AHMF: MP: Phillips, Psych in CFS debate

The place of Psychiatry in the CFS Debate—
Prejudice, Power and Pitfalls
Nicole K Phillips MBChB Dip RACOG DPM FRANZCP
Armadale, Victoria, Australia

As a psychiatrist and medical editor of Emerge, the quarterly journal of the Victorian ME/CFS Society, I am continually confronted by psychiatric literature and conference presentations by psychiatrists “interested in” CFS. My profession has had a shameful presence in the CFS debate, right back from its involvement in reclassifying the obvious physical illness seen in the Royal Free Disease as “hysteria” up until the current time. Over the last few years in Australia, there have been some powerful voices in psychiatry propped up by a huge amount of research funds and grants. These people are regularly publishing, in reputable medical journals, research which implies CFS is “neurasthenia” or “somatisation.” My presentation will focus on some of this work and discuss its flaws. How psychiatry can become more involved in a positive way will also be discussed.

This paper will discuss the concepts of neurasthenia and somatisation and how these and other psychiatric terms have infiltrated the psychiatric literature on CFS. A selection of publications from the Australian psychiatric literature will be presented to show these trends, followed by a brief discussion on cognitive behaviour therapy and graded exercise therapy. The paper will conclude with the author’s ideas as to the reasons for psychiatry taking this path and with an idealistic view of how psychiatry could be involved.

Neurasthenia
The New York neurologist, George Beard, is widely credited with introducing the term neurasthenia in 1869. However, the psychiatrist Van Deusen has an equal claim to the authorship of neurasthenia, as he introduced the term in The American Journal of Insanity in the same year. The confrontation between neurology and psychiatry at that time continues to this very day, but at that time it was Beard, the neurologist, who became most credited with the “discovery” of neurasthenia1,2. Neurasthenia has been defined as “a disease of the nervous system, without organic lesion, which may attack any or all parts of the system, and characterised by enfeeblement of the nervous force, which may have all degrees of severity, from slight loosening of these forces down to profound and general prostration”3. Over all, at that time, it was considered a disease of excessive fatigability, and it was considered that the fatigability could affect physical and mental function equally. Even at that time it was noted that there was a significant discrepancy between physical disability and physical examination, with sufferers typically looking quite normal. By the turn of the century, neurasthenia was considered a “fashionable disease”.

It is interesting to witness the changing ideas over time regarding the aetiology of neurasthenia. Initially the prevailing neurological paradigm was the “reflex hypothesis”, in which excessive irritation of the nervous system was considered to cause exhaustion of peripheral nerves. The next step was that neurasthenia was considered to have a central origin in which there was exhaustion of supply of energy in the central nervous system and this was a consequence of “cortical weakness” or “cortical irritability”. This was thought to be caused by
problems with blood supply to the brain, overwork, or from toxic, metabolic or infective causes.

As time moved on, social theories overtook neurological ones and it was thought to be a condition of modern civilisation, primarily from overwork. This also incorporated the changing status of women at that time and it was thought that the female nervous system, inherently weaker than the male, may give way as a result of excessive occupational demands. Due to the failure of the organic paradigm and other social class issues, such as the illness now being documented also in lower classes (while it was previously considered a disease of upper classes), the psychogenic paradigm became the dominant one by the early 1900’s. Neurasthenia had become a psychological illness with a stigma attached.

By the 1920s the concept of neurasthenia started to dissolve, as it was replaced by psychiatric diagnoses, such as depression. This move then towards the psychological had a number of underlying reasons, including the neuropathological basis of the condition being discredited, the “rest cure”, which often involved many months of hibernation in a spa, being seen as either unsuccessful or efficacious due to psychological reasons, changes in social class distribution and the emergence of the new profession of psychiatry.

Looking at the concept of modern neurasthenia, in the United States and United Kingdom formal interest had disappeared by 1960 and it was dropped from the DSM-III. The term has remained in the International Classification of Diseases (ICD-10). The diagnosis is commonly made in some parts of Europe and also made in Asia, being seen as a physical illness without stigma. In Japan it tends to be used instead of a psychiatric diagnosis, as Japanese society has a particular abhorrence of serious mental illness.

