The fine print…
This diary is for people who are concerned about the plight of CFS and ME patients, and patients with similar disorders like Mitochondrial disorder. People reading this diary may be very ill, and deserve respect and compassion. This diary is not for anyone who does not believe in these very real disorders. Take that shit somewhere else.
I don’t write many diaries. If I did not feel this was so important, I wouldn’t write one now. So, if it’s not good enough, please just move on and read something more worthy, or look past my poor attempts at writing to the issue at hand — Patient’s Rights and Children’s Rights and Women’s Rights and just plain Human Rights. That’s the really important part. I think we all know there are far better writers to be had here on DKOS, so you don’t need to rub it in.
Great news!! Karina Hansen is at home with her family, for now. But, she is still at risk. The Save 4 Children Fund has been collecting donations on Karina’s behalf, to help her win the final fight for her freedom. You can donate here.
Karina Hansen is a young woman in Denmark who was diagnosed with Myalgic Encephalomyelitis a few years ago. I am writing this diary about her, because of what happened to her after that. It is a harrowing story, full of drama, with what looks like it may turn out to be a happy ending. It won’t all fit in one dairy, and it is an amazing, enraging, dramatic, heartbreaking story, so I encourage you to learn more about what happened to her. One reason I care so much about her, is that my own child has this same disease, and when I look at Karina, I see what my own daughter’s life could have been, and shiver in dread.
Karina was profoundly ill from M.E. and preferred to remain in the care of her parents, and to receive care from experienced ME doctors. Doctors in Denmark’s socialized medical system wanted her to be placed under their care. Perhaps not coincidentally, one of those doctors, Per Fink, was conducting research on functional disorders and had ambitions to have a new functional diagnosis, Bodily Distress Syndrome, published in the upcoming version of the ICDM, an international diagnostic manual -- a major coup for an ambitious doctor. Also, perhaps not coincidentally, Karina’s parents were receiving payments for caring for a disabled family member, and if Karina was hospitalized, those payments would go to the institution where she was placed.
Karina insisted she wanted to stay with her own doctors. She was examined for mental capacity and found to be competent, and executed documents making her parents her legal guardians in case she became incapacitated. Despite all of that, a team of police and doctors forced their way into her home and dragged her away, while she begged for help and made 24 calls on her phone trying to get help to get away from them, after which she was prevented from making further calls. She was forced into medical care at Hammel Neurocentre. Karina made if very clear that she did not want to be there, and she did not consent to be treated by them. Karina was also forced under the guardianship of a state appointed guardian who had ties to the authorities involved, who appeared to be a rubber stamp for the medical and legal teams, while the papers Karina had executed assigning her parents to the role of guardian were ruthlessly ignored. So, that took care of Karina’s refusal to consent. She was not considered a real person, and therefore, her objections were not considered real objections. The real person, her State Appointed Guardian, was able to consent on her behalf, and against her wishes. Karina’s body was locked in Hammel Neurocentre, where they did with Karina’s body whatever they pleased, regardless of what Karina wanted.
Please take a moment to imagine that it was you that was dragged from your home. That you were locked in a place you didn’t want to be. That you were forced to let people do things to your body that you never consented to. That nothing you did to escape or cry for help made any difference. That you knew your family were doing everything they could to help you, but that they were as powerless as you were. That you were told that you have no right to refuse, and you may never again have a right to refuse. That you were told that you may never again be free. That you were trapped among strangers and not allowed to see any of the people you loved — maybe, forever. Now, imagine that while all this is going on, you feel so sick that you feel like you are literally dying, very similar to having end stage cancer.
Karina’s doctor diagnosed her with “Pervasive Withdrawal Disorder”, based on her “refusal to cooperate”. In the 1800’s, an American physician Samuel Carwright diagnosed slaves with a disorder called “Drapetomania”, which was a disease in which a slave sought to escape his owner. Today, children who fight their parents control over them are diagnosed with “oppositional defiant disorder”. I wonder what is the diagnosis for a doctor who tries to force his medical care on a patient that doesn’t want it? Doctors don’t seem to like to diagnose their own contrary behavior as much as they like to do it in others.
