During the Swedish ME Association (RME) 2023 conferenceat the Stockholm County Council Dr. Nigel Speight discoursed on his experiences with children taken into custody in Great Britain and other European countries.
In the December 2023-issue of the ME Global Chronicle we included his introduction and the first two cases he reported about. In this issue five other cases Dr. Speight was involved in.
A girl from Scotland
A lot of doctors can tolerate moderate ME and they just can believe in it. But what they have trouble with sometimes is when moderate ME becomes severe. This 14 year old girl in Scotland was accepted as an ME-patient by her consultant but then got steadily worse. Thus the pediatrician panicked and referred her to a child psychiatrist which made a psychological diagnosis and made a court order remove her from her parents and put in a psychiatric ward.
I was called to see her and I found this poor girl on a psychiatric ward, tube fed, in severe pain and sheltering from light and noise. And every time thedoor closed the tremor of the noise gave her a myoclonic jerk. The disbelieving child psychiatrist repeatedly refused to allow her to wear eye protectors and ear defenders and would physically tear them off the girl if she tried to wear them.
We managed to get the court order reversed and she went to a gentle quiet nursing home somewhere else and fortunately made a good recovery.
A boy from Norway
A quite recent case which I’ve been involved in was a boy in Norway who developed ME when he was 12. He had a younger brother who didn’t have it. The parents were separated and the extended family on the other side of the family didn’t believe that he had ME and went to Social Services. Social Services went to investigated the family and made a diagnosis of Parental alienation syndrome and Münchhousen syndrome by proxy, or fabricated illness by his mother. They made this on the basis of a psychologist report. At no stage did they have a doctor.
Two professors of pediatrics in Norway diagnosed him as having genuine ME but the Social Services chose to ignore them. I cannot believe it but this is all true and as a result he was removed together with his younger brother from this mother. He told me when I saw him last year how the police pulled him out of bed by his legs.
He was put in foster home for two years and did not improve. The two pediatricians in Norway repeated their diagnosis to Social Services and were ignored. I gave an opinion. I visited him and diagnosed ME and wrote to Social Services and it was ignored. And finally – and this is a good lesson for people in this situation – the boy helped to win his own freedom by which time he was 15 years old. And he was so fed up with the social worker telling him about his terrible mother and how he should be getting better, that the boy refused to speak to the social worker again and even barricaded his room and locked the door. So social workers couldn’t talk with him. Grudgingly the social workers allowed him back to his mother and they took a further year toallow his healthy younger brother back home.
So those are social workers ignoring medical opinions, and making a diagnosis of fabricated illness without a doctor supporting them. Only a pediatrician can make a diagnosis of fabricated and induced illness.
A girl from Germany
Probably one of the worst cases I’ve ever seen was from Germany. This was a 13 year old girl with severe ME who got into the hands of a neurologist who believed that he could cure her with an activation regime which was rather similar to that of the boy in the Isle of Man got. But every morning this girl was pulled out of bed, strapped into a wheelchair with her her head strapped to the back of the wheelchair because otherwise it would fall. And she was pushed around the ward to stimulate her. She then had an hour of pedagogy and then an hour of psychology. And she got steadily worse.
This is how she looked when I visited her:
She was in severe pain; she was too weak to turn herself. She had to ring a bell for the nurses to turn her and she was treated like this in this hospital for 18 months. I was able to give evidence to counter the management and for once in my life was absolutely delighted to have a delightful lady judge who listened to my evidence.
There was no opposing evidence and she restored the mother’s parental right rights and allowed her to go home where she slowly improved. And that is her at home:
I think you can tell the difference in the light in her eyes from how she was in hospital and this was six months later.
A boy with 3 wishes
I had a lovely 10-year-old boy who was threatened with going into foster care because the Machinery had clanked into action,. And I asked him his his three wishes. This is a nice way of finding out children’s wishes. You pretend to be a fairy godmother. And this boy said his first wish was there were better judges and social workers who would protect children who need protection and leave families like ours in peace. Out of the mouths of babes and children does one hear the truth. I had pleasure in putting this in my report for court.
Tiffany’s story
I’ve recently had a 15-year-old child with severe long covid who was being threatened with foster care against her will. Because the pediatrician said she had a functional disease and wasn’t ill. And she should be getting better. He blamed the parents.
I tell you about Tiffany’s story. This has got all the same ingredients as the other cases just a bit more detailed. She developed onset of severe me and had to be hospitalized. She was in for three months and in hospital she was given graded activity. They had weekly meetings about her where they set targets for the next week and the nurses were told to leave her to feed herself and put the food outside her reach to give her an incentive.
Her mother gradually got more and more upset at this so they limited her mother’s visiting. The nurses said whenever the mother comes Tiffany bursts into tears which is purely natural. She got steadily worse. Her mother was blamed for sabotaging the program and she was only allowed to come in the evenings. She still got worse and her mother eventually took her home against medical advice.
The family doctor used to upset Tiffany and reduced her to tears and then went back to Social Services. The social service and police took Tiffany back to hospital under a court order, treating her like fabricated illness. The mother was only allowed supervised access to her. Social work actually said: ”if you cry when Mom comes we’ll stop your mother visiting you altogether”.
When I visited her I was called in by the court appointed guardian. I found a demoralized girl, tube fed and very unhappy and when I asked to her about her three wishes, instead of raising her side and saying ’I’d like to go home, I’d like to get better’ she said: “If I’m only allowed one visit next week on my birthday could my mother see me without a social worker sitting in with me”. I said: “I think you can have a better wish than that Tiffany”.
I eventually empowered her to call her independent social worker to instruct her to go back to court and she was allowed to go home. Tiffany at that stage was resigned to have to go into foster care for six months.
She made a gradual recovery and eventually went with a charity to 10, Downing Street to meet Tony Blair’s wife at a charity gathering to tell her story.
Source: Riksförbundet för ME-patienter
Edited by the ME Global Chronicle.
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