Monday, 1 October 2012

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.


Sabine said...

I realise this may be too difficult to do, but don't waste your time and energy on this lot. You don't need them. The stakes in the battle against a wilfully misinformed media etc. are simply too high and there are far more worthy causes and actvities that need your sharp mind.
Yes, it is demoralising and degrading and disrespectful to be told all sorts of things - last week someone remarked that I must be faking it because I got a haircut...
But there are other ways and decent people to concentrate on. And you wrote a great book! Take care and courage, courage, courage.

nmj said...

Hey Sabine, When I see others enter these shark-infested threads, I think, No, what the hell are you doing, stay away, you're wasting energy! - exactly for the reasons you describe. But the combination of Maxy boy and his journo pal, and the cruel comments just really got to me this weekend; I thought who the fuck are these people, why do they think they can get away with this, over and over - I'm simply not taking it. And my only weapon is writing, I only have my words. Thanks for liking the book, I wish these detractors would read it. I very much hope you are enjoying you haircut. :)

Angela Kennedy said...

I actually believe, where it is possible (often it may not be) for some of us - maybe those like me, for example, not ill with ME, to enter the fray.

Although I've been put under attack a LOT, my combative style etc. together with some of the others there has changed the way the whole subject is being discussed. Usually it's the same old canards, borne of hatred and bigotry, passing without challenge (partly because they are said so often.)

This time round a good few of us have been really pinning down the commenters and showing their comments to be stupid, bigoted etc. including those of Pemberton and Thompson in their articles. Obviously that includes Nasim!

I've learned that sometimes fighting at the attacker's level is highly productive - actually in many areas of life - and only when we can of course.

There are various ways to advocate. Fighting in the mud sometimes IS necessary (metaphor there!), and there are various ways people can and need to advocate. The media are in the grip of the powerful in this issue, and finding a chink of armour is worth doing when we can. Despite the nastiness, I think we've done this with the Pemberton/Thompson tag team and their toadies.

nmj said...

Hey Angela, I agree it is important to challenge whatever way we can, and I do, but when it is affecting you adversely, to be pitchforked repeatedly - the image you used, which I really liked - it is simply not worth it. I need my energy for day to day living tasks, and creative writing/ideas, but these last few days all I've been able to think about is these dreadful articles and the accompanying commentary. Have been in tears several times. I certainly felt better after writing this post, and I hope a few non-ME people have realised the questionability of the Pemberton/Wessely narrative from some of the excellent comments made by yourself and others on the threads.

Damian is really just a silly sideshow, his article is ludicrous, really, but his arrogance and impudence riled me. I thought you dealt well with the nonsense on the threads, well, what I saw. I get so exhausted physically - and emotionally - and I stop reading. And some of the comments are just not worthy of replies. It becomes counter-productive. I tend to make the mistake of thinking I'm dealing with reasonable people, but the trolls come out and it's not an even playing field. They just don't get that their nastiness has consequences, but they don't see PWME as real people, we are just there to be demonised/ridiculed. Ha, I'd be fighting them all in the mud if I could!

Lesley said...

The newspapers have become forums not for idle chatter but idle nastiness. When I read these "toxic comments" — although I try to avoid the comments section on anything — I picture the writers sitting at home, huddled over their computers with nothing better to do than spill bile on subjects they nothing about, over people they don't know and have no interest in knowing. They're the real imposters, pretending to participate in society when in reality they are sabotaging any real efforts of exchange and understanding.

homegirl said...

Hi Nasim, I was nearly going crazy when i saw the stupid, trolling pieces in the press. i normally avoid because it's just so painful, but it's so hard sometimes. 30yrs, :( so sorry Nasim I hope it wont be another decade before we get some proper treatment.

They are, since the 'playing the victim' campaign of wessely et al last yr.... gaslighting a whole population of patients. JIC you're not aware, gaslighting is a technique used by abusers (of many different kinds, but most often in domestic violence situations) where the abuser sytematically manipulates their victim & those around them in order to remove their reality.
At the milder end of the spectrum, it's the wife who, when her husband begins to suspect that she is having an affair, & he confronts her with it, she says, do you know i've been concerned about you for a while, you are getting paranoid about things, you often are when youre stressed at work, perhaps you should see a therapist.
or eg it's the husband who batters & abuses his wife & has her under his thumb, but she begins to say no to him, & starts to fight back & he suspects she might seek help.... so he talks 'in confidence' to her friends saying how worried he is about her, that he's scared for their marriage, (weeping throughout) because she "is becoming paranoid, has been hitting him and he cant take it any more", she is, he says "hallucinating, imagining he is attacking her & lashing out & harming herself", but he loves her etc etc etc.
He even goes to the police for 'advice', portraying himself as the victim, telling them & her friends how she has been lying about him and about *them* even, telling him they've been abusive to her, even maybe faking some texts where she supposedly says this about them, making up all kinds of nonsense, including the fact that he has been trying to help her for yrs, painting himself as a hero, but she is getting worse & now he just has to share with those around her & get support for himself, and he's such a skilled manipulator, that he succeeds.

thus... when she finally dares to speak out & runs terrified to friends or the police, traumatised, & wounded, she is denied help or sympathy because they now believe the wounds are self inflicted & her story is completely discredited before she even starts to tell it.

It's the common MO of abusers the world over, who need to be in power over people. And sadly whatever the victim's response,ESPECIALLY if it's (naturally) emotional, they simply twist it until it appears to 'prove' the lies theyve told about their victims.

Humanistic psychotherapists are, in the main, healthy because theye had plenty of therapy themselves, and do a wonderful job for people who need them. However, psychiatrists are simply doctors who've chosen that specialty, - which also happens to be the one with the most power. It's a lottery as to whether the one you see is psychologically healthy or a megalomaniac sociopath.

I'm not accusing anyone but Wessely KNOWS that while he's saying 'saying ME is psychiatric doesnt mean it isnt real' out of one side of his mouth, an 'abberrant illness belief' is a delusion, and delusions by their very nature arent real, so he knows he's lying.
Obfuscation, misdirection & manipulation extraordiaire.

Wessly & co consumate gaslighters, & having grown up with one & then lived with another, i know there is only one thing you can do.... RUN from them as fast and as far as you can, because unless yr mind is made as devious and clever as theirs you've got no chance, and getting worked up just discredits yr argument. Like the rape victim who gets angry & upset on the stand in court. Not meaning *you* Nasim when i say 'you' - meaning 'one'.

I dont know what the answer is, but ime, gaslighters always end up showing their true colours eventually, but not to those who dont want to see.

homegirl said...

i came across this tonight....

a TED talk by Ben goldacre about publication bias in research etc.

God... the irony, pity he cant seem to apply all he says to ME research.

not sure why i'm telling you Nasim, but i just had to tell somebody who will see the grotesque irony of it & maybe if we have to talk to him again about ME we can quote him back to himself.

nmj said...

Hey Lesley, Indeed! There are some attempts at reasonable discussion, but they are smothered by the crassness of those who wish to be offensive. Interestingly, on these ME threads it is patients and advocates who are polite and informative, but the naysayers descend into insults and jibes, and you start to feel like a stuck record trying to educate them. You really cannot win.

Hey homegirl, I am not familiar with the term gaslighting, it sounds as though you have had some very difficult experiences. Have not watched the TED link, but I do often wonder why Ben Goldacre, who seems to be a decent guy, does not challenge the bad science of Wessely etc, but I guess he would be going against his peers/colleagues, that is why. It is peeving to see him and a glittering queue of medics RT whatever Max Pemberton trots out. And I am not sure how much say Ben has on the Bad Science forum, but I have never seen such hostility towards PWME. And these people are supposedly medics/scientists! So brave behind their masks of anonymity! I visited last year but I'd never go near that lions' den again.