Firestormm
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Wesselys' little boys and girls have published a letter in the Independent newspaper in Britain defending Wessely and psychiatric control of ME / CFS diagnosis and treatment. Such a collection of utter f**ls blinded by their own ignorance and arrogance.
David, look at the names attached to this letter. Look at them. This is in part - a large part I would suggest - about threats (assumed or otherwise), repeatedly being made to researchers or those involved in our condition. There are some names appended who are (still) concerned enough about our condition to be involved and some who are not involved at all.
What part of the following letter - apart from the obvious, continuing and utterly pointless meme "where's the proof?" - deserves your derision? Would say that you disapprove of this acknowledgement being made in public by all those who have appended their names for example:
"This serious illness needs improved treatments and care, and research is central to making this happen."
We would not have had this happen I would argue even when I first received this diagnosis some 15 years ago. Now you can - and others certainly have and will continue to do so - spin this or interpret it as you see fit.
But the central message, the public acknowledgement that our condition is SERIOUS and in need of IMPROVED TREATMENTS AND CARE and that RESEARCH is central - I mean what part of that don't you approve of? Your protest and scorn makes no sense to me.
So people with this condition might not approve of the methods being used to get somewhere by those who are taking up the gauntlet and running with it. Such is our right. As it is their right to study and research. We have so few people interested in this condition - either in treating it in clinic or in researching it - that any more smacking the dead donkey in terms of repeatedly calling for 'proof' and not acknowledging that we are basically screwed, is completely bonkers.
We now have a crap image due to some idiotic behaviour. That image needs rescuing. I've just done a trawl on the internet of the comments attached to this letter - and all of those (hardly any representative amount) posted are continuing in the same pointless fashion: demanding 'proof' and expressing scorn.
This derision based on personalities, what is considered to be their beliefs, on their job titles for heaven's sake - which then translates into 'campaigns' and even to what might be considered as 'harassment' has to stop.
Stephen Holgate is one of the names below. Stephen Holgate! This man was behind all the recent funding announced into "biomedical" research at the MRC! How many friggin' years have people with this condition been demanding 'proper' i.e. not behavioural, research?!
There are other names here, that you casually slap, and refer to as 'Wessely's little boys and girls' - notable names, names you would not want to slap down or refer to collectively in that manner - had you but taken the time to see who they were. We need, I would argue, MORE people willing, attracted, to study this condition and the patients being diagnosed with it - not less.
Do you honestly think that your selection of medics and scientists who are presumed by you to be 'ME-friendly' I suppose are going to collectively come together and, what, post some letter that refutes something in the letter below? What, pray, might they say that would meet your approval? I'm interested.
A collective condemnation of Simon Wessely, perhaps? A deriding letter, strongly worded, which disassociates them or ME from any psychological involvement or from the involvement of psychologists and psychiatrists: 'No shrinks here!'
Because it ain't gonna happen, it's counterproductive. These threats happened. And I would strongly suggest that people get over it, move along, and try to ensure it doesn't happen again.
The letter from Independent on Sunday: http://www.independent.co.uk/voices...-online-postings-2-december-2012-8373777.html
Letter written by:
Dr Esther Crawley
University of Bristol
Herself of course the target of 'campaigns': http://forums.phoenixrising.me/inde...-brochure-threats-of-persecution.20704/unread
"Chronic fatigue syndrome/ME is a debilitating condition affecting some 1 per cent of the UK population ("ME: bitterest row yet in a long saga", 25 November).
The 1% differs from even the NICE Guideline. Temptation here is to allude to them meaning 'fatigue' or 'fatigue inducing conditions' I suppose. It's about time they sorted this out once and for all with some properly conducted epidemiology, based on the most likely-used criteria for ME in the UK perhaps the NICE criteria - I don't know.
This serious illness needs improved treatments and care, and research is central to making this happen.
Amen. Hallelujah. And thank all the gods.
So it is with sadness that we read in The Independent on Sunday reports of allegations made against Simon Wessely, one of the few UK clinicians with a specialist interest in treating CFS/ME and someone who has done pioneering research in the field.
It is bloody sad. Should never have happened. To ANYONE. And the issue concerned didn't, did it? No. It happened to several researchers, clinicians, and if you want to go there, anyone else who happens not to agree with the more vocal minority point of view at any one particular time or who is tarnished as a 'non-believer'. Nobody should be made to feel under threat. NOBODY. And especially not for doing their job and expressing an opinion.
Such harassment risks undermining research, preventing the development of new treatments and discouraging specialist clinicians from entering the field.
Yes it does. Whatever your personal opinion - my personal opinion - as to the direction research takes, who is involved, what the published paper is, how a treatment is applied, whatever - this kind of thing will put people off.
And, because I let things like this get to me I admit willingly, it will affect what people think. Of me and of you. And I've had enough of being thought of as a 'yuppie' with flu, of a 'malingerer' etc. etc. and I really don't want to feel that I have to justify my sanity because of all this.
If I could have any other condition I would. Who the hell wants a condition associated with all this crap?! We seem to attract labels and stigma's like flies. Even if they found some treatable 'biomedical' (heaven's forfend it was psychological) cause or an effective (more effective) treatment - it would have to fight against all this to ensure the treatment was rolled out across the country.
We fear that this may have resulted in patients not receiving the best treatments or care – staying ill for longer and not being able to live life to the full."
It is a fear. Whether a realistic one I don't know - I have no professional experience in this field. I wonder if the banks are having trouble recruiting - I wonder if their personnel feel affected by the public hatred? Apparently they do. Maybe the analogy is too much - too harsh...
Whether or not, you or I, have tried the treatments available - all of them including GET and CBT - and found them wanting, others might not have done. Have not done.And yet, "they don't have ME" for heaven's sake.
And who knows? Maybe people have been discouraged enough not to get involved with studying our condition and maybe this has resulted in a greater swing towards psychological treatments in the past and presently - but I suspect it has more to do with other things than the regrettable behaviour of presumed patient minorities.
Is it a reflection of this kind of collective 'exposure' that less and less 'medical' disciplines are involved actively in our treatment? Maybe not. Perhaps in part. I don't know. I just wish my own and other people's suffering would end and I don't really care myself how it ends - just that it does or is at least relieved in whatever way to a better extent than it is as present.
And to do that we need experts to remain interested and focused and engaged. Not drawing attention to this kind of disgraceful behaviour repeatedly in the Press.
Signatories to the letter:
Professor Michael Sharpe, University of Oxford
Professor Peter White, Queen Mary University of London
Dr Esther Crawley, Reader in Child Health, University of Bristol
Professor Stephen Holgate CBE, MRC Clinical Professor of Immunopharmacology, University of Southampton
Professor Rona Moss-Morris, Head of Health Psychology, King's College London
Dr Charlotte Feinmann, Reader, UCL
Professor Hugo Critchley, Chair in Psychiatry, Brighton and Sussex Medical School
Dr Brian Angus, Reader in Infectious Diseases, Nuffield Department of Medicine, University of Oxford
Dr Steven Reid, Clinical Director for Psychological Medicine, Central and North West London NHS Foundation Trust
Professor Patrick Doherty, Professor of Rehabilitation, York St John University
Professor Paul Little, Professor of Primary Care Research, University of Southampton
Dr Maurice Murphy, HIV Consultant, Barts Health NHS Trust
Professor Tim Peto, Consultant in Infectious Diseases and General Medicine, Nuffield Department of Medicine, University of Oxford
Professor Sir Mansel Aylward, Chair, Public Health Wales, Cardiff University
Dr Alastair Miller, Consultant Physician, Royal Liverpool University Hospital
Professor Diane Cox, Professor of Occupational Therapy, University of Cumbria
Professor Jonathan Sterne, Professor of Medical Statistics and Epidemiology, University of Bristol
Dr Margaret May, Reader in Medical Statistics, University of Bristol
Professor George Davey-Smith, Professor of Clinical Epidemiology, University of Bristol
Dr Jade Thai, Senior Research Fellow, University of Bristol
Dr Gabrielle Murphy, Clinical Lead Physician, Fatigue Service, Royal Free London NHS Foundation Trust
Dr Hazel O'Dowd, Consultant Clinical Psychologist and CFS/ME Team Leader, Frenchay Hospital Bristol
Dr Brian Marien, Director, Positive Health
Professor Willie Hamilton, Professor of Primary Care Diagnostics, University of Exeter
Dr Selwyn Richards, Consultant Rheumatologist, Poole Hospital NHS Trust
Professor Alison Wearden, Professor of Health Psychology, University of Manchester
Professor Trudie Chalder, Department of Psychological Medicine, King's College London."