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.