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Read Putting research and articles into context and A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy
Before reading the research/advocacy information given in the links below, please be aware of the following facts: 2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context.
1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.
A very small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.
In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.
2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context.
A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome by Dr Byron Hyde 2006
Children Fall Ill with Myalgic Encephalomyelitis: Knowing about the Akureyri epidemic and the Cumberland epidemic, it is curious that there should be any debate in the UK or anywhere else that M.E. is also a disease of children. In March 2006 I was in court giving evidence for a M.E. patient and Dr Salit who frequently sees M.E. patients for the insurance industry and who attended against the patient, made the statement that children do not fall ill with M.E. He uses the term CFS since as he stated, no physician of merit uses Myalgic Encephalomyelitis. He obviously does not appear to know the history of this illness.
The diagnostic problem of identification of M.E. illness is totally social. Why are these children and their parents too often conveniently diagnosed as psychiatric cases? Rather than separating the children from the mothers, rather than calling the parents examples of Munchausen’s-by-proxy they could be and should be investigated and they are not.
How should these children and adults be investigated? If they truly have brain dysfunction as I say they do, then their brain function should be abnormal, this should be measurable and these patients should be investigated. Only if we subgroup these patients can we begin to scientifically treat them.
It should also be remembered that the body, its systems (such as the gastrointestinal system, the muscular system, the endocrine system, the cardiovascular and vascular systems) and its organs are dependent and their actions largely controlled by the brain. If the brain is physiologically injured, then so is the body. Depending upon which parts of the brain are physiologically injured different parts of the body will also be caused to malfunction.
Today, any children or adults with the symptom picture of chronic ongoing Myalgic Encephalomyelitis do not have to die in order for us to examine their brains; we can examine their brains with technological instruments. Let us for this moment only consider the children. All of these children, and the medical and scientific community as well, could benefit if funds were dedicated for the complete and integrated physical and technological examination of these victims. I call them victims since I believe the medical community as a whole have abandoned them, both children and adults. Lack of progress in developing both scientific and medical understanding and treatment protocols are what I believe to be the result of medical and psychiatric arrogance.
Disease Resembling Poliomyelitis: 1947-1948: Akureyri Disease: This epidemic was described by J Sigurjonsson in Iceland as a Disease Resembling Poliomyelitis. Much to the disagreement of Sigurjonsson and other physicians in Iceland this disease came to be called Akureyri Disease. It was very similar if not identical to later epidemics of Myalgic Encephalomyelitis.
This epidemic started in a local residential school that was located a few hundred feet north of the hospital refuge dump. The epidemic started shortly after the return to school for the autumn session and probably followed significant immunization. Since the epidemic started among school children before it spread to the adults and then to neighbouring towns, there should be no controversy that this type of illness effects children. As in the LA epidemic, the disease manifested both diffuse central and peripheral nervous system symptoms. It was termed an "itis" or an inflammation of the nervous system. This was the first epidemic to demonstrate that we were dealing with a diffuse brain injury and specifically in the area that affected normal sleep and normal muscle physiology. Almost no patients died but all were left disabled and in many cases the disability persists until today, 55 years later.
Three children from this epidemic in the town of Friedrickshavn, became moribund and were unable to leave their beds, they eventually died of Parkinson's-like illness and were autopsied. Parkinson's Disease is almost unheard of in children. There can be no doubt that we were dealing with a diffuse inflammatory brain injury and at least some of these cases, involved the basal ganglia. However for the large number of those who fell ill in Akureyri and neighbouring towns on the north shore of Iceland, the symptoms and signs were those of Myalgic Encephalitis and it was a disease that trapped both child and adult in its icy grips. All true disease processes have variability from minor to major illness, from acute to chronic sequelae. I have seen at least two children in the UK who fell ill with M.E. but could have just as well be diagnosed as Von Economo's Encephalitis-like or Parkinson's-like illness.
The incubation period from time of contact with the infection until the appearance of the illness is approximately 4-7 days,
In its epidemic form M.E. was most commonly seen in (a) Health Care Workers, (b) children and older students in residential schools, nurses residences and hospitals, (c) in military barracks where students or soldiers were housed in close proximity further supporting the belief in its infectious nature.
Although M.E. was not caused by poliovirus in the Akureyri epidemic, infection with M.E. somehow protected the patients from the polio epidemic that swept though Iceland in the 1950s. Polioviruses represent three of approximately 100 different enteroviruses. This was the reason why many in the UK believed that some of these epidemics were probably caused by a less lethal non-polio form of enteroviruses such as ECHO, Coxsackie, the numbered and new enteroviruses.
M.E. is not caused by the Epstein Barr virus: The Lake Tahoe epidemic that started in August 1984 also started amongst students. In this case the epidemic began in a high school girls' basketball team that was travelling in a bus to play various other teams. The epidemic spread rapidly with an incubation period of approximately a week. As in many of the other epidemics, it then spread to the general community. After the epidemic started it then involved three high schools, both students and teachers and ultimately spread to the community. For some reason it was considered to be an epidemic of infectious mononucleosis. This is an illness caused by a virus Epstein Barr Syndrome. Associating the Lake Tahoe epidemic with Epstein Barr Syndrome was frankly ridiculous and you will see why almost immediately. Anyone who realizes that infectious mononucleosis is caused by the herpes family virus, Epstein Barr Virus (EBV), and that the incubation period of this illness is approximately 40 days, should have realized that you simply cannot have a rapidly spreading viral epidemic with a virus with a latent period of 40 days. Neither Dr Straus nor Dr Holmes, senior government physicians, should have fallen into such a trap. They only had to go to the excellent CDC library to realize that rather than spending half a million dollars or so on a publication that they should have known would not have incriminated EBV.
