The psychiatric abuse of Children with ME

The  psychiatric abuse  of Children with ME : some notes from the literature

Greg Crowhurst 19^th August 2011

It is not that easy gathering together the information on this subject; yet it is so important ! The quotes below are  the result of a lengthy  search I have conducted. All the material is publically available, I have tried to follow  copyright restrictions where stated.

1.

“The number of parents in the UK being threatened by doctors who say they will report families to child protection agencies has doubled in the last year.

Fifteen year old Leanne Murray has severe ME and struggles with a range of unpredictable symptoms of ME including nausea, muscle pains, post exertion fatigue and light sensitivity. “

When Lorraine took her to hospital with chest pains, doctors said there was nothing they could do.  Leanne was sent home with no treatment and the consultant reported her mum to social services. 

A week later a social worker arrived on their doorstep in Coatbridge.  Now the family fear taking their daughter to hospital again.

Leanne was terrified by the experience.  “I am used to doctors not believing that ME is a real illness.  But that was really frightening.  It was bad enough they did nothing to help me.  It was worse knowing what they had done afterwards.”

The social worker didn’t see a need to proceed with the case but the family was distraught.  Lorraine, who also suffers from ME, said the family have dreaded medical appointments since they were threatened for the first time with child protection last year, after removing Leanne from a physical exercise programme.

“We are sure the physiotherapy made her worse. But they were saying do it, or else. When a professional is threatening you, you are scared to talk to anyone. The consultant wrote to our GP and said if I remained resistant to his approach, I should be spoken to by child protection.” 

http://www.newsnetscotland.com/index.php/affairs-scotland/1461-parents-of-sick-children-living-in-fear.html

2.

“One mum we spoke to was blackmailed into withdrawing a complaint about their paediatrician.  Claire* has been threatened with child protection services and accused of damaging her son, Neil, for attention.

Her thirteen year old son Neil* was diagnosed with ME at age ten and now he rarely gets out of the house.  He weighs just over six stone.  Claire said the attitudes of hospital consultants changed after she removed Neil from a prescribed exercise programme which she believed caused him to relapse.

“The doctor asked me what I thought social workers would say if they found out I had got him a wheelchair.  Then a consultant asked me if I had heard of Münchausen by proxy.”

Claire was advised if she withdrew the complaint about the consultant the family would not be referred to child protection services.  “We agreed because we were so afraid of what could happen if we didn’t.”

Despite the severity of Neil’s physical symptoms, Claire said doctors show a lack of understanding of how ME affects children.  “A consultant recently told him he couldn’t be tired when all he had done was to sit in a car to come to the hospital.  They often present it as a psychological problem.”

A spokeswoman from the Royal College of Paediatrics and Child Health said, “Every case needs to be considered on its own merit and individually.  The same threshold for referral to children’s social care exists for a child with an underlying illness as for a child without an underlying illness.”

http://www.newsnetscotland.com/index.php/affairs-scotland/1461-parents-of-sick-children-living-in-fear.html

3.

The number of children and young people with ME/CFS who have been subject to child protection investigations has come up in a Parliamentary question. The Government admitted it had no idea of the numbers involved.

In a written question, the Countess of Mar asked the Government how many children and young people up to and including the age of 16 who had been diagnosed with ME/CFS have also been referred to social services for a child protection (Section 47) investigation.

She also wanted to know that of all children so referred, how many had been diagnosed with ME/CFS either before the start of the investigation, or subsequently in the past 10 years.

In a written answer on 16 May 2011, Lord Freud (Parliamentary Under Secretary of State for Welfare Reform) replied:

The requested information is not available. Neither DWP nor DH nor DfE collects the information.

http://www.meassociation.org.uk/?p=6210

4.

Ean Proctor

“At the hospital, “Wessely pinched his skin a bit and looked at him from the foot of his bed,” Ean’s mother Barbara Proctor recalls. “Then he took us to another room and told us that Ean didn’t have ME and that children don’t get it.”  When the Proctors told him that they believed he did have the disease, Barbara Proctor says, “Wessely accused us of playing doctor.”

Five months later, after a protracted court battle that nearly bankrupted the Proctors, Ean was finally released into the care of his parents and ME physicians. “We often say if we hadn’t gotten Ean out of there, he wouldn’t have come out alive,” his mother says.  One of his new doctors had treated several children during the Welsh ME/CFS outbreak; Ean also saw a local homeopath. Only 4 to 8 percent of ME/CFS patients recover, but, astonishingly, Ean was one of the lucky ones.  In the reverse order in which they began, his symptoms slowly resolved, until he was well.

QUOTED FROM CFS CENTRAL, FOR MUCH  MORE DETAIL , INCLUDING SIMON WESSELY’S LETTERS.  PLEASE SEE :

http://www.cfscentral.com/2010/06/hard-cell.html

5.

Seemingly because of the Wessely School’s beliefs, children with ME/CFS have been diagnosed as having “pervasive refusal syndrome” and many have been forcibly removed from their distraught parents (see below), who themselves have been labelled as having Munchausen’s Syndrome by Proxy, a damaging label that is never deleted from their medical records.

Malcolm Hooper http://www.stonebird.co.uk/hooper.html

6.

Lord Goldsmith - Attorney General
House of Lords                                                                      1st June 2007
Westminster
London
SW1A OPW

Dear Lord Goldsmith,

My name is Criona Wilson. I am the mother of Sophia Mirza. She was the youngest of my four children. Sophia suffered from severe (M.E./CFS) since 1999. She died on 25th November 2005. She was only 32. An inquest was held in June 2006 which recorded the cause of her death as Chronic Fatigue Syndrome ………………………………….

…………………………………………………………..

None of what was done to Sophia by the doctors, social worker, Chief Executive, Court Manager and Hospital workers has ever made any sense to me. I found it brutalising in the extreme; more so as I am a trained nurse and midwife. I also believe that it was illegal. It appears that no one wants to know or care what was done to her and what is still being done to many families across the land who have the misfortune to have M.E…………………………………………………….……………………..

Up until now, every door has been slammed in my face. It seems to me that no one, either medically or legally, has been able to explain to me in any terms, how the parties involved in my daughter's treatment and death could threaten Sophia and then implement these threats with such deadly results. It appears to be of no consequence to them that my young vibrant and courageous daughter, Sophia, died as a result of their decisions; these decisions did not have a legal, medical or procedural basis and appear to me, to be their own unilateral illegal, decisions.

I'm writing to you as I've tried to get answers and representation from everyone, without success. As the Attorney General I do believe your involvement is now required. I will not stop posing these questions until there is accountability and transparency regarding my child's suffering and death.

I eagerly await your response.

Yours sincerely

Criona Wilson

Cc David Lepper M.P.
      Des Turner M.P.

http://www.sophiaandme.org.uk/legal.html

7.

 Children with M.E. have been taken from their parents and denied access to food, water or parental contact - or thrown in swimming pools - in an attempt to try to force the child to 'stop pretending to be ill.'

What is happening to people with M.E. is a gross violation of basic human rights. It amounts to legalised medical torture and abuse of some of our most vulnerable members of society. The damage perpetrated on those with M.E. by Wessely School adherents cannot be quantified.

