CHILD ABUSE BY THE PSYCHIATRIC SYSTEM -1999 Sydney ME/CFS Conference

June 20, 2004

CHILD ABUSE BY THE PSYCHIATRIC SYSTEM.

http://www.cfsresearch.org/cfs/conferences/5nf.htm

" 1999 Sydney ME/CFS Conference

Patient Information Day Speech

by 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 through-

out 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 Guidelines1,

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 book2 which

describes ME/CFS as an example of " abnormal illness behaviour " and

child psychiarist Nunn, at the Royal andra 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-Sun3, 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

Accuation " 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, and

Mark , 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., , 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

Straus. The Australian researchers 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 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. "

June 20, 2004