Professor Simon Wessely on XMRV (2)
Note: A previous response from Professor Wessely to an enquiry from a member of the public, published here on ME agenda at:
Two responses around XMRV: Prof Simon Wessely; Dept of Health: http://wp.me/p5foE-2mS
has been removed from this site as the terms under which Professor Wessely’s response might be republished had not been discussed. A copy of the response had also been published by me via Co-Cure together with one from the Department of Health. This mailing has also been removed from the Co-Cure archives.
On 20 November, I emailed Professor Wessely to apologise for any inconvenience this oversight may have caused. I also took the opportunity to remind him that in October, last year, I had contacted him in connection with a presentation he had given in the US Columbia Center for Bioethics titled:
From Nothing to Nice: 20 Years In and Then Out of Chronic Fatigue Syndrome
I was interested to learn whether a transcript or notes of this presentation were available and whether the “Nice” had referred to the NICE Guideline CG53 for CFS/ME, but did not receive a response from Professor Wessely at the time.
Professor Wessely has yet to respond to my email of 20 November but I am hoping that he will be addressing my enquiry since there is no internet source for any information about this Columbia Center for Bioethics presentation.
In the meantime, I am publishing below a further response from Professor Wessely – this time to an enquiry from a member of the public outside the UK and for which Professor Wessely has given permission to republish.
Response from Professor Simon Wessely
Your story is a familiar one, and I am of course very pleased that you have done well. Many people do, but sadly not everyone.
Certainly I would like to feel that you would have been treated with equal respect within our medical system – although one cannot be sure of that. However, I am certain you would have been treated with courtesy and respect at our service, which exists solely to look after CFS patients here on our national health service. We have seen now over 3000 sufferers, and I really don’t think that would have been the case if we did not show kindness, courtesy and patience to our patients.
However, I would like to point out that it is not “my” definition of CFS that we all use around the world – I happen to think it is a reasonably good one for the moment, but I am afraid I cannot take the credit for it.
Like you, our patients also say in half the cases – I definitely got sick after a virus – and in another good proportion “I probably got sick after a virus” – if you do read our papers, all of which are on our website, free access, you would see that we regularly draw attention to that finding, which remains consistent. Hence one term in frequent use in this country is post viral fatigue syndrome as a synoymn for ME. We have over the years published several papers looking at viral and other infective risk factors for CFS, and for example showed that viral menignitis for example is a proven risk factor, and we have contributed to the literature showing that EBV is likewise.
I have to say that is one reason why I am not convinced that XMRV is the explanation for three quarters of cases of CFS – it would imply that all the other studies, that use longitudinal and hence powerful designs were wrong, and I don’t think that they are, because they are robustly designed and also replicated.
But as I seem to have said on several occasions in the last few weeks, science is a great thing. One thing that I am sure about is that in the coming months we will know if this really is a great break thorough – and make no mistake – if the finding is replicated at the same level of signficance that is being reported (and I read that the authors are now saying that they are finding evidence of XMRV in 95% of cases) then it is a great break thorough indeed and will change our views of the illness, and will of course lead to improved management and treatment, which is what everyone wants, including yours truly. I genuinely believe that the treatmetns that we offer, some of which we helped pioneer (and by the way, they don’t involve psychotropic medication!), have been shown to improve outcome in CFS, and I am proud of the way in which myself and many colleagues have contributed to this. But I also see a large group of patients who have not been helped, and whom I see for basic support, and help with the myriad twists and turns of our welfare state. So if something new comes along that improves outcome even further, no one will be more pleased than myself and my colleagues. Why on earth would we not be?
So we shall see. Science is a self regulating system, and the truth does come out, albeit sometimes slower than we might wish. In my opinion, for what it is worth, I would be surprised if in a few months time we still find that XMRV is associated with two thirds of cases of CFS. I have been around a long time now, and have seen other spectacular claims fail to pass the utterly essential test of replication by other groups, in other places. If I was a betting man, which I am not, this is not something I would bet my house on. But as I say, we shall see, that is for sure.
My advice is to be patient – if this is indeed a genuine advance, it is worth waiting a little longer for.
One last thing, no, I won’t be making any statements. I am not a politician. I also do very little these days around CFS – I still see patients every week, and I keep reasonably abreast of the literature, but it hasn’t been my main interest now for many years. But can I say how refreshing it is to have someone ask if they can publish my reply to them – it is nice to meet someone who also believes like I do in old fashioned courtesies like that. Sadly as I know from bitter experience, many do not. Thanks for asking, yes you can, but with one proviso – it must be in full or not at all.*
With kind regards
*See previous posting on ME agenda:
14 April 2008