Simon Wessely Says:
November 9, 2012 at 14:48
I am not going to respond to questions like why haven’t I named those who have threatened me and such, because it doesn’t really matter what I say, you either believe what journalists have written on this issue and who have seen the evidence or you don’t.
Nor am I going to get into a prolonged exchange. I do however wish to respond specifically to this point, which is often made, and which is a variation on the theme of the claim that the patients that I have seen, now numbering over a thousand in the last couple of decades, do not have this illness, or do not have abnormalities on various research led investigations that we have done over years and so on and so forth.
I respond to that, because basically it is an insult to them to claim that they do not have CFS/ME, and must in some way be “psychiatric” whatever that word means.
So here is the response that Tony Cleare and I wrote to thisalgto,wihi when it surfaced when we published the first non replication of the XMRV study, and which in turn triggered a considerable number of deeply unpleasant e mails, threats and allegations made against not me, but against the virologists who carried out the lab work for the paper.
PO o here is our response from the PLOS ONE website. If you don’t want to read the whole reply, here is the key closing sentence:
“”On behalf of the patients that attend our CFS clinic, we resent the implication that they are in some way different, less ill, less disabled, let alone less deserving, than CFS patients in any other service or setting. It is otherwise, and we have provided a wealth of published data to back this assertion”"
and here is the full response:
“As the clinicians and scientists who provided the samples that were tested at Imperial, we wish to respond to some of the comments here and elsewhere regarding the patients who provided these samples.
In the paper we provided extensive details of the sample selection, criteria, assessments and investigations that are routine in our service, together with references/citations to all the material
To re iterate.
1. The criteria that we use are the Fukuda et al 1994 criteria that are far and away the most widely used across the world and in the research literature. We do not use the so-called “Canadian criteria”, which are designed for clinical use, not operationalised and do not translate easily for use in research. Even so, had we attempted to do so, a substantial proportion would have also met these clinical criteria.
2. The patients resembled those seen in secondary care and tertiary care services elsewhere – most particularly they are similar to those seen in clinics in Australia, USA, Scotland, England and Northern Ireland (Wilson et al, 2001; Hickie et al, 2009).
3. We follow the same psychiatric exclusion criteria as mandated by the Fukuda criteria. We do this on the basis of semi structured interviews and assessment that we have also published. In addition, we also exclude patients with chronic somatisation disorder as defined by DSM-IV, which is not required by the Fukuda criteria, but most experts and clinicians agree are a different population. This is only a small percentage of our referrals.
4. In answer to one question, yes, our patients all report both mental and physical fatigue, exacerbated by mental or physical effort. Nearly all also describe post exertional fatigue and malaise.
5. We have a standard laboratory protocol for investigations, which are performed on all those referred to the clinic, unless they have been done recently by the referring doctor. These are solely for the purpose of excluding other diseases that can sometimes mimic CFS, and are part of the differential diagnosis.
This is standard practice in every CFS service of which we are aware and forms part of every definition of which we are aware, including the “Canadian criteria”. In addition to the standard work up, we also now routinely test for coeliac disease, because we found a 2% prevalence of undetected coeliac disease (Skowera et al, 2001). In answer to another question, we perform a 9.00 am cortisol as a screener for Addison’s disease.
6. In addition we also perform tests as part of research protocols. We always tell patients that these additional tests and investigations are not necessary clinically, and are performed with informed consent.
Thus patients in our service have also co operated in studies of PET and fMRI neuroimaging, autonomic dysfunction, neurochemistry, respiratory function, vitamin status, anti nuclear antibodies, immune function, neuroendocrine function and genetics (see references).
Hence it is untrue to state that patients at King’s for example do not show alterations in immune function – in fact they do – see Skowera et al, High levels of type 2 cytokine-producing cells in chronic fatigue syndrome.” Clinical and Experimental Immunology 2004: 135: 294-302.
Similarly, many of our patients also show altered neuroendocrine, neurochemical and other biological parameters, and we have published many examples of these (see references below). It is therefore simply untrue that we either seek to find no biological changes in CFS, or fail to report those that we do find.
7. On the other hand, it is true that those who receive a diagnosis of cancer would be and are excluded from a diagnosis of CFS and if this is detected they would be immediately referred to the relevant clinical services.
It is possible that this may be a difference from the cohort originally reported in Science, if the Wall St Journal is correct (
http://online.wsj.com/art…).
8. We do not perform these additional tests to confirm or refute a diagnosis of CFS, but to further understanding of the illness.
If and when a properly validated diagnostic test is developed for use within the National Health Service, all our patients will be offered it free of charge, just as they are already offered diagnostic assessment, investigation and treatment free of charge.
9. We did not perform any selection in any shape or form of the samples that we hold to send to Imperial College, as again has been suggested.
Overall, we wish to emphasis, and to do so emphatically, that our patients are typical of CFS patients seen in specialist care elsewhere.
We specifically refute the suggestion that our patients are in some way more “psychiatric”, whatever that means, than those with “real CFS”, an assertion that has been repeatedly made in other venues.
The rates of co morbid psychiatric disorder, for which we routinely screen, are again similar to those seen elsewhere.
We draw attention to another study that compared two services run in the same London teaching hospital, one by an immunologist, the other a psychiatrist, but showed no fundamental differences between the two (White et al, 2004).
On behalf of the patients that attend our CFS clinic, we resent the implication that they are in some way different, less ill, less disabled, let alone less deserving, than CFS patients in any other service or setting. It is otherwise, and we have provided a wealth of published data to back this assertion”
Professor Simon Wessely, Professor of Psychological Medicine
Professor David Collier, Professor of Psychiatric Genetics
Dr Anthony Cleare, Reader in Neuroendocrinology
[Note: Firestormm hasn't included the references to save some space]