Yet this epidemic somehow spread the myth that this illness was caused by EBV. Today, as I write this short history of M.E. the vast majority of physicians and the public still associate Epstein Barr Virus with [M.E.]. Such is the perseverance of error.
M.E. is not caused by Human Herpes Virus 6: This virus was not associated with [ME] until after the 1990 period. HHV6 is the virus that causes the benign childhood illness, Roseola. By 1986 HHV6 was already known to have an incubation period of 9 days due to human experimentation when the actual virus was injected into several children. See (Gorbac, Second Edition, Infectious Diseases, page 1335). When acquired by random infection, the incubation period of HHV6 Roseola was more like 12 days. So once again anyone with access to a library or a computer would have soon dispelled any view that HHV6 was a cause of M.E. epidemics where the incubation was approximately 7 days or less.
Is it possible that Steven Strauss and the other intelligentsia of the National Institute of Health (NIH) in Bethesda and CDC in Atlanta and elsewhere didn't have access to libraries and the Internet? Maybe we should start a public request to ask for donations for them.
Are M.E. and CFS Synonymous Terms? Dr Byron Hyde
Myalgic Encephalomyelitis (M.E.) This is a term used to describe an epidemic and sporadic disease process that is associated with a chronic debilitating illness of children and adults.
A million stories untold by Jodi Bassett
So little is known by the public about this illness. This is hardly surprising when it’s common for journalists to produce articles on this illness that do not contain even a single fact! Few people are aware that M.E. not only affects people individually, but that there have been many documented outbreaks of the illness. Most people also have no idea of the brutal severity of M.E., or the deaths from M.E., or that M.E. affects children as young as 5 as well as adults, or the wide array of serious and disabling symptoms that are associated with M.E. or that people with M.E. would give anything to instead be merely very ‘fatigued’ or ‘tired all the time.’
M.E. has a similar strike rate to multiple sclerosis (or possibly somewhat higher), and is estimated to affect roughly 0.2% of the population. Children and teenagers are also susceptible to the illness and children as young as five have been diagnosed with M.E. M.E. affects all races and socio-economic groups and has been diagnosed all over the world. There are more than a million M.E. sufferers worldwide (Hooper et al. 2001 [Online]) (Hyde 1992, pp. x - xxi).
As if medical abuse and neglect weren’t enough to deal with, the propaganda surrounding M.E. can also lead to abuse and even ridicule from the friends and family of people with M.E. This is a very common problem facing people with M.E. (including myself, in the past). I often wonder if these friends and family members would act the same way if these people multiple sclerosis rather than M.E. With some I think not, but with others….I think some people just like to pick on those less able to defend themselves and the whole ‘CFS’ propaganda mess, and the confusion between M.E. and CFS, is just a convenient excuse. As one M.E. sufferer explains:
In spite of ample evidence to the contrary, some people will simply prefer to believe that [M.E.] and other disabilities are nothing more than depression and hysteria. In my own opinion, such people find that it serves their own purposes better to think that way. They are mere opportunists (Rotholz 2000, p. 228).
But it is the children with M.E. and their families who perhaps pay the highest price for the ignorance about this illness. Because it is harder to pin the blame for the illness on depression or anxiety with children, the parents are often blamed instead. Parents of these ill children have been charged with neglect or accused of actually making their children ill themselves. Some parents have lost custody and their children have been placed in foster care. All of this while the child continues to be seriously ill and not receive any sort of appropriate medical care. There are also other serious problems for the child:
Misdiagnosing M.E. as school phobia, depression, or separation anxiety or chalking it up to family problems places the blame squarely on the shoulders of he child. When adults experience this kind of scepticism, they usually are able to defend themselves against the mistaken ideas of others. Children are unable to do so; they depend on adults for information, explanations, sympathy and advice. To throw disbelief in the face of a child who not only has all the symptoms of M.E. but is terribly frightened and in profound need of reassurance is not only cruel, it is detrimental to the child's future emotional growth. Though school officials and doctors may attribute the child’s complaints to psychological causes, they seldom can back up their opinions. School phobia, for example, is a manifestation of separation anxiety. Children with separation anxiety display symptoms when anticipating separation but which resolve when separation does not occur. In M.E., symptoms are present not only during school hours, but after school and on weekends as well. Also, symptoms such as fever, lymph node pain, night sweats, and muscle and joint pain are not features of school phobia. Those who are apt to diagnose depression run into the same inconsistencies. . .Children with M.E. can become depressed, but usually do so because no one believes they are ill. (Verillo & Gellman 1997, p. 327)
As one advocate writes, ‘The real losers in this blame game are the children. . . The focus [has shifted] away from the arduous and tedious work of making children well again. Let’s get on with it’ (Munson, M. 2000 p. 194).
However inconvenient it may be, Myalgic Encephalomyelitis is a devastatingly severe physical illness with no cure, and more than a million victims who have had to put up with not only being severely ill but with abuse and social disbelief about their condition as well as an almost total lack of appropriate medical and other support. This massive scientific fraud has to stop.