It is clear that the historical debates about organic versus psychogenic paradigms quite clearly parallel the current debate in the chronic fatigue syndrome (CFS) literature. In the last few years the term neurasthenia has made its way into the CFS literature, particularly in the psychiatric press4. In such papers, quotes such as the following have been seen: “Whether or not it is worthwhile to distinguish between neurasthenia and dysthymic disorders, must depend on the demonstration that such syndromes have different social covariates or pursue a different course or have particular responses to treatment. Until such studies are forthcoming the distinction seems especially insubstantial”.

The author strongly believes that reviving the term neurasthenia and using it in the CFS literature is counterproductive, due to the historical connotations of this term, particularly as it did finish up as a psychological diagnosis, despite the fact that the organic versus psychological debate was never really resolved.

Somatisation
An even more concerning trend has been to use the term somatisation in the CFS literature. Somatisation can be defined as “a process by which patients experience physical symptoms, most probably the result of psychological distress, but are attributed by the patient to a physical cause”. Somatisation is considered the commonest way for a psychiatric disorder to present and somatoform disorders are characterised by physical symptoms that resemble medical disease, but that exhibit no organic pathology or known pathophysiological mechanism5.

It can be seen that these definitions can easily be brought into the area of CFS. Firstly, if the doctor’s ideas about the illness differ from the patient’s, they already fulfill the first definition of somatisation, because if the patient with CFS is attributing his or her symptoms to a physical cause and the doctor is attributing them to a psychological one, the first definition is fulfilled. Looking at the second definition in which there are physical symptoms resembling medical disease, but no organic pathology or known pathophysiological mechanism, CFS can again be readily fitted in to this definition, as can many other illnesses which still defy our current level of medical knowledge. The author strongly concludes that somatisation is a term that must not be used under any circumstances in discussing CFS.

A SELECTION OF PAPERS

1. CFS and Dieting Disorders: Diagnosis and Management Problems Griffiths A, Beaumont P, Moore G, Touyz S. Australian and New Zealand Journal of Psychiatry; 30:834-838, 1996
This article describes three cases of young people with an obvious diagnosis of CFS, who the authors “successfully” re-diagnose with eating disorders. For example—Case 1 Linda is a 13-year-old girl with glandular fever diagnosed with a positive EBV virus IgM and typical symptoms of CFS. She is described as having “12-months of extreme tiredness, exhaustion, myalgia, poor concentration, short-term memory, intermittent feelings of depression, nausea when eating, loss of appetite”. “Unsuccessful treatment for chronic fatigue syndrome” is described. The authors give a “diagnosis of anorexia nervosa, but neither she nor her parents would accept it”. They “did not believe she had anorexia nervosa, preferring to have a physical disease diagnosis”. The authors state “Denial is a well-known psychological concomitant of anorexia nervosa and if the patient believes she may have a disease diagnosis, such as CFS, denial is inadvertently re-enforced”. They discuss “secondary gains with her CFS” and conclude by stating “CFS and dieting disorders have several features in common. They mostly affect young perfectionist females who are high achievers with vulnerable personalities”. This author expresses extreme concern about this paper and other papers which re-diagnose very ill CFS sufferers as suffering with eating disorders.

2. Chronic fatigue syndrome and Australian psychiatry: lessons from the UK experience Couper J. Australian and New Zealand Journal of Psychiatry; 34:762-769, 2000
Jeremy Couper is a Melbourne psychiatrist with “an interest” in CFS. He talks about the UK experience and discusses the fact that membership of a CFS society correlates with a poorer outcome. He discusses, under the title of the Australian experience, the first international conference of CFS in 1998, in which there was “a program which focused almost exclusively on research into organic aetiologies”. He talks about a pioneering study of “cognitive-behavioural therapy”, produced by the Sydney researchers Lloyd, Hickie et al, and goes on to say “CFS can be seen as a potential Trojan horse for psychiatry, enabling psychiatry to perform a broader role in medical research and a more truly integrated role in the health system”. The implications of psychiatry needing to re-medicalise itself will be discussed later.

3. Chronic fatigue syndrome in adults Couper J. Australian Doctor, August 2001
The following are some quotations from this paper:
• “Patients are often encouraged to be suspicious of the medical profession’s attitude to CFS by self help- group literature.”
• “the ideas CFS patients have about the cause of their symptoms can be seen as the patient’s attempt to understand their illness in terms of whatever is at the cutting edge of the scientific research of the day.”
• “the more somatic symptoms a patient has, the greater the likelihood of a psychiatric disorder.”
• “the very distinction between CFS, neurasthenia and depression has been questioned.”
• “hyperventilation, anxiety and panic disorder produce feelings of fatigue and increased subjective effort.”
• “somatoform disorders … Whether CFS belongs in this category largely depends on the doctor’s perspective.”
• “robust research data support the use of antidepressants.”

