That Lancet piece is pretty funny. It would have been nice to see what references they would have used to support their various claims about patients and critics of Wessely.
the scientific right/wrong of Wakefield/MMR is not the issue, merely that such questions have sod all chance to overcome the entrenched self interest machine deluxe that is the emeshed web of nepotism that is the British State and system (and it's tied in well with the USA, Australia and Holland)
I disagree, and think that the right/wrong is very important. If Wakefield's results had been widely replicated, they would have been accepted, even if they went against the interests of many of those with power and authority. That's not to say that politics, power and money do not distort how science operates, especially in areas where the evidence is uncertain, but really compelling evidence can still overcome these distortions. If Wakefield's results had held up under blinded conditions it could not have been covered up.
Re: Wessely and co. I have always found it interesting that we never hear from any of their patients (especially Wessely's patients) who have found his interventions and care as inappropriate as his more vocal critics appear to suggest they are or should be.
I feel sure that if patients had come forward before now to declare his actual clinical techniques detrimental, we would have heard and seen these reports blasted around the internet by now.
To my knowledge, this hasn't happened. Ever. And I'm not referring to Proctor. To single an individual medical professional out is to me the wrong thing to do. It achieves nothing. As has been said, Wessely has never been referred to the GMC for example, it is his ideas and more to the point his quotes that raise people's hackles.
I've seen a couple posts from CFS patients saying that they were unhappy with the care they received from him, but don't find this that interesting either way. I've only seen one person say that they were helped by him. Given the emphasis that he places upon the doctor-patient relationship and the skill he seems to have in managing how he presents himself to others, I would not be at all surprised if the vast majority of the patients he saw came away feeling positive about him - many homoeopaths report the same thing. This doesn't seem that important to me. From most of what I've seen from others, and think myself, the majority of the concern about Wessely and his work is related to his promotion of a biopsychosocial approach to CFS and the pragmatic management of the cognitions of patients: the social impact of his work, rather than the impact he may have simply working in his clinic.
As patients it is our experiences that will impact upon any intervention recommended be it a drug or a therapy or management strategy. If we were somehow able to 'beef-up' our anecdotal evidence with actual on-the-ground research (as recommended by NICE) that proved for example - CBT was perhaps only effective as a management strategy and not particularly for ME - or that CBT wasn't available to many people - or that even where it was available it wasn't being taken up by patients - or that patients were not finding it addressed their ability to return to work - etc. etc. then we might get somewhere.
Who would be analysing the data? BACME? People whose careers depended upon funding for CBT/GET at CFS centres? That sounds worse than nothing. We've had an independent audit of Belgium clinics, which showed them to be pretty useless, but nothing changed. So long as those claiming to be 'experts' need to have a 'treatment' to justify their incomes, misleading claims are going to go on being made. Although I was quite uninformed about the details, and expected more rigorous outcome measures, I was somewhat supportive of the PACE trial, and thought it made sense to pool funding to do one big thorough study rather than lots of rubbish little ones that told us nothing. Now that I've seen how the results from PACE were spun, I do not think that more research in this area is needed. Certainly not if those whose careers have been built upon a biopsychosocial approach to CFS are involved in choosing how data should be presented.
There's a recent thread on what seems to be a new attempt to spin data, and avoid releasing results in the manner laid out in the trial's protocol here:
http://forums.phoenixrising.me/inde...d-releasing-data-on-recovery-from-pace.20243/ Peter White presenting Freedom of Information requests as harassment is pretty entertaining.
What also concerns me is that if you take away CBT and GET (as management strategies i.e. overall strategies for coping that include both of these practices as and where appropriate) what is there to replace them?All we have aside from help with some of the symptoms are management strategies (call them what you will).
Or are people hoping that evidence-based research from the trenches would simply see these interventions removed? I mean what is it really that bothers people? It was always for me the way in which these things were sold outside of the NICE Guideline.
CBT and GET can be such amorphous things that we could imagine them to be almost anything. However, given the way that the NHS currently operates, and the dishonesty and spin which surrounds how these approaches are sold for CFS to doctors and to patients, I think that it would be best if they were completely removed, even if they were replaced with nothing. The more I've read of CFS research and how it is treated in the UK, the more that I think we need a complete reset. A period of stripping away all of the quackery before we try to build up something which might be helpful to patients. Without that, false claims will go on being spread, and many patients will, quite rightly, be unable to trust the claims being made by their doctors.