Sub-grouping different types of ’CFS,’ refining the bogus ‘CFS’ definitions further or renaming ‘CFS’ with some variation on the term M.E. would achieve nothing and only create yet more confusion and mistreatment. The problem is not that ‘CFS’ patients are being mistreated as psychiatric patients; some of those patients misdiagnosed with CFS actually do have psychological illnesses. There is no such distinct disease/s as ‘CFS’ – that is the entire issue, and the vast majority of patients misdiagnosed with CFS do not have M.E. and so have no more right to that term than to ‘cancer’ or ‘diabetes.’ The only way forward, for the benefit of society and every patient group involved, is that:
1. The bogus disease category of ‘CFS’ must be abandoned completely. Patients with fatigue (and other symptoms) caused by a variety of different illnesses need to be diagnosed correctly with these illnesses if they are to have any chance of recovery; not given a meaningless Oxford or Fukuda ‘CFS’ misdiagnosis. Patients with M.E. need this same opportunity. Each of the patient groups involved must again be correctly diagnosed and then treated as appropriate based on legitimate and unbiased science involving the SAME patient group.
2. The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the World Health Organization classification of M.E. (as a distinct neurological disease) must be accepted and adhered to in all official documentations and government policy.
So what can you do to help?
If you know someone with M.E. the first thing you can and must do is to start treating them as is appropriate for the illness they actually have; an organic illness similar to multiple sclerosis, Lupus and polio that can often be far more disabling and severe than almost any other illness and which can worsen in the short and long-term with repeated physical, cognitive or orthostatic overexertion.
People with M.E. have only a tiny minority of the medical, scientific, legal and other potentially supporting professions – or the public, including their own friends and family members – on their side. As the Committee for Justice and Recognition of Myalgic Encephalomyelitis explain:
There is no immunity to M.E. The next victim of this horrible disease could be your sister, your friend, your brother, your grandchildren, your neighbour [or] your co-worker. M.E. is an infectious disease that has become a widespread epidemic that is not going away. We must join together, alert the public and demand action (2007, [Online]).
The ‘CFS’ insurance scam will be fully exposed, there is no doubt about that. But the question of WHEN this will happen is entirely up to us, and how willing we are to stand up and refuse to accept this injustice any more. That is what is needed; people from all over the world to stand up for the truth about Myalgic Encephalomyelitis. Individual physicians, journalists, politicians, human rights campaigners, patients, families and friends of patients and the public – whether they are affected yet by M.E. or not. That is the only way change will occur; through education and people simply refusing to accept what is happening any more.
So PLEASE help to spread the truth about Myalgic Encephalomyelitis. This appalling abuse and neglect of so many severely ill people on such an industrial scale is truly inhuman and has already gone on for far too long. People with M.E. desperately need your help.
Who will protect the children: Review by Gurli Bagnall
"Who 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:
"Nothing I had researched before could have prepared me for the dark reality of doctors who set out deliberately to destroy minds and bodies they were trained to heal."
It 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. The cold, hard deliberateness with which the extensive scientific evidence of the physical nature of ME is routinely dismissed or ignored, goes beyond abuse. It speaks of an agenda that is not concerned with patient welfare.
While 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. It 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
That the situation is no better in Australia, was highlighted by the father of Jenny who suffers ME.
Jenny 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. Thereafter she spent her time between two hospitals and a pattern emerged.
A 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. When Jenny complained, her symptoms were invalidated. When her parents advocated on her behalf, they were told that they were undermining the hospital. Some typical words of "encouragement" made by the hospital staff:
"You're doing this so you don't have to go to school." (She loved school.)
"When are you going to get a life?"
"Ninety percent is in your head. You're not trying! You're not pushing!"
"I'd like to give you a kick up the bum!"
Jenny 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."
"I'm the doctor and you're the patient. I can con your parents into keeping you here."
"You've regressed to a five year old."
This judgement was based on the soft toys that had been given to her. When 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. If she cried she was told she was depressed. If she smiled, she was told that there was such a thing as smiling depression.
Some recorded medical opinions while in hospital:
At 6 weeks the diagnosis was changed to Pervasive Refusal Syndrome.
At 5 months, the mother was deemed to be an "illness model".
At 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.
At 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.)
Conflict between the parents and medical staff over psychiatric treatment was recorded. Jenny's struggle with the medical staff was "an end in itself" and that inpatient treatment "encourages her to prove how ill she is." At 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.
At 20 months a new diagnosis was made - psychosomatic disorder. Jenny was discharged but contact with the hospital continued, presumably on instruction. At 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. There 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 deconditioning and psychosomatic disorder. In 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 order.
That 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.
The effects of CBT and GET on patients with Myalgic Encephalomyelitis by Jodi Bassett
Dr Dowsett states about M.E. patients that, ‘20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led to sudden death following exercise.’
According to Dr. Elizabeth Dowsett, any M.E. patient can also be stopped from deteriorating further and at least stabilised (if not in time experiencing some level of improvement) through receiving appropriate care and being allowed to get the needed level of rest (providing that the patient has not already been exposed to unrecoverable levels of overexertion) (Dowsett & Ramsay et al. 1990) (Dowsett 2000, [Online]) (Dowsett 2001a, [Online]) (Dowsett n.d.b., [Online]). Dr. Elizabeth Dowsett also explains that:
Scientific discoveries recently reported, indicate that embryonic stem cells left over from foetal development, remain in the brain tissue during adult life and are capable of “running repairs” (thus patients are able to recover after head injury, stroke and relapse in ME). However, overuse of these repairs, as in ME (when the patients are overstressed [overexexerted] physically or mentally) will cause unnecessary deterioration which may then become irreparable. Intervention in the form of financial, rehabilitation and nutritional support can do much to prevent the physical, occupational and other deterioration in the quality of life for a large group of patients now between 40 and 60 years of age, to say nothing of educational loss in children.
