Letters

What do you think is a non-disease?

Pros and cons of medicalisation

Compiling list of non-diseases is medical arrogance

Defining non-diseases to avoid medicalisation is throwing the baby out with the bath water

Labels create legitimacy and produce dependence

Diet, lifestyle, exercise, spirituality, and the search for meaning are ignored at our peril

Summary of responses

Pros and cons of medicalisation

EDITORThe BMJ 's decision to extend participatory democracy to the question of disease is important not so much for the results but because it happened at all.¹

To a previous generation the idea of asking consumers to decide on these matters would have been incomprehensible. Doctors decided which conditions were legitimate and which should be consigned to the outer darkness. In the debate about the nature of neurasthenia at the end of the 19th century all protagonists were in the medical profession and their debates were published in journals. The views of a few well educated and well heeled patients may be inferred from diaries and fiction, but their voices were largely unheard and unheeded.

Now of course medical authority is in retreat everywhere and the final arbiter of "non-disease" is fast becoming the patient.

All this is well and good, so why the outrage of so many respondents?¹ I suspect it comes from a failure to recognise the different concepts of illness and disease.

Taking chronic fatigue syndrome as an example from the debate,¹ few could now question that it is indeed an illness. It has a nosological status and is clearly associated with suffering, ill health, and disability. The patient's voice must be and is paramount. But is it a diseasethat is, has a specific pathological process been identified to account for the above? Chronic fatigue syndrome is not yet a disease because no unambiguous evidence has yet been presented that has commanded widespread acceptance by the scientific community, which remains the arbiter.

Of course, the syndrome may plausibly make the transition from illness to disease like many other illnesses have done. Or it may not. The traffic is not entirely one way in which illness entities inevitably receive the stamp of scientific approval, usually after a period of being falsely labelled as psychological. Previously apparently sound entities have lost their disease status under the cold light of scientific scrutiny.

The concept of labelling also generated a lot of heat in this debate. People behave according to the labels that are ascribed to them, a process seen as largely negative. Some respondents rightly echo this, citing examples in which the act of labelling distress as something medical (pathological) carries with it a host of adverse consequences.^1 w1-w8

But more commonly the act of giving a name to symptoms and disability brings relief.^w9-15 The acknowledgement by the medical profession that a patient's condition has a name and is a legitimate illness is immensely reassuring and enabling. It also ends the battle of diagnosis"If you have to prove you are ill you can't get well."^w16

Giving a condition a name is an intervention in itself with costs and benefits.^w17 Crudely handled, medicalisation can perpetuate disability and exclusion. But used constructively and appropriately it is the first step towards recovery.

Simon Wessely, professor. 
Department of Psychological Medicine, Guy's, King's College, and St Thomas's School of Medicine and Institute of Psychiatry, London SE5 8AF s.wessely{at}iop.kcl.ac.uk

   References w1-17 are available on bmj.com

Compiling list of non-diseases is medical arrogance

EDITORThe arrogance of the concept of compiling a list of non-diseases is breathtaking.¹

Had this list been compiled 50 years ago, which illnesses would have been listed? Multiple sclerosis, Crohn's disease, hypothyroidism? The medical community's inability to learn from past mistakesnamely, to acknowledge that most patients are honestly relating their symptoms and sincerely wish to recoverwill doom generations of innocent people to the kind of humiliation and insult this ballot encapsulates.

Unable to perceive their own ignorance, these commentators will enjoy a brief moment in the spotlight sneering at the proponents of non-diseases, utterly failing to advance medical science.

And you wonder why the benighted sufferers of their non-diseases resort to alternative practitioners.

Anelie J Walsh, student. 
122 Gow Street, Padstow, New South Wales 2211, Australia anelie{at}mac.com

Defining non-diseases to avoid medicalisation is throwing the baby out with the bath water

EDITORHaving read the list of non-diseases I am not sure I fully understand the rationale behind it.¹ However, as a person who experiences chronic fatigue syndrome, fibromyalgia, obesity, and several other conditions included on the list I have a vested interest in the outcome.

I agree that the medicalisation of certain diseases, illnesses, and conditions has impacted negatively on those who experience them. I also accept that it might be better not to treat certain conditions in certain circumstances. This is true of both diseases and non-diseases and I see no automatic correlation between disease and treatment and non-disease and no treatment.

Few people would probably argue that having big ears is a disease, so its inclusion as a non-disease poses few problems. This does not mean, however, that it automatically requires no treatment. That decision surely depends on various factors, including the extent to which the condition impinges on the life of the person experiencing it. Conversely, cancer is (arguably) a disease that often benefits from highly aggressive treatment, but in some cases less aggressive treatment or no treatment at all might be better.

Moreover, despite the best efforts of certain egotistical members of the medical profession to convince us that they have all the answers, many conditions are not understood enough to be able to label them disease or non-disease. Perhaps a condition should be labelled a non-disease rather than erroneously be called a disease. I think, however, that any rush to label a condition of unknown origin a non-disease could have negative effects.

Historically, conditions that have no known origin have attracted labels such as psychosomatic and psychological, stigmatising those experiencing them as lacking or weak at best and mad at worst and defining treatment. For example, before the organic origin of multiple sclerosis was discovered patients were often labelled as having psychological difficulties and treated inappropriately. This is still the case with conditions such as chronic fatigue syndrome and myalgic encephalitis.

Labelling conditions as non-diseases could also have more far reaching consequences. In the United Kingdom a person's entitlement to receive state and other benefits when unable to work because of ill health is largely dependent on the recognition of a pre-existing condition. Clearly, the label of non-disease might well negatively affect the amount of benefit paid.

The classification of certain conditions as non-diseases to avoid the perils of medicalisation seems to be a case of throwing the baby out with the bath water. A holistic social approach to illness and disability that treats each person individually is far better than seeking a cover all solution replacing one label with another.

Dianna Dunbar, graduate in health and community studies. 
Yeovil BA21 3SB uk_leokat{at}yahoo.com

Labels create legitimacy and produce dependence

EDITORThe last decade has seen the development of an ever increasing role of patients as the primary decision maker in the management of illness. This approach has been encouraged by advocacy groups, the popular news media, and doctors who cater to the non-critical thinking population.

For those not trained to reign in their innate belief engines, the association of symptoms with a disease is encouraged only by the production of labels. A symptom complex described by physicians as fibromyalgia, which is nothing more than a descriptive term for pain in muscles and fibrous tissue, now has the legitimacy of a disease as opposed to a panoply of symptoms. The near mass hysteria displayed by like-minded believers when these labels are challenged adds to the dependency on the labels as being legitimate.

Having evolved a mind that is designed for pattern recognition, resists changing beliefs in the face of new information, and encourages the production of cause and effect relations in the presence of associative phenomena, some human beings will always need labels to support their continued suffering in an unfair world. These non-diseases clearly contribute to the development of co-dependent suffering.

Kevin C Murphy, medical oncologist. 
BC Cancer Agency/Fraser Valley, 13750 96th Avenue, Surrey, British Columbia, Canada V3V 1Z2 kmurphy{at}bccancer.bc.ca

Diet, lifestyle, exercise, spirituality, and the search for meaning are ignored at our peril

EDITORMuch evidence supports the organic nature of many of the diseases mentioned in the list of non-diseases, particularly for myalgic encephalitis-chronic fatigue syndrome, fibromyalgia, and multiple chemical sensitivity.¹ Evidence also supports shared symptoms in these and other medically puzzling and taxing disorders such as Gulf war syndrome and irritable bowel syndrome.

Linus Pauling argued that all diseases have a molecular basis. The validity of this statement is substantiated by many who advocate the existence of non-diseases. Yet in prescribing antidepressants, antiepileptic drugs, and agonists and antagonists of the major biogenic amines and neurotransmitters, they are changing the underlying physicochemical and physiological properties of organs and body systems, particularly the brain.

Illich has written perceptively about the medicalisation of life and its origins and consequences. Medical ignorance and arrogance dominated by rationalism seeks explanations of puzzling signs and symptoms and ends up creating spurious diseases and disorders that put the blame on patients or their caring family and friends.

Numerous examples of, and articles about, non-diseases were published in the medical peer reviewed literature by eminent people of their day. They were wrong. The advancement of scientific and medical knowledge has now identified the underlying biochemical and physiological disorders of, for example, diabetes, parkinsonism, and multiple sclerosis. The sufferings of patients imposed by these arrogant and rigid attitudes demean both patients and doctors and create mistrust.

The consequence of the triumph of such attitudes is now seen in the abandonment of any responsibility for one's own health. Lifestyles, however destructive, are pursued in the belief that medicine will somehow provide an answer. The drug industry and much of modern medicine seek new agents to modify or offset the consequences of excessesfor example, new anti-obesity agents for the epidemic of obesity and maturity onset diabetes.

The food industry also contributes to modern health problems with the widespread use of pesticides, plant and animal hormones, and genetically modified crops. Thus, even eating a healthy diet leads to an increasing burden of new man-made toxins, many of which have not been toxicologically assessed.

Diet, lifestyle, exercise, spirituality, and the search for meaning are all parts of our human condition. We ignore them at our peril.

What is required is a change of heart and mind leading to a change of practice that embraces human values of mutual respect, careful listening, and use of modern drugs effectively and not randomly. It also needs to recognise the possible benefits of alternative treatments in constructive and critical ways, examine diet and nutrition, and allow patients to decide how they live and die with their illness.

Let's return to being fully human.

Malcolm Hooper, emeritus professor of medicinal chemistry. 
University of Sunderland, Sunderland SR2 7EE malcolm.hooper{at}virgin.net

Summary of responses

EDITORThere were some who thought the exercise a joke, and in bad taste at that.¹ Others couldn't see the point and complained that deciding what was, or was not, a non-disease was unworthy of a serious medical journal and did little more than toy with semantics.

And some thought that the process trivialised genuine suffering and was an excuse for airing prejudice and ignorance. The stigma of having a non-disease could only make that suffering worse. But aside from the long list of possible contendersfrom burnout to fibromyalgia, and high cholesterolthe issue provoked vigorous debate about the purpose of medicine and what some saw as a narrow understanding of illness and the limited scientific paradigm.

Respondents struggled with definitions of their own, and Kazem Zarrabi, a postdoctoral researcher at the University of Lund, Sweden, suggested that we should look to Darwin for guidance, regarding as disease any condition that interfered with our reproductive success and compromised our "inclusive fitness."

Medicalising natural processes, such as normal childbirth, the menopause, and bereavement was not a healthy option, countered several correspondents, serving to boost the profits of drug companies.

And much of what we classify as disease is really a byproduct of ageing, suggested Dirk Ulbricht of the Centre Hospitalier, Luxemburg, including osteoporosis, said Iona Collins, specialist registrar in trauma at the John Radcliffe Hospital, Oxford.

But de-medicalising disease could deny those who had them the right to research and treatment, said Alex McLaughlin, a writer from Red Hill in Australia, and they could be dismissed as "somatisers." The nub of the issue, she said, was whether medicine had the capacity and the moral authority to define what is and what isn't disease.

Others suggested that labels helped people cope better, gave them legitimacy, and signalled protected funding and physician time. Chronic fatigue syndrome was frequently suggested as rightfully belonging to the non-disease category, but it was also vigorously defended as having clear physiological changes.

And there were fears that state funding for disease that impaired mobility and the ability to work might be withheld if it were to lose its legitimate label. The UK government's refusal to recognise repetitive strain injury as a disease, suggested Martin Wilson of Glasgow, denied people financial help.

Respondents worried that definitions were founded on shaky ground, guided as they are by constantly changing criteria: (lack of) knowledge, different cultural perspectives, where you lived.

And they were also subject to fads and fashion. A case in point is obesity, which was regarded as a sign of prosperity a century ago, pointed out research professor of chemistry, Joel Kaufmann, from Philadelphia. New Zealand patients' rights campaigner Gurli Bagnall was concerned about the prevalence of attention deficit disorder and the way in which Ritalin (methylphenidate hydrochloride) had been heavily promoted as a suitable treatment for it.

But several people suspected that the proposed list conveniently included many non-diseases for which there was little effective treatment, and even less understanding of their cause.

Public health physician Steve Hajioff commented: "This has been the case for many conditions throughout history . . . Crohn's disease, multiple sclerosis, and coeliac disease are good examples." Others given were asthma and lupus.

Raymond Colliton of Philadelphia pointed out that the purpose of medicine was to reduce human suffering, irrespective of the labels given. And Elmer Fudd agreed that "disease is a very slippery concept," but added "So is medicine."

Caroline White, freelance medical journalist. 
London