A couple of good things, a couple of bad things

Yesterday, I returned the dreadful Hystories by Elaine Showalter to the library, what a relief to have that book out of my possession, her cavalier dismissal of neuroimmune illness is simply bizarre. I can't even be bothered to talk about it any more, I tweeted a few times about it last week. I also discovered that local libraries stock food recycling/compost bags, so was very happy as I have just used up the ones the council provided a few months ago up. I was hoping to take out Claire Messud's The Woman Upstairs, but I could not remember her name, I was furious with my stupid head - and it does feel like a kind of stupidity, this cognitive bleakness caused by ME - not the normal 'can't remember what I came in for', more like a database being erased from your head - spaces where facts should be: I was trying to remember her husband's name too, as a way back to her, I knew he was a critic - James Wood - and by the time I remembered, the library was closing... And not only can I now tell the difference between a herring gull and a lesser black-backed, I've learned there is such a thing as a red admiral butterfly *and* a small tortoiseshell. I thought tortoiseshells were only a kind of cat. You live and learn.

Sticks and stones

It is, naturally, best to ignore this kind of thing: manipulative half-truths - the second instalment - from media psychiatrist Max Pemberton (Max claims to have followed the medical literature on ME for years -  maybe he means those papers authored by consultant psychiatrist Simon Wessely, for he certainly hasn't learned much); and this a - deliberately inflammatory - piece from Max's friend, a Telegraph journalist I'd never heard of. Wessely's influence is, of course, waning drastically, so Max has to come up with spasms of sensationalism, lest we all forget that people with ME are militants, armed and dangerous, though he stresses - Max really cares about ME sufferers, you know - it's 'a very small minority'. Yet, he still feels the need to write a whole column about it, again, and is still, perplexingly, banging on about ME and its 'psychological component'.

First instalment is here, where Max informed us with not a trace of irony that 'it wasn't until psychiatrists such as Professer Wessely started treating the condition psychologically that real progess was made'. And they wonder why people with ME get upset! (You would think as psychiatrists they would understand that denying a patent's reality for years and years and years is not often met with joy and love.) I would say that the only 'psychological component' of ME is the constant misrepresentation and undermining of patients by this core of psychiatrists.

Let's revisit Professor Malcolm Hooper's words from last year, when 'The Threats' saga was in full swing: 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. 

This weekend, I realised that I've been ill for thirty years, almost exactly to the day. Max apparently hasn't heard of Coxsackie B4, or read Dr Melvin Ramsay's book, but there was an outbreak in the west of Scotland in eighties. I must've picked up the virus before going off to France for my university year abroad, I'd worked as a waitress that summer, maybe that's where I got it, I'll never know. I was  forced back home from France, six weeks later. I remember like yesterday the catastrophe of having an illness I'd never heard of punch into my life, and my family's life. I remember the trailing back and forth to the Southern General neurology clinic, where  ME was eventually diagnosed, feeling as if I were dying. I remember the peeling orange chairs. I remember the bag of plasma on my lap, as I waited in a wheelchair to be taken back to the ward. I had a plasma exchange and immunosuppression as one of my first treatments, albeit experimental. The woman in the bed next to me had myasthenia gravis.

It is therefore doubly upsetting to see the toxic comments that are still out there - resplendent like  bunting - for people with my illness.  You'll find obnoxious, uninformed twonks on virtually any online discussion thread, it goes with the territory. But I find the ME ones to be dazzlingly spiteful.

In the Telegraph thread, I saw ME referred to as 'lazy cow syndrome' (LCS). Sufferers referred to as 'fruit loops' and 'rent-a-mob'. I was told I had 'a supposed disease', and someone else said I wasn't 'a viable source' of information on ME (whereas Jeremy Kyle fan Max Pemberton is). It is so very dispiriting - once again - to see how the distorted narrative of this illness has been so easily swallowed by (apparently) intelligent people, people who have no clue about the history of the prejudice we have faced. People with no curiosity about the truth, just a propensity for being glibly cruel.

I was particularly jabbed by  a tweet from some Canadian editor: They're just as eager to have a neurological illness as multiple sclerosis sufferers are not to have one!

Ha ha, that's so fucking funny! I bet all his followers fell of their chairs laughing. But he - like the others - can say this with impunity, and he may even be applauded. You can mock people with my illness and it's fine and dandy, we are a fair target, you see.

