You may be wondering who and what I was referring to in my Dec post 'A series of unfortunate events; why I've been slightly depressed recently' when I mentioned the people who died of lack of care and abuse.
In order to help you understand I thought I'd first give you a basic history of ME;
ME is probably the most controversial and deliberately misunderstood illness in medical history. Myalgic Encephalomyelitis (ME) has been documented in the medical literature from 1934. It has been classified, by the World Health Organisation in the International Classification of diseases, as a organic, neurological condition since 1969. It shows very obvious, physical symptoms and signs of abnormal body functions under lab conditions
However it has been encouraged to be belittled and confused with Chronic Fatigue in the UK since 1988 (simply long term tiredness, probably psychiatric) by members of the Wesseley school. Simon Wesseley is obviously at the head of this school of thought. In case you haven't heard of him, he is Professor of Epidemiological and Liaison Psychiatry at Guy's, King's and St Thomas' School of Medicine, London and at The Institute of Psychiatry, where he is Director of both the CFS Research Unit and the Gulf War Illness Research Unit. He is well-known for his strongly-held beliefs that neither ME nor Gulf War Syndrome exists, and that such patients are mentally, not physically, ill. Seems a bit odd that he is heading research into ilnesses he doesn't believe in. He is also an adviser to the government and medical insurance companies.
He believes that rather than a physical disease being at the heart of ME, the sufferers are merely self obsessed hyperchondriacs and any self respecting Dr would be disgusted with them. He encourages the government not to take ME as a serious disease on this basis.
This has led to a lot of stigma around the illness and very few services, treatments or biomedical research.
Here are a few case stories
Ean Procter;
In 1988, a formerly healthy 12 year old boy named Ean Proctor from the Isle of Man had been suffering from ME since the autumn of 1986; his symptoms included total exhaustion, feeling extremely ill, abdominal pain, persistent nausea, drenching sweats, headaches, recurrent sore throat, heightened sensitivity to noise and light and loss of balance; he was also dragging his right leg. In 1987 his condition had rapidly deteriorated; he had gradually (not suddenly as may occur in hysterical disorders) lost his speech and was almost completely paralysed (which lasted for two years). He had been seen by Dr Morgan-Hughes, a senior consultant neurologist at the National Hospital in London, who had reaffirmed the diagnosis of ME and advised the parents that ME patients usually respond poorly to exercise until their muscle strength begins to improve; he also advised that drugs could make the situation worse.
Although he did not obtain his MRCPsych until 1986, during one visit by the Proctors to the National Hospital in 1988, Wessely (then a Senior Registrar in Psychiatry) entered the room and asked Ean’s parents if he could become involved in his case; desperate for any help, they readily agreed. Wessely soon informed them that children do not get ME, and unknown to them, on 3 June 1988 he wrote to the Principal Social Worker at Douglas, Isle of Man (Mrs Jean Manson) that “Ean presented with a history of an ability (sic) to use any muscle group which amounted to a paraplegia, together with elective mutatism (sic). I did not perform a physical examination but was told that there was no evidence of any physical pathology…I was in no doubt that the primary problem was psychiatric (and) that his apparent illness was out of all proportion to the original cause. I feel that Ean’s parents are very over involved in his care. I have considerable experience in the subject of ‘myalgic encephalomyelitis’ and am absolutely certain that it did not apply to Ean. I feel that Ean needs a long period of rehabilitation (which) will involve separation from his parents, providing an escape from his “ill” world. For this reason, I support the application made by your department for wardship”.
On 10 June 1988 Wessely provided another report on Ean Proctor for Messrs Simcocks & Co, Solicitors for the Child Care Department on the Isle of Man. Although Wessely had never once interviewed or examined the child, he wrote “I did not order any investigations….Ean cannot be suffering from any primary organic illness, be it myalgic encephalomyelitis or any other. Ean has a primary psychological illness causing him to become mute and immobile. Ean requires skilled rehabilitation to regain lost function. I therefore support the efforts being made to ensure Ean receives appropriate treatment”. Under his signature, Wessely wrote “Approved under Section 12, Mental Health Act 1983”.
In that same month (June 1988), 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.
Sophia Mirza;
Sophia died under very distressing circumstances on Nov 25th 2005. She showed all the classic signs of classic ME( hypersensitivity, muteness, severe pain, food allergys) but was sectioned in a mental health hospital against her will, under the mental health act, for two weeks in July 2003. This was due to the Drs blaming her Mother, Criona Wilson, for causing her condition. Her mother, quite rightly, blames her incarnation there for worsening her symptoms and subsequent death. Upon her death a autopsy was carried out. At first her cause of death could not be determined. Thanks to Simon Lawrence her spinal cord was taken away for research by Dr Chaudhuri and Dr O’Donovan which discovered unequivocal inflammatory changes affecting the special nerve cell collections (dorsal root ganglia) that are the gateways (or station) for all sensations going to the brain through the spinal cord. The changes of dorsal root ganglionitis seen in 75% of Sophia‘s spinal cord were very similar to that seen during active infection by herpes viruses (such as shingles). The cause of death was however determined as acute anuric renal failure. The other symptoms were classed as the secondry reason of death. However I think the inflammatory changes are a more significant contributing factor in her death, as I explained in a Nov post, that is the meaning of 'Myalgic Encephalomyelitis'. The cause of her illness certainly had nothing to do with her mothers handling of her.
You can find out more at her website
http://www.sophiaandme.org.uk/
Libby Meyers;
Libby Meyers, 62, is in a nursing home in Charlton Down near Dorchester but her family want her to be treated at a specialist NHS centre, the Chronic Fatuige Syndrome unit at Queens hospital in Romford in Essex. Her husband and daughter have appealed three times but their applications have been rejected by NHS Dorset.
Mrs Meyers' husband Hugh, from Stratton near Dorchester, said his wife had simply been "abandoned" with no NHS treatment since 2007. Her bed in the Chestnut Nursing Home is being paid for by the family. Their third appeal against NHS Dorset's decision not to fund treatment in Essex was turned down recently and they now have no further right to appeal. Her husband says "She's had assessments [by local NHS] and they've all said 'sorry, she's too severely ill and we've got nothing that can help her. It may be expensive to send her to Essex but the cost implications of a woman of 62, who could probably survive in horrendous conditions for another 20 years, it doesn't make sense."
Their daughter Fiona Meyers says "They've left mum to rot in a nursing home.
Ok, not the most imaginative title I know, but it does what it says on the tin as you might say. Its the first formal education I've attempted in 11 years unless you count the casual maths and English lessons my Mum has given me most week days since I was well enough. I've also been on some adult learning workshops run by Suffolk Wildlife Trusts. It was mostly due to these that prompted me to decide to try a OU course and which one.
