PROTECT THE CHILDREN?”
Alison Hunter Memorial Foundation in Australia, was the sole convenor/organiser
of the Third International Clinical and Scientific Conference on Myalgic Encephalopathy/Chronic
Fatigue Syndrome which was held in Sydney in December, 2001.
I received a copy of the video which covered the segment of the Conference
that dealt specifically with children and I was asked to write a report on
will protect the children?" is an apt title and as I watched the video,
I thought of Gordon Thomas’ book "Journey Into Madness - Medical Torture
and the Mind Controllers" in which he said:
I had researched before could have prepared me for the dark
of doctors who set out deliberately to destroy minds and bodies
were trained to heal."
occurred to me (as it has done on other occasions) that some of the doctors
referred to by both of the speakers on the video, are not so very different
from the subjects in Thomas’ book.
cold, hard deliberateness with which the extensive scientific evidence of
the physical nature of ME/CFS is routinely dismissed or ignored, goes beyond
abuse. It speaks of an agenda that is not concerned with patient welfare.
families agonise helplessly over the suffering they are forced to witness,
the sufferers themselves have to deal with the cruel physical and mental consequences
of inappropriate attitudes and treatments for psychiatric disorders that did
not and do not exist.
is hard enough for sick adults to protect themselves against misdiagnoses
and mistreatments, but this video highlighted that where children are concerned,
some are even denied parental protection.
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two speakers were:
Nigel Speight, a UK Paediatrician with 20 years experience in the Paediatric
Department of the University Hospital of North Durham, UK.
A father presented the medical
nightmare which his family and in particular, his daughter who suffers ME,
SECTION - presenter: Nigel Speight (hereafter referred to as NS)
based his observations upon his many years of experience and one of the first
points he made, will hold a certain irony for ME patients and their carers
- some doctors “can’t stand the patient being so ill”.
a result of this intolerance, one of two courses of actions is typically
taken: (1) if possible, the doctor will steer clear of severe cases or (b)
he will embark upon what NS refers to as "furore therapeuticus"
– by which he means, intensive psychiatric "therapy".
“furore therapeuticus” is employed and the rehabilitative measures and psychotropic
drugs succeed only in making the patient worse, doctors often become angry.
The patient’s failure to respond positively is blamed upon his or her stubborn
determination to remain “ill”.
believes that total rejection is probably safer for the patient than the
“We have ways and means of getting you better” approach.
constraints did not allow NS to go into many histories, but he did refer
to nine of his most serious cases where:
all had been bed-ridden for over 6 months
all had severe total body pain
all had sleep problems
all had difficulty with nutrition and fluid intake - 6 needed prolonged
his role as paediatrician, NS is often called upon to supply second opinions
regarding the diagnosis and its severity. This includes cases where allegations
of parental abuse raises the issue of child protection. The point was made
that, even where the condition is life threatening, many of the patients’
regular doctors still do not acknowledge that ME/CFS is a physical condition
let alone one that can be so severe.
cases in which parents were accused of child abuse were outlined. "Take
my word for it," said NS, "these were all false allegations."
should be noted that for every one of those 14 cases, 100 more families
throughout the UK were being threatened.
the 14 cases:
9 were girls and 5 were boys;
6 were prepubertal
3 had been removed from their homes by the police and Social Services.
Single mothers are particularly vulnerable to medical abuse and there were
9 of them.
of the mothers had health problems of their own and were accused of keeping
the children out of school to care for them. As a result of the onslaught,
two mothers became suicidal. The "diagnosis" Munchausen’s Syndrome
by Proxy was used, and in some instances, the ME/CFS diagnosis was replaced
by the convenient new “disorder”, Pervasive Refusal Syndrome.
NS’s involvement, 13 of the 14 cases were reversed:
8 when social services withdrew their allegations of abuse (for which there
was no evidence) and
5 as a result of court decisions.
the time of the Conference, several paediatricians were still being investigated
by the General Medical Council.
was emphasised that in each case, all the main principles of ethics had
X is an example of the lengths to which some medical personnel will go in
order to obtain parental obedience.
X was a very active boy who was elected rugby player of the year, but at the
age of 13, he was struck down with ME/CFS. Knowing their son’s enthusiasm
for sports and life in general, the parents were in no doubt that his illness
was physical and were horrified when told that he was to be admitted to a
teaching hospital for care under a certain psychiatrist.
an effort to protect the child from inappropriate treatment and medical harm,
the father took him abroad. Once his son was safe, he returned to the UK
where he was arrested and sentenced to two years in prison - a term he was
happy to endure knowing that the authorities could not touch his son. Unfortunately
that feeling of security was short lived for the mother was then targeted
and also threatened with imprisonment if the boy was not handed over to the
authorities for treatment.
the 7 months that Child X was in hospital, his condition deteriorated considerably
and his safety was not assured until the matter was finally raised in the
House of Lords.
X remains severely ill and is terrified of health professionals. When asked
by NS what position he played in rugby, the boy looked at him as if he was
mad. Child X could not remember that he had had a childhood and that he had
SECTION - presenter: a father.
the situation is no better in Australia, was highlighted by the father of
Jenny who suffers ME.
loved school. She was outgoing, active, sporty and an academic achiever
but at the age of 13, she contracted glandular fever. This led to a later
diagnosis of CFS and her admittance to hospital where she was entered into
a rehabilitation programme. She collapsed two weeks later.
she spent her time between two hospitals and a pattern emerged.
programme of cognitive behavioural therapy (CBT) and rehabilitation was enforced.
The parents were told that activities with other children would distract her
from her “intrusive symptoms” – amongst which, were light and noise
sensitivity. Rewards were offered for carrying out the required activities,
but since they were beyond her capabilities, she was punished instead. This
usually meant a cut back in family visits. Jenny’s health deteriorated.
Jenny complained, her symptoms were invalidated. When her parents advocated
on her behalf, they were told that they were undermining the hospital.
typical words of “encouragement” made by the hospital staff:
doing this so you don’t have to go to school..” (She loved school.)
are you going to get a life?”
don’t believe you have CFS!”
percent is in your head. You’re not trying! You’re not pushing!”
like to give you a kick up the bum!”
had difficulty with eating and comments such as the following were made: “Don’t
take any notice of her. She’ll be sensible one day and start eating.”
the doctor and you’re the patient. I can con your parents into keeping you
regressed to a five year old.” This judgement was based on the soft toys that
had been given to her.
quiet and passive due to weakness, she was told she should be angry at her
illness. When she demonstrated anger and/or distress at the manner in which
she was treated, she was ignored.
she cried she was told she was depressed. If she smiled, she was told that
there was such a thing as smiling depression.
recorded medical opinions while in hospital:
6 weeks the diagnosis was changed to Pervasive Refusal Syndrome.
5 months, the mother was deemed to be an “illness model”.
9 months it was considered that Jenny had become “adapted to her
invalidism” because the family had “personalised” her room with
soft toys and mementoes.
10 months Jenny’s parents were blamed for her “excessive invalidism”
and she showed “a steely resistance to staff encouragement”. (The
father commented that Jenny was so weak, she was like a rag doll.)
between the parents and medical staff over psychiatric treatment was recorded.
struggle with the medical staff was “an end in itself” and that inpatient
treatment “encourages her to prove how ill she is.”
12 months instructions were recorded that if the parents requested
a referral, the only option to be offered was re-admittance to the first hospital
for more psychiatric treatment.
20 months a new diagnosis was made - psychosomatic disorder. Jenny
was discharged but contact with the hospital continued, presumably on instruction.
home, she showed some improvement. She was certainly happier and even gaining
weight but after five months the parents and Jenny were summoned to a meeting
with personnel from both hospitals.
the specialist told them that Jenny had not made any progress and that home
care was no longer acceptable. The diagnosis, they were told, was not CFS,
but deconditioning and psychosomatic disorder.
front of a terrified Jenny, the parents were also informed that they had 48
hours in which to either agree to have her readmitted to hospital for re-evaluation
and intensive rehabilitation or face the consequences of a child protection
Jenny and her parents felt confusion, frustration, humiliation, anger, pain
and fear, is hardly surprising. The lack of ethics and professionalism was
plain, and one could not argue with the father’s belief that those dealing
with his daughter had abused their power.
– presenter: Nigel Speight
highlighted the following political issue:
“have been allowed to hijack this condition for 30 years too long…they
are emperors prancing around in the nude admiring each others non-existent
clothes. Someone should break the news and persuade them to get back to
their genuinely mentally ill patients who could benefit from their attention.”
political issue is terminology. A large section of the medical community
attempted to do away with the title myalgic encephalomyelitis (ME) in favour
of chronic fatigue syndrome (CFS). Patients refused to budge on this, and
while support charities stuck to ME, the medical profession adopted CFS.
In some quarters “a strategic retreat to the more defensible position of
encephalopathy” was adopted.
the first 5 years of NS’s 20 years in the Durham area, there were few cases
of ME. Since then the incidence has been rising and currently, there are
120 cases in Durham alone.
this section, NS detailed 49 consecutive cases (covering the whole spectrum
of severity), between 1988 and 1996.
histories showed the following:
history of ME/CFS in first degree relatives = 7 (14%)
history of migraine = 33 (67%)
history of migraine in first degree relatives = 28 (57%)
to the CDC diagnostic criteria, a diagnosis of ME/CFS can only be made if
the level of activity has been reduced to 50% or less. NS felt that left
a number of patients with no diagnosis. He uses the following table when
making a diagnosis.
70 – 90% activity level
40 – 70% activity level
5 – 40% activity level
the worst 6 month period
6 (12%) were mild (these would have been excluded by the CDC criteria)
(39%) were moderate
(49%) were severe
the 5 class categories, 27 cases (55%) came from Social Classes III, IV,
V which negates the claim made by psychiatrists that this is a disease of
middle class children i.e. Social Classes I and II.
indications are that children have a better recovery rate than adults.
cases (31%) made a full recovery. However, it should be noted that the
mean duration of the illness was 5.1 years.
cases (55%) had improved significantly.
cases (14%) remained severe and static.
claim made by one prestigious hospital in London, that most children get
better in 12 months, is “a damaging myth”.
accounts for the loss of 89 academic years which represents 1.8 years per
child. This is the highest school loss for medical reasons in the UK.
charts over the follow-up period, show that the illness follows no fixed
In North Durham, paediatric ME/CFS is a significant problem which appears
to be increasing.
ME/CFS constitutes a major cause of chronic ill health and school loss.
The disease is not confined to social classes I and II.
There appears to be an association with migraine headaches.
Prognosis guarded - cautious optimism in most cases.
There is a need for further research on incidence, aetiology and treatment.
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video, “Who Will Protect the Children” is available from:
Alison Hunter Memorial Foundation