The medical “care” Karina received at Hammel Neurocentre is considered by many familiar with her story to have amounted to torture. The doctors considered her illness to be a “functional” disorder, despite a growing international consensus that M.E. is fundamentally a medical, physiological, not psychological, condition. Doctors there subjected Karina to a protocol of care called CBT and GET, cognitive behavioral therapy and graded exercise therapy. In other words, she was forcibly subjected to counselling and exercise. It’s an interesting question as to how effective forcible counselling can be, and an interesting question as to the distinction between forcible exercise and torture, particularly in a very ill patient. But, the really big problem with forced exercise is that the health of ME patients typically declines after exertion, particularly if they are not allowed adequate time to recover. And, that is what appears to have happened to Karina. At one point, she told her family, “They are killing me.” This may not have been an exaggeration. It is widely believed that the death of Sophia Mirza, an ME patient in the UK, was related to a decline in her condition due to stress of a similar involuntary commitment and subsequent forced exertion from CBT and GET treatment.
A more detailed account of Karina’s and her family’s harrowing ordeal can be found here.
In the meantime, there was a growing scandal in the medical community regarding the whole issue of treating M.E. with CBT and GET. The UK spent millions of dollars funding a study called the PACE trial to prove the CBT and GET were effective treatments for CFS/ME. However, after the study was published, claiming that CBT and GET were so effective that many patients actually recovered (no longer met the definition for the disease), people who were familiar with the subject took a much closer look, and found some very suspicious issues with the study, such as the fact that researchers changed the definition of recovery in the middle of the study, such that a patient entering the study could simultaneously meet both the definition for having the disease and also the definition of having recovered from it — before a single treatment was ever administered. Very neat trick, that! But, a bit controversial. Sort of like realizing all your test answers are wrong, so you just re-write the answer key to make your answers right. Queen Mary University of London spent millions trying to avoid releasing the underlying data for the study, aware that they were facing a significant level of criticism and intense scrutiny, and being unwilling to subject themselves to it, but when they were finally forced to do so, further analysis indicated that there was actually almost no significant improvements in patients based on the original definitions for illness and recovery. By the way, the Sophia Mirza that I mentioned above, the one who died from M.E. after being forced to participate in CBT and GET, was part of that PACE trial. There are now calls for the Lancet to retract the study, but there are millions at stake, as well as reputations, so researchers and the Lancet are holding firm, hoping it will all blow over. Will professionalism and ethics win, or politics? Tune in later, to find out. All of this was going on while Karina remained locked away, being subjected to that same, much touted CBT and GET in Hammel Neurocentre. As the reputation of the PACE trial and CBT and GET treatments for M.E. eroded, so did Hammel Neurocentre’s justification for what they had done, and what they continued to do, to Karina Hansen. Eventually, Karina was transferred to a facility for brain damaged patients for long term care, seemingly worse than when she was first taken. When she was taken, she made 24 phone calls. When she was transferred, she no longer spoke.
Also, during this time, Justina Pelletier, a minor child, was taken from her family in the US, in very similar circumstances, after visiting a hospital which was not the one she ordinarily visited. She had a longstanding diagnosis of mitochondrial disorder, which doctors at this new hospital insisted on re-diagnosing as a “functional disorder”, at a hospital, Boston Children’s Hospital, which just happened to have a remarkable number of doctors on staff who presented themselves as specializing in the field of functional disorders. Abraham Maslow said, “I suppose it is tempting, if the only tool you have is a hammer, to treat everything as if it were a nail.” It seems that patients coming into contact with such institutions engaged in research into functional disorders tend to find themselves re-diagnosed and forcibly incarcerated and treated for functional disorders. Note to self — avoid hospitals who have specialists in functional disorders on staff. BCH locked Justina in a psychiatric ward for a year (that’s a LOT of psychiatric treatment, and a LOT of medicaid payments!), and the treatment that she received, including attempts to coerce her to exercise, such as leaving her in the bathroom and her wheelchair for hours on end, and dragging her around with her feet trailing on the floor so that her toes were torn up, were so troubling that a nurse on the ward, Nurse Higgins, filed a mandated reporter complaint against the hospital for child abuse and triggered an investigation. And, Olga Roche, the Commissioner of Massachusetts DCF, resigned. And then, in a bizarre twist, an Anonymous hacker, later named as Marty G, attacked the BCH website during a fundraising. He reasoned that the only thing that would get BCH’s attention was to hit them in the pocketbook. Officials traced the hack back to him, and he and his wife attempted to escape in a boat, which then had engine problems. They were then rescued by a passing Disney Cruise ship. What are the odds? If you follow the Marty G link above, you will find a great deal about the treatment that Justina received at BCH, and why Marty G and Nurse Higgins believed it qualified as “torture”. This political activist is now facing years of prison time, treated like the type of hacker that steals credit card numbers, instead of a man who is just trying to help a child who is being imprisoned and tortured.
