Follow me through the orange fog to hear a story that is scary enough to frighten children. It definitely frightens mine.
It's a story about an evil scientist who kidnaps and tortures a young woman. She's still there. And, no matter how hard we try, no one can help her.
And, the villian's name is "Fink". Really, truly!! How poetic can it be?
Read on, for a real life horror story.
And, please sign this petition.. You could be a hero in this story.
Danish doctor Per Fink is an ambitious man. He is the head of the Research Clinic for Functional Disorders and Psychosomatics at the Hammel Neuro Centre in Denmark. Among the many papers he has published is this research paper proposing a new classification that sort of hoovers up a whole host of messy diseases like fibromyalgia and CFS, and wraps them up in a neat little box, labelled "Bodily Distress Disorder" (i.e. "Crazy"). According to him, the "cure" for these diseases is now very simple -- just a bit of antidepressant, a good talking to (cognitive behavioral therapy), and a few laps around the block (graded exercise therapy), and the patient is as good a new. I'm sure it's a very exciting time in his life. His new classification "Bodily Distress Disorder" is up for consideration in the ICD-11 and if it makes it, it will probably get into the next edition of the DSM, the manuals of diagnostic criteria that are the "Bibles" of medicine. He will have a fine legacy. He'll have a whole disease named after him!
So, this ambitious fellow has this nice big clinic, and he's interested in studying people with Myalgic Encephalomyelitis. And, then he hearsabout this patient who lives in his area, who has Myalgic Encephalomyelitis. Wouldn't it be cool if this young lady, Karina Hansen, would come to his clinic for treatment? It would make for some great research! But, unfortunately, Karina has her own doctor, and does not want to see Dr. Per Fink, and she is stubbornly convinced that she has M.E. because four doctors told her so -- Ignorant Ungrateful Woman! So, what does Per Fink do? He uses his medical and political connections to get Karina "sectioned" (declared crazy) and forced into his clinic. They sent a medical SWAT team to her house, burst in the door, and hauled her away screaming, and held her parents back to prevent them coming to her aid. This occurs even after Karina has been found competent multiple times, and signed documents indicating that she wants her parents to be her guardian.
At the clinic, she is forced to undergo Graded Exercise Therapy. Now, research on M.E. patients shows that M.E. patients have a delayed recovery from exercise. So, forcing exercise on M.E. patients can cause their condition to deteriorate, because they cannot recover sufficiently between sessions. In addition, M.E. is a neuro-immune disorder, and M.E. patients need immune therapies to support them. He and his staff, of course, discontinued all treatments for her M.E.
So, let's review. A twenty five year old woman, who was tested and found competent, twiceand who requested her parents as guardians if she were to become incapacitated, is abducted from her home, and forced into a mental institution, where she is being experimented on, by a man who dreams of getting his work into the next edition of the DSM. She has been quoted as saying, "They are killing me." Her parents are not allowed to visit her at all, not even at Christmas.
Does anyone see anything wrong with this picture?
Well, it gets worse. This fad, this trend, of labelling patients with messy diseases with the "somataform" or "bodily distress" diagnosis is pretty popular. It has spread to Boston, and the Boston Children's Hospital has used this same technique to diagnose children with somataform disorders, and if their parents object or try to return to their original doctors, who diagnosed them with a real illness, like mitochondrial disorder, BCH will simply report them to DFS for "medical child abuse" (i.e. daring to disagree with your doctor aka GOD). DFS "defers to the medical expertise" of BCH, and assigns a temporary guardian to the child, who then puts the child into BCH. There have been 5 such cases in the last eighteen months, and BCH is now under investigation, and there are calls to shut down their psychiatric ward Baden 5, which is ground zero for these horrors.
The most recent case is Justina Pelletier. The judge, perhaps aware that taking parents children away simply because one doctor disagree with another doctor's diagnosis might not look good in the papers, issