The pantomime of PACE

More nonsense from the PACE trial/biopsychosocial gang in mid-January. The BMJ and the Lancet and the Telegraph and the Times and the Guardian and the Independent and the BBC and god knows where else reported with varying degrees of ignorance and insult that people with ME were exercise phobic, as insulting a red rag as you can get. And they wonder why people with my illness feel hostile towards such  'research'. It's a fucking pantomime. The BMJ did not at first post my comment but a week later, it has appeared. You can see the other rapid responses too, though the fact it took them a week to put mine up is not exactly rapid (and my comment should read biomedical research consistently *ignored*, ignored is missing). Lots of great comments from doctors and patients and charities. We all keep saying there is a wind of change, that this idiocy has been stamped out, finally, and then they pull another mendacious rabbit out of the bag. Professor Trudie Chalder, one of the lead actors in the pantomime - but not the only one in a tightly-knit clique of offenders - has been gloriously satirised here, described as having an advanced degree in rocket science from the church of behave therapy. That sounds about right, considering the nonsense she comes out with. I was also amused to discover that chalder is an old Scots word for a measurement of grain. The possibilities are endless.

Art & catastrophe, & BBC Alba documentary, repeated on 6 and 13 January

The BBC Alba 'Toxic Tiredness' documentary from January 2012 is being repeated tonight at 9pm*. The Gaelic parts are, of course, subtitled. I previously blogged about both episodes here (part one) and here (part two). I appear in episode one right at the beginning looking like a bag lady, with my usually rather funky prescription sunglasses - they filmed us at weird angles outside for a few shots, the effect is alienating and disorienting, maybe that was the intention. And then at approx - 2.30, 7:30, 13, 18:30, 24, 29, 40:50 and 48 mins (I talk about the novel here and read an extract).

And Professor Peter Behan, the consultant neurologist who diagnosed me in 1983/84, appears in episode two, 35 mins in. He is magnificent. I especially liked:

  '... there is an essential biochemical component to the illness which needs to be elucidated, and research should be along the grounds into these illnesses rather than dealing with psychological talk the talk nonsense'

Dr Charles Shepherd  of the ME Association - also diagnosed by Peter Behan -  makes a great contribution too (though I don't necessarily agree with *everything* he says). The early-mid eighties was still a hard time to get a diagnosis, it took me almost 18 months, but  the psychobabble that we know today was yet to reach its dizzying heights of obfuscation -  this conflation of  serious neuroimmune illness with 'chronic fatigue' has, as we know only too well, done untold damage. We can only hope that science is now progressing, albeit slowly, unfettered by the hijackers. Here's to some decent biomedical research in 2014.

* Part 1 repeated Tuesday 7th at 10pm and soon on iPlayer

*

And I came across these wonderful photos by Penny Clare the other day on the Centre for Medical Humanities blog. She took them while severely affected and bedridden. I particularly like A fingernail celebrates New Year (I don't want to breach copyright so am not posting any photos here).

 More of Penny's photos can be seen on the excellent Phoenix Rising site.


For me, these photos highlight the link between creativity and illness, we are 'forced' by the illness into places we never knew we would go. We are still ourselves but catastrophe has given us a different way of expression. I often think of my novel/fiction as  my response to catastrophe. Writing often is.

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.

Norwegian Breakthrough in ME research

Holy moly, this is the breaking news from the world of ME research!

I refuse to get all hyped up though, we have been here before, and I am in no hurry to swallow Rituximab until absolutely proven beyond doubt, but it is still a joy to see biomedical research being done. However this pans out, it will surely lead to better understanding of the mechanism of ME. And they got their trial participants from patients who had been diagnosed by neurologists, there's a novel idea - get patients with neuroimmune illness and  not patients with nebulous fatigue  à la PACE trial.

Wonder how long it will be until the Wessely-led Science Media Centre will try and defy the story Gaddafi-style, frothing and spitting?

Update* Short video of Dr David Bell on this news. 

Update** In light of this breakthrough, the Norwegian Health Directorate apologises for treatment of PWME.

Update*** Invest in ME's statement. 

When are we going to get coverage of this research in UK media, never mind an apology from the bozos who run things here???

Update**** BBC coverage, finally. I understand the MEA persuaded them. Still, it beggars belief that the journalist felt it necessary to include 'death threats' in top five facts about ME. When is this appalling media bias going to stop? And no mention of apology by Norwegian Health Department, surely that is big news?

Update***** And The Daily Wail has also now covered, and informs us that CFS 'can last for a matter of weeks to several years'. Such high standards of research! At least no mention of THE THREATS. We should be grateful. (And you've got to love The Daily Wail's photo: next time I'm feeling crap I must put on mascara and pink PJs and grab a teddy. Though better than the oft-seen ME photo of a woman at her laptop in the office, with her head on the desk.)


Update****** From Invest in ME FB page re. 'death threats' reference: 'Our complaint to the BBC stated: 'In the article Immune system defect may cause ME By James Gallagher it is stated in the side information, under Chronic Fatigue Syndrome - "Some patients have sent death threats to researchers after disagreements over a cause or cure" This is only conjecture. There is no proof that patients have made death threats. You are only repeating what has been said by some newspapers who have not verified their facts. Where is the police report to validate this claim and how is it proven that any person suffering from ME has made any threat? You have no proof of this and this statement is pejorative and shows extreme bias against a sick and vulnerable section of the public. It is, in fact, discriminatory. We would ask you to remove this immediately' After our complaint to the BBC it seems that BBC have modified their comment - now stating - "Some researchers in the field say they have been the targets of abuse and death threats as a result of their studies." Still an unsatisfactory part of a tardy and insufficient response to the Norwegian research - and still heavily biased.'

'The Threats', a stunning new thriller from UK media

Hoping to draw a line under the hyperbole and bias in the media that have caused so much stress and despair to people with my illness, this last four weeks. We've had the threats of 'suicide bomber' patients ramped up to such an extent that if researchers into ME weren't actually scared off before - a fact which has been ludicrously and harmfully exaggerated - they sure as hell will be now.

Thanks, Simon.

And any letters of reply from our point of view or our charities' - ie people with ME, who live with it, who know it, who research it - have been so brutally edited, we've been lucky to get an adjectival phrase published.

'The Threats' has been a highly entertaining, unnerving mini-series, broadcast over a month:

First, we had Nigel in BMJ.

Then Tom on the BBC, who was so excited he sounded like he was in a spoof documentary.

Then Esther on Radio Five.

Then a panoply of small scale reports.

Then Rod; then David; then Stefanie with Simon himself in the Times.

Then Robin in the Observer.

Then a lovely cartoon in THES (removed).

Then Simon in the Spectator.

Then Max in the Telegraph, unplugged on Friday (then removed, remixed by Monday).

Then Robin on the Guardian Science Weekly Podcast in case we hadn't got the gist in the Observer.

Then Simon repeating himself on the Spectator blog, Coffee House.

So, I think we've got the message now, loud and clear - Simon and his followers will do anything to prevent biomedical research into ME, they desperately want to keep it all to themselves - with their loveable, eccentric and conflating notions of 'false illness beliefs' and 'chronic fatigue syndrome'. I return to an excellent quote regarding this whole stramash, from a journalist in 2007:

“I’m sure there is a lot of psychiatric literature on how denying another person’s reality triggers all sorts of deep hostile responses”.

No one endorses threats, obviously, but the point spectacularly missed by the media is that Simon and his disciples are responsible, in the first place, for creating a climate in which such threats might flourish, by denying the reality of a neurological illness for decades, the way they have.

My final point on this - I am so very, very, very weary with it all - is: Simon, if you want to be a neurologist so much - stealing neurological illnesses and labelling them as psychiatric - then why on earth did you become a psychiatrist?

* I'm pleased 'The Threats' wasn't in any Scottish broadsheet, but I could, of course, be forced to eat my words.

** I just saw this very moving trailer from Voices from the Shadows, premiering this autumn in Mill Valley, California.

Storytelling (5)

More Wesselymania from a UK press apparently lobotomised when it comes to reporting on ME. Wessely jerks these health editors like puppets, it's truly obscene, this cartel of hyperbole and hysteria. We have been treated by the media to a cruel distillation of events since 29 July. Only one side of the story is reported. No mention of the abuse PWME endure from CBT psychiatrist militants. Really - why are Wessely and co still going on about these threats? If they have indeed come from a *tiny* minority of the patient community - why then the need to bleat to the media every week? The way this is being reported you would think these researchers were trembling for their very lives as we speak. Has the Science Media Centre secured Simon a slot in every newspaper every weekend 'til the end of time? (As someone said elsewhere the Science Media Centre is the Science Mendacity Centre when it come to the reporting of ME, which it constantly conflates with 'chronic fatigue'. And Simon, of course, sits cosily on the SMC panel.)

I also see he has changed his wording about Iraq, he is less glib now.

It is really time these people grew up, and left biomedical researchers to do the real job. If they want to research nebulous 'chronic fatigue' - apparently common! – ME is NOT common – that’s fine. But please leave those of us with neuroimmune illness alone and stop causing us harm with your obsessions and inability/refusal to embrace actual science.

And let's just remind Wessely and his disciples of the International Consensus Criteria for ME, published in Journal of Internal Medicine in July 2011.

From Abstract: The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).
And let's also remind them of a recent BMJ thread which the Observer writer must surely have missed when he was recycling - sorry, researching - this article.

Writing emails when you should be the air traffic controller

I don't want to give Stefanie Marsh's love letter to Simon Wessely last weekend more oxygen than it has already had, but a week later I'm still angry - and incredulous -at such sycophantic nonsense being published. There have been some excellent responses which we will no doubt not actually see published - or if we do, they will be edited versions that very much dilute the criticism aimed at both Marsh and Wessely - so I'm highlighting the 25% ME Group's response and also the European ME Alliance's. Both bang on. My own response will, of course, have been rejected, I imagine it is too tongue-in-cheek. When I wrote it in draft, I had both my nephews at my feet, literally, they were on the floor playing at airports, they have a plastic runway map and toy planes; I explained to them I had something very important to do. I was the air traffic controller and I apologise to them again for taking time out of such an important game to write the email, wasting precious time with them. I just felt so misrepresented - and insulted - I had to do something.

Dear Editor

Stefanie Marsh's interview with Professor Simon Wessely ('Doctor's hate mail sent by the people he tried to cure', 6/8/11) would be almost amusing in its bias and hyperbole, were her inaccuracies not so alarming. I was diagnosed with virally-induced myalgic encephalomyelitis (ME) in 1984 by a consultant neurologist, so it's fair to say I have an in-depth knowledge of the illness. It's worth noting I'd never heard of ME - and the label CFS had not yet been coined - when I got ill, but I was transformed from a vibrant, straight 'A' undergraduate to a grey and bedridden 20-yr-old. I feel obliged to say that I do not recognise Professor Wessely as 'Britain's foremost authority on ME' and I do not know any ME sufferers - or doctors - who do. I wonder, therefore, if Stefanie Marsh could provide us with a list of these 'health professionals' - in the UK and worldwide - who hold Professor Wessely in such high esteem in relation to my illness? She reports with great confidence on Professor Wessely's credentials and I am genuinely curious to know.

Yours sincerely,

Nasim Marie Jafry, author of 'The State of Me'