1999 Clinical and Scientific Meeting

Consumer Address
Ted Shaw

In November 1996 an 11 year old girl developed an illness similar to glandular fever. She had elevated temperature, swollen glands, fatigue, headaches and pallor. Her arms were very weak; for example, she wasn't able to lift her arms to shampoo her hair. However, no abnormalities were found in the blood tests ordered by the General Practitioner.

The young lady was living with her divorced mother and 13 year old brother and it's important to understand that the mother and children were a close-knit group - the many family photos throughout the home being just one indication of the loving and supportive relationship that they enjoyed.

During the six-week Christmas holiday of 1996-1997 the young girl rested up and was able to return to the first week of the school year. However, another bout with a virus resulted in more fever, vomiting, abdominal pain, sore throat, swollen glands and nausea. Her local GP diagnosed ME/CFS and did his best to alleviate the symptoms. The girl missed only a few weeks of school but then was struck again six months later in July 1997 with yet another virus. She again had vomiting and diahhorea. She developed severe ear pain, lost her appetite and not surprisingly, cried often during this time. Nine days later, she collapsed and since then has been unable to walk. She could, at times, crawl to the toilet but was unable to make it back to the bed. Her body was like jelly as she was having trouble co-ordinating her movements. At times she would cry uncontrollably from the pain or the frustration of not being strong enough to pick herself up. She also developed a rapid heart beat and was having trouble sleeping.

On July 10 1997 she was taken by ambulance to a large hospital but was sent back a few hours later. Six days later she was again taken to the hospital and this time she was admitted. The doctor said everything appeared fine and could find no reason why she couldn't walk. She was placed under the care of a hospital psychiatrist and it was obvious from the treatment that she received from the psychiatrist and the staff that they were deeply sceptical about her condition, believing strongly that she was suffering from a psychiatric disorder.

The young lady was expected to do schooling and physiotherapy and go on outings in her wheelchair. There was constant pressure to increase her activity level and cut back on her rest time. Needless to say, the lack of understanding was confusing and very hurtful to her.

During the next six months she spent time at both her home and in hospital. The time at home was marked by slow improvement which contrasted sharply with the deterioration brought about by the enforced activity during her stay in hospital.

Finally, when the psychiatrist attempted to force her into a full week's schooling with no rest at lunch or after school, the young lady lost so much ground that her mother took her home and tried to find another doctor.

Frustrated at having his treatment thwarted, the psychiatrist activated the SCAN team - which is a group within the Department of Family Services. SCAN stands for Suspected Child Abuse and Neglect. They interviewed the mother and said that the girl would possibly be forcibly removed from the home and taken back to the hospital.

Unfortunately, the condition of the girl deteriorated. In desperation, her mother took her to a different hospital hoping that they would provide more appropriate care for her daughter.

Regretfully, this was akin to moving from the frying pan into the fire. After spending ten days in the medical ward, the young lady was shifted into the psychiatric ward. The psychiatrist at this hospital introduced himself by coming into the room, opening the blinds to let in the bright sunlight, putting her bed straight up and stating that he was going to refer to her as the "wah wah baby" every time she cried.

The girl has now been in this hospital for six months. During that time, the staff have occasionally provoked and taunted her, making light of her distress, assuming that the girl's inability to be more active has been an attempt to be manipulative. The psychiatrist has reactivated the SCAN team and the child has been removed from the custody of her mother and placed into the care of the Department of Family Services. They are seeking a foster home for the child whenever she is released from hospital.

The report by the hospital psychiatrist states (I've substituted "Kylie" for the child's real name):

"At this time [the time of hospital admission] Kylie was resisting any efforts to assist her in mobilisation, was complaining of photophobia and general muscle weakness. As well, she was refusing to take adequate food and fluid. As her mother was in complete disagreement with medical treatment as prescribed by the doctor, I regulated her under the provision of the Mental Health Act. Kylie was then transferred to the Adolescent Mental Health Unit. It should be noted that no overt physical cause could be found for her current physical status. However, there is sufficient evidence to indicate the following diagnosis:

  1. Conversion disorder [an emotional illness expressing itself as a physical symptom]
  2. Panic disorder with agoraphobia
  3. School refusal/separation anxiety
  4. Somatisation disorder"

Later in the report, the psychiatrist stated, "her fatigue waxes and wanes, related to activities she dislikes or likes. Extensive physical evaluation including repeating testing as those done at the [previous] hospital have revealed no objective findings to definitely diagnose a physical illness"[The mother] stated she did not agree with my current diagnosis (note: I am not precluding Chronic Fatigue Syndrome but treatment and management would essentially be the same i.e. gradual exercise program)."

In a conversation with the mother, the psychiatrist said that the Australian CFS guidelines have stated that the girl is most likely suffering from somatisation disorder.

The mother, of course, has fought as hard as she could to obtain appropriate medical care, but this has been interpreted as obstructionism by the psychiatrist and he has been able to have the child taken from her. One lesson learned from this is that in a hearing consisting of a judge, the Department of Family Services and the psychiatrist, the wishes of the parent(s) have very little influence. We desperately need qualified people who are willing to testify on behalf of these children. This is not, of course, a problem confined to one city. It is happening in every major city in Australia as well as in the US and the UK. It means that every parent of a severely ill child with ME/CFS has a diabolical problem - one that no parent should have to face. The very act of seeking help for their child could prove catastrophic for the family. It's been this highly inappropriate treatment of children that prompted the Public Interest Advocacy Centre to assist in the formation of the Alison Hunter Memorial Foundation.

It's obvious now that the Australian Clinical Practice Guidelines[1], which promotes CBT and graded exercise as the recommended treatments, has assisted this approach. And, unfortunately, it looks increasingly likely that the British Government will produce a similar set of guidelines.

Of course, in the meantime, psychiatrists are continuing to maintain that ME/CFS is primarily a psychiatric illness. Dr Issie Pilowsky, a prominent Adelaide psychiatrist, has just written a book[2] which describes ME/CFS as an example of "abnormal illness behaviour" and child psychiarist Kenneth Nunn, at the Royal Alexandra Children's Hospital in Sydney, has come up with his own term for children with chronic fatigue syndrome. He calls it "pervasive refusal syndrome." In an article in the Sydney Herald-Sun[3], Dr Nunn said of these children, "The characteristic features are a determined refusal to eat, talk, drink, walk or co-operate with activities to rehabilitate them. They go into a total shutdown situation, they look dreadful and their family feels helpless...Children affected by the condition are often wilful, angry or frightened and some demonstrate depression, anxiety or phobic responses." He goes on to say that in the past, "It was probably called other things, perhaps anorexia nervosa or chronic fatigue." In regard to the parents, he said, "So what we have is the parent being very over - protective and the child developing a whole lot of ways of not co-operating...What we have to ask these parents to do is to pull back their care. In a funny sort of way they have to be cruel to be kind." Dr Nunn stated that the treatment involved admitting the child to hospital and restricting parents to visiting only a few times a week. He added that the children are exercised in a hydrotherapy pool to prevent further deterioration of their condition.

Another diagnosis often made in these cases involving children is Munchausen Syndrome By Proxy. Unlike the other diagnoses, this one is directed at the parents, usually the mother, accusing her of purposefully making the child sick in order to gain attention for herself. This is another of those recently invented psychological diagnoses that is in reality extremely rare but the diagnosis is becoming more frequent as it has proved very useful to psychiatrists when attempting to take custody of a child away from a parent. A group has formed in the U.S. called "Mothers Against Munchausen Accusation" consisting of parents whose children have illnesses which are not easily diagnosed, like ME/CFS, and who have had their children taken from their custody by psychiatrists. There are now lawyers in the U.S. who have taken up the cause of these parents and who can serve as expert witnesses in court hearings. A recent book, "Disordered Mother or Disordered Diagnosis?"[4] by two professors at the State University of New York, David Allison and Mark Roberts, has exposed the twisted and circular reasoning behind the use of the diagnosis and compare it to the accuser's power in the prosecution of witches in earlier times. A journalist in the U.K., Brian Morgan, has investigated numerous cases of Munchausen by Proxy and found that the huge majority were false. In a recent article entitled, "Munchausen Syndrome by Proxy, A Study in Secrecy", he is critical of the media for not taking up the cause of these parents, saying, "...women are now in prison - as well as having had their children taken away - as a result of these controversial MSBP diagnoses. All the more reason for the press to be taking a close interest in the risk of injustice being done."

