Positive Health Online

Skewed is subtitled "Psychiatric hegemony and the manufacture of mental illness in Multiple Chemical Sensitivity, Gulf War Syndrome, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome", and its author, Martin Walker, presents a lot of evidence suggesting that "…a small group of clinicians and academic psychiatrists have attempted over the last two decades to gain control of a number of medically unexplained illnesses."

The process of making a medical diagnosis is essentially one of pattern recognition, in which the doctor steadily eliminates alternative diagnoses until he or she is left with the correct one. This works very well, for the most part, in respect of acute medical or surgical conditions where it is important to initiate the right treatment as quickly as possible. If one has acute appendicitis, it is very important to be assigned to the right box, the one labelled 'acute appendicitis', without delay, so that the appropriate treatment, which is appendectomy, can be carried out efficiently, before the complications of generalized peritonitis and death ensue.

What works well for surgical emergencies becomes much more problematic when dealing with the largely neurological syndromes which are the subject of Skewed. Doctors often tend to regard people with medically unexplained illnesses as 'heartsink' patients, because they are difficult to diagnose, and, when diagnosed, many doctors feel impotent in terms of the treatment options available to them. Walker quotes the conclusion of a 1988 report from the US National Academy of Sciences Institute of Medicine, which states, à propos of Multiple Chemical Sensitivity, that "Many Primary Care physicians lack the training and support needed to diagnose and treat illnesses caused by toxic chemicals in the workplace or the general environment."

Sixteen years later, this is still undoubtedly the situation, and it is patently not helpful to patients. These unexplained medical conditions all differ in significant ways from depressive illnesses, but these differences are not always apparent to doctors, especially to those doctors who still do not recognize them as genuine clinical entities. This is true of all the various syndromes considered by Walker, and indeed there is much overlap between these conditions. Thus, while in many cases of ME a viral trigger can be identified, chemical sensitivity may also be a causative factor. Similarly, organophosphate exposure and Gulf War syndrome both produce clinical manifestations which are very similar to those of ME. There are other conditions, too, which lie outside the range of Skewed, including fibromyalgia and irritable bowel syndrome, where the same situation applies, with a tendency among some doctors to assign patients, not to the right diagnostic box, but, by dint of a lot of pushing and shoving, to force people into a box where they do not really belong, labelled 'psychiatric illness'.

This is the essence of Walker's argument. Having pointed out, correctly, that the report on ME of the joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners was very much slanted towards a psychiatric view of the illness, and that it was subjected to a great deal of justified criticism because of this, he goes on to assert that the Chief Medical Officer's (CMO) Working Group on ME was similarly dominated by psychiatrists. In this I think he goes a little too far. I can speak with some authority on this, having been a member of the Key Group of the CMO's Working Group. In fact, of thirteen members of the Key Group, only two were psychiatrists, plus one other member who was closely aligned with their point of view. When the report of the Working Group was published, it inevitably involved compromises, but these three members refused to endorse the document, and withdrew their names from it. This is hardly consistent with the assertion that the group was psychiatrically dominated, and that their views prevailed. It is a pity that the book contains inaccuracies of this nature, as this can only serve to divert attention from the very important message that he is trying to convey.

Similarly, he states that Professor Pinching, the Deputy Chair of the Working Group, has "…strongly promoted the view that CFS has a psychiatric aetiology." Professor Pinching is in fact a very distinguished immunologist, whose interest in ME derives from his speciality, and which parallels his other major area of interest, which is AIDS. Dr Charles Shepherd, another member of the group, is similarly criticised because of his association with the Campaign Against Health Fraud, in which Professor Simon Wesseley, who has been very strongly associated with a psychiatric approach to CFS and ME and who for this reason is Walker's particular bête noir, is also involved.

There are indeed certain doctors who have built very successful careers on the basis of promoting the idea that ME, is a psychiatric condition, and that the only acceptable forms of treatment are cognitive behaviour therapy and graded exercise. The world is often more complicated than it appears. Walker states: "The Medical Director of the UK ME Association has published the fact that he continues to receive more adverse reports about Graded Exercise Therapy than any other form of treatment, confirming that many people with ME/CFS are suffering relapses through such programmes." And who was the Medical Director in question? Why, none other than Dr Shepherd!

Walker is on firmer ground in some of the other topics he addresses. He performs a signal service in charting some of the murkier areas of corporate activity, whether these be major industrial corporations seeking to avoid discharging their responsibilities in respect of manufacturing processes which discharge highly toxic chemicals into the environment, or financial services companies seeking to avoid meeting their contractual obligations in respect of health insurance claims, either by refusing to accept the genuine nature of medically unexplained illnesses, or by attempting to impose unproven psychiatric diagnoses and potentially damaging and inappropriate treatments upon claimants.

