Saturday, 20 June 2015

The daft neurologist (cont'd) ...

My book being published in 2008 has been one of the happiest times in my life - though the process was certainly not without its trials (and I developed very frightening uveitis afterwards - the whole fiasco took its toll) - 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 possibly run around the country/world doing writerly things and that breaks my heart.


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.


Cusp said...

Good for you.... a waste of space and energy as you say x

nmj said...

Ain't that the truth. There was a very obnoxious retired science professor on the book thread, he took pot shots at both myself and the Countess of Mar, privileging his own opinion over our knowledge and experience of illness, I felt quite traumatised, but he has now deleted his thread.

These people have no idea of the damage they cause, no idea of the years of abuse pwME have faced. As the NIH report says:

'Both society and the medical profession have contributed to the disrespect and rejection experienced by patients with ME/CFS. They are often treated with skepticism, uncertainty, and apprehension and labeled as deconditioned or having a primary psychological disorder.'

And as we have all known since Day 1: 'Strong evidence indicates that immunologic and inflammatory pathologic conditions, neurotransmitter signaling disruption, microbiome perturbation, and metabolic or mitochondrial abnormalities are potentially important for the definition and treatment of ME/CFS.'

Hope you are okay, Cusp. x