Another psychiatrist whose publications are important is Dr Ian Hickie, the psychiatrist responsible for much of the wording in the Draft Guidelines.

Dr Hickie published a paper in the journal "Psychological Medicine"[5] in 1997 entitled, "Reviving the diagnosis of neurasthenia". The term neurasthenia has been around for some time and is best defined as "nervous exhaustion". Hickie believes the term should include all the fatigue syndromes - prolonged fatigue, chronic fatigue and chronic fatigue syndrome, stating that, "Essentially, the differences between these syndromes reflect variations in duration criteria rather than symptom constructs." The current DSM-IV, the bible of psychiatric disorders published by the American Psychiatric Association, now includes fatigue within another category - undifferinatiated somatoform disorders. In his paper, Hickie argues strongly that fatigue disorders, including ME/CFS, should have their own specific category in the psychiatric classification systems. He laments the fact that most of the psychiatric categories are formed around depression and anxiety and believes that fatigue represents an independent psychiatric condition worthy of its own classification, preferably under the term neurasthenia. In recommending treatment, Hickie suggests the use of cognitive behavioural therapy, sleep hygiene and physical rehabilitation (graded exercise). And it appears that Hickie has support from other quarters in his effort to revive the term neurasthenia.

In his book "The Illness Narratives"[6], Dr Arthur Kleinman, a medical doctor, psychiatrist and anthropologist at Harvard University includes a chapter called Neurasthenia: Weakness and exhaustion in the U.S. and China." Kleinman has been an important background player in ME/CFS, participating in the seminal 1992 CIBA conference in London. Indeed he co-authored the book on the conference with Stephen Straus. The Australian researchers Andrew Lloyd, Denis Wakefield and Ian Hickie attended the conference and it is from this point that their research changed direction from the organic aspects of the illness to the psychiatric.

In "The Illness Narratives", Kleinman describes the case history of a lady in New York who never recovered from a severe case of mononucleosis and who has what most doctors would call ME or chronic fatigue syndrome. He ascribes all her symptoms to psychiatric causes such as depression and anxiety, suggests that she is a classic case of neurasthenia and recommends psychotherapy as the best treatment.

The British psychiatrist Dr Simon Wessely, who has spent the last 10 years attempting to portray ME/CFS as a psychiatric illness, has been suggesting the use of the term neurasthenia for years. In a 1993 paper he said, "The nineteenth century term neurasthenia remains in the Mental and Behavioral Disorders chapter in the International Classification of Diseases (ICD 10) under Other Neurotic Disorders...Neurasthenia would readily suffice for M.E."[7]

It appears that Professor Kleinman and Simon Wessely, as well as Ian Hickie, are keen to redefine ME/CFS as neurasthenia.

I don't think I need to spell out the enormous disadvantages to us if ME/CFS, under the guise of neurasthenia, were to be formally included as a psychiatric condition in a revised edition of the DSM. I don't believe this is at all unlikely, especially if the stage is set by the Australian and British governments publishing clinical practice guidelines recommending CBT and graded exercise. Another worrying aspect of this is the ease with which a group of insiders in the American Psychiatric Association can create new categories of mental disorders, often with little scientific justification, a process which has been documented by Professors Herb Kutchins and Stuart Kirk in their 1997 book on the creation of the DSM entitled "Making Us Crazy"[8].

In addition, there is another aspect of Ian Hickie's work that is going to make life more difficult. But first, a little background.

A major goal of the American Psychiatric Association is to encourage an increasing role in medicine for psychiatrists. The APA has been hugely successful in its efforts. For example, the DSM, which in 1968 was a small, spiral notebook of less than 150 pages selling for $3.50 is now over 900 pages, defines more than 300 psychiatric disorders, sells for $55.00 and is translated into several languages.

