New era for ME/CFS research as top cytokine study attracts media headlines
The immune systems of patients who have recently developed ME/CFS look markedly different from those who have been ill for much longer, according to a major new study from Drs. Ian Lipkin and Mady Hornig at Columbia University. This shift in immune function hadn’t been seen before.
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“Justina’s Law” to prohibit 'ward of state' research

Discussion in 'Other Health News and Research' started by natasa778, Jun 28, 2014.

  1. natasa778

    natasa778 Senior Member

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    http://bachmann.house.gov/press-rel...arino-and-mcdermott-introduce-“justina’s-law”
     
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  2. SilverbladeTE

    SilverbladeTE Senior Member

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    yeah like how some years ago they discovered children in the care system in New York were being used as guinea pigs for HIV vaccines
    evil scum, grrrr!!!
     
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  3. Valentijn

    Valentijn Activity Level: 3

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    This is the perfect approach for the family to start with.

    But I still think they need to sue the pants off of Boston Children's Hospital for the damage done :cautious:
     
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  4. taniaaust1

    taniaaust1

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    Thank God that something is going to be done to help stop things like this.
     
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  5. barbc56

    barbc56 Senior Member

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    The sources that wanted Justina home and disregarded any possibility of child neglect are the very same sources who are advocating for this bill.

    What kind of documentation shows that this is happening in this day and age? Where is the bill/policies that says this can happen?

    I'm not saying experimentation without consent doesn't exist, but informed consent is an important issue in the states. I would think there would be other laws that would supersede these policies if they do exist. Without informed consent, a study would not be deemed acceptable.

    Michelle Bachman, is a Tea Party member and so far I just don't trust her policies. Other's may differ.

    Barb
     
    Last edited: Jun 30, 2014
  6. alex3619

    alex3619 Senior Member

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    I read about this elsewhere. Its time, and more than time, for something like this.

    I know of lots of cases like this. Mostly its kept hidden. Justina's situation became very public when her father disregarded a court order, and risked being arrested, to speak to the media. Though I think he mishandled this in many ways (as did others) he has to be commended for that.

    At any one time in the UK for example, there are a large number of children either at risk of this, or actually sectioned. Its the same with adults. In most cases there is either a court order suppressing release of information, or there is threat of sanctions keeping people quiet.

    One situation in Australia I knew about going back to the late 90s, in my own city, Brisbane, took seven years of legal battles to get the child released. Seven years with ME and they attempted to get her to exercise, and forced her to exercise.

    There simply are not enough places in institutions to do this to everyone, so they target children especially, since its easier to get funding. Typically the state pays for it. That is part of the problem.

    If they tried to do this with every ME patient, and every similar disease, they would have to build new institutions and it would break the budget. What they do instead is operate on a fear mode ... cooperate with us or else.
     
    Last edited: Jun 30, 2014
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  7. SilverbladeTE

    SilverbladeTE Senior Member

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    The Ean Proctor case is classic, only reason we heard about it in the UK was because it occurred on the Isle of Mann, which has different laws so was easier for judge to speak out about it, and the judge had backbone.

    Sophia Mirza died because the psychiatrist shmucks ramrodded her with THEIR "false illness belief" system

    I've read of several cases of kids with ME or Lyme being taken off their parents in the US, again we only hear about cases where parents have money to pay for good lawyers, or there's big interest etc.

    UK's children's system is deeply, deeply broken partially because they privatized lot of the care homes/system in England, and frankly, fair chunk of it is *evil*. They make money keeping kids in care homes regardless of the truth....

    Some folks have had very nice quite untroubled Middle Class lives, which we'd all hope for, but, are thus unaware of the utterly heinous, banal, stupid crap that goes on, sigh.

    Alex, did you see who got convicted today in the UK? :/
     
  8. alex3619

    alex3619 Senior Member

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    No, not caught up on UK news! Checking ...

    PS Rolf Harris?
     
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  9. Valentijn

    Valentijn Activity Level: 3

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    It's already been shown that the doctor who ignored Justina's prior diagnosis, and replaced it with a psychosomatic diagnosis, had a federal grant to study psychosomatic illnesses at the time.
     
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  10. SilverbladeTE

    SilverbladeTE Senior Member

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    Alex
    yup, point being the "Establishment" let some fall guys take it in the neck, entertainment celebrities etc, as a fob to quiet the Public's outrage at massive child abuse protected by the security services (as one incident exposed in Northern Ireland showed, MI5 used such as ways of getting blackmail, not crazy talk, it's been brought up in Parliament and ex-cops etc have talked about this stuff).

    And this then ties into the child care home system in England which has been largely privatized, and since it makes them money to keep children in this system, regardless of the actual facts of the case...and these companies have bought up many of the firms/chambers who supply lawyers and expert witnesses for these cases, well....

    Note that the twisted way the law was changed not only brought in huge veils of secrecy on child cases, they made it so only certain lawyers and witnesses were allowed to be involved in these cases, so by these care home companies having these lawyers/expert witnesses *on their pay roll*, they have created a monstrous system that refuses to let children go, that eagerly seizes children for profit, and some of them desperately cover up historic child abuse cases so they don't lose their contracts, or "rent out their children" or even facilities to...well...very sick or evil people indeed

    In such environments the likelihood of misusing these kids of unethical medical testing is high, because that is EXACTLY what happened in Ireland as we now know, and in the New York care home system.
    And then if the testing is unethical, you cannot then trust any fo the data that comes formt hat as they have alredy proven themselves untrustworthy and the likelihood of the data collected being wrong of falsified is extremely high, plus the whole vital moral/ethical questions.

    What many people do not realize is that certain data on how Humans react to extreme conditions, was obtained by the work of Doctor Josef Mengele and other butchers in the concentration camps. The source of that information was "redacted" and kept secret for decades, and used in things like fighter pilot and astronaut environmental suits, and torture regimes the West used and taught to dictators we "liked".
    Which is why I have long supported an international, legally binding "Hippocratic oath" for all science and research.
     
  11. barbc56

    barbc56 Senior Member

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    I worked with child protective services for many years. So based on my experience, in this case l something doesn't ring true. This is my personal opinion/gut feeling which may or may not be accurate.

    The usual pattern in my experience is that these agencies go too far the other way and don't step in. They are understaffed, caseloads are ridiculous, pay is low so on one wants these difficult jobs.

    Funding keeps getting cut, by some of these very same politicans who are supporting this bill which imho is overkill. Maybe their time would be better spent by focusing on funding. Informed consent has to be shown whether it's the parents or guardians.

    These type of conspiracies do happen, I am not disputing that. I am talking about this particular case. Child wellfare agencies make mistakes but child abuse also happens.

    The fact of the matter is that we don't know the other side of the story because of patient confidentiality. I haven't read that Tufts has upheld or denied the somatoform and/or mitocondrial diagnosis. Again because of patient confidentiality.

    Basically, we don't have all sides of the story so it's difficult to ascribe motivations to anyone on either side.

    I could go on and on why I feel uncomfortable with this situation but like other's views it would also be based on speculation.

    Barb
     
    Last edited: Jul 2, 2014
  12. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Justina's parents were removed as guardians because they would not go along with the Boston hospital diagnosis. I can't doubt but that the court appointed 'guardian' felt compelled to go along with whatever Boston hospital proposed.
     
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  13. alex3619

    alex3619 Senior Member

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    I agree with these points, but with caveats.

    When medical authorities insist something is done it becomes a priority. Its no longer a case child protection services taking their time. Also, its often funded by the state once they are in hospital care.

    The other issue is though we cannot safely ascribe motivations, we can say the process is broken and did not fulfill its purpose. It failed. Mistakes were made. People were harmed.

    Why they were made is a matter for investigation and historians. What motivated people to make these mistakes can only be determined by proper investigation, and even then there will be limits to such investigation.
     
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  14. user9876

    user9876 Senior Member

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    In the UK I have read (in the academic literature) or heard directly of a number of cases where social workers have basically believed doctors unquestioningly leading to this type of case and harm to a child. They seem to center around FII (previously known as Munchhausen by proxy) and cases have delayed children getting proper treatment. It happens with children with ME because doctors and teachers don't believe in it or don't believe it can be that bad. This creates a situation of professionals against parents sometimes without a questioning voice. From the social workers perspective I think they don't have enough knowledge to question doctors who sometimes have quite flakey and inconsistent stories.

    This is bad both for sick children but given that most social work departments are very over worked it is also very bad for other children whose problems don't get dealt with. There is a real issue in that no one does anything about the doctors and at least in the UK the family courts issue gagging orders that prevent publicity on the cases. I have heard of one case where a psychiatrist diagnosed FII in court leading to a child being taken into care and later a testable organic disease was found that explained the symptoms. But the GMC were not interested in a complaint.
     
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  15. barbc56

    barbc56 Senior Member

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    Point taken but is this relevant to this particular case?

    I could say I have seen cases of abuse but would be hesitant to say that means in this case there is indeed child abuse.

    I could go on and but I have made my point which is that it's difficult to say one way or another in this particular case. I have made other points which I have addressed in other posts and threads so I feel it would be rather redundant for me to repeat the same things. So, I will just agree to disagree, which is fine, but now focus on other threads.
    Take care.
    Barb
     
  16. Hip

    Hip Senior Member

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    This story is far worse that you realize:

    Do you know the reason why Justina Pelletier was taken away from her parents, and kept in custody as a ward of state by the Massachusetts Department of Children and Families (DCF) for 16 months?

    Justina had been diagnosed with a genetic mitochondrial disease one year earlier, and was being treated for this disease by one of the leading experts in the field, Dr Mark Korson, at Tufts Medical Center.

    However, when she arrived in Boston Children’s Hospital, a doctor inexplicably changed Justina's diagnosis from a mitochondrial disease to a SOMATOFORM DISORDER, and changed Justina’s treatment from physical to mental.

    When Justina's parents tried to discharge their daughter the following day, and return her to care at Tufts Medical Center, they were refused, and Justina was taken away by the Massachusetts Department of Children and Families who moved Justina to a psychiatric ward, where she remained for 11 months.

    Psychologist Dr Simona Bujoreanu then approved the somatoform diagnosis after only 25 minutes with Justina, without consulting other doctors.

    After this, Justina was subject to research being performed upon her without consent, because the law allows such research on any ward of the state, even if that research is not primarily for the person's benefit.

    Sounds to me as if they gave the somatoform diagnosis just in order to capture another human guinea pig for their research.

    This shows that the completely unscientific notion of a somatoform disorder is still causing grievous trouble for sick patients. This incorrect concept of a somatoform condition clearly leads to abuse of patients by psychologists and psychiatrists.

    We need to do more to make people realize that this utterly unscientific notion of a somatoform disorder causes severe trouble in the medical profession. Somatoform disorders must be abolished from the medical lexicon.




    Source of above: ‘Justina’s Law’ introduced in wake of Pelletier nightmare

    Note that this article gives a slightly different account, in which it was pediatrician Dr Alice Newton who made the diagnosis of somatoform disorder.

    There are also two articles in the Daily Mail on Justina's story:

    Pictured: The shocking decline of 15-year-old girl 'kidnapped' by doctors nine months ago who her parents claim are using her as a 'guinea pig for medical experiments' 25 November 2013

    Home at last: Justina Pelletier pictured as she leaves state custody after 16-month battle between her parents and doctors 18 June 2014




    I wonder if the Justina's family is considering suing Dr Simona Bujoreanu or Dr Alice Newton for medical malpractice? They certainly ought to. Some of us should write to the family, and offer sympathy, advice and some background info on this dire abomination and blatantly wrong concept of a somatoform disorder.
     
    Last edited: Jul 7, 2014
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  17. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    To be blunt, these arrogant bastards are Medieval Witchhunters, SAME DAMN THING.
    These see "witches" everywhere and will make crap up to force the evidence to fit their previously held belief.

    It's no coincidence most of their victims are females or children.
    Remember that while ME does have prevalence of female patients, they also do this crap with other illnesses and most of these scum ain't got the balls to look into a man's eyes and try that piss on.
     
    Last edited: Jul 7, 2014

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