Sunday, 21 August 2011

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.


Wildaisy said...

Thank you for posting this. You can post a response to this ridiculous Gardian article here:

I have posted one. I hope other people will too. Here's mine:

August 21, 2011 at 12:30 pm

Re: Chronic fatigue syndrome researchers face death threats from militants. No evidence whatsoever has been produced by any of these researchers who are accusing people suffering with Myalgic Encephalomyelitis (M.E.) of harrassing them. People who suffer from this disease are in constant pain and they are often disabled and homebound. It is difficult to imagine these healthy researchers really feeling threatened by patients who are often too sick to leave their homes. In any group, however, there may be a few people who are unbalanced and say unwise things. Should a whole category of medical patients be accused of proposed wrongdoing if and when a tiny number of people who are believed to have their same diagnosis make the mistake of saying words which can be interpreted as threats? If we do this, then any group should be accused the same way. Why should people suffering with a real physical illness be continually denied treatment because some researchers believe the illness to be psychological? That is the real question. Simon Wessely and his friends in the psychology business have been denying effective treatment to people who are suffering brain lesions, continual physical pain, inability to work and other patients are dying from the results of this illness. And this has been going on for years. THIS IS THE REAL PROBLEM. The problem is not a few unkind words being said to these psychologists who are denying treatment for physical illness; the problem is the denial of treatment.

Patricia Carter

Cusp said...

What is it with Simple Simon ? I just couldn't believe it when I noticed he'd popped up in the press again today....and hawking the same old whines and : abberant stalking beliefs ?

nmj said...

I looked in the Comedy Guide to the Edinburgh Fringe to see if Crawley & Wessely were maybe doing a double act of black comedy: How to Smear an Entire Patient Population to Save your own Very Flawed Research.

What can we expect next weekend, their very own cartoon strip in one of the Sunday supplements?

I am sick of these buffoons, I really am.

nmj said...

Just sent this to Observer:

Dear Editor

RE. Scientists face stream of ME death threats:

I'm disappointed to see the Observer join in this cartel of hyperbole and bias from Professor Wessely and his followers on the subject of ME. One wonders why, since the alleged threats are from a tiny, tiny minority, Professor Wessely feels the need to be courting such dramatic headlines week after week? Could it have anything to do with the 'International Consensus Criteria for ME' published in the Journal of Internal Medicine in July, which agree on post-exertional neuroimmune exhaustion (PEM) as the defining feature of ME? Unfortunately, patients know only too well that Drs Wessely and Crawley - and the others - do not study neuroimmune ME, they study - by their own criteria - a broader, less disabling, less complex fatigue that appears to respond to graded exercise and CBT. I was diagnosed with virally-induced myalgic encephalomyeltis (ME) - the label 'CFS' had not yet been coined - in 1984 by a consultant neurologist, so it's fair to say I have an in-depth knowledge of the illness. I was transformed from a vibrant, straight 'A' undergraduate to a grey and bedridden 20-yr-old. I contracted an enterovirus and never recovered. Almost thirty years later, I remain ill. Graded exercise makes me worse, and Crawley's talk of social deprivation and stress and adversity as a cause in adults is nonsensical to me.

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

nmj said...

Support for all of us in UK from Osler's Web author Hillary Johnson. I'd gone to the thread to follow up a comment I'd left earlier and was delighted to see she very much enjoyed The State of Me, called it 'classy writing'.

I wonder if Simon reads her website, he should.

nmj said...

And they appear to have toned down the headline in the online version. I have the actual Observer from yesterday. An entire page with the dramatic headline: 'Scientists face stream of ME death threats' and then sub-heading: 'Assaults, hatemail and knife attacks are the daily fear of researchers into chronic fatigue' bla bla bla

I think we should all call Simon's bluff. Say, Okay, Simon, you are right, we are all mentally ill. Let's do graded exercise, let's go treadmilling, can't wait. And how long til we are all bedridden again? That will be lovely, very productive for society.