In 1994, in an effort to enlist the services of the general practitioners in catching those people with mental disorders who were slipping through the net, Dr Robert Spitzer and a group of other prominent psychiatrists who are responsible for creating the DSM series, published a 26 item checklist called "PRIME -MD"[9]. The idea of the checklist was that it be given to a doctor's patients prior to the consulation so that by doing an eight-minute check of the patient's answers to the questions in the checklist, the doctor could quickly identify psychiatric disorders. The GP could then either prescribe appropriate medication or refer the patient to a psychiatrist. Pfizer, one of the largest manufacturers of psychiatric drugs in the U.S., paid for the development of PRIME-MD and holds the copyright to it.

Herb Kutchins and Stuart Kirk say this about the PRIME-MD checklist: "Pfizer has already paid for the training, at symposiums, of more than 6000 primary care doctors in the use of PRIME-MD. As part of the training, in case the physicians miss the obvious point, they hear a lecture on the psychopharmacology...Thus this new checklist, called PRIME-MD, is the Alaskan pipeline for the pharmaceuticals, a method of gaining direct access to an immense new market."

In his paper, "Reviving the diagnosis of neurasthenia", Ian Hickie criticises the PRIME-MD checklist for focusing only on the two dimensional model of anxiety and depression without reference to what he believes is the third dimension of psychiatric disorder: fatigue, or in his terminology, neurasthenia.

To remedy the deficiencies of PRIME-MD, Hickie has co-authored a new psychiatric checklist for general practitioners called THE SPHERE - which stands for, "Somatic and Psychological Health Report"[10] which is now being enthusiatically trialed by GPs in Australia.

There are 36 questions in THE SPHERE checklist, two of which relate to substance abuse. The rest are aimed at detecting psychiatric disorders in the unsuspecting patients who are attending a doctor's surgery for any number of reasons, from a sore throat to a sprained ankle. I'll list the questions to give you an idea of how anyone with ME/CFS would fare. Please bear in mind that answering positively to any of these questions would be considered evidence of a mental disorder.

"Over the past few weeks have you been troubled by:

1. Headaches?
2. Feeling irritable or cranky?
3. Poor memory?
4. Pains in your arms and legs?
5. Feeling nervous or tense?
6. Muscle pain after activity?
7. Waking up tired?
8. Rapidly changing moods?
9. Fainting spells?
10. Nausea?
11. Arms and legs feeling heavy?
12. Feeling unhappy & depressed?
13. Gas or bloating?
14. Fevers?
15. Back pain?
16. Needing to sleep longer?
17. Prolonged tiredness after activity?
18. Sore throats?
19. Numb or tingling sensations?
20. Feeling constantly under strain?
21. Joint pain?
22. Weak muscles?
23. Feeling frustrated?
24. Diarrhoea or constipation?
25. Poor sleep?
26. Getting annoyed easily?
27. Everything getting on top of you?
28. Dizziness?
29. Feeling tired after rest or relaxation?
30. Poor concentration?
31. Tired muscles after activity?
32. Feeling lost for words?
33. Losing confidence?
34. Being unable to overcome difficulties?

For anyone with ME/CFS, the first comment the doctor will see after checking the answers will be, "This patient is highly likely to have a psychological disorder."

The company sponsoring the development and educational seminars for THE SPHERE is Bristol Myers-Squibb, the makers of the antidepressant Serzone. In a recent television program, Ray Moynihan, author of "Too Much Medicine"[11], a book which outlines in detail the influence of the pharmaceutical companies on medicine and research, said this about the seminars for THE SPHERE: "While the curriculum for these seminars is independently developed by Professor Hickie and his colleagues, the funding is dominated by one company with a new anti-depressant on the market." Moynihan added, "Professor Hickie is telling doctors that 1 in 3 people who walk into their surgeries are psychologically sick and perhaps 1 in 6 might require a drug treatment or combination of drug treatment and non-drug treatment."

In an interview, Moynihan asked Dr Hickie this: "Without wanting to play down for a minute the legitimate severe mental illness out there, aren't you, by saying things like that, by publicising such huge estimates, helping build a very large market for those selling cures?" Hickie answered, "Yes, I don't see that as a problem."

Moynihan pointed out the striking similarities between the advertising logos of the THE SPHERE questionnaire with the company advertisments for the anti-depressant Serzone - a rather obvious connection but one which Dr Hickie denied in the interview.

To summarise, we are caught in the crossfire of some very powerful organisations: the insurance companies, government health and social security departments and superannuation boards, who want to see ME/CFS classified as a psychiatric problem because it allows them to reduce their costs; the pharmaceutical companies, who want to see the illness viewed as a psychiatric problem because it opens up a wider market for their anti-depressants; and the psychiatrists, who want ME/CFS to be seen as a psychiatric illness because it dramatically increases their marketshare of medical spending.

Consequently, we're staring down the barrel of a number of problems: Firstly, the Australian and British governments institutionalising the concept of ME/CFS as a psychiatric illness by writing clinical practice guidelines recommending CBT and graded exercise as the preferred treatments; secondly, the sanctioning of checklists for general practitioners which classify fatigue and other symptoms of ME/CFS as evidence of a psychiatric condition; and thirdly, the serious possibility that the illness, under the guise of neurasthenia, will be classified as a specific mental disorder in a revision of the DSM.

I've been following this for about 10 years and from what I've seen and heard from friends and support group leaders, the stigma of having ME/CFS has never been worse. Fewer and fewer doctors are willing to consider the illness as anything other than a psychiatric problem. We are hearing of more and more cases of disability payments from government agencies and insurance companies being denied or curtailed and it's clear that more and more children, like the young lady I discussed earlier, will be subjected to inappropriate treatment. And more families will be put at risk.

Despite the fact that numerous diseases such as MS, rheumatoid arthritis, polio, AIDS, stomach ulcers and diabetes, which for years were considered to be of psychiatric origin, have subsequently been shown to have a biological basis, the medical profession appears to be moving to a more psychosomatic view of illness, due in large measure to the publications of psychiatrists like Arthur Kleinman, Ian Hickie, Simon Wessely and the efforts of the American Psychiatric Association.

As you can see, we are facing a difficult uphill battle. In my view there has never been a more important time for people concerned with this illness to make their views known to the doctors and politicians. I also believe it is crucial that the consumer groups do what they can to provide a united, co-ordinated and focused effort. Of course the real solution to this is relevant medical research, and in closing I'd like to mention that the Alison Hunter Memorial Foundation is now collecting funds for this purpose.

References

  1. Draft Clinical Practice Guidelines on the evaluation of prolonged fatigue and the diagnosis and management of chronic fatigue syndrome. The Medical Journal of Australia; December 1997.
  2. "Abnormal Illness Behaviour", I. Pilowsky. John Wiley 1997.
  3. "Child's World Stops" By Anna Patty. Sydney Sun-Herald November 7 1993.
  4. "Disordered Mother or Disordered Diagnosis" David B. Allison and Mark S. Roberts. Analytic Press 1998.
  5. "Reviving the diagnosis of neurasthenia", Editorial. Psychological Medicine 1997; 27: 989- 994.
  6. "The Illness Narratives: Suffering, Healing & the Human Condition" Arthur Kleinman, MD. BasicBooks 1988.
  7. David A, Wessely S. Chronic fatigue, ME, and ICD-10 [Letter]. Lancet 1993; 342: 1247.
  8. "Making Us Crazy: DSM: The Psychiatric Bible and the Creation of Mental Disorders" Herb Kutchins and Stuart Kirk. The Free Press 1997.
  9. "Utility of a New Procedure for Diagnosing Mental Disorders in Primary Care: The PRIME- MD 1000 Study." R. Spitzer et al. Journal of the American Medical Association 1994; 272: 1749-56.
  10. The SPHERE Somatic and Psychological Report, Technical Report TR-97-002 School of Psychiatry, University of NSW and Academic Department of Psychiatry at St George Hospital: 12 April 1997. D. Hadzi-Pavolic, I. Hickie, C. Ricci.
  11. Australian Broadcasting Corporation Television Series based on the book "Too Much Medicine: The business of health and it's risks for you" by Ray Moynihan; ABC Books 1998.

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Phone/Fax +61 2 9958 6285

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