Name: On behalf of EAN PROCTER [Online] Country: UK
‘Without ever having spoken to his parents, social workers supported by psychiatrists and armed with a Court Order specially signed by a magistrate on a Sunday, removed the child under police presence from his distraught and disbelieving parents and placed him into "care" because psychiatrists believed his illness was psychological and was being maintained by an "over-protective mother". Everything possible was done to censor communication between the child and his parents, who did not even know if their son knew why they were not allowed to visit him.
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.
The side-ward was next to the lavatories and the staff believed he would take himself to the lavatory when he was desperate enough. He was unable to do so and wet himself but was left for many hours at a time sitting in urine-soaked clothes in a wet chair. Another part of the "care" involved the child being raced in his wheelchair up and down corridors by a male nurse who would stop abruptly without warning, supposedly to make the boy hold on to the chair sides to prevent himself from being tipped out; he was unable to do so and was projected out of the wheelchair onto the floor, which on one occasion resulted in injury to his back. This was regarded as a huge joke by the staff.
In a further medical report dated 5th August 1988 for Messrs Simcocks, Wessely expressed a diametric opinion from that of Dr Morgan-Hughes, writing: " A label does not matter so long as the correct treatment is instituted. It may assist the Court to point out that I am the co-author of several scientific papers concerning the topic of "ME"….I have considerable experience of both (it) and child and adult psychiatry (and) submit that mutism cannot occur (in ME). I disagree that active rehabilitation should wait until recovery has taken place, and submit that recovery will not occur until such rehabilitation has commenced……..it may help the Court to emphasise that…active management, which takes both a physical and psychological approach, is the most successful treatment available. It is now in everyone’s interests that rehabilitation proceeds as quickly as possible. I am sure that everyone, including Ean, is now anxious for a way out of this dilemma with dignity".
Ean Proctor was kept in "care" and away from his parents for over five months. Although this took place in 1988, such brutality is still happening in the UK: the continued barbaric "treatment" of sick children by certain psychiatrists who profess to specialise in ME was the subject of a Panorama programme transmitted on 8th November 1999 and was profoundly disturbing (a videotape recording is available).
Nothing seems to have been learnt from the appalling case of Ean Proctor and there is no question that children with ME continue to be forcibly removed from their parents and home; this issue was raised by Dr Nigel Speight, a consultant paediatrician at the University Hospital of North Durham with 20 years experience of children with ME, who in April 1999 reported to the Chief Medical Officer’s Working Group on "CFS/ME" that the frequency of psychiatrists diagnosing the parents of children with ME as having Munchausen’s Syndrome by Proxy now amounted to an epidemic. Jane Colby, Executive Director of The Young ME Sufferers Trust (TYMES Trust) says "To have your sick child taken from you, to be suspected of damaging them yourself, just when they most need your care, is an appalling experience".
See also:
The Ean Proctor Story
Ean's Story by Barbara Proctor, Ean's mother
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
Name: A.H. Country: UK (from the RiME website)
Before March 1994 I was fit and healthy and employed as a Head of Year and PE / Maths teacher who led a full and active sports life. On 8th March 1994 I suffered a strange debilitating virus which eventually became so bad I was unable to work, (incidentally, there was a cluster of cases of M.E, affecting to varying degrees, a number of pupils at the school.) I paid for tests to be undertaken privately and these proved that I was suffering from Post Viral Syndrome, following Glandular fever. The NHS solution was that nothing could be done but it probably go within two years, which I refused to accept and set out to find the solutions privately.
During the following three years I deteriorated until in 1997 I was reduced to crawling to the toilet, being carried downstairs and spending the day lying as still as possible due to severe agonizing headaches. In addition 1 suffered from terrible weakness, muscle aches, severe dizziness, blurred vision, sore throats, sweating and shivering, swollen glands, highly light and noise sensitive and digestive problems. I was barely able to sit up to eat, unable to watch TV or even converse for more than about 5 minutes,...
