The BMJ have not published Invest in ME's response, so here It is.
"It is easy to see how the "strange conflation" to which Professor Broome refers would, of course, create a sense of unease in psychiatrists such as himself and his more prominent peers. Chronic fatigue may not be a terminal illness but myalgic encephalomyelitis can be.
The media generally do not portray the condition as a "progressive, paralysing, and commonly fatal illness". Normally the media follow the propaganda which elements in King’s College have continuously promoted since the late eighties.
If people with ME had only "bed sores, chest infection and malnourishment" to contend with then the rest of the patient population would not have to endure the consequences of the stranglehold which psychiatrists have on this illness – which is at the expense of patients and despite more and more evidence showing ME to be a serious and progressive biological condition.
Any pessimism exhibited by those with this illness finds its source not in the condition itself but in the ignorance and mendacity of those who engineer scarce funding from the MRC in order to support the pretence that ME is a somatoform condition, or who publish research based on flawed diagnostic criteria.
In fact those suffering the tremendous disability of severe ME are surprisingly optimistic despite the travails of having to deal with prejudice from the some parts of the medical profession and the media.
To use NICE as an example for promoting the use of CBT and GET is risible and perverse, yet entirely predictable. The fact that 90% percent of ME support groups opposed NICE, the fact that ME patients took NICE to a judicial review in protest at their guidelines for ME, the fact that the only support that NICE could muster from those supposedly supporting the ME community were from organisations that accept government money and who themselves organise “psychosocial conferences” on ME – all of this illustrates the lack of confidence which people with ME and their families have for NICE.
And yet NICE is supposedly there to guarantee excellence in clinical practices.
But we have long since gone past the point where a small section of psychiatrists influencing NICE can really persuade anyone that CBT and GET are serious answers to a neurological illness – we just have to wait for the psychiatrists to catch up or, more likely, be left by the wayside as real science establishes beyond doubt the pathology of this illness.
Patients and their families are increasingly aware of this policy-based evidence making which NICE and those who dominate the MRC promote based on the policies of the last generation which funds only research projects on ME which promote the psychosocial view of its aetiology.
The problem with the treatment of ME in the UK is essentially, as Professor Broome’s posting demonstrates, down to poor education about the condition and this stems from the education of medical students and continues, for many doctors, through their years of practice. It is also heavily influenced by biased research
If one is fed a constant diet of biased research then one can expect little more than ignorance to exist.
But there is hope as biomedical research into ME is on display at the annual Invest in ME biomedical research conferences which take place in Westminster in May – with its theme of Education of Healthcare Staff. Dr Broome could attend this conference on 24th May and clearly see how privately-funded biomedical research is progressing and showing the effects of ME – from cardiomyopathy to viral persistence and, from the latest research by the Whittemore-Peterson Institute, to the discovery of a link between the XMRV retrovirus and ME. Hardly just bed sores and chest pains!
There really is a great deal of catching up to do for some sections of the medical profession with regard to ME.
With one of the lead researchers on XMRV in attendance at this year’s conference perhaps the editor of the BMJ could also attend the conference and write an informative, unbiased article about it for the readers of this journal. The invitation is there.
Ultimately, education really is a progressive discovery of one’s own ignorance."
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