You do like to rely on second hand information don't you! But I understand that to you, my posts are second hand too. Yet you much prefer these old posts picked from the internet to my up to date experience of a Barts clinic. Why is that?
It's as if you've only just realised the problems with anecdotal evidence. The posts from MSE were only two years old, and I don't think they should be seen as any more or less valid than your own descriptions of your experiences. They're not contradictory, and together help build a more rounded picture of White's approach to CFS patients.
RE this and the Nice Guidelines link.
My first-hand experience of Peter White is that is he is exactly as you would expect a doctor to be, professional, kind and supportive. I'm sure that's difficult for you to believe from the endless rumours that are spread on the internet. I find him to be a good doctor who makes referrals to competent people, rather than the crap neurologists and crap psychologists that poor Valentjin has to suffer. But then she/he is in the Netherlands.
Peter White works with a competent team of physios, psychs and OTs and other medics, to provide medication and support. GP's are kept up to date with what is going on so they can continue that support. And all is done with respect.
It depends what you mean by 'respect' and 'competent'. To me, White's willingness to manipulate the presentation of the results from PACE would require a level of disdain for patients, or at the very least a self-serving disinterest in their right to be provided with accurate information. Anyone who was both respectful of patients and competent would have spoken out against the way in which the results from PACE have been manipulated as soon as they became aware of them. As far as I'm aware, none of White's colleagues at Bart's have done so.
What are you doing Dolphin? Spreading information that you've got off the internet.
Your personal vendetta against Peter White and therefore Barts is long standing, but personal hatreds really don't help the community see what services are available for them.
Your approach has nothing do with getting the best for patients.
You can confuse science with clinical practice and get wound up by the word recovery but who are you helping?
Patient advocates should provide current up to date information that patients can use to help them make the best choices about their health. Maybe you did that at some stage. I don't think you are doing that now.
Given your own disinterest in the published work of White and his colleagues, and have attempt to defend him through anecdotal evidence, it's slightly embarrassing to watch you criticise Dolphin for spreading information from the internet. I, and many others, have anecdotal evidence of the way in which the false and misleading claims promoted by White et al. have led to mistreatment by GPs, CFS specialist centres, socially, with the DWP (for whom White is an advisor), with insurance companies (for whom White is an advisor)... but these anecdotes are of only limited value for understanding how CFS is treated and why.
If you want to try to defend the way in which patients were classed as 'back to normal' following treatments in PACE, or the even more serious way in which Crawley spun their results to NHS commissioners in her recent paper, then that would be interesting. If you're just telling us that you had a lovely time chatting with White, and he was oh so charming, so we should forgive and forget his history of quackery, then I do not see why you would expect this tale to be seen as any more important than one from a patient who really loves their local crystal healer: 'Sure, they make some dodgy claims about their ability to help people in order to take funding, but they are so good at making me feel lovely about myself.'
Most people who have read about the approach to CBT taken by White will know that therapists will want to appear likeable to patients, build a sense of collaboration, a belief that the patient's symptoms are being taken seriously, etc. This isn't shocking news. However many of us have no interest in working with those who are willing to misrepresent data, make false claims about CFS, promote misguided notions to other doctors, medicalise and manage the cognitions of patients on pragmatic grounds... even if they are excellent at appearing sympathetic in a consulting room. There is a difference between science and clinical practice, but it is you rather than Dolphin who seems confused about this. The poor and misleading science matters more than the clinical practice that tries so hard to seem caring. The science will have more of an impact upon patients, in a wider range of ways, and over a longer period, than White acting concerned about your health before he pops off to BACME to exaggerate the benefits of CBT/GET for CFS.
I'm pleased that you think you are more able to contribute something to your fellow human beings and local community, but I'd like to suggest that you try to think a bit more seriously about what responsibilities we have to one another, to communicating accurately and clearly, and to engaging in an honest pursuit of truth. If you devote your greater functionality to defending those who are happy to manipulate and mislead people about CFS and their ability to treat it, then you could end up like them, doing more harm than good. If you want to achieve something worthwhile, then get talk to White about providing the results from PACE in the manner laid out in their published protocol rather than according to his later manipulations. Or make it clear that actometer readings, or some other measure of disability level less easily distorted by response bias should be used when assessing the value of treatments for CFS. Try to get White to do better and more honest science, rather than trying to get CFS patients to feel happier about the quackery we're currently stuck with.