This is very serious, as there is little that the individual can do in the face of such manifestations of corporate power, and the huge resources that global enterprises can muster in defence of their own interests, in the face of which even governments appear either unable or unwilling to protect their own citizens. It is clearly a very useful cop-out for such organisations to assert that those who find themselves locked in disputes with them are psychiatrically ill. This not only undermines the basis of claims to be suffering from genuine illnesses, it also undermines the credibility of such claimants as witnesses.

There are some unholy alliances here, and Walker cites the example of Elaine Showalter, whose post-modern analysis draws the analogy between what she regards as factitious illness such as ME and, for example, abduction by aliens! Conventional wisdom would have it that one has to take her views seriously, and dare not criticise them, because she is a distinguished professor of English from Princeton, even when she is patently talking utter rubbish and clearly has no understanding whatsoever of the scientific method.

Another area considered by Walker is that of Munchausen Sydrome by Proxy (MSP). This syndrome, in which adults are alleged to put their children at risk by imposing upon them the false appearance that they are suffering from illnesses of various types, or by making spurious claims of this nature, undoubtedly does happen, but is extremely rare. However, very large numbers of families in the UK have been traumatised by the witch hunts that have followed the enthusiastic promotion of MSP by its protagonists from the late 1970s onwards. In 1984, I published an article in Public Administration, challenging the whole basis of this, with its unscientific psychiatric labelling, denial of natural justice (because public authorities were, for the most part, able to exercise arbitrary powers, for example to take children into care and even to have them adopted, without going anywhere near a court and without the parents having party status in legal proceedings), and abuse of process. However, MSP had such a head of steam that any contrary voices were completely ignored, and it is only now, following some very high profile cases in the Court of Appeal in respect of people who had wrongly convicted of causing the deaths of their children, that this bubble is at last beginning to burst.

As Walker rightly points out, MSP has been an ideal weapon to attack the parents of children with ME. Right at the outset, he refers to the specific case of Ean Proctor, from the Isle of Man, which was a case of exactly this type. He details accurately the early stages of the story, including initial consideration by Tynwald, the island's Parliament, a supportive report by a Select Committee to which Tynwald referred the matter, and the appointment of a Commission of Inquiry, the report of which (the McManus Report) reversed the findings of the Select Committee, leading to adverse publicity for the family, and their vilification and persecution in the local press, and throughout this small island community. However, this was not the end of the story. After this, my wife and I examined the facts and concluded that the Commission had wrongly advised itself on a number of important matters of both fact and interpretation. We agreed to visit the Isle of Man in 1992 at the request of the local ME Association, and following this visit, we produced the Alternative Commission of Inquiry Report. This attracted a great deal of publicity on the island, and brought to an end the discrimination the family had suffered. Subsequently, the McManus Report (Part 2) was published, which completely reversed the findings of Part 1, and produced a series of recommendations for improving services for children on the island which were exactly in line with ours in the Alternative Report, though, as one might expect in these circumstances, nothing at all was done to indemnify the family for the trauma they had so unjustly suffered, and the losses they had sustained.

The issues raised by Walker are important ones. Disempowerment is a major problem for people with unexplained medical conditions, and legitimization a major issue. Neither are helped by psychiatric labelling which, while involving long words and hence sounding scientific, often involves nothing more than speculation. I have been involved for many years in the business of trying to educate colleagues, other professionals, the political establishment and the general public about the reality of ME. I bring a substantial degree of continuity to the process, having been the only person who was a member both of the National Task Force on ME, in the early 1990s, and the Key Group of the CMO's Working Group. In that time, I have seen attitudes change markedly. When I started down this road, perhaps 1% of doctors believed in the existence of ME as a genuine physical disease entity. Now, a clear majority of doctors accept this. There is still a long way to go, but the government has at last made some real money (£8.5 million) available to develop services for people with ME. There is clearly anxiety about this, because the services which are being funded remain very patchy, and embrace a variety of different approaches to care, which in some locations involve psychiatrists as well as doctors practising other specialities. On the plus side, the opportunity now exists for a systematic comparative evaluation of a wide range of treatment approaches, which should rapidly enhance our knowledge of which interventions are most effective in helping people with ME.

All this should give people with ME hope for the future. It must be acknowledged, though, that for the present, the situation remains unsatisfactory in many parts of the country. This is only a start, and for people with other medically unexplained conditions it is not even that. I do feel concern that in some instances Walker has tended to see what is a very complex set of issues is somewhat simplistic, black and white terms, and that may cause some people to switch off before fully comprehending the seriousness of the questions he is raising. Nevertheless, the message of this important book is compelling and is not heeded at our peril.

About the Reviewer

Dr Derek Pheby is an epidemiologist, and Director of the Unit of Applied Epidemiology at the University of the West of England, Bristol. He has a long-term interest in ME, and was a member both of the National Task Force on ME and of the Key Group of the Chief Medical Officer's Working Group on CFS/ME. His unit has an active programme of research into chronic fatigue syndrome and ME. Dr Pheby is a member of the Editorial Board of the International Journal of Chronic Fatigue Syndrome. He can be contacted at derek.pheby@uwe.ac.uk