He obviously hasn't heard of the Canadian Clinical Guidelines.

Or the International Consensus Criteria 2011 ('Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions').

But then neither has Max.

It is, of course, the hijacking and redefining of a neuroimmune illness by UK psychiatrists since early 90s that has given anyone and everyone a free pass to this kind of casual abuse of people with ME. It is nothing less than verbal thuggery. And it is unacceptable. No other patient group in the world would be expected to take this. But they are clever, the biopsychosocial brigade (or medical mafia as my mother calls them). They have distorted the narrative so much that you can't now defend yourself without being labelled an 'armed militant'  or 'paranoid obsessive' (the latter from another charming Canadian tweeter). 

These people who indulge in detrimental, offensive commentary online aren't important and would be full of shame - I hope - if they actually understood what they were saying, but it is soul-destroying when you read them. Soul-destroying that such wilful ignorance remains. The childhood refrain, Sticks and stones will break my bones but names will never hurt me, has been going through my head,  and I am trying today to live by it - perhaps a child-like impulse.

MEActionUK penned a fine response to the Telegraph but it will doubtlessly not be published, because it contains truth, and the media is not too fond of accuracy when it comes to this illness. Health editors, indeed a fair few UK editors,  have been complicit in sustaining  the half-truths of this ME medical mafia.

I console myself a little that the MRC is finally  - not before time - funding much needed biomedical research, but this weekend it felt like we were living in a cave. And I am just so glad - though sad that I've been ill for so long - that I ended up in the safe hands of a neurologist. These ME psychs truly frighten me.

*I forgot to include this: Max's journalist friend refers to Showalter's 'brave and brilliant' book 'Hystories' (really, you couldn't make it up, brave and brilliant). It's unlikely he's actually read it, it came out in 1997 and is old news. It seemed to me more likely he'd been advised: Mention Elaine Showalter that'll really get them going, show them to be the rabid militants they are! My main thought was, Has Elaine not been abucted by aliens yet? One can only wish.

** One last thing: if I were mentally ill I'd happily be referred to a psychiatrist, but I'm not, so I prefer to stick with neurologists, virologists, immunologists, etc  the people who may  actually be able to help me.

*** An interesting overview of the ME situation from Valerie Eliot Smith, with links to current research. Well-written, calm post, though I think Valerie is a little too gentle on the psychs.

Storytelling (6)

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 (2)

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?

Books I will never read, and one you should read

I will never read Going Rogue, obviously, but I enjoyed this review.

I'm always curious about lists of writers' favourite books but was peeved to see a recommendation for a recent book ('sympathetic, informed, canny') by Elaine Showalter. The book may well deserve such praise from Joyce Carol Oates (they are friends, I believe), but I have not read - and will never read - anything by Showalter for I cannot see her name without feeling huge anger and disrespect. (For those who don't know, in 1997, she wrote Hystories: Hysterical Epidemics and Modern Media in which she irresponsibly and shamefully argued that ME and Gulf War Syndrome - like claims of alien abduction - were manifestations of hysteria, 'psychogenic syndromes of the 1990s'. She was most certainly not sympathetic, informed or canny back then. I doubt she would get away with such assertions now, and one can only wish the aliens had abducted her before she got away with it in 1997.)

I just finished Mark Steel's What's Going On?, I've been dipping into it for a couple of months, it made me laugh out loud, though melancholy at times.

Drama

I've been enjoying the law firm drama Damages on BBC 1, but have no idea what is going on, it's ridiculously convoluted.

Simon Wessely is a very dangerous man. I see he's been up to his old tricks again, in the Independent. Interesting that ME doesn't exist in France - I was living in fucking France when I got ill. I'm not surprised he gets hate mail. Personally, I wouldn't waste the stamp.

* Just to add: Of course I do not think hate mail is ever a good idea, but I can understand why people are driven to it, faced with attitudes such as Wessely's. I couldn't sleep last night and was thinking of Elaine Showalter, American academic and charming author of Hystories (1997) - I believe she also got hate mail and death threats for her views on ME and Gulf War Syndrome. I just read she needed an armed guard at a Barnes & Noble reading.

ME does not just wreck one person's life. It irrevocably changes the lives of their families and partners and children. Do the likes of SW and ES have the remotest idea of the damage their ill conceived ideas cause? I don't know how they sleep at night.