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Joanna (not her real name), is a 15 year old girl (2015) in Germany with very severe ME/CFS who has being subjected to an "activation regime" in. This was against her strongly expressed will and that of her mother.
The mother has had her parental rights removed by the court for opposing the treatment regime. Social services were asking the court to terminate contact between Joanne and her mother, completely. This was a gross violation of Joanne's human rights, and a very clear case of Emotional Abuse of a young person by professionals and the courts.
In view of the severity of Joanne's condition, it may even be that this act of emotional abuse has put her very life at risk. Mother was desperately in need of funds to help oppose all this in court. She received financial support from friends and relatives and also from the fund Save4Children.
The doctors at the clinic with the help of the child protection agencies wanted a complete contact ban (!) between Joanne and her Mum.
In case of acting against this Joanne’s mother would have to pay up to € 25.000,= or go into jail for up to 6 months! They wanted to have her out of the way to force even more vigorous GET on this completely helpless girl.
During 20 months of their treatment, Joanne had not improved, in fact she was much worse. Joanne was forced to ride a bed bicycle every day longer and faster and she was chained on a tilt table every day, wearing a corset and heavy orthesis, where she had to remain in an upright position 3 times for 4 minutes. She nearly fainted but there were no pulse or blood pressure controls.
She had absolutely no right to say anything and they treated her as if she had a psychiatric disorder. After almost 20 months in hospital Joanne was finally released after the court had decided to give parental rights back to her mother (with some judicial obligations).
The mother has her parental rights back but for this she had to make many concessions, e.g. she had to agree for Joanne to get psychotherapy and mother and daughter are still under quite heavy surveillance through the nursing service, various therapists and the new GP who will all give regular reports to the child protection authorities and to the father.
Joanne was released from hospital in August 2015, with the diagnosis "Pervasive Refusal Syndrome" (not “severe ME”) and with many recommendations from the clinic that the GP is eager to put into action so there is still a long way to go until the GP gets it right and until Joanne gets the rest she really needs (it is great that Dr. Speight supports the family with this).
Source: ME Global Chronicle
References[edit | edit source]
graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.
myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.