Every day, seems like eternity, spent enduring pain, feeling so ill, like your blood has been poisoned, with the frustration of being trapped inside a useless body, unable to concentrate and needing assistance to do the most basic tasks. For a couple of months I suffered the humiliation of being unable to feed myself. Whilst I am able to do this now I still need help to get to the toilet, to wash and dress etc.
it is like the seasickness adage. First you feel so ill that you are afraid your going to die and then it gets worse and you are afraid you are not going to die. I and most other sufferers, adopt a determined, positive and proactive attitude, which no doubt contributed to ME in the first place. Merely surviving these eight years of hell has been a far greater achievement than any of my academic qualifications, sporting achievements or job promotions.
Over eight years I have spent thousands of pounds, in vain, seeking a solution from many sources including ME Consultants, Acupuncture, Osteopathy, Homeopathy, Herbal medicine, Nutritional therapy, Kineseology, Hypnotherapy, various healers, very many nutritional supplements. Immunogiobin, B12 and magnesium injections with little or no help from the NHS.
Governments, researchers and fundraisers need to realize that it's not just about saving lives but quality of life and that with severe ME this is zero. Society would not let animals go through such suffering and incapacity but ME sufferers are left to exist in a "living death" state for years sustained only by the distant ray of hope of recovery and a positive attitude that keeps you fighting and thinking that it's got to get better soon even after 8 years of disappointments.
Insult is added to injury by the fact that some people still believe a bit of graded exercise and some positive thinking is all that stops sufferers getting well. I used these methods to recover from an accident when 1 received 25% bums but with ME this results in deterioration rather than increasing my capacity If only that was the answer I'd never be in this hell I'd have been well years ago enjoying a wonderful life that 1 had before ME.
It is a disgrace that there is no government funding research into aetiology of ME, (the only fundmg is provided through charities and donations, for an illness, which affects an increasing number of people of all ages, usually the very active) I urge you to ensure that this criminal neglect is ended now with desperately needed funded research into Neurology, Immunology, and other areas of dysfunction Severely affected sufferers must be included in any study, not just those well enough to attend the trials.
Name: N.B. Country: UK (from the RiME website)
When first ill, after two and a half years in bed, I spent six and a half months in a psychiatric ward - the only help they offered on the NHS, I did graduated exercise and CBT, It did not cure me, I am still badly disabled with ME after 12 years and use a wheelchair,
Name: J.W. Country: UK (from the RiME website)
I am writing in great despair. 1 have been a M.E sufferer (Myalgic Encephalomyelitis) now for 14 years. I have had this since the age of 16, I am now 30 and have had my life ruined and taken away by this very misunderstood illness. I live day to day trying to cope with an array of symptoms and as there are no doctors who really know how to help or even all the symptoms you can suffer from.
1 know there are many people worse off than myself, but that does not give the Government the right to make no effort in funding any sort of medical research, to find a cure for M.E sufferers and for us to be treated like second class malingerers by the doctors We all need help to find a cure for this covered up illness now. Why should we have to suffer in silence alone'
Many M.E. sufferers have taken their own lives through sheer despair and I have the lost a wonderful friend to this and do not want to lose any more before you realise how awful this illness is. I suffer from breathing difficulties, heart irregularities, confusion, pain, muscle weakness, head pain, swollen lymph nodes, fevers, sickness, dizziness, severe unreality, shaking, have to use a wheelchair when I'm out and am pretty much housebound, This is some of the symptoms I suffer I want medical funding for research. It is my right and I want it before the next 15 years of my life are ruined.
Name: R.I. Country: UK (from the RiME website)
The exclusion clause, " ... but with the exception of psychiatry . " in your petition, appealing for a co-ordinated research progamme into the aetiology (underlying causes) ofME. begs the question why psychiatrists should be involved in the treatment of people with M E , unless they have a history of, or a concomitant, psychiatric illness. It is understandable that people with M.E. are fed up with the loss of career (or interruption of education in children), reduced standard of living, social isolation and fractured relationships, sometimes compounded by disbelief & derision, on top of the discomfort of the illness, but this is not the same experience as clinical depression, which is not thus explicable.
