This has been reposted from the ME Global Chronicle.

Joanne – Now Almost A Year In Hospital Against Her Will

In November it will be a year that Joanne, the 14 year old girl with severe ME, is incarcerated in a German hospital against her own and her mother’s will. (Read about her fate in the former issues of The Global Chronicle.)

The Child Protection officers together with her father obtained a respective court decision to forcibly admit her in a neuropaediatric ward in November 2013, and so far none of our combined attempts to get her free or to at least stop the detrimental “treatment” approaches of the hospital doctors and therapists have born any fruit.

Mother has lost custody in February this year because she tried to protect her daughter from the “activation programme” and the resulting deterioration,and she will most probably never get back her parental rights. (Dr.) Nigel Speight unremittingly supports Joanne’s mother and tries to give advice and influence the doctors and other institutions involved, among them the ethics committee of the hospital whose job would have been to assess the constant violation of Joanne’s human rights and her explicit refusal of all the “activation therapies” they enforce on her.

Instead of doing their job and address these issues they fell victim to the tales of the doctors that Joanne would have improved under their “treatment” and that this was the only appropriate way to make her healthy in the end. So the ethics committee eventually strengthened the doctors’ approach and determination to keep her in hospital for years, if need be.

Since Joanne’s manifold and severe neurological, cardiologic, gastric and immunological symptoms worsen constantly this means in fact: they will keep her in hospital until she is dead. And her end might be quite near because they now plan to place her in a room with another girl on the ward. According to the doctors they want to “bring her back to a normal life”.

She couldn’t even bear the stress and noise of the hospital environment in a single room without deterioration, so the noise and stress of another girl in the room who is cared for, who has visitors and causes other noise like talking, watching TV etc.will definitely render her in a constant almost unconscious state and a further worsening of all her horrible symptoms like overwhelming exhaustion, constant vomiting and sickness, fever and sweating, headache, severe dizziness, tachycardia, sleeplessness and sensitivity to touch, sound and light.

Already now there are days when she is hardly able to speak a few sentences when her mother visits her in the afternoon – to tell her all the things that are done to her like being permanently observed and tapped by the staff through a one-way mirror in the wall to an adjacent room, like being humiliated by doctors, nurses and therapists, like being accused of just not wanting to talk and cooperate and become healthy, like being denied her ear plugs (they would allegedly cause the headache and dizziness), like having to wait endlessly when calling for a nurse to change her nappies, like having the curtains and windows
wide open so that the noise of the near building site and the traffic of the outward road torture her etc. The way they “treat” her is, according to everything she tells her mother, simply an ordeal, physically as well as psychologically.

There is no way that she will ever get better under their “treatment” and come up with their demands they consider as precondition to send her home. So this is a catch-22 situation for everyone involved, but the only persons who realize this are Joanne and her mother. The health care professionals still seem to believe that they may reach their unrealistic goal by the use of force and coercion.

The prospects of Joanne being allowed to go home to her mother are more than bleak. Even though Joanne’s mother involved another legal expert all their combined efforts had been in vain. Mother still faces a hostile alliance of Joanne’s father (who rarely cares about his daughter and leaves everything to the doctors), the Child Protection officers and the doctors. They all depict Joanne’s mother as some kind of sorcerer who made her daughter ill by witchcraft (the modern lingo for that is “psychological”) and almost let her die and who now prevents any healing by badly influencing her daughter.

Most probably, the impending court decision on mother’s appeal against the withdrawal of her parental rights will only confirm this withdrawal. She is the scape goat for everyone involved, and ratio, compassion, humane behaviour, well, even simply being able to see the reality and the incredible suffering of Joanne (and her mother) seem to have vanished into thin air, if ever existent before.

The behaviour of all professionals involved in this case resembles a collective psychosis. And Joanne’s ominous “psyche” is the second scape goat, she would in their perverted view just not want to become healthy. They assume some kind of weird “psychic blockage” to be the reason for her lying in bed, being paralysed, not able to sit or walk or eat by herself and endure all the hostile treatment she has to endure.

And now they seem to run wild and seem to push their wrong “treatment” approach through with a vengeance: The “activation program” is even increased and Joanne will be placed in a double room in order to provide her some “entertainment”.

The fact that they never seem to realize how close to death Joanne is (they switch off the machines that give alarm when her pulse rate is over 185 or the oxygen saturation of her blood is below 85% - arguing that the stress of the alarm beeping would cause her symptoms) and that they never seem to be afraid of killing her with this “treatment” approach is indicative of their complete lack of knowledge about the disease.

We wonder whether they might finally have second thoughts about their “treatment” when Joanne will die? Or will they still blame the mother or Joanne’s mysterious “psyche”?

If you want to help Joanne’s mother (whose income is very low) with her legal fees you may donate for the Save4Children Fund.
Editor’s note: The German author of this report wants to stay anonymous. The author is well familiar with this case.

A fund called Save4Children has been initiated in March 2014. We would very much appreciate your financial help with this project. You can donate any amount through http://www.geef.nl/doel/save4children

Editor's Note - click on the link above to go to the Save For Children website.

To donate, click on the gray button in the right column called either Doneer Nu (meaning Donate Now).  This will take you to a donation page. Click on the English flag button at the top for an English translation. You can use either a credit card or Paypal (I'm not familiar with the other options, and assume those are European).

If you want to know more about the organization before donating, use this google translation link to browse the website in English- the translation is not perfect, but you will get the gist of it - https://translate.google.com/translate?sl=auto&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=http%3A%2F%2Fwww.geef.nl%2Fdoel%2Fsave4children%2F&edit-text=&act=url