Advocates for Karina and Justina helped to spread word about each other during this period, seeing that both were in similar situations. But, there were some significant differences. Justina lived in a much larger country, the U.S., and she got a lucky break when Glenn Beck chose to highlight her story in The Blaze. Supporters on Justina’s Facebook Page shot up to around 40,000, and suddenly, things started to happen. In a matter of months, Justina was freed, heads rolled, and investigations were in progress. Karina has struggled to get 5,000-6,000 supporters on her page in all this time. There has been no Glenn Beck, no Blaze, to spread her story to a larger audience. Justina was also lucky in one other regard. She was a minor. Even if she had not been released, there was at least a chance that she might “age out” of foster care, although it is equally possible that her disability would have been used as an excuse by DHS to deprive her of her self determination, even as an adult, as was done for a period of time with Isaiah Rider. But, Karina didn’t even have the chance of that. As an adult, she had been deemed to be unworthy of making her own choices, and it was made clear to her that that would continue indefinitely.
So — back to Karina. For years now, advocates for Karina Hansen have been fighting to honor her last known stated wishes, to be with her family, to have her condition treated by experts in CFS/ME rather than having it treated as a functional disorder by Denmark’s medical system, and to have her parents act as her guardians if she is incapacitated.
So, now we come to the exciting news...
A few days ago, it was reported that Karina’s family was once again being allowed to visit her. And, today, it was reported that Karina was allowed to go home with her family for a visit. What is even more exciting is that this happened because Karina asked to go home with them. And, there is more. Karina has asked to stay with them permanently. It seems as if, suddenly, after years of treating Karina as a non-person, she has abruptly been acknowledged as a human being, again.
Her Facebook Page has this to add...
Borgerætsbevegelsen (The Citizens Rights Movement) has found a new addition to the Law of Guardianship which says:
"As a new additon, it is no longer possible to withdraw personal capacity. The person who has had taken her personal capacity can always make personal agreements and make decisions for her own person."
www.familieadvokaten.dk/...
There remain some questions as to whether the government will honor this law and these rights, as they seem not to have honored other legalities and rights in the past, but there is hope. It is my understanding that Karina is still under guardianship. She is still fighting to be acknowledged as a human being with a right to self determination, who is empowered to give consent, and withhold consent, in her own right. But, after so much disappointment, this progress raises hope that the dam has burst and that things are going to start going Karina’s way.
I do not believe that it is a coincidence that so many patients who have been imprisoned based on collaboration between governments and hospitals, and have been forced to undergo treatments that were extraordinarily traumatic and that they did not consent to, were young and/or women. Patients are being discriminated against because, being sick, they don’t have the strength to fight back. Young people are vulnerable because they are inexperienced, have limited resources, and are in an unequal power relationship with older people, and professionals, and, primarily, because they have no rights of self determination of their own, not even an older teen who clearly understands her situation. Patients and parents are overwhelmed by the collaboration of massive hospitals with teams of lawyers, and State Governments who control the CPS, the courts, the Police, and the State Appointed Guardians. Often, female or minority patients and parents have less political or cultural clout when facing off against white male doctors and judges. Children, of course, have almost no clout of their own, anywhere in the world. And, in socialized countries, patients can be powerless against a socialized system determined to help them despite themselves, that values a form of aggressive “help” above even a basic respect for, and protection of, Human Rights.
Whatever the reason, it has to be stopped. The most basic human right is the right of a person to control what happens to their own body -- to have liberty, free speech and the right to consent (which is meaningless without the right to refuse consent) to medical treatment. I often think of these forced hospitalizations as similar to rape or assault, being trapped, imprisoned, with people’s hands on you, making you do things you don’t want to do. I think it is very important to point out how very, very, very dangerous it can be to take away the right to decide what a young woman does with her own body, and then look at a picture of Justina Pelletier or Karina Hansen or Sophia Mirza, and ponder what could happen in such a situation...
I cannot express how much joy it gives me, to hear that after all this time, Karina is finally allowed to decide what Karina wants to do with her own body, and with her own life, that she has a right to say, “NO”. Today, one patient was treated like a human being.
Well, there it is. I’ve only scratched the surface. And, it’s still way too long… Let me end with one last word...
Primum Non Nocere
From the Hippocratic Oath — “First, do no harm”
The Save 4 Children Fund has been collecting donations on Karina’s behalf, to help her fight for her freedom. You can donate here.