4. The School of Psychiatry, University of NSW
Led by Ian Hickie—has published a lot of contradictory papers in psychiatric literature over the last few years. In the late 1990’s they talk about the “Immunological bases for post-infective fatigue states” “role of cytokines” and the fact that “resolution of fatigue is associated with improvement in cell-mediated immunity”6, but by 2001 they had published a study which stated that 32% of people diagnosed with CFS had features of a somatoform illness7.

5. Sphere—A National Depression Project Medical Journal of Australia; 175 Supplement, 2001
This has been a major concern, with the New South Wales researchers being largely behind the project. Using a 12-item questionnaire that they devised and called Sphere (Somatic and Psychological Health Report) they found that 49% of patients attending general practitioners have “mental disorders”. The Sphere has 6 items relating to psychiatric symptoms:
1. Feeling nervous/tense
2. Feeling unhappy/depressed
3. Feeling constantly under strain
4. Everything getting on top of you
5. Losing confidence
6. Being unable to overcome difficulties (Psych-6 items),
and has 6 items relating to somatic symptoms:
1. Muscle pain after activity
2. Needing to sleep longer
3. Prolonged tiredness after activity
4. Poor sleep
5. Poor concentration
6. Tired muscles after activity (Soma-6 items)
If a person has a score of 2 or more on the Psych-6 and/or 3 or more on the Soma-6, he or she is defined as having a mental disorder. It is quite clear to see that a patient with CFS, or glandular fever or a number of other medical illnesses for that matter, can very easily be defined as being a “mental case”. This project has large implications for anti-depressant prescribing in general practice as the project concludes with statements relating to the under-prescribing of antidepressants for mental disorders.

6. The Second Draft Guidelines Royal Australasian College of Physicians 2001
The draft guidelines initially published in 1998 have been an attempt to summarise the current working knowledge on CFS. Unfortunately throughout this paper the influence of psychiatrists is quite clear.
a) “What other terms are commonly used for CFS”
Neurasthenia is mentioned and “its specific relationship with CFS and common psychological disorders are not resolved.”
b) Does chronic fatigue overlap with other illnesses?
“Perhaps the most difficult diagnostic uncertainty between CFS and psychological illness is in relation to somatoform disorders.”
“As the causes of CFS are “unexplained”, there is obvious overlap between the diagnostic criteria for the somatoform disorders and CFS”.
c) What is known about the pathophysiology of CFS?
There are 5 leading hypotheses mentioned, 2 of which involve psychiatric aetiological theories.
1. A neuropsychiatric disorder with clinical and neurobiological aspects suggesting a link to depressive disorder.
2. A psychologically determined response to infection or other stimuli occurring in “vulnerable” individuals.

Cognitive-Behaviour Therapy and Graded Exercise Therapy
There have been a number of studies in the medical literature about these 2 “treatments” for CFS8. A number of papers have discussed the “promising results” seen with these 2 “treatments”. The author makes the comment that a number of these studies are methodologically flawed, and it is quite ludicrous to extrapolate that these 2 therapies can be considered a treatment for CFS. The author comments that they should be seen as adjuncts only. She has considerable concern that the number of papers being published about these 2 “treatments” implies that the underlying aetiology must be psychological.

Psychiatry’s Stance—The Reasons
The author believes that there are a number of reasons why psychiatry has tried to “capture” CFS for itself.

1. The name—chronic fatigue syndrome. Because of its non-specificity and because it relies on fatigue as the core feature in the title, “poaching” by any area in medicine is easy. Fatigue is extremely non-specific and is seen in many conditions in psychiatry, in particular depression, anxiety and somatisation. Insidiously, in many papers the word “syndrome” has been dropped and the term chronic fatigue, even more non-specific, used and sequestered by psychiatry. In the author’s opinion chronic fatigue syndrome nowhere near adequately describes this illness and a new name needs to be found, for example, Nightingale’s illness (after Florence Nightingale who supposedly suffered with CFS). In this way it clearly places it outside the reach of psychiatry.

2. There is a strong need for psychiatry to “remedicalise” itself. “Both scientifically and economically there are questions about the survival of psychiatry, hence the need to cling to its status as a “medical science””9. “Born of an alliance between the research o biological psychiatry and the funding of multi-national drug companies, pharmacological interventions (the psychopharmacotherapies) are currently being heavily promoted as primary modalities of treatment”9. Because psychiatry is a low-status specialty, and because research funds are given to those who work in the biological field, it is quite clear that some sections of psychiatry would want to claim fatigue for psychiatry.

3. Continuing on from the points made in 2., money, power and politics play a large role. The funding comes to those researchers working in the biological area. The power comes to those who “discover” new syndromes or treatments and the behind-thescenes politics in all this means that those researchers who get the money, who get the publications, get more money and more power. Economically also, there has been an erosion financially within psychiatry with changes to certain Medicare items, making it much more difficult to see people for extensive psychotherapy.

4. Poorly-designed research abounds in all areas of medicine, but certainly a number of papers published in the last few years, as described earlier in this paper, have been poorly designed with results that are consequently flawed.

5. There has also been a bias in research publishing, with certain journals only choosing to publish papers on CFS that deal with psychological issues, for example, cognitive-behaviour therapy.

6. There is, of course, the problem of coexisting depression, grief and other psychological complications of chronic illness, which can, for many people unfamiliar with this condition, over-shadow the biological component.

7. “Stupid medicine”—this is the term this author uses to describe medical specialists only seeing what they are trained to see, for example a psychiatrist only being able to see depression or a surgeon only seeing something to cut out.

8. Reading narrowly in one’s own specialty is a real problem, because the average clinical psychiatrist will only be reading 1 or 2, if that, journals in his or her own area and is very unlikely to be reading up-to-date research in other medical journals about CFS, therefore getting an extremely biased view.

9. Many clinical psychiatrists will admit to the fact that they have never seen someone with CFS, which means their experience of the condition, when they do have someone in their practice with it, is extremely limited. In many cases, they have, in fact, “seen” CFS in their practice and have mis-diagnosed it as a psychiatric condition.

Psychiatry and CFS—An Optimistic View of the Future
Many researchers, clinicians and patients have a clear view that psychiatry has no place in CFS. This author does not hold that view and believes that psychiatry and psychiatrists can contribute significantly to research and to clinical practice. For psychiatry to have a future in CFS, psychiatrists need to take the time and trouble to educate themselves widely and not just believe what they are reading in peer-reviewed journals. Psychiatrists can provide a supportive, educational and validating environment for patients with CFS as well as advocacy such as at school or in the work place. A psychiatrist can provide relationship and family support, help maintain hope and optimism, use adjunct therapy such as relaxation, meditation and hypnosis, obviously treat co-existing psychiatric illness and use appropriate psychotherapies, for example grief counselling and cognitive-behaviour therapy.

In summary, a significant amount of ill-will towards psychiatry, by those in the CFS area, has been warranted. The author hopes that, in the future, psychiatrists will take the time to educate themselves more widely about CFS and is optimistic that over the next few years, as general medical research moves towards a unifying aetiological hypothesis and hopefully appropriate treatments, that the debate about whether CFS is biological or psychological will fade into oblivion.

1. Beard G. Neurasthenia, or nervous exhaustion. Bost. Med. Sur. J 3:217-221, 1869.
2. Van Deusen E. Observations of a form of nervous prostration (neurasthenia, culminating in insanity). Am. J. Insanity 445-461, 1869.
3. Deale H, Adams S. Neurasthenia in young women. Am. J Obstet 29:190-195, 1894.
4. Reviving the diagnosis of neurasthenia. Hickie I, Hadzi—Pavlovic D, Ricci C. Psychological Medicine 27: 989-994, 1997.
5. Synopsis of Psychiatry. Kaplan H, Sadock B. 5th edition. Williams & Wilkins 1998. Chap 19 p 335.
6. Hickie I et al Australian & New Zealand Journal of Psychiatry 32: 180-186, 1998.
7. Hickie I et al What is CFS? Heterogeneity within an international multicentre study. Australian and New Zealand Journal of Psychiatry 35: 520-527, 2001.
8. Interventions for the treatment and management of chronic fatigue syndrome: a systematic review. Whiting P et al JAMA 286: 1378- 9, 2001.
9. Women Working and Training in Australian Psychiatry. Quadrio C. Book House 2001