagnose him as bipolar, only to learn that he wasn't actually bipolar at all. Not at all wishing to dismiss his anxiety issues, but ludicrous that he would write an artice on ME when he clearly never had it. But the diluting of criteria and dustbin diagnosis 'ME/CFS' means everyone can appropriate ME for their own purposes.

Crafty Green Poet said...

I was also really impressed by Do No Harm, excellent book and as you say very impressive to see a doctor being so honest....