Saturday, 27 February 2010

Getting very bored with Simon

I'm so bored blogging about M.E, I would much rather talk about books but I get so fired up when I see the Wessely footprint, the denial still going on in spite of the robust responses to the last BMJ editorial on M.E.

This article on XMRV has appeared in BMJ, written by Professor of Retrovirology, Myra McClure, and our favourite Prof. of Psychiatry, Simon Wessely. I would guess that the paragraph below is Wessely's contribution (though I don't know this, but it has all the signs). He has reinvented himself as the caring, sharing doctor.

But if the research community was underwhelmed, people with the syndrome were not. If true, these (XMRV) findings would have transformed the understanding of the illness and opened up new avenues of treatment. Some saw this as a definitive response not only to those few professionals who, they claim, continue to doubt the reality of the syndrome, but also to the larger number of professionals who believe that, irrespective of causation, rehabilitative treatments can reduce symptoms and disability. It is depressing that the first, untenable, view is too often confused with the second, a perspective that offers hope to patients and is backed by evidence.

I have no idea if XMRV plays a part in my illness. I am just glad the research is being done and debate is going on so ferociously about its role in M.E. The truth will be discovered. This is how real science works. It's a million times better than the CBT/GET idiocy that is still being peddled - euphemistically referred to here as 'rehabilitative therapies'. (I'm sure this therapy helps those with poorly defined depressive/fatiguing illnesses, but that of course is not what M.E is. Yet the denial goes on, the reference to 'evidence'. Prof. Malcom Hooper was not exaggerating when he compared these strategies to those of Holocaust deniers in his recent 400 page report/complaint to the MRC.)

I know without doubt that Coxsackie B4 triggered my illness and that I have done everything in my power since 1983 to rid myself of this hellish condition. I know I have pushed myself too hard and caused major relapses. I know I have had relapses for no reason. I know that I am not clinically depressed. I know that pacing myself helps enormously - and is the only way I can function (at a greatly reduced level to normal), being intuitive, listening to myself, stopping when I know it is time, when my muscles burn. I know I have to sleep for at least 11 or 12 hours or I feel like hell. I know my life has been radically different to the life it would have been.

How do I know all of this?

Easy peasy! Because I am intelligent, because I experience this every day, I can work out for myself what is going on with my own body. No somatisation going on here, Prof. W, just a neurological illness. I wonder, Simon, did you read any of the responses on the Santhouse thread, or did you just skip over them 'cos they made you feel a teensy bit uncomfortable?

Invest in M.E comments on XMRV trials.


Amy said...

The title of your post made me smile - I had seen the latest BMJ piece this morning; felt the same and wondered if you'd seen it.
It all feels rather disingenuous - the reference to the "reality of the syndrome" - what type of syndrome are we talking about here? And the reference to the "evidence", which we know isn't nearly as strong as they're making out.
On and on we go...

nmj said...

Pleased to see there has been a response to the article about this exact paragraph.

nmj said...

Hey Amy, You snuck in there, it's infuriating, the same mealy-mouthed nonsense - but really any articles Wessley pens or co-pens should also include his previous very derogatory comments about PWME in the footnotes.