Over the next few days, I am planning to post a brief commentary on what has been happening over on Planet Wiki in relation to Wikipedia article page for Professor Simon Wessely. Defined by Wiki Admin as a “Controversial” topic, this article (in common with the CFS page) is closely policed by Wiki Admins. There is a big brass lock like the one on my shed at the top of the Wessely page and the page is currently protected from editing until disputes have been resolved.
In the meantime, social scientist, Angela Kennedy has kindly given permission to publish an edited commentary originally published last December, following the publication of the “Gibson Report”. This important commentary has considerable relevance to what is currently happening on Wiki Wessely.
This is an edited version of a commentary first published in December 2006 by social scientist, Angela Kennedy, following publication of the “Gibson Report”.
More thoughts on the Gibson Report from Angela Kennedy
These are some of my thoughts on some problems in the Gibson Report.
My own concerns below are in addition to other concerns expressed by others (including but not limited to the dismissal of Lyme, the children’s section, the approval of CBT etc) and also in addition to approval of some of the more positive aspects of the report. As I have said before, the key is that no matter how positive some aspects may be, it is the dangers that we need to guard against, and therefore it may not be in the community’s best interest to wholeheartedly endorse the report, even in principle. In fact my own opinion at present is that it would be foolhardy.
It was only by reading this report about four times and reading John Sayer’s comments [Page 77: The ONE CLICK Report Gibson Inquiry], and putting my sociological linguistic analysis head on (as tedious as that appears to be to some people!) that the following problems occurred to me. I didn’t see it on the first reading at all.
With regard to point 2 below, the Report claims patient hostility TOWARDS DOCTORS THEMSELVES (not their policies) SEVEN TIMES.
With regard to point 3, I believe that comment from the Report has been made before by a Psych – possibly Peter White? [Ed: ref to Professor Peter Denton White, Barts CF Service] I will look it up.
These comments have been submitted to One Click as part of their consultation exercise.
My comments are as follows:
1. This report is written in a very idiosyncratic style – which one would not expect from a document produced by a group of parliamentarians and where clarity is of vital importance. There are, therefore, some confusing statements requiring further clarification, for example:
“The group does not intend to criticise the motivations or actions of any one group…” (What does this mean? Should an Enquiry not present criticism if necessary?)
“…indeed, the Group wishes to avoid being distracted by debates centring on semantics in this difficult and contentious field…” (This statement is charged with innuendo yet nebulous at the same time. What ‘semantics’ problems have been encountered by the Group?)
2. Both by Dr Ian Gibson himself in communications around the report – for example, in his article published in the Journal of Clinical Pathology in August 2006, and within the Report itself, emotive and inappropriately inflammatory language against patients, both individually and as organised advocates (or ‘groups’), that has no place in a report ostensibly on scientific research into ME/CFS has been used on more than one occasion, for example, from the report:
“…for some sufferers, their personal physical experience of the illness has led to resentment of those who favour a psychosocial/behavioural course.” (This comment is unnecessary and speculative. Patient representatives who criticise the psychiatric paradigm do NOT express negative personal feelings towards the proponents of the paradigm. They critique the paradigm itself and the actions of its proponents. To claim otherwise is emotive and inflammatory.)
“…we are left in no doubt that this is a contentious field, and some of the evidence we heard provoked considerable hostility from the audience.” (What audience? Why an emotive term such as ‘hostile’?)
“Quite apart from the often strongly polarised views of some patient campaigning groups and the scepticism of some of the medical profession, there have been disagreements, even amongst those who represent different groups of patients and medical professionals. This has left many patients feeling very aggrieved, and many doctors feeling misrepresented.” (The comment about patients’ feeling is unnecessary and contributes to an insinuation of patients as being “over-emotional”, while doctors, in contrast, are merely and justifably feeling ‘misrepresented’.)
“Professor Wessely is considered by many to be the leading expert on treating CFS/ME and the CFS/ME treatment centres set up by the NHS have been to his model. Many patient groups oppose these treatments, because, although they are founded on the positive results of controlled clinical trials, they are psychologically based.” (Here patients are implied as being prejudiced against psychological treatments, despite the alleged efficacy of the treatments. This is clearly not an accurate summing up of advocate critique of the psychiatric paradigm, which is based on critical analysis of the evidence and claims put forward by proponents of the psychiatric paradigm. To insinuate otherwise appears disingenuous.)
“Wessely gave up the research side of his work, possibly due to extreme harassment he received from a very small fringe section of the ME community.” (It is quite simply ludicrous that an inquiry carried out by parliamentarians has apparently accepted such serious yet nebulous, and apparently un-evidenced allegations at face value. This part of the report is particularly inflammatory towards patients and therefore inappropriate.)
“Their observations that GET [Graded Exercise Therapy] may make severe sufferers feel worse, has lent fuel to their often serious antipathy to the doctors offering it.” (Again, this comment is unnecessary and speculative. Patient representatives who criticise the psychiatric paradigm do NOT express negative personal feelings towards the proponents of the paradigm. They critique the paradigm itself and the actions of the proponents. To claim otherwise is emotive and inflammatory.)
