• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Another ME child locked away for a year against her will

Countrygirl

Senior Member
Messages
5,463
Location
UK
http://www.meadvocacy.org/joanne_locked_away_against_her_will

Joanne Locked Away Against Her Will
POSTED BY MARY A. KINDEL 22.60SC ON OCTOBER 12, 2014
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.

Read the rest of the article here
 

Valentijn

Senior Member
Messages
15,786
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.
At least there will be excellent grounds for the mother to file a wrongful death suit or when prolonged low levels of oxygen cause brain damage. Hopefully some people will end up in prison for it as well.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
"Collective psychosis". What a great term for this behavior.

Hope this gets settled and this girl gets out of there alive. Tc .. x
 

CantThink

Senior Member
Messages
800
Location
England, UK
I wonder if it is possible for the mother to take the case to the European Court of Human Rights - or indeed if children can take cases there?! I am not sure on what grounds (perhaps proving physical abnormalities and mental sanity), but does a child not have a right to have a say in their treatment or is that all negated if the child is effectively sectioned under some kind of mental health act?

In both this case and the UK hormone therapy one, one of the precipitating factors appears to be the parents' broken relationship and a father pitted against a mother.
 

Gijs

Senior Member
Messages
691
At least there will be excellent grounds for the mother to file a wrongful death suit or when prolonged low levels of oxygen cause brain damage. Hopefully some people will end up in prison for it as well.

They ignore the facts because they don't understand the tachycardy and low oxygen, this is ridiculous these doctors are realy grazy!!!
 

Gingergrrl

Senior Member
Messages
16,171
Maybe I am naive but I actually don't understand how a real doctor can conclude that a child can create tachycardia or oxygen stats that are not real (whether that child has ME or a mental illness or ANY diagnosis.) I was recently in the hospital for five days on a cardiac unit and I had no control over what my heart rate, blood pressure, or oxygen stats were. To think this child can fake this is absurd. How is this stuff permitted and why is is not criminal?
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
Maybe I am naive but I actually don't understand how a real doctor can conclude that a child can create tachycardia or oxygen stats that are not real (whether that child has ME or a mental illness or ANY diagnosis.) I was recently in the hospital for five days on a cardiac unit and I had no control over what my heart rate, blood pressure, or oxygen stats were. To think this child can fake this is absurd. How is this stuff permitted and why is is not criminal?

Oh it's very easy really when they interpret everything through their psychological framework.
Tachycardia = anxiety
Low oxygen = hyperventilation or some other breathing abnormality (of course based on anxiety, no room for a physiological basis)

Or they diagnose with conversion disorder, which means (they say) the physical symptoms are real, but they are still created by psychological issues and so the treatment is to ignore the physical symptoms. Focusing on them makes them worse (they say)
 

CantThink

Senior Member
Messages
800
Location
England, UK
Oh it's very easy really when they interpret everything through their psychological framework.
Tachycardia = anxiety
Low oxygen = hyperventilation or some other breathing abnormality (of course based on anxiety, no room for a physiological basis)

Or they diagnose with conversion disorder, which means (they say) the physical symptoms are real, but they are still created by psychological issues and so the treatment is to ignore the physical symptoms. Focusing on them makes them worse (they say)

I have seen that exact scenario happen over here in the UK. This was in the 90s, but it wouldn't surprise me if it still happens. The NHS treatment protocol is swayed that way, and if unresponsive to treatment or made worse, then conversion disorder or pervasive refusal seems to be the next thing one is branded with. In the case of children, who don't get better or get worse, it is either their fault (so then somatisation/conversion disorder or pervasive refusal) or the parent/s (Munchausen's). They (the medics) have a pschological (label) answer for everything.