The problem is not merely that M.E. patients are inappropriately treated as if they were mentally ill. It is so much more than that. The 'CFS' government spiel encourages the idea that patients given this misdiagnosis are lazy, selfish, manipulative, dishonest and deluded people that are 'enjoying the sick role' and so deserve to be treated with scorn, contempt and outright ridicule. Patients are persecuted by everyone around them in many different ways, continually.

Requests for further testing are always to be denied lest they perpetrate the 'mistaken belief'the patient has that they are ill. Doctors are told that this testing is also a waste of money because of course 'you won't find anything.' Thus it is almost impossible for those thrown into the 'CFS' wastebasket - probably the majority of whom are physically ill and would have abnormalities on testing - to be given a correct diagnosis and correct treatment.

This is the aim of the 'CFS' scam, to enable companies to get out of paying for any type of proper medical care for all these patients, saving them many millions of dollars. The abuse of M.E. patients part of a money making venture by big business, helped along by government. The abuse is not accidental, it is PLANNED, and these groups are working hard to make sure it continues so that their financial and political rewards also continue.

Humans rights groups and the media could not be less interesting in helping M.E. patients and seem to have fallen for all the 'CFS' propaganda fully, as tissue thin and scientifically laughable as it is. Thus things continue to get worse for M.E. patients and the abuse continues to escalate as each year passes.

To claim that there is 'medical disagreement' over M.E. is simply not accurate. As Professor Malcolm Hooper explains:

People in positions of power are misusing that power against sick people and are using it to further their own vested interests. No-one in authority is listening, at least not until they themselves or their own family join the ranks of the persecuted, when they too come up against a wall of utter indifference.

http://www.hfme.org/meandabuse.htm

8.

Transcript
14/04/1999
Mother fights to get daughter back after disputing doctors

MAXINE MCKEW: In Queensland, a bitter dispute over medical treatment has resulted in a mother losing custody of her teenage daughter.

Tahnee Johnson claims her daughter is suffering chronic fatigue syndrome and needs time and rest to recover.

But some doctors are arguing the girl doesn't have the condition and needs physical therapy instead.

Now, her mother is appealing a Children's Court decision placing her in the custody of the Department of Family Services so treatment can continue.

Genevieve Hussey reports.

TAHNEE JOHNSON: I have seen her sobbing due to the pain that she's been in.

I have observed her holding out her arms and begging me, begging me that she cannot last much longer.

GENEVIEVE HUSSEY: Tahnee Johnson only sees her daughter on the occasional weekend visit .

TAHNEE JOHNSON: I have no control. They've stripped me of everything.

I mean, I will always fight for my daughter...

GENEVIEVE HUSSEY: Tahnee Johnson's plight began when she took her ill and lethargic daughter to hospital.

When doctors began physiotherapy Tahnee Johnson says her daughter's condition worsened.

TAHNEE JOHNSON: All these other symptoms within this week just set in from the light sensitivity, to noise sensitivity, skin sensitivity, incredible weakness.

GENEVIEVE HUSSEY: Believing the treatment was doing more harm than good, she removed her daughter from the hospital, convinced she was suffering chronic fatigue syndrome — a debilitating illness which leaves sufferers weak and fatigued.

DR RICHARD BURNET: They have a collection of symptoms associated with low blood pressure, low blood glucoses, bowel disturbances.

TAHNEE JOHNSON: I believe that she's capable of doing very, very little.

She needs lots of rest and she needs to be in an environment where she's believed and she needs to be under the guidance of a doctor that understands chronic fatigue syndrome.

GENEVIEVE HUSSEY: However, doctors rejected her view, and at this point, the Department of Family Services became involved.

PETER EVANS: A psychiatrist set a SCAN team, which is a Suspected Child Abuse and Neglect team, on the mother saying she was preventing proper treatment of her child, which was the forced physical rehabilitation.

GENEVIEVE HUSSEY: The Department says when there's potential harm to a child the opinions of medical specialists are canvassed and the court makes a decision based on all of the evidence.

After a four-day hearing the Children's Court decided the girl should remain in the custody of the Families Department and receive continuing treatment.

PETER EVANS: We're terribly concerned about the physical safety of the child, the inappropriate treatment and the probable misdiagnosis.

GENEVIEVE HUSSEY: The Chronic Fatigue Syndrome Society believes forced physical rehabilitation is the wrong treatment.

Chronic fatigue syndrome specialist Richard Burnet says sufferers must be allowed to exercise at their own pace.

DR RICHARD BURNET: The mainstay of treatment is to only allow people to exercise to the limit of their tolerance.

If they go beyond that, they produce excess amounts of lactate, they damage the cells themselves.

GENEVIEVE HUSSEY: Dr Burnet has diagnosed the girl with chronic fatigue syndrome but won't talk about the specifics of the case.

He says he's diagnosed over 300 cases of CFS based on an internationally accepted set of criteria.

DR RICHARD BURNET: We have to run a fairly extensive series of investigations to exclude all these other tests, but at the end of the day, the person has the symptoms of chronic fatigue, the primary diagnosis is based on the history and the lack of finding any other condition that can cause the fatigue.

GENEVIEVE HUSSEY: Chronic fatigue syndrome has had a controversial history.

In the past, sceptics have claimed it's "all in the mind". Others have warned it's easily misdiagnosed.

Is it possible that you're wrong, that you're being fooled by your daughter?

TAHNEE JOHNSON: No, no.

GENEVIEVE HUSSEY: What makes you so sure?

TAHNEE JOHNSON: Because as a mother when, like I said, when you witness something like I witnessed with my daughter, knowing what she was like before.

GENEVIEVE HUSSEY: The Chronic Fatigue Syndrome Society says Tahnee Johnson's isn't an isolated case.

It points out that similar cases are being fought in the US and the UK and a number of Australian parents claim they've faced the threat of losing their child.

PETER EVANS: In most of the cases what has happened is the child's been marched around with all the tenderness of building a Burma railway under the Japanese occupation, the child gets sicker and more distressed and often the mother tries to intervene saying, "This can't be right, my child's getting sicker," and the very unsavoury feature of this, is often the psychiatrist will turn on the mother and say, "Well, you're abnormally close to your daughter, the relationship's abnormal and improper, you've got to stay away from the hospital, you've got to stop getting involved in the treatment".

GENEVIEVE HUSSEY: Karen says she's experienced a similar dilemma.

KAREN: My daughter Simone has suffered one of the most severe cases of chronic fatigue syndrome ever seen in Australia.

For almost two years of her illness she was paralysed from the neck down.

GENEVIEVE HUSSEY: Karen says when she disputed the medical treatment being given to her daughter, she was told she could lose custody of her.

KAREN: You think you live in a democracy with freedom of choice but the bottom line is if you question their authority, the medical profession aided by Social Services has the power to have your child taken away from you.

GENEVIEVE HUSSEY: The 7:30 Report approached the Queensland Family Services Department and doctors involved in Tahnee Johnson's daughter's case, but they declined to comment.

We did receive this statement, saying in part: "The Department of Families is required by law to implement the decision of the cour t, which is subject to the normal appeal process.

The issue of what constitutes appropriate medical treatment is not a matter for the Department, but rather for the medical profession."

Tahnee Johnson says she hasn't given up her fight and is to appealing the court decision.

TAHNEE JOHNSON: When you see that it's harming your child and causing her distress any mother would confront them and challenge them about their treatment.

http://fibrocfs.wordpress.com/2011/04/20/mecfs-prejudice-and-policies/

9.

From the BBC Panorama programme "Sick and Tired" on 8th November 1999, it seems that another paediatric psychiatrist who subscribes to the belief that children with ME/CFS should be treated by "active rehabilitation" is Dr Michael Prendergast, formerly of Great Ormond Street Hospital, London, and that Prendergast has used an experimental and scientifically unproven "active rehabilitation" regime for children with ME. The programme exposed the quite appalling treatment carried out by Prendergast and it revealed the harrowing stories of several families whose very sick children had been removed from their homes and locked away in "secure" psychiatric units where minimal parental access was permitted.


Following the Panorama programme, Harvey Marcovitch, a consultant paediatrician and Editor of Archives of Disease in Childhood, wrote an article in the British Medical Journal 13 stating "BBC's Panorama performed a hatchet job on Dr Michael Prendergast, previously a child psychiatrist at Great Ormond Street Hospital (who) uses active rehabilitation as a treatment for chronic fatigue syndrome....It's about time the (medical) profession hit back at those who are vilifying our colleagues".


Wessely rushed into electronic print to support Marcovitch 14, stating "I congratulate Harvey Marcovitch on his exposition used by some activists to hound those paediatricians who are prepared to consider that parents do not always act invariably in the best interests of their children"; referring to the BBC Panorama programme, he said "This was a particularly biased and pernicious account of an area where balance and reason are needed, not polemic and distortion.....Any parent who watched the one-sided Panorama programme might be forgiven for thinking that the management of CFS in children involves coercion and the Courts...."


This same Harvey Marcovitch was apparently head-hunted and now, with Wessely, is a member of the Chief Medical Officer's Working Group on ME/CFS (see later).


Perhaps unsurprisingly, Elena Garraida also wrote to the BMJ 15 stating "television can also fuel the fire of pressure groups bent on combatting and discrediting medical diagnoses and treatments support H.Markovitch's conclusions that defence societies should consider defending doctors who are defamed publicly. In addition, highly biased programs (sic) such as Panorama's are likely to scare families and deter them from seeking the best help available.."


The treatment of children with ME/CFS is disastrous, as shown in the Panorama programme; the presenter (Matthew Hill) confirmed to the present author that there were so many cases to chose from that his difficulty was in deciding which families to use for the programme.


There is no question that children with ME/CFS have been forcibly removed from their parents and home - this pressing issue was raised by consultant paediatrician Dr Nigel Speight at the Chief Medical Officer's Working Group (see later) in April 1999, who reported that the frequency of psychiatrists diagnosing Munchausen's Sydrome by Proxy now amounted to an epidemic: this was reported in the 1999 (Autumn) issue of Perspectives, (the magazine of the UK ME Association).


Speight also reported that there was enormous pressure on sick children to attend school, with mandatory involvement of a paediatric psychiatrist (and consequent rejection of input by a paediatrician).


There are over 400 young people between the ages of 5 and 25 in the Association of Youth and ME, all of whom are too ill to attend school or university.


As long ago as 1988, young people with ME were being subjected to psychiatric "distraction therapy"; the most well-known case is that of Ean Proctor from the Isle of Man, then a twelve year old boy who, against his parents' wishes and with no prior warning, was forcibly taken from his parents. A policeman was standing by and a Court Order had been obtained (which was supported - in writing-by Wessely).


Before being referred to doctors in London, Ean had been subjected to terrifying ordeals: his local doctors did not believe in ME so they devised activities which were designed to prove that the child's symptoms were simulated. One such "distraction therapy" involved taking the petrified child on a ghost train in the expectation that he would cry out in fear on 3rd June 1988 Wessely had written a letter saying that Ean's inability to speak was " elective mutism").


Ean's parents turned for help to the Isle of Man Tynwaid, whose report on the case reveals even more horrors (ref. Report of the Select Committee of Tynwald on the Petition for Redress of Grievance of Robin and Barbara Proctor, 1,C April 1991). This official report states: "At the time, Ean could not keep his balance, his legs were getting weak, his speech was much slower, he found it difficult to read and he could not keep his concentration. He could not feed himself because he could not move his arms; he could not stand. He was subsequently unable to speak". The report documents that during one admission to Nobles Hospital on the Isle of Man, whilst "paralysed, he was put in the swimming pool with no floating aids whatsoever. Mfs Proctor said that at this time, Ean could not move a finger and could not speak. Ean sank under the water" (page 14,3.15).


Regrettably, not much seems to have changed in the last twelve years as far as the treatment of children with ME is concerned. A comparison of the views of UK psychiatrists as set out in the joint Royal Colleges' report on CFS with an American report (Chronic Fatigue Syndrome: Information for Physicians. NIH, Public Health Services, US Department of Health and Human Services, September 1996) shows just how little the approach of psychiatrists of the 'Wessely School has altered.


For example, the US report states on page 7 that it advocates a "supportive approach", whereas the UK report states that children may need to be forcibly removed from their parents, stating "CFS in children covers a broad spectrum of problems. Even Munchausens by Proxy Syndrome" (10.2).


The US report states on page 8 "the physician should work with the school to limit class time, if necessary, and to resume school attendance gradually", but the UK report urges "an immediate return to school" (page 31, 10.12)
The US report advises "Home tuition may be an alternative" but the UK report states "We discourage home tuition" (page 31, 10.12).


For over a decade, Wessely has claimed that ME and CFS are the same condition, and that this condition is psychiatric: despite the fact that serious concerns about the methodology and validity of his well-published views on ME and CFS have been published in mainstream international medical journals, and despite the fact that many of his papers have subsequently been shown to be gravely flawed (see later), the UK medical establishment and Government departments are continuing to turn a blind eye.


Editors of UK medical journals appear to afford psychiatrists of the "Wessely School" a seemingly open door to publish papers claiming a primary psychiatric aetiology for ME/CFS but appear regularly to reject submitted papers from other researchers showing the organic basis.


For Wessely to be permitted to promote his personal view of ME/CFS is notable, given that the World Health Organisation has formally and definitively classified ME as a neurological disorder under Diseases of the Nervous System at section G93 (Other disorders of brain), sub-titled Postviral fatigue syndrome (G93.3) sub-titled benign myalgic encephalomyelitis 16, whereas fatigue syndromes are formally classified under Mental and Behavioural Disorders at section F.48 (Other neurotic disorders), subtitled Neurasthenia F.48.0, subtitled Fatigue Syndrome 17.


Consideration of Some Issues Relating To
The Published Views of Psychiatrists of
The "Wessely School"
in relation to their belief about the nature, cause and treatment of myalgic encephalomyelitis (ME) with Appendices by Val Broke-Smith and Ann Crocker 
Margaret Williams
ME Research (UK)
March 2000

http://www.meactionuk.org.uk/consideration.htm

10.

Gene abnormalities, cell death abnormalities, brain

function abnormalities, muscle metabolism

abnormalities, spinal fluid abnormalities – serious

physical dysfunctions are being uncovered. They

receive little publicity in the general media.

Unfortunately, myths die hard. Some seem to have

a life of their own and rule everything we do: “The

Myth is dead; long live the Myth.” What is the main

myth about ME? Surely, it is that ME is mainly

psychological, or that even if it isn’t, psychological

therapies will enable normal function to return in a

few months or a year, enabling children to participate

in school as they did before they were ill.

That path is fraught with bear-traps. It has resulted

in parent-teacher wars with the child caught in the

middle, tribunals, suspicions of child neglect or

abuse, and even the threat of court cases where the

duty of care is breached and illness is exacerbated.

Jane Colby

http://www.tymestrust.org/pdfs/pushingtheboundaries.pdf

11.

In centuries past, it was normal practice to “bleed”

patients. It was also normal to beat pupils who could

not remember their lessons. We find such things

unthinkable today, yet still many young folk with

ME are pushed beyond their limits, tragically to the

point of cruelty, by those who genuinely believe it is

“right” for them. The result is often further disability

and distress.

Jane Colby

http://www.tymestrust.org/pdfs/pushingtheboundaries.pdf

12.

Already there are cases of adult M.E. patients admitted into psychiatric hospitals, and the appalling situation of very sick M.E. children being compelled to go to school and subject to Social Services ‘child protection proceedings’. Indeed, the Royal College of Paediatrics and Child Health recent ‘treatment’ guidelines amount to the sanctioning of medical child-abuse, and will result in setback, disability and family break-up. Things are however set to get worse for all UK M.E. sufferers as the new ‘Regional ME Treatment Centres’ - and DWP benefits access – are to be based upon psychiatric falsehoods. This is, as Professor Malcolm Hooper puts it, ‘persecution of the sick and a national scandal’.

Kevin Short

http://www.ahummingbirdsguide.com/wmauthorsshortmepian.htm

13.

..information helpful for diagnosing pediatric ME/CFS is knowing that adolescents 12 to 17 years of age are more likely to develop ME/CFS than younger children. Be aware that children as young as 4 years of age have been diagnosed with ME/CFS. In adolescents, the onset usually starts suddenly with a fever and flu-like symptoms. Diagnosis at this point may be difficult because although the symptoms are severe, the routine blood tests are normal. Moreover, the patient must be ill for three months before a diagnosis of ME/CFS can be officially made. A gradual onset of ME/CFS occurs less frequently and is more common in younger children. In younger children, the onset may take months or several years. Diagnosing ME/CFS in younger children is further complicated by the inability of younger children to appreciate that their fatigue and other symptoms are abnormal. In such cases, the diagnosis of ME/CFS may be made retrospectively when the child is older. Children and adolescents with ME/CFS often look well. A lack of obvious external physical signs of illness may mean that the first sign of illness will be a marked limitation in either physical or mental activity, which is usually first noticed by a parent or teacher. The external, well appearance of a ME/CFS child may lead to the accusation of School Avoidance Behavior (school phobia) or the citing of a parent for Munchausen’s syndrome by proxy. 

ME/CFS usually occurs as sporadic cases of the illness. Interestingly, for 20% of patients, more than one family member has the illness suggesting either an environmental or genetic link. Clusters of cases, or outbreaks, of the illness have been found worldwide. In many of these outbreaks the illness has been prominent in school-age children. The prevalence of CFS/ME in children and adolescents is uncertain. Different prevalence studies have used different criteria to diagnose ME/CFS and some have not distinguished children with chronic fatigue from children with possible ME/CFS.

The severity of ME/CFS varies. Some children are severely disabled and bedridden, while others can go to school and a few are capable of playing sports. Most children are between these two extremes. The pattern and the severity of symptoms experienced by a child may change markedly from day to day or during the day. It is important to listen to what the child has to say about the severity of his/her symptoms.

New, Pediatric Case Definition Helps Pediatricians 
Diagnose Chronic Fatigue Syndrome (ME/CFS)

Rosemary Underhill, MB BS (UK), Kenneth J Friedman PhD.

http://monkeyswithwings.com/cfspediatrics.html

14.

Munchausen’s by Proxy

1. Illness in a child that is simulated or produced by a parent or someone acting in loco parentis.
2. Presentation of the child for medical assessment and care, usually persistently, often resulting in multiple medical procedures
3. Denial of knowledge by the perpetrator as to the etiology of the child's illness
4. Abatement of the child's acute symptoms when the child is separated from the perpetrator. Excludes physical and sexual abuse and nonorganic failure to thrive.

             Shaw. Factitious disorder by Proxy; Harvard Rev Psychiatry 16, 215-223, 2008

15.

Both Factitious Disorder and Malingering

"they are not so much interested in treatment as they are in either seeking to ‘enjoy’ the status of ‘patient’ or in obtaining a medical diagnosis for personal gain."

Branch, WT. Office Practice of Medicine, Saunders; 4th ed; p1219

16.

Pediatric Condition Falsification
(PCF)

American Professional Society on the Abuse of Children

• Diagnosis of PCF given to the child victim
• Psychiatric Diagnosis of  Factitious Disorder by Proxy (FDP) given to the perpetrator
• Intentional falsification of symptoms by perpetrator (parent)

Ayoub. Definitional Issues in Munchausen’s syndrome by Proxy; 2003. Child Abuse Neglect 11:7-10

17.

Hypochondriasis by Proxy

Mild variants where maternal anxiety leads to an exaggerated perception of the child as sick.

 Roth. How “mild” is Munchausen’s syndrome by Proxy? Isr J Psychiat Relat Sci 1990;27:160-7

(The above from Dr David Bell’s presentation : Factitious Disorder and CFS in Adolescents
www.hhs.gov/advcomcfs/meetings/agendas/bell_factitious_102909.ppt

18.

The Quality of Life in Children with ME

 

Results

The mean illness duration of patients was 3.7 years. Sixty-eight percent of the children said that their illness developed quickly; in 88% illness had had an infectious onset. Only one child (4%) attended school full time, while 12 (48%) went to school part time, and 8 (32%) had home tuition only. Children with CFS/ME scored significantly scored lower in 10/14 CHQ concepts; lowest scores were shown for “global health” (21.4 versus 84.1 in patients and controls, respectively; P<0.0001) and “role/social limitations due to physical health” (24.9 versus 100; P<0.0001). Other concepts significantly lower in CFS/ME patients included self esteem, mental health, and increased bodily pain and discomfort. Quality of life in the children with CFS/MEcompared unfavorably with previously published results for pediatric type 1 diabetes and asthma patients. There was a close correspondence between the illness perceptions of the children and their parents.

Conclusions

The quality of life of children with CFS/ME was profoundly reduced when compared to their healthy counterparts.

Dr Gwen Kennedy, Dr Christine Underwood, Prof. Jill Belch

http://www.meresearch.org.uk/research/projects/childrenqol.html

19.

Information Request - MUNCHAUSEN SYNDROME BY PROXY 

August 04 2006 

Social Services UK and ME/CFS Children

A Cross-Party Group of Members of Parliament in the United Kingdom is putting together a report on parents who have been accused of Munchausen Syndrome by Proxy et al. Information is required to put this together to help these families. 

The BBC Panorama Survey on ME/CFS showed that 7% of children from families questioned had been subject to child protection proceedings; court proceedings had either been threatened or carried out.

If representative, this implies that seven out of every one hundred children with ME/CFS will be threatened with being taken away from their parents. Since there are over 40,000 children and young people labelled with ME/CFS in the United Kingdom, this represents a considerable number. 

We know that the children's ME/CFS charities in the United Kingdom cannot be relied upon due to vested interests to report this situation accurately. So often, these miniscule membership charities are part of the problem, not the solution. 

http://www.fassit.co.uk/social_services_out_of_control.htm

19.

Professor Hooper's response to BBC Radio 5 ME programme

« on: August 01, 2011, 11:51:17 AM »

I rang 5 Live, on Friday July 29th, to join in the debate on ME following the item on Radio 4 that was followed-up on 5 Live. (http://www.bbc.co.uk/iplayer/console/b012nlcv)

I briefly stated my concerns, qualifications, etc; 5 Live phoned back after about 5 minutes but almost immediately I was put on hold with the programme running in the background but no communication from anyone on the programme. After almost 30 minutes I finally had to put the phone down to attend to visitors whom I had kept on hold for your programme. The lack of any contact from anyone on the programme team I found extremely disappointing not to say discourteous.

The programme concentrated on the sensational claims that death threats and warnings had been issued against some psychiatrists who carried out research into CFS but no objective evidence was presented, only the impression of one participant, paediatrician Dr Esther Crawley.

These alleged threats and warnings actions were described as the abuse of scientists. 

However, nothing was mentioned about the abuse of patients by these psychiatrists and others who promulgate the view that CFS/ME is a mental and behavioural disorder in defiance of the WHO classification of the illness, for example, sick patients sectioned under the mental health act and confined to locked wards, 
children and young people forcibly separated from their parents, and parents accused of Munchausen's-Syndrome by Proxy. 

The evidence is in the public domain, http://www.sophiaandme.org.uk/ with full medical records for Sophia Mirza,http://www.sophiaandme.org.uk/documents%20index.html . Ean Proctor’s story describes positively medieval actions that have more in keeping with the Inquisition than modern medicine (see “Skewed” by Martin Walker ISBN0-9519646 and “Denigration by Design” by Margaret Williams who also describes the case of Child X and Wessely’s role in the story,http://www.meactionuk.org.uk/Denigrationbydesign.pdf See also “Voices from the Shadows”, a recently issued trailer for a DVD that tells the story of very sick ME patients.

The vested interest of many psychiatrists dealing with ME/CFS who are deeply involved with the insurance industry was exposed in the Gibson Parliamentarian’s report that asked for an investigation of these links. Nothing has been done to investigate this unsatisfactory situation. Consequently, the false diagnosis of ME/CFS as a mental illness has resulted in sick patients being denied financial support and benefits, a matter of great concern following the introduction of new benefits legislation.

The recently published International Classification of ME, July 2011, was ignored. One member of the international team was Dr Nigel Speight, a paediatrician specialising in ME who has been involved in many cases where compulsion and abuse by doctors required legal intervention.

The cardinal feature of ME, post-exertional malaise (post-exertional neuroimmune exhaustion), was not mentioned by anyone in either programme, rather the word fatigue was used misleadingly to describe ME. The numerous and well documented clinical signs (neurological, cardiovascular, endcrinological and immunological) were not mentioned. Nor were the deaths arising from ME, especially that of Brynmor John MP who collapsed and died following prescribed/advised physical exercise.

There was no mention of the effective treatments of ME reported in the biomedical literature (some 5000 papers) that have been repeatedly ignored by Professor Wessely and his followers.

If the adverse, even vilifying, attack on people with ME is to be broadcast as fact and the science of the illness ignored, the BBC should at least properly research any programme before it is put out. In the interests of natural justice and transparency, so beloved of our politicians and organisations such as the GMC and NICE, then the whole story must be told. 

We have recently called for the retraction of the PACE trial study published in the Lancet and await a response to our detailed criticism of this paper that is a travesty of science, a tragedy for patients, and is tantamount to fraud. Good science is being denied/ignored in order to promulgate the unsustainable psychiatric view of ME.

Please accept this letter as one of complaint for a very biased and uninformed programme and please act accordingly to put the facts of this complex, chronic and debilitating illness in the public domain in a programme worthy of the BBC.

Malcolm Hooper

 

20.

European ME Alliance submission to DSM-5 draft proposals Submission – to the American Psychiatric Association on DSM-V Complex Somatic Symptom Disorders category

The patients we are concerned with suffer from myalgic encephalomyelitis which is a neurological disease. Yet all too often these patients are being treated as if they had a somatoform illness.

Parents of children with ME/CFS are restricted in visiting their severely ill children in hospital or worse still the children are taken away from their families as the healthcare professional believes it is the family that is keeping the child ill by having ‘wrong illness beliefs’.

Severely ill grown ups with this disease are denied normal medical care and threatened with being placed in mental hospitals if they are too ill to care for themselves and ask for help.

This not only sets patient against healthcare professional but also is a waste of resources and of lives.

http://totoneimbehl.wordpress.com/2011/06/11/reaksjon-og-innsigelse-fra-iacfs-me-statement-pa-dsm-5-somatic-symptom-disorder/

21.

 

 

Have Psychologizers ever ONCE apologized?

·                                 Erik R Johnson, n/a

Incline Village NV 89450

Have psychologizers ever once apologized for the damage they have done? Did psychologizers ever say to an AIDS patient "I'm sorry I blamed your illness on you because of your lifestyle"? To a woman with PMS "I'm sorry I said you were a hysterical female"? Someone with ulcers from H - Pylori, "I'm sorry I kept telling you it was stress when it was really a bacterial infection"? Tuberculosis; "I'm sorry I told you that you brought this illness upon yourself by having a nervous disposition"? Thyroid; "I'm sorry that I said your weight problem was from a lack of discipline in your diet"? ADD/ADHD: "I'm sorry that I told you that this was from your bad choice of sugar laden foods"? Autism; "I'm sorry that I slapped your child and tried to shake him out of it"? SIDS/Cot Death; "I'm sorrry that I accused you of killing your own child"? Munchausen: "I'm sorry that I wrongly took your children away forever"?

What do psychologizers plan to say to CFS/MS sufferers when psychologizers finally realize that they were wrong again and that CFS/ME is exactly what sufferers say it is?

Is there any illness in history that didn't have psychologizers standing in the way of sick people seeking medical help by saying "They don't need that kind of help. They just need to change their attitude". When the etiology of any illness was finally found to be "Not Psychological", did psychologizers ever make the slightest attempt to undo the damage they created? Did psychologizers ever try to restore the credibility they stole from those they falsely told "It's All In Your Head"? Or did they scamper off to concentrate their "help" on the next "unexplained medical illness" they could find? How many more examples of this process do we need to go through before society prevents psychologizers from pronouncing their victims "Guilty! - until proven innocent of mental illness?

-Erik Johnson

http://www.bmj.com/content/330/7481/14/reply

22.

Michael Sharpe ed.: Companion to Psychiatric Studies

Review by  Humphrey Canine - See all my reviews
This review is from: Companion to Psychiatric Studies (MRCPsy Study Guides) (Paperback)
This book contains factual errors and is misleading. 

It is hard not to wince at the thought of all those psychiatrists who used to routinely ridicule children afflicted by paralytic poliomyelitis, authoritatively proclaiming that if only they would stop malingering, they would overcome their "hysterical paralysis". Imagine the distress caused each time a parent was told "You're child only remains paralysed because she won't try hard enough to walk for herself." 

Modern (post-WWII) psychiatry has a menacingly extensive history of mischaracterising serious diseases (of biological etiology and pathology) as being emotional disorders. Other examples include tuberculosis, syphilis, MS, Parkinson's, asthma, peptic ulcers, rheumatoid arthritis... 

It would be reassuring if such false psychogenic disease attributions were a thing of the distant past, but sadly this is not the case - mainstream psychiatrists were actively treating peptic ulcers as manifestations of emotional problems as recently as the mid 1990s. It would be reassuring if such attributions only existed in the absence of strong physical evidence to the contrary, but sadly this is not the case - mainstream psychiatrists were still treating MS as a psychiatric disorder 80 years after the Sorbonne's Professor Jean-Martin Charcot had identified and documented the degenerative physiological brain changes at the core of this disease. 

The problem with the Companion To Psychiatric Studies is that it continues to perpetuate such false and absurd psychogenic attributions in the face of overwhelming contradictory evidence. Professor Tony Komaroff of Harvard University repeatedly explains to medical conferences that there are more than 4,000 peer-refereed journal articles pointing to the biological nature of ME/CFS, but Dr Michael Sharpe and his colleagues stick to their dogma that the condition should be characterised and treated as an emotional disorder. 

Dr Sharpe and his colleagues should think long and hard about the nature of the Hippocratic Oath that they swore to uphold.

23.

Pediatric ME and CFS Descriptions Summary

Children and adolescents have a more difficult time articulating their symptoms, and therefore often remain undiagnosed, misdiagnosed or frequently accused of school phobia, avoidance behaviors or other psychological  behaviors.  Or parents are accused of exaggerating, sensationalizing or of even being psychotic themselves, when indeed the child is suffering from a debilitating physical illness, and the parent feels helpless and desperate that doctors cannot detect the cause or provide any useful advice when the child is so profoundly ill.  The fact that routine lab tests often appear normal is a poor excuse for a pediatrician to dismiss a child as school phobic or a parent as overindulging, and not to do more in depth labs.

http://www.name-us.org/DefintionsPages/DefPediatric.htm#There_are_several_brief_references

24.

ARNIE'S STORY

A chronic disease robs children of many things, but it should never destroy the life-affirming refuge children find in their home, as it did with a boy named Arnie… because everything about Arnie was typical of CFS - a disease his doctor did not believe existed.

Karl Friedrich Hieronymus Baron von Munchausen was a German “soldier, adventurer, and a teller of tales,” according to one description, who lived from 1720 to 1797. His fantastic lies about his daring and conquests were so notorious that their memory survives to this day as German lore.

Medical science has borrowed from this ancient character’s name to categorize the patient who engages in equivalently tall tales, all having to do with physical illness. When a parent or caretaker makes up bizarre tales concerning the health of their child, doctors call it Munchausen’s syndrome by proxy.

Sometimes the parent intentionally harms their child, by poisoning for example, to create the symptoms. Experts suggest the parent is motivated by a need for attention, and get it they eventually do, one way or another.

Although it was the Baron who proved himself capable of such outrageous falsehoods, women are more vulnerable than men to being suspected as having Munchausen’s syndrome. And women are suspected of Munchausen's syndrome by proxy when doctors are unable to find a simple answer to a child's ills.

This is because women typically take the dominant role in helping children through the maze of doctor's visits, hospitalizations, and treatments when children fall chronically ill.

Every year, parents in this country and abroad face court hearings before judges and juries in which they are subsequently found guilty or innocent of intentionally harming their child due to Munchausen's syndrome by proxy.

Depending on the circumstances, the prosecutor, representing the state, may add fraud to the charges. Usually, the mother’s psychological competence becomes an issue of enormous significance in such a trial. If a child has been judged to have Munchausen’s syndrome by proxy by a psychiatrist serving as the state’s expert witness, the mother may face the removal of her child from her household, usually into foster care, as well as criminal charges.

The notion of a mother deliberately hurting her child is difficult for most of us to comprehend. Nevertheless, for some years now, Munchausen's syndrome by proxy has been accepted by the medical profession as bona fide, if somewhat baffling. And there is no question that it occurs. Hidden videotapes in hospital rooms show parents either injuring their children, or doing things that make it appear that a child is ill. What a world....

But, because this does occur, physicians have grown suspicious, particularly when confused by symptoms in the patient they treat.

With this in mind, imagine what might happen when a mother whose child suffers from an extremely complex, misunderstood - even overlooked - chronic disease, becomes an outspoken advocate for that child, struggling to explain her son’s illness to unsympathetic doctors and suspicious school officials. 

Imagine the situation from the perspective of the sick child, who can barely articulate to his friends, much less to an attorney or a psychiatrist, what ails him. Imagine how, over time, these quiet struggles can escalate, thrusting mother and child into a firestorm of accusations by authorities of all stripes, as they attempt to salvage their dignity and even their right to remain a family.

A chronic disease robs children of many things, but it should never destroy the life-affirming refuge children find in their home, as it did with a boy named Arnie.

Arnie was ten when he experienced the onset of CFS, but for much of his brief life he had suffered a seemingly endless succession of colds, allergies, sore throats, stomach aches, and headaches.

The doctors his parents took him to see somehow failed to notice a pattern of minor infections that, in retrospect, strongly suggested Arnie may have had a medical problem for some time before the symptoms suddenly escalated.

Instead it was attributed to an over-anxious parent worried about trivial illnesses. In July, 1990, Arnie’s heightened level of exhaustion, hitting him hard after an intestinal flu, heralded the onset of full-blown CFS.

By the time school began that September, Arnie was too weak to stand and was confined to bed. His mother took him to see a pediatrician numerous times, but the doctor was unable to explain Arnie’s profound fatigue.

Months passed, a period during which Arnie failed to receive either a diagnosis, or an education. By law, school systems are required to provide home tutoring to students who are too sick to come to school, but school systems also require that the child carry a diagnosis before they hire a private tutor using state dollars. Arnie had no diagnosis.

The school year ended, and another began.

Arnie was still house-bound because of the exhaustion. In every respect, he was absolutely typical of a child with CFS.

• He suffered from sore throats, headaches, sensitivity to light and blurred vision, pain in his muscles, joints, and lymph nodes.

• His ability to learn was diminished because of difficulties with memory and attention.

• He could not remember what he had read.

• His attempts to exert himself physically uniformly resulted in relapse, or worsening of his fatigue.

Eventually, doctors ruled out thyroid disease, lupus, multiple sclerosis, rheumatoid arthritis, HIV disease and hepatitis.

Some of these doctors did find immune abnormalities that suggested that Arnie was suffering from an on-going viral infection.

But the doctors believed that the abnormalities failed to fit a pattern associated with any particular disease – at least, any disease with which they happened to be familiar.

• Neurological tests revealed that Arnie suffered from vertigo and lacked the kind of fine motor control in his hands that might be expected of a boy his age.

• Other tests of intellectual capability demonstrated that Arnie’s short term memory and concentration skills were impaired.

All in all, everything about Arnie - his long history of illness, his physical exam, his laboratory tests - were typical of CFS, a disease his doctor did not believe existed.

It was just eight months after Arnie had become severely ill, however, that his parents began arguing about whether or not he was really sick.

Arnie’s father sided with the child’s pediatrician and other specialists, who had suggested that there was nothing medically wrong with the boy. Arnie’s father was particularly tired of paying for medical exams that failed to provide definitive answers. He believed his son needed psychiatric care.

Arnie’s mother felt differently. She did not believe the doctors. Instead, she began to explore unconventional treatments for her son, embracing, for a time, the “fringe” medicine offered by “ecologists,” naturopaths, and acupuncturists, each of whom seemed confident they understood Arnie’s problems, yet each of whom had a different explanation for them.

Arnie’s father thought these alternative healers were a bunch of loonies.

In time, the boy found himself at the hub of an escalating battle between his parents.

Large conflicts and petty complaints that had smoldered for years between the two adults erupted in a war centered on their son. Naturally, the boy tried hard to feel better in order to bring an end to the war. When his illness continued, in spite of his best efforts, he became withdrawn. And when Arnie’s father moved out of the house, Arnie assumed he had caused the break up.

A child sees the world from a simplistic, egocentric point of view. By the age of ten, children are better able to assess the relationship between cause and effect than they were at five, but the tendency to believe in a magical connection between one’s own actions and unrelated events has yet to vanish entirely at Arnie’s age.

Arnie’s parents made a mistake, too. They were unable to separate their private conflicts from their son’s illness, leaving him caught in the crossfire. What followed was probably inevitable: a kind of chain reaction in which a sick child became a battleground, fought over not only by his parents, but by the local school system, and, eventually, the state of New York.

As far as Arnie’s pediatrician and his teachers were concerned, the issues were clear.

Arnie seemed to be incapacitated with a slew of mysterious symptoms, just as his parents were in the process of divorce. These authorities believed Arnie was suffering a kind of psychiatric meltdown because of his parents’ acrimony.

According to the law of the land, if parents are causing a child’s illness - whether psychiatric or medical - then the parents are guilty of child abuse. In such cases, the law decrees that the appropriate social institutions intervene on behalf of the child, even removing the child from the destructive environment if necessary. In Arnie’s case, the vultures were beginning to swarm.

The principal of his school made several visits to the boy’s house during the first year he was absent, acutely aware that neither his parents nor his doctors had been able to offer the school a diagnosis. Each time she visited, Arnie was in the living room, seated, and watching television. He did not look sick to her.

The principal assigned a truant officer to the case.

The officer saw Arnie in his back yard one spring day, resting in a lawn chair, sipping lemonade. Finally, the school filed a truancy petition with the local court in order to force Arnie to return to classes. In addition, the local social services department launched an investigation of Arnie’s parents to determine if they were guilty of child abuse.

At the court hearing on the matter of truancy, the judge listened to the attorney representing the school argue that Arnie had been absent without good cause.

Arnie’s mother, representing herself, told the judge about her son’s medical condition. She called it chronic fatigue syndrome. She also described the holistic-style therapy of vitamins and herbs and acupuncture she had embarked upon to cure her son.

In turn, the impassive judge inquired about the impending divorce, as well as the custody hearing. Arnie’s parents had begun arguing about which one of them would raise their son after the divorce.

Not surprisingly, the judge, who knew of CFS only as the rather flaky sounding “yuppie flu,” concluded the hearing by ordering a psychiatric evaluation of Arnie. He also ordered Arnie to return to school.

The next day, two things happened, both of which ended in disaster: Arnie went to school, and his mother hired an expensive attorney.

At school, Arnie found to his dismay that his old friends greeted him with poorly concealed contempt. They had heard the rumors: Arnie was faking it. On the second day, the gym teacher decided that Arnie could benefit from exercise; the teacher believed exercise would shake the boy out of his long “slump.”

On the morning of the third day of this new regime, Arnie discovered he was once again too weak to get out of bed.

In the meantime, the lawyer hired by his mother had obtained Arnie’s medical records and had read them closely, paying special attention to the variety of opinions from specialists suggesting Arnie’s problem was psychosomatic.

The attorney made a unilateral decision: Assuming the doctors were correct that family turmoil had caused Arnie’s psychiatric problem, she decided to put her energy into helping Arnie’s parents obtain their divorce. 

At the court-ordered psychiatric evaluation, the doctor began by interviewing Arnie and his mother together. Arnie was dizzy, exhausted, and found it difficult to concentrate on the psychiatrist’s questions. His mother recognized her son’s distress, and consequently did most of the talking in order to help conserve his limited energy. Afterward, the psychiatrist asked to talk to Arnie without his mother present.

The exhausted child was slumped in his chair. It was flagrantly apparent to Arnie that the psychiatrist had believed very little his mother said, and, after her departure from the room, he became even more withdrawn, even hostile. He responded to the doctor’s queries in monosyllables. Finally, the psychiatrist talked to Arnie’s mother privately.

The woman tried to “explain” chronic fatigue syndrome to the psychiatrist, who eyed her warily.

Struggling to suppress her own feelings of despair, she spoke as enthusiastically as possible about the alternative medical treatments she was continuing to explore. She wanted the doctor to know just how hard she was trying to help her son get well. The psychiatrist concluded the interview eventually, leaving Arnie’s mother feeling uneasy.

Afterward, the doctor called her husband, who took the opportunity to tell the psychiatrist that his boy was fine. His wife was the sick one, he added.

A week later, the psychiatrist submitted his report to the court. At the end of a lengthy discussion, he unveiled his diagnosis: Munchausen’s syndrome by proxy.

Arnie 'looked well', the doctor had argued in his report.

In addition, Arnie was clearly depressed. He pointed out, too, that neither the boy’s father nor the boy’s doctors believed Arnie was medically ill, and that the child was at the center of a custody battle between divorcing parents. More critically, the psychiatrist noted, there existed an unusual degree of “enmeshment” between mother and son; Arnie’s mother had acted as his spokesperson during their interview.

Further, she had appeared enthusiastic, even cheerful. Clearly, she had created an environment of oppressive neediness that had driven Arnie to feign illness, and her subsequent “over-involvement” with her child’s illness stemmed from this deviant desire to be needed.

The judge ordered that Arnie be removed from his mother’s custody and placed in a foster home.

He ruled that the final determination of Arnie’s fate would be decided in the custody hearing. He also demanded, for a second time, that Arnie return to school and receive twice-weekly psychiatric counseling. In a small concession to the boy’s claim of illness, the judge ruled that Arnie could be excused from gym class.

One week later, Arnie swallowed a handful of aspirin and several sleeping pills he discovered in his foster mother’s medicine chest. He was admitted to a psychiatric hospital immediately afterward. Though it had never been Arnie’s specific intent, his suicide attempt had confirmed beyond all doubt the diagnosis of the court’s psychiatrist, school officials, and the judge who had presided over his truancy hearing: He suffered from a serious psychiatric illness.

Arnie’s incarceration and resulting isolation would have been considerably less had he robbed the corner grocery store.

• The psychiatric hospital administrators forbade his mother to visit him; after all, she had fostered the imaginary illness in her son, then encouraged his belief in it.

• Hospital doctors ordered him to submit to counseling sessions, sessions during which he found it hard to avoid confessing his depression. Such confessions only served to strengthen the prevailing view that his bizarre “illness” was psychiatric in origin.

• Arnie was given large daily doses of tricyclic antidepressant medications, a class of drugs that often increase fatigue in CFS sufferers. When Arnie complained that the drugs made him feel worse, staff at the hospital simply ignored the complaints.

• They further demanded that he participate in all the ward activities. Arnie followed the path of least resistance, dragging himself from project to project without comment, but he felt as if he was dying a slow death.

In short, Arnie was snared in a trap worthy of Franz Kafka’s imagination.

He would remain incarcerated and drugged until he was successfully rehabilitated, which chiefly meant renouncing his absurd belief that he was sick.

Doctors like to solve problems. They like to make people well. Nothing makes them happier. Sadly, when they fail, their universal fallback position amounts to blaming the patient for his or her own disease. Even when the evidence points in the opposite direction, doctors frequently come up with psychological diagnoses in the absence of clear answers.

Children may be the most vulnerable of all to such treatment. It’s hard for them to fight for their rights, or make the case for their own sanity. Pediatricians, when flummoxed by their small patients’ complaints, tend to cast a suspicious eye at the child’s home environment: If the parents are in distress, pediatricians are provided with a convenient explanation for mysterious symptoms in the child.

As a pediatrician, I recognize the legitimacy of including the status of a child’s home life in my differential diagnosis - the decision tree I work from as I search for the correct diagnosis. But I do not automatically exclude the possibility of medical illness in a child because his parents are on the verge of a divorce, or if a grandmother died.

Just as it is possible to have child with diabetes living within a family in turmoil, it is possible to have a child with CFS living within a family in turmoil. Family dysfunction has its own signature; it creates its own particular pattern of difficulties in children, and these problems are very different from the problems of CFS.

Demanding that a diagnosis of CFS may be made only in perfect families makes no sense at all.

In truth, family problems are common, and with the additional stress of a chronic illness in a family member, families can even fall apart. In my view, psychological diagnoses need to be made with the same specificity and accuracy as medical diagnoses. It is not enough to pull a psychological diagnosis out of your hat if you are stumped. It is necessary to be a good doctor. Of course, the attribution of the psyche to the cause of physical illness is hardly a new phenomenon, especially in children.

Autism is a severe neurologic disease of childhood, but for many years doctors ascribed autism to family dysfunction.

We now understand that autism has nothing to do with poor parenting; it is an organic disease.

Like medicine, psychiatry has a spotty history. Perhaps the most classic example of psychiatric miscalculation was the belief, in earlier centuries, that “shock,” - the dire condition we recognize today as the result of a dramatic loss of blood - was due to a “shock” to the emotions. Early psychiatric literature stated that the thready pulse, pale face, clammy hands, and drop in blood pressure - classic shock symptoms - are the result of an emotional shock, likely a reaction to the shock of the sight of blood.

During the American civil war, however, a doctor noted that this emotional condition called “shock” was quickly followed by death among soldiers who were mortally wounded on the battlefield. He reasoned and later proved that shock was a physiologic abnormality caused by blood loss. Imagine telling someone who has just been shot in the chest to snap out of their blues and pull themselves together.

I am not going to debate the legitimacy of Munchausen’s syndrome by proxy. It exists, a sad commentary on modern society. But the diagnosis of Munchausen’s is made by obtaining absolute proof of a parent inflicting conscious and active harm on their child. Frequently, hospital administrators who suspect a parent of Munchausen’s will install a videotape in the room of the young patient in order to acquire irrefutable evidence of a parent committing such harm.

In Arnie’s case, neither the court nor school officials bothered to offer proof of his mother’s intent to cause harm, or even actual harm, no doubt because they had no proof. 

Their actions were based on conjecture.

Even putting aside medical arguments, common sense tells us that Arnie's the activity limitation is not due to suggestions from his mother. Adolescents are known for being rebellious and not doing what their parents tell them to do. Sometimes I have a hard time getting my son to clean his room. How could a parent tell a child to be tired all the time and stay sitting in a chair?

Fatigue caused by Munchausen’s syndrome by proxy is a legitimate diagnosis only if the parent is secretly feeding their children barbiturates or poison, and this can be easily tested.

In my view, the mother’s so-called “enmeshment” in her son’s illness was an attempt to protect her child from the authorities in the school system, the legal system, and the medical establishment, who understood absolutely nothing about the disease from which he suffered. I believe she should have been guilty of child abuse if she had been indifferent to her son’s suffering.

It would be wonderful if I could report here that Arnie’s story is a singular one. Unfortunately, these events are becoming increasingly common as more and more children and adolescents fall ill with CFS.

The medical establishment and our federal health agencies are digging in their heels, so to speak, hewing with vigor to the mistaken belief that CFS is psychiatric in origin. As a result, more and more children who suffer from CFS are being diagnosed with Munchausen’s syndrome by proxy, and the courts are remanding them to foster homes.

Arnie’s attempted suicide attempt, under such conditions, is hardly uncommon, either. Too often, children with CFS who have been taken from their homes, told they are imagining their illness, and sent to live in strange homes with adults who refuse to acknowledge their symptoms and disability, find death to be a better option.

Like Arnie, these sick children frequently end up in psychiatric institutions, deprived of the comfort of the parent, or parents, who may be the only people who understand they are ill.

Failure to diagnose an illness is, in some circumstances, malpractice. Failure to properly diagnose Arnie resulted in a forced separation from his mother - his only advocate - and his subsequent suicide attempt and incarceration. For Arnie, failure to diagnose had serious consequences.

The existence of CFS has been confirmed by the National Institutes of Health and the Centers for Disease Control. There continues to be legitimate debate as to what causes the illness, but to deny its existence because of a collective failure to understand its cause is inexcusable.

The American Academy of Pediatrics has stated that at least one part of its mission is to act as advocates for children. On the contentious matter of CFS, which afflicts thousands of children and adolescents, however, the Academy has remained silent. I believe the Academy’s silence is equivalent to child abuse. Our court systems have an obligation to protect the young and the helpless. Our courts, however, take their advice from the medical profession.

There are many forms of child abuse: neglect, physical abuse, sexual abuse... I would like to suggest that the term "medical abuse" be used when children are directly hurt by apathy or ignorance of health care providers.

Not the ignorance expected prior to scientific discovery, but ignorance defined as refusal of accepted fact. We are not talking about a new religion here, CFS has been recognized and studied in this country for nearly 20 years [now 30].

In the villages of ancient Europe, citizens believed that hitching four widows to a plow and forcing them to labor through the night would ward off epidemics of plague and influenza. Some day, the current apathy, perhaps more accurately, the silence, that veils the existence of CFS, will be considered medical barbarism on a grand scale, and just as ridiculous as hitching widows to a plow.

Arnie is 19 years old now, and remains disabled by CFS.

His incarceration in the psychiatric institution lasted six months, after which he lived in foster care for another several years. He has reunited with his mother, and is at last receiving basic symptomatic care for his illness.

- Dr. David S Bell, MD, Lyndonville, New York, August 15, 2000
____
From Prohealth :
* This article is excerpted with kind permission from Dr. Bell’s classic book Faces of CFS - Case Histories of Chronic Fatigue Syndrome; © David S Bell, MD, 2000. It may be downloaded as a free eBook at Dr. Bell’s website www.davidsbell.com/DSBFaces.htm

http://www.prohealth.com/library/showarticle.cfm?libid=16108