HEALTH SERVICE INTERVENTIONS: It is sad to read that these are said to be of dubious priority in the present state of the NHS when it is known that the correct type of rehabilitation can stabilise the illness. This requires access to local facilities without discrimination against patients with a diagnosis of ME, together with a domiciliary nursing service for the bed-bound who are unable to travel ( 2002b, [Online]).
M.E. expert Dr. Elizabeth Dowsett explains about CBT: ‘Whereas any regime which can encourage patients with depression to discard or distract their damaging unrealistic morbid thoughts is helpful, patients with ME are usually capable of greater insight and understanding about their illness. Unfortunately, ME sufferers are too often denied care in our society, so it is essential that they should remain as well informed as possible about treatment options and not ‘brainwashed’ into disbelieving their own symptoms’ (n.d.a. [Online]).
It is undoubtedly children with M.E. and their families who pay the highest price where CBT is involved however. Children with M.E. are not exempt from such ‘therapy’ and this is often far more detrimental to children as compared to adults. As M.E. authors Verillo and Gellman explain:
Misdiagnosing [M.E.] as school phobia, depression, or separation anxiety or chalking it up to family problems places the blame squarely on the shoulders of he child. When adults experience this kind of scepticism, they usually are able to defend themselves against the mistaken ideas of others. Children are unable to do so; they depend on adults for information, explanations, sympathy and advice. To throw disbelief in the face of a child who not only has all the symptoms of [M.E.] but is terribly frightened and in profound need of reassurance is not only cruel, it is detrimental to the child's future emotional growth (Verillo & Gellman 1997 p. 327).
The rate of clinical depression seen in M.E. is similar to, and not higher than, that seen in comparable illnesses such as rheumatoid arthritis. (Of course, depression is a common disease, and it does not make you immune from other diseases. So some patients with depression will also end up having other conditions as well, over time. This includes M.E., plus MS and Parkinson’s and all other diseases.) Feelings of sadness and grief in M.E. are caused the loss of health, lifestyle, social role and financial means as well as the social stigma and severe abuse and neglect from friends and family and the medical profession that is so often an inescapable part of having M.E. (Stein 2005, [Online]).
Equally concerning is the fact that because it is harder to pin the blame for the illness on depression or anxiety with children, the parents are often blamed instead. The ‘family dynamic’ may be blamed for causing the child’s illness and parents of these ill children have actually been charged with neglect or accused of actually making their children ill themselves (Munchausens by proxy). Some parents have lost custody and their children have been placed in foster care. Children have also been forcibly removed from the home and forced to undergo CBT and GET (and worse). All of this while the child continues to be seriously physically ill and not receive any sort of appropriate medical care (Hooper et al. 2001, [Online]).
Although a minority of M.E. patients will have a clinical depression, more often some patients are instead dealing with natural and expected levels of grief and sadness for what they have lost. If these feelings are present, they are not evidence of a psychiatric disease but simply is a normal and healthy reaction to an extremely distressing life experience and extreme levels of physical suffering. The only ‘treatment’ needed is an improvement in the severity of the condition, and in many cases probably also greater levels of appropriate medical, financial and/or social support. As one longtime M.E. sufferer explained, ‘The desperation one gets periodically from being so ill is not at all the same thing as 'clinical depression'. Give me an even somewhat better day physically – and my mood improves quickly and dramatically!’
This medically unsupportable and abusive form of CBT can undoubtedly cause significant psychological harm, but it is these additional associated burdens; physical relapse lasting months, years or longer, the risk of death through overexertion in some severely affected patients, the withholding of basic medical care, the removal of children from their parents and parents being falsely charged with making their children ill themselves (etc.) which combine to make this form of CBT so harmful. Thus the negative effects of CBT can sometimes be equally as devastating as those of GET, or in some cases, worse (for sufferers and their families).
Clearly, CBT and GET are at best useless and at worst extremely harmful for M.E. patients.
M.E. is not a short-term or ‘hit and run’ viral attack; it is not a self-limiting post-viral fatigue syndrome caused by mononucleosis/glandular fever, Q fever or hepatitis, or any other common infection. Nor is M.E. a psychological or behavioural condition, or a problem of mere ‘chronic fatigue’ or deconditioning. M.E. is also not medically unexplained, or the same thing as ‘CFS.’ M.E. cannot be improved through psychotherapy or graded exercise therapy. These theories have been comprehensively disproven many times over with regard to authentic M.E. patients.
Despite this, people with M.E. are routinely being recommended these treatments while also being assured that they are completely safe. These treatments are also not just being offered to M.E. patients solely on a voluntary basis; many have been treated as psychiatric patients against their will. (Or against the will of the parents of children with M.E., as described previously). It is also of great concern that many M.E. patients are ONLY offered ‘treatments’ such as CBT and GET – while access to even basic appropriate medical care is withheld. Enough people with M.E. have had their long-term quality of life destroyed – or have been killed – by inappropriate use of these interventions.
If any drug caused even a very small percentage of the devastation GET causes in M.E. patients – let alone that it also had a zero percent chance of success – it would be immediately recalled. It would be an enormous worldwide scandal, and there would be some form of inquiry and serious criminal charges may well be laid. Yet the rate of people with M.E. recommended or even forced to exercise continues to rise, and with the full support of government, the mainstream medical community and the media.
