Joanne Locked Away Against Her Will

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

 

 


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  • commented 2015-05-24 18:31:33 -0400
    The point being that the condition is real, not a figment of our imaginations; my testings done have proven it is real, & the world needs to start waking up because since I have lived with throwing up & everything being let loose when my heart is trying to stop working from too low of ATP levels I believe that everyone who has ever died who a doctor said that their hearts just stopped because their had been nothing wrong with their hearts had actually died from this condition because their Mitochondria had stopped putting out enough ATP to be able to continue to run their hearts just as it does in mine and those patients died throwing up & as I know also end up wetting the bed because all of the bodies spincters letting loose when that had happened just like mine has been doing also too. I can’t prove that of course, but I do know that it is what has been happening in my body so it is what happens at this stage of this condition. People’s lives are at stake, & we need help; I can’t even afford enough of my d-Ribose powder to be able to make enough energy ATP to stay up for any small lengths of time, each person who has this condition has to make the portion of ATP that their body’s are unable to make of the daily energy ATP that’s needed. If you find the condition, treatment begins when the body is still making 90% of the ATP energy needed for the day; then only 10% worth of what’s needed to be taken to make that amount needs purchased, but if your body is only making 25% of what you need for the day then you need enough money to be able to purchase enough d-Ribose Powder (etc) to make up the 75% that your body can’t make anymore to be able to halt the cell death & destruction going on in your body. They check to see how much cell death & destruction, you have had from the condition; by checking your cell-free DNA levels, because all healthy cell’s DNA is inside of the cells. Mitochondria are in every organ, tissue of the body except for one small area that they never told me what it is, & if you don’t have enough ATP to run your bodies organs just like the heart they will end up just stopping running to one day when you no longer are making enough! THIS IS WHY ALL THOSE TESTING, NEED TO GET YOUR ACTS TOGETHER & DO SOMETHING; We need help getting our Medically-Essential (not Supplements any more for us) Vitamins, Minerals, & d-Ribose, just as diabetics need insulin, epileptics need dilantan, or any other single-organ malfunctioning person needs their medication to live. We need it to be able to live too, & have a better quality of life than just laying on our beds 24/7 once are bodies can no longer put out enough ATP to do more than that.
    —Continued from the SHARI MATTICE message posted 23 minutes ago --
  • commented 2015-05-24 18:07:41 -0400
    This is really sad, I have severe ME/CFS too; I live out of one bedroom lying on my bed practically 24/7, My Mitochondria make so few ATP that I get bad pains I couldn’t handle tell God pointed something out to me that helps take away the pain. When my ATP is too low my brain, tissue, & organ oxygen levels decreases lower than my at rest hypoxia making my nausea increase because my Mitochondria’s developed a faulty-switchover of their metabolism and will kick me into Glycolysis for my bodies total energy needs! Since glycolysis does not need oxygen for energy production, the oxygen isn’t allowed into my tissues, organs, or brain; so my fight response tries to force it across the capillaries by increasing my blood pressure which as it slowly brings up those oxygen levels has caused me to hyperventilate & my carbon dioxide goes to low and I get so much more nauseated that I will violently throw up, if standing wet my pants, & feel I will die if I don’t take the d-Ribose powder plus stuff that I need to make more ATP so that it will kick me back into my Mitochondrial metabolism again. This occurrance repeatedly happens if I don’t stay laying on my bed practically all the time now, so I live basically out of one room. The pain I have found is not only due to the lactic acid’s being produced, but is due to the faulty-switchover of the metabolism when I get too low on ATP levels and am kicked into glycolysis which is highly inefficient to meet the bodies energy needs. I have found one product that God told me about through an angel in disguise that does take away my pain that is also due to too low of oxygen levels (according to tests that I’ve had done)! They remove my pain from all my muscle, organs, & brain too; plus they keep my hips from breaking down when I lay on one side too much at night by placing a small strip over my hips a couple times at night, plus by placing them over my cheek on the outside of course once when I’d had an abscessed tooth that was really killing me doing so had also taken away the pain. I have learned alot about this condition because I believe that I was in a 4th stage of it, the one that would be right before when your heart would simply end up giving out because of their being no more ATP to run it! I have found out that people with horseshoe kidney’s can get too much Magnesium by injection just like those who are in kidney failure have been said can get to much also. [I have a horseshoe kidney, & I believe no one has had one who has been in the testing done for this condition; even the ones done in the UK, where I’d been tested for my condition by Dr. Sarah Myhill there hadn’t been one in it or anyone that had been as close to having very little ATP produced as I have been]. I would wake up in the middle of the night, when my heart would try to just stop working; I’d wake up to a strong discusting smell of fresh poop being smelled strongly in my nostrils shocking me back awake. The only thing that totally takes the pain away are the Small size of Salonpas Pain-Relieving Patches, I’ve tried larger sizes & they don’t work at all; the angel in disguise had told me to try the ‘Small’ Salonpas Pain-Relieving Patches because her husband swears by them, I tried them & they work being the only thing that does completely remove the pain for a few hours at a time. Her is a link to the size that works, http://www.walmart.com/ip/Salonpas-Topical-Analgesic-Pain-Relieving-Patches-40ct/16935760
  • commented 2014-10-14 16:53:44 -0400
    how about prof Scheibenbogen who is great ??
  • commented 2014-10-14 16:35:41 -0400
    Drspeedy Andme………….you are quite right in Dutch……………I have a dutch friend too.
    What do you want translated?……………JULES DESPERATEFORANAP TURNER
  • commented 2014-10-14 16:29:58 -0400
    DRSPEEDY ANDME……..the article says Germany, will have a look………..know a few Germans so if probs will ask them
  • commented 2014-10-14 08:18:02 -0400
    .nl is dutch, where is she locked up ?
  • @ tweeted this page. 2014-10-12 14:50:49 -0400
    Joanne Locked Away Against Her Will #MECFS #CFS Donate to Save4Children to help with legal fees. http://www.meadvocacy.org/joanne_locked_away_against_her_will?recruiter_id=2
  • Old broadcaster, don't use posted about Joanne Locked Away Against Her Will on Old broadcaster, don't use's Facebook page 2014-10-12 14:50:49 -0400
    Joanne Locked Away Against Her Will #MECFS #CFS Donate to Save4Children to help with legal fees.