At the very least I think that NICE should acknowledge the serious problems that have occurred in the way the CBT/GET are promoted to patients, and make it clear that this is unacceptable. (To be fair to NICE, they did emphasise the need for honest and accurate information last time... but without condemnation of past problems, I think that they are likely to continue).
The simplistic media headlines and the mis-communication of the actual PACE results. But the extent to which some have slagged Wessely and co. off strongly suggests that it isn't all about CBT and GET.
There is something about what he has said, what he says, that people take very personally. Essentially, that you and I are mentally ill or that somehow we have control over our condition; that we are responsible for it and the implication being that we can recover from it by thinking ourselves better.
To some extent, I think that's right (although as I'm sure you're aware, quite a simplification). It is odious quackery to lump patients together under a CFS diagnosis and then reassure them, encourage them to believe that they can reverse their symptoms, etc, without having good evidence about what was causing their health problems, and the extent to which they had control over it. As a broad approach towards patients; whether it's part of CBT, GET, or anything else; for those in positions of authority to manage the cognitions of patients without good positive evidence of cognitive distortions, and when we have such a poor understanding as to what cognitions serve to accurately reflect reality, is shameful and immoral quackery; especially given the difficulty with and indifference towards gaining genuinely informed consent. The biopsychosocial approach to CFS was always likely to lead to patients feeling angry and mistreated - yet there now seems to be some attempt to blame the patients for this, while ignoring the problems with how patients were, and are, treated.
Also, I think that this tolerance for manipulation fed in to the culture which allowed so many false claims about PACE. To portray it as simply a matter of 'miscommunication' seems to downplay the serious moral concerns that there should be when data is misrepresented in this way. Misleading patients, doctors and societies about the efficacy of treatments is disgusting, and those responsible should be removed from any position which gives them authority over another.
I very much doubt if even half the people who spout and condemn Wessely in the way that they have done - with vindictiveness and through use especially of incorrect 'evidence' - are actually associating him with what he has actually done.
'The Wessely School' is an oft-cited meme. Wessely has become known on the internet as being all that is wrong with ME. The fact that there is no cure - Wessely's fault. The fact that there is no clear evidence of causation - Wessely's fault. No better criteria - Wessely's fault. Etc. Etc. You know who I 'blame'? Those f*&$%@! 'biomedical' scientists!
I'm sure that some people do blame Wessely for things that are not his fault, but I'm also sure that lots of people defend him wrongly too. I think that Wessely has had a harmful impact upon research in this area, but I'm also doubtful that we would have progressed much further had he not. Regardless, the uncertainty and lack of good evidence that surrounds CFS does not justify the approaches promoted by Wessely.
Anyway, I must have seen several dozen doctors and consultants over the 15 years. And some of their opinions proved to be shit. Not worth anything - certainly not some of the fees I paid. But that was in respect of me and they could have helped others - assuming they're still in business of course and I'm not talking about 'alternative' practitioners here either but conventional specialists.
For the most part these eminent professionals (well some of them - more than my fair share I have to say) felt helpless. Those that were any good expressed this helplessness to me before sending me off down a route without appropriate warnings.
Since attending a CFS centre about 6 years ago, I've barely seen anyone. And I doubt I will until really significant reforms have taken place, and those responsible for the problems that have enveloped CFS have been removed... or that unlikely miracle break-through occurs.
I do not have any problem accepting that doctors are often unable to help those with health problems, or that honest mistakes will be made, but that is quite different from having medical staff deliberately promote views of reality which they know are not supported by the evidence, but are instead just thought to be a pragmatically helpful way of managing patient's cognitions. I'm not willing to go on being managed by a system which tolerates and promotes such quackery. I do not think that I, or any other patient, deserve to be treated with such disdain.
Wessely is a convenient outspoken bogey-man. And like all bogey-men the world over - the more people talk about him - the more power he is given. But the simple fact - I would suggest - that no former patient or patients have ever made their presence known suggests that perhaps he doesn't practice what he is so often accused of preaching.
I'm sure that politically it would be more effective to completely ignore Wessely - but I also think that it's good to try to hold people accountable for their actions. People can be drawn in to a joyful condemnation of bad people, one that ignores the complexities that surround human actions and encourage a kind of mob-mentality, but that does not mean that those being condemned are not bad people who should be hated.
Sorry. Couldn't sleep. Can you tell
Ouch... 7:16 is a late night! Hope you had a nice lie in.