“…there is a great deal of frustration amongst the CFS/ME community that the progress made in the late 1980s and early 1990s toward regarding CFS/ME as a physical illness has been marginalised by the psychological school of thought. It is clear the CFS/ME community is extremely hostile to the psychiatrists involved.“ (Again, this comment is unnecessary and speculative. Patient representatives who criticise the psychiatric paradigm do NOT express negative personal feelings towards the proponents of the paradigm. They critique the paradigm itself and the actions of its proponents. To claim otherwise is emotive and inflammatory.)
The frequent categorisation of patients as angry and hostile is a highly unfortunate feature of this document. It has already been found that this tendency to describe patients thus is rife within the literature of proponents of the psychiatric paradigm (Kennedy A, 2005, Hooper, 2004, Marshall and Williams, 1996, 1999). It is therefore highly demoralising to see similar constructions of patients within the Gibson Report.
In Gibson’s JCP article, he states: “…to curtail attempts of some to suppress what they hear and what they see written down and to keep their vitriolic actions and comments at bay.” It is clear that Gibson has allowed personal prejudice to inform the way he has constructed the very people he claims to want to consult. In the circumstances, it is ironic that the Gibson report claims “…our task is to highlight the ongoing struggle of the CFS/ME community and to ensure that the voice of the patient is heard.” By constructing patients or their representatives as hostile, ‘vitriolic’ and unreasonable is to further alienate the community from enfranchisement. It is astounding to find such emotive and inflammatory language in such a document.
3. “…for some doctors to deny the existence of a physical part of the illness is as equally unhelpful as the claim by some patient groups that there is no psychological element to the disease.” (This statement is problematic on a number of fronts. There is a construction of a “straw man”- the alleged doctors who deny physical elements of the illness. In actuality, no doctors would do this. The fundamental contention arises where doctors assign psychiatric causes to physical symptoms. By ignoring this fundamental problem, the Report engages in “fence-sitting”, which, in actuality, allows the psychiatric paradigm to take ascendancy. Furthermore, to claim that ‘some patient groups’ are claiming that there is no psychological element to the disease is speculative and misrepresentative – patients have instead been arguing that any psychological aspect of ME/CFS can be seen in any other organic disease, and that there should be no special pleading for ME/CFS as somehow more ‘psychological’ than any other organic disease.)
4. “A lot has been made of the link between CFS/ME and Lyme’s [sic] disease or Lyme Borreliosis.” (What does “A lot has been made” mean? In light of the further statements made on this subject – it appears a very trivialising statement to make, in the face of strong research and clinical evidence demonstrating the relevance of this issue to ‘CFS/ME’.)
5. The recommendations in section 4.7 are astounding, for example, “other symptoms should be treated only when the doctor had absolutely excluded any other underlying organic illness that could be the cause…” and “ if depression is felt to be a significant result from the illness and contributing to its overall effects then anti-depressants may help if prescribed with full explanation by the doctor.” In this section, the Gibson Report is actually giving medical advice to doctors, a la NICE! This could not possibly be part of its remit.
6. “…the lack of easy confirmation of the organic nature of the illness by a readily available investigation lends itself to occasional invasion by those who are not genuine sufferers. The existence of such patients, and the inability of some in the medical profession to separate them from genuine patients with CFS/ME enhances the view that all patients with CFS/ME are neurotic and/or not genuinely ill.” (These comments appear to arise from pure speculation and opinion. Such comments point to the special pleading of ME/CFS being a ‘malingerer’s charter’ – a professed view of certain proponents of the psychiatric paradigm.)
7. In light of the many real problems of this report, a glowing endorsement by the ME/CFS/borreliosis etc community would be dangerous.
The report has various dangerous flaws. If it is endorsed in its entirety – it could have far-ranging adverse effects on many members of the community.
The Gibson Inquiry/Report has many similarities to the CMO’s report- the usual curate’s egg situation – good in parts. But it is the flaws that form the most potential dangers to the ME/CFS community. People’s safety is at stake, and here we are faced with possible risks to that safety caused by government intervention, a valid concern of advocates since the beginning of this Inquiry.
There are some fair questions to ask: How damaging will the flawed parts of the Gibson Report be to sufferers themselves? Will we find the positive aspects not followed up because the report actually has no teeth – but the flawed comments adopted to the letter by the psychiatric lobby and their government supporters?
No patient or patient representative has to endorse the report as a whole, even if some of the recommendations / comments are considered good.
Hooper, M. et al. The Mental Health Movement: Persecution of Patients? 2004
Kennedy, A. A SHORT SUMMARY OF THE PSYCHIATRIC PARADIGM OF ME/CFS 2005
Marshall, E. Williams, M. Denigration by Design? A Review, with References, of the Role of Dr (now Professor) Simon Wessely in the Perception of Myalgic Encephalomyelitis, Volume I: 1987-1996: August 1996 (217 pages); Marshall, E. Williams, M. Denigration by Design? Volume II: 1999 Update: December 1999 (270 pages).
© 2007 Angela Kennedy
[A version of this commentary was originally published on the PWME Yahoo Group and on The ONE CLICK Group in December 2006]