Of course, some people with M.E. may have depression, or some other psychiatric illness, but the one is not a prerequisite for the other.
Since M.E is classified as a neurological, not a psychiatric or mental illness, it may, at first, appear hard to see why psychiatry has taken such a dominant role in research and treatment.
A significant reason for this may be the influence of the report from the Royal colleges of Physicians, Psychiatrists and General Practitioners in 1996, since when Chrome Fatigue Syndrome has been widely thought of as the official name. Why CFS should be the preferred term has never been made clear by those who said it should be so.
Chronic Fatigue Syndrome is an umbrella term, under which a number of illnesses, in which chronic fatigue is but one symptom, are contained, ME. is much more than mere tiredness The terms are not interchangeable as putting a / between them suggests.
Since we are not talking about the Same illness, there ought to be different research strategies and the treatments suggested by findings as suitable for one condition, for example graded exercise or cognitive behavioural therapy, may not be suitable may even be harmful - for the other.
Thanks for your initiative [RiME], from all with ME but in particular on behalf of those who are so severely affected that they remain isolated, invisible, without a voice and, in spite of receiving particular mention in the CMO's Report, are still neglected
Name: P.L. Country: UK (from the RiME website)
As a social worker, I have met several people with this illness, I was very surprised to hear that the Government is funding no research into its underlying physical causes.
In addition to the human suffering there is the question of cost. ME currently costs the country over £4 Billion pounds per year The state has a duty to investigate. What is behind this much misunderstood illness and enable people to improve / recover so they can resume a useful role in society.
The small sums of money which up to now have been spent on psychiatric models of treatment are not working and are inappropriate.
Name: Clair Coult
I was diagnosed with ME when I was 15 years old. I am now 30 years old. When I was 21 years old I saw a doctor at my local hospital's Pain Clinic. He did a brief examination and declared that I didn't have ME anymore and that I was unfit. The only way I was going to recover was if I did a course of physiotherapy. I knew he would label me a fraud if I didn't attempt it so against my better judgement I agreed.
At this time I was using a wheelchair outdoors and a walking stick indoors. My symptoms were quite severe and fluctuated a lot. The course of physio involved going the to the local hospital (using volunteer transport) twice a week to do a set of exercises. The transport arrangements were not well organised and I was often waiting up to an hour to be picked up or taken home.
I was given two pages of exercises to do. They were apparently the simplest and easiest they did. At my request I was supervised by an assistant physio, I would have been expected to complete all of the exercises on my own.
The exercises comprised of:
Sitting with 1KG weights on my ankles, raising and extending my legs for 10 repetitions.
Raising my arms above my head for 10 repetitions.
Raising and lowering my shoulders for 10 repetitions.
Holding a stick with both hands, extending arms and raising it over and behind my head.
Sitting on a wobble board and rotating my hips for 2 minutes
Standing at the wall bars and raising each leg behind me and to the side, for 10 repetitions of each.
Plus quite a few more exercises I can't remember the details of at the moment.
I was expected to complete all of the these exercises in the first sessions and increase the number of repetitions each session after that. In the first session I was unable to complete all of the exercises, I had to do the standing exercises laying down as I could not stand for that long. when I was taken home I collapsed through the door. I managed to crawl across the floor to the telephone to call my mother for help. This happened after each session.
The volunteer driver who took me to the hospital asked me one day what they were doing to me because they were making me worse not better. Over the 5 weeks that I did the physio my ME became much worse. I had no quality of life, I was just eating, sleeping and doing physio. I [was too ill] to do anything else. My pain had significantly increased and my mobility decreased. After 5 weeks my husband wrote a letter to the hospital telling them how ill I had become and that I would not be going to do physio anymore.
I saw the doctor at the pain clinic a couple of months after that for a follow up appointment. He mentioned the physio and his only comment was "I'm surprised you lasted that long".
Since then I have learned to pace myself and limit my activity and even though I am still quite severely affected by ME I have been stable for several years.