This is despite the fact that legitimate research and evidence clearly shows that it has a ZERO percent chance of providing any benefit to people with authentic M.E. Patients with M.E. are regularly coerced or forced to undertake a huge level of risk, including significant risk of death or severe long-term disablement and permanent damage, for zero chance of any gain. All because of financial vested interests controlling science, and completely different mixed patients groups being used to determine the treatments appropriate for an entirely different and unrelated homogenous patient groups.
That this can be allowed to happen in such a supposedly enlightened day and age as ours defies belief: It amounts to legalised medical torture and horrific long-term abuse of some of our most vulnerable members of society.
People with M.E. must again be treated as is ethically and scientifically appropriate, and not merely in a way designed to suit certain political and financial considerations. What is happening today to people with Myalgic Encephalomyelitis is a gross violation of basic human rights. This has to stop, it has to BE stopped.
Suppose that, in the 'bad old days' before polio vaccination, a parent whose child had died had been told: "She stopped breathing on purpose you know." A public outcry would surely have ensued. And imagine if the next remark had been: "Tell me, did you encourage her in this belief that she couldn't breathe?" The mere idea of such an attitude, quite properly, takes the breath away. Yet children with severe ME, unable to walk or even to eat, are often considered to be shamming and all sorts of bizarre startegies have been used to try to expose this. Some have been left lying on hospital floors in an attempt to make them get up and put themselves to bed; some have been told that their parents do not want them at home until they behave and stop pretending to be ill; some have been refused liquid feeding and starved in an attempt to make them eat when they have lost the ability to swallow. And their parents have been suspected in colluding in, if not causing, a phantom illness. All this is happening because of the tragic conviction that these children are psychologically rather than physically ill. [...] How is it that we could think that pain and severe disability is such a desirable state to be in that thousands of children all over the country would choose, quite independently of one another, to invent it? Jane Colby in ME: The New Plague (p22) In the mid 1980’s, the incidence of M.E. had increased by some seven times in Canada and the UK, while in the USA a major outbreak at Lake Tahoe (wrongly ascribed at first to a herpes virus) led to calls for a new name and new definition for the disease, more descriptive of herpes infection. This definition based on "fatigue" (a symptom common to hundreds of diseases and to normal life, but not a distinguishing feature of myalgic encephalomyelitis) was designed to facilitate research funded by the manufacturers of new anti-herpes drugs. However, a "fatigue" definition (which also omits any reference to children) has proved disastrous for research in the current decade. Research into M.E. 1988 - 1998 Too much PHILOSOPHY and too little BASIC SCIENCE! by Dr Elizabeth Dowsett A unique study of biochemical markers in the blood of children with ME/CFS
Suppose that, in the 'bad old days' before polio vaccination, a parent whose child had died had been told: "She stopped breathing on purpose you know." A public outcry would surely have ensued. And imagine if the next remark had been: "Tell me, did you encourage her in this belief that she couldn't breathe?" The mere idea of such an attitude, quite properly, takes the breath away. Yet children with severe ME, unable to walk or even to eat, are often considered to be shamming and all sorts of bizarre startegies have been used to try to expose this. Some have been left lying on hospital floors in an attempt to make them get up and put themselves to bed; some have been told that their parents do not want them at home until they behave and stop pretending to be ill; some have been refused liquid feeding and starved in an attempt to make them eat when they have lost the ability to swallow. And their parents have been suspected in colluding in, if not causing, a phantom illness. All this is happening because of the tragic conviction that these children are psychologically rather than physically ill. [...] How is it that we could think that pain and severe disability is such a desirable state to be in that thousands of children all over the country would choose, quite independently of one another, to invent it?
Jane Colby in ME: The New Plague (p22)
In the mid 1980’s, the incidence of M.E. had increased by some seven times in Canada and the UK, while in the USA a major outbreak at Lake Tahoe (wrongly ascribed at first to a herpes virus) led to calls for a new name and new definition for the disease, more descriptive of herpes infection. This definition based on "fatigue" (a symptom common to hundreds of diseases and to normal life, but not a distinguishing feature of myalgic encephalomyelitis) was designed to facilitate research funded by the manufacturers of new anti-herpes drugs. However, a "fatigue" definition (which also omits any reference to children) has proved disastrous for research in the current decade.
Research into M.E. 1988 - 1998 Too much PHILOSOPHY and too little BASIC SCIENCE! by Dr Elizabeth Dowsett
A unique study of biochemical markers in the blood of children with ME/CFS(from MERGE)
Estimates vary but there are probably around 20,000 children with ME in the UK alone, yet some doctors do not recognise the problem, and fail to investigate it...
If the scientific study of ME in adults is sparse given the extent of the problem, in terms of children it is almost non-existent
Long-term sickness absence due to ME/CFS in UK schools: an epidemiological study with medical and educational implications.Dowsett EG, Colby J. Journal of Chronic Fatigue Syndrome 1997; 3(2): 29-42.
Abstract:A study was made to determine whether the recognition of multiple cases of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in one school is a unique experience. A five-year retrospective period prevalence survey (1991-1995) was collated from sequential reports made in six English Local Education Authority (LEA) areas. By means of a confidential questionnaire circulated to 2,942 school principals via internal mail, 1,098 schools, comprising 27,327 staff and 333,024 pupils, were investigated. Details were obtained on age, gender, location in school sector, work pattern and morbidity. Forty-two percent of all medically certified long-term sickness absence was ascribed to ME/CFS, this figure being well in excess of all other causes. This diagnosis was significantly associated with case clustering, variable geographical prevalence, a marked increase in the female:male case ratio at puberty and prolonged disturbance of educational potential. We conclude that ME/CFS in schools leads to serious economic and career problems> Redirection of research to special educational needs and to early diagnosis of infectious agents which can trigger ME/CFS in schools might prevent, at low cost, much chronic illness and education deficit.
NeuroSPECT findings in children with chronic fatigue syndrome. Goldberg MD, Mena I, Darcourt J. Journal of Chronic Fatigue Syndrome 1997; 3(1): 61-67.
Abstract:BACKGROUND. NeuroSPECT studies have described specific abnormalities in cerebral perfusion in adults with criteria for Chronic Fatigue Syndrome. This reports findings in 13 children with criteria for Chronic Fatigue Syndrome. OBJECTIVE. NeuroSPECT findings in 13 CFS/CFIDS children. METHODS. Thirteen children meeting CDC criteria for CFS/CFIDS were evaluated using NeuroSPECT imaging utilizing Xenon 133 and Tc-99m-HMPAO (1). RESULTS. In 13 children, hypoperfusion was observed at 42 ± 10 ml/min/100g, p<0.0001 in the left temporal lobe and at 45 ± 11, p<.001 in right temporal lobe. Statistically significant hypoperfusion was also obsered in both parietal lobes and at 50 and 53 ml/min/100g, p< 0.05 in the frontal lobe of the right hemisphere. Quantitated HMPAO demonstrated bilateral orbitofrontal and anterior temporal hypoperfusion. There was also hypoperfusion in the dorsal aspects of both frontal lobes and both parietooccipital lobes. CONCLUSION. NeuroSPECT is presented as a quantifiable, reproducible tool that can allow us to document a cohort of children defined as CFS/CFIDS.
CFS In Adolescents: Spectrum of Illness by Dr David Bell
Chronic fatigue syndrome (CFS) has been documented to occur in children and adolescents, but there has been ongoing confusion concerning incidence, clinical manifestations, and severity. The majority of paediatricians believe that if CFS exists at all, it is a short lived, perhaps trivial condition, and a manifestation of psychiatric illness. Many paediatricians would argue that CFS should not be diagnosed in children because the diagnosis will "cause" the illness to persist. This underlying assumption concerning the trivial nature of CFS and the minor impact on a child's life are not consistent with natural history of the illness as seen by clinicians.
The assumption of the benign nature of paediatric CFS has resulted in little attention paid to children and adolescents with this illness, and no paediatric diagnostic criteria have been developed. While it is possible that CFS can be mild and resolve completely in some young persons, there is a wide spectrum of illness severity, and severe cases exist.
Chronic Fatigue Syndrome and Abnormal Biological Rhythms in School ChildrenAkemi Tomoda, MD; Takako Jhodoi, MD; Teruhisa Miike, MD Journal of Chronic Fatigue Syndrome, Vol. 8 (2) 2001, pp. 29-37 Department of Child Development, Kumamoto University School of Medicine, Japan.
ABSTRACT. Chronic fatigue syndrome occurring in previously healthy children and adolescents is one of the most vexing problems encountered by pediatric practitioners. To investigate the biological rhythms in the pediatric patients with CFS, we examined sleep pattern, circadian rhythm of core body temperature (CBT), and plasma cortisol in 41 patients, aged between 10 and 19 years, who did not have any physical or psychiatric disorders, but had non-specific complaints, and were suspected to have a circadian rhythm disturbance. They were diagnosed as having CFS on the basis of published criteria.
Circadian variation of CBT in the CFS patients did not present a clear rhythm, and appearance time of their lowest CBT was significantly delayed compared to healthy subjects. Amplitude of circadian CBT changes, fitted to a cosinor curve by the least square method, was significantly smaller in the patients than in healthy subjects. Moreover, circadian rhythm of plasma cortisol in the patients appeared to be quite different, compared to healthy subjects. These findings suggest that their clinical psychosomatic symptoms (e.g., fatigue and sleep disturbance) might be closely related to the desynchronization of their biorhythms, particularly the circadian rhythm of body temperature and cortisol rhythm.
Thirteen-Year Follow-Up of Children and Adolescents With Chronic Fatigue Syndrome
Objective.To describe the educational, social, and symptomatic outcome of children and adolescents with chronic fatigue syndrome 13 years after illness onset.
Methods. Between January 1984 and December 1987, 46 children and adolescents developed an illness suggestive of chronic fatigue syndrome. Follow-up questionnaires were obtained from 35 participants an average of 13 years after illness onset. Data were obtained concerning subsequent medical diagnoses, amount of school missed, presence and severity of current symptoms, and subjective assessment of degree of illness resolution.
Results. Of the 35 participants, 24 were female (68.6%) and 11 were male (31.4%). Average age at illness onset was 12.1 years. Eight participants (22.9%) had an acute onset of symptoms, 27 (77.1%) had a gradual onset. No participant received an alternative medical diagnosis that could have explained the symptom complex between illness onset and follow-up. Thirteen participants (37.1%) considered themselves resolved of illness at follow-up; 15 participants (42.9%) considered themselves well but not resolved; 4 (11.4%) considered themselves chronically ill; and 3 (8.6%) considered themselves more ill than during the early years of illness. Correlation with the Medical Outcomes Study Short Form Health Survey was good for current level of symptoms and degree of recovery. Eight participants (22.9%) missed >2 years of school, and 5 of these were still ill at follow-up. Amount of school missed correlated with both illness severity at follow-up and perceived social impact of the illness.
Conclusions. These data demonstrate the presence of an illness consistent with the current definition of chronic fatigue syndrome. Eighty percent of children and adolescents affected had a satisfactory outcome from their fatiguing illness, although the majority of these participants had mild to moderate persisting symptoms. Twenty percent of participants remain ill with significant symptoms and activity limitation 13 years after illness onset. Chronic fatigue syndrome in children and adolescents may result in persistent somatic symptoms and disability in a minority of those affected.
Sara Bass's Testimony to the CFS Coordinating Committee from the ME society of America
JCFSA Youth Education Committee Report at CFSAC by Mary Schweitzer
UK LAW: Article: Fabricated Illness? Frances Swaine
"Parental over-involvement" in childhood CFS by Mary Schweitzer
Munchausen Syndrome by Proxy by Mary Schweitzer
The Ean Proctor Story
In this “care”, the sick child was forcibly thrown into a hospital swimming pool with no floating aids because psychiatrists wanted to prove that he could use his limbs and that he would be forced to do so to save himself from drowning. He could not save himself and sank to the bottom of the pool. The terrified child was also dragged out of the hospital ward and taken on a ghost train because psychiatrists were determined to prove that he could speak and they believed he would cry out in fear and panic and this would prove them right. Another part of this “care” included keeping the boy alone in a side-ward and leaving him intentionally unattended for over seven hours at a time with no means of communication because the call bell had been deliberately disconnected.
Ean's Story by Barbara Proctor, Ean's mother
An excerpt: 'On Monday 23rd May, two social workers arrived on our doorstep and took Ean away under a "Place of Safety Order". We were not even allowed to go with Ean in the ambulance. Ean was to be in the joint care of Dr C, a psychiatrist, and Dr B, a paediatrician, at the local hospital.
During the whole time Ean was in care, we were allowed to see him for only half an hour a day. He was alone in a ward, could not move, could not speak, and had no way of getting help if he needed it. He had been told that he had been taken away from us because he was dying. Ean had to endure the most horrific mental torture. One day the psychiatrist told him "There is nothing wrong with you.... if you don't talk next week, you will be better off in Ballamona [the mental home]". Ean was so scared, he wet himself as he sat in his wheelchair. The Staff nurse would say to him that if he didn't speak or walk "He would grow old in his wheelchair, stay in the hospital for ever, and never go home again". One night, Rob and I found him very distressed in his wheelchair, all alone. He had wet himself, as no-one had asked him if he wanted to go to the toilet, at lunchtime... It was now 7.40 pm. Friday was the day Ean lived in dread of. This was the day the physiotherapists would take him off to the remedial pool.
(Note that this site is not recommended in any way by the HFME.)
Ean's case is also mentioned in:
To set the record straight about Ean Proctor from the Isle of Man By Eileen Marshall and Margaret Williams, 20th July, 2005
Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical Evidence Base. Comment by Professor Malcolm Hooper & Horace Reid, January 2006
Another Meadow? by Eileen Marshall and Margaret Williams, 16th July 2005
Considerations of some issues relating to the published views of Psychiatrists of the Wessely School in relation to their beliefs about the nature, cause and treatment of myalgic encephalomyelitis (ME) by Margaret Williams et al. 16th January 2003
Chronic Fatigue Syndrome in Children and Adolescents: A Review
Karen M Jordan Leonard A Jason et al
Journal of Adolescent Health 1998:22:4-18
The majority of studies concerning CFS have concentrated on adults, but the illness does strike younger individuals, and the case definitions do not address the appropriateness for the paediatric population. The lack of specificity to the unique characteristics of children and adolescents is pervasive in much of the research literature.
Several authors reported a preponderance of acute onset with viral-type illness in children and adolescents.
Many previous epidemiological studies (one of Wessely’s studies is cited) have relied on physician referral, when (those) physicians are sceptical of the validity of (ME)CFS as a true illness.
Repetitive treatment-seeking is often necessary before a diagnosis of (ME)CFS is made: children may be less able to seek care persistently, so the prevalence rate in those under 18 years has undoubtedly been minimised.
The authors describe the Cheney proposition (Cheney PR. Proposed pathophysiological mechanism of CFIDS. CFIDS Chronicle: 1994:7: 1-3) that the common symptoms of (ME)CFS (eg. hyperreflexia, abnormalities of vestibular function, palpable and slightly enlarged discoid shaped lymph nodes, predominantly left-sided tender posterior and cervical lymph nodes) suggest a connection between immune activation and central nervous system injury: as alpha-interferon can be neurotoxic, particularly to the limbic structure and the serotonergic pathways (via opioid receptors), this may account for the abnormalities in corticotrophin-releasing hormone (CRH), and these deficiencies then contribute to a positive feed-back loop which maintains immune activation.
In addition, the decrease in TRH production could lead to reduced cellular metabolism, including impaired oxygen consumption during exercise, which is consistent with mitochondrial dysfunction.
The authors note that there has been minimal controlled study of psychiatric status for children and adolescents with (ME)CFS. However in one study, adolescents with (ME)CFS received higher scores of psychiatric comorbidity, but on further examination of the somatic complaint items, it was found that this scale was confounded by the presence of many items related to (ME)CFS symptoms (eg. headaches, pain and feeling sick).
The authors state that the overlap of (ME)CFS symptoms with those of psychiatric disorders has been found to lead to an overdiagnosis of psychiatric disorder in adult (ME)CFS populations.
The authors note that a list first supplied by Komaroff provides four discriminating characteristics of fatigue and symptoms which should assist the clinician in distinguishing between (ME)CFS and malingering or somatoform disorders, and these include symptoms which are rarely found in paediatric general practice.
The authors note that the perceived causal role of depression in (ME)CFS may have been inflated in some studies owing to frequent errors.
They note that the Diagnostic and Statistical Manual (DSM) IV criteria for depression do not include any of the primary complaints of patients who present with (ME)CFS.
Further, the DSM IV criteria for somatisation do not mention fatigue symptoms.
The DSM IV states that individuals with somatisation disorder describe their complaints in a colourful, sensational and emotional manner, with specific factual information missing.
On the contrary, people with (ME)CFS describe their symptoms clearly and concisely.
Minimal work has been done in the formal assessment of coping with illness, level of disability or quality of life issues in children and adolescents with (ME)CFS.
Paediatric patients may require assistance obtaining special services or accommodations from their school.
The authors note that several authors (Sharpe and Wessely are named) have proposed the use of cognitive behavioural therapy (CBT), and note that while the Sharpe study may be criticised for its poor subject selection methods, no other studies have reported the effectiveness of CBT with child or adolescent populations.
Several authors have conducted follow-up studies with paediatric (ME)CFS patients; most reported improvement or recovery in over 50% of the patients studied, but the present authors note that some children continued to experience significant disability, and that it is possible these children who do not improve represent a unique subset of paediatric (ME)CFS, perhaps having a more severe form of the illness, including more severe neurologic symptoms such as myoclonus, paraesthsia and seizure-like episodes.
Much of the current literature is confused by the lack of paediatric case definition.
(ME)CFS in children and adolescents remains dramatically understudied.
It is imperative that criteria specific to children and adolescents be adopted and used as a standard in future research.
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)
By Margaret Williams, ME Research (UK), March 2000 with Appendices by Val Broke-Smith and Ann Crocker
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.
Wessely, however, believes that the WHO got it wrong about ME 18, writing in The Lancet.. :
"The inclusion in the tenth revision of the International Classification of Diseases (ICD 10) of benign myalgic encephalomyelitis as a synonym for postviral fatigue syndrome under Diseases of the Nervous System seems to represent an important moral victory for self-help groups in the UK ... The nineteenth century term neurasthenia remains in the Mental and Behavioural Disorders chapter under Other Neurotic Disorders ... neurasthenia would readily suffice for ME. Applying more stringent criteria for CFS in the hope of revealing a more neurological sub-group succeeds only in strengthening the association with psychiatric disorders. We believe this latest attempt to classify fatigue syndromes will prevent many people from seeing the world as it actually is."
Despite the fact that ME has been documented in the world medical literature as a nosological entity for over 40 years, Wessely proclaims that ME does not exist; he says it exists only because well-meaning doctors have not learnt to deal effectively with "suggestible patients" 19. He states that "ME is a description, not a diagnosis" 20, and asserts that ME is nothing more than a dysfunctional "belief " that one is ill 21, but that CFS is an operationally-defined (psychiatric) syndrome.
From the time that Wessely came to prominence in 1987, it can be seen from his publications that there has been no real change in his opinion about ME/CFS: despite the enormous body of published mainstream literature which has emerged in the last 13 years, and despite many international conferences on ME/CFS at which world experts announced significant advances in medical understanding of the complex organic nature of this disorder 22, Wessely is pursuing a relentless course, and the evidence speaks for itself 23. Psychiatrists of the "Wessely School" continue to ignore the findings presented at these international conferences by eminent ME/CFS scientists and clinicians which illustrate the organic aetiology of ME/CFS, preferring instead to concentrate on meetings which involve like-minded Psychiatrists (for example, the CIBA Foundation Symposium held in London on 12th-14th May 1992).
Psychiatrists of the "Wessely School" believe that ME and CFS and chronic fatigue are all interchangeable names for the same psychiatric condition, which as recently as September 1999 Wessely describes as a "functional somatic syndrome", equating it with such "medically unexplained symptoms" as pre-menstrual tension; he believes that conditions such as ME/CFS should not be "dignified by their own formal case definition and body of research" 24. Wessely assiduously promotes his belief that these disorders are nothing more than "artefacts of medical specialisation" 25, urging that they should be dealt with by a form of psychotherapy called cognitive behavioural therapy (CBT), which is sometimes known as "brain-washing", as it aims to alter the way people think. It is used together with a programme of supervised graded exercise in which patients are obliged to continue exercising at specified times and to a pre-set level determined by the psychotherapist irrespective of symptoms, whether severe or not. Wessely also advocates the use of anti-depressants (whether or not depression is actually present, and in apparent contempt of the published evidence that anti-depressant therapy is unwarranted in ME/CFS, irrespective of whether depressive symptoms are present, because it does not lead to improvement in any area of the patient's functioning 26. The extensive evidence that Wessely promotes CBT is cited in volume 2 of Denigration by Design 27.
R Gibbons, DFH Pheby, C Richards, FI Bray
“The modal age of onset for this severe group of patients was 11 – 15”
“A relatively larger proportion of the affected child population develop more serious forms of the disease, which may become chronic and lead to severe disability”
“There is a marked tendency towards deterioration (and this) underlines the case for special attention to be given to this particular group of patients, in resource allocation, in planning and providing services to meet their needs, and in the training of health, social care and education professionals involved in their care”.
Case studies of children are also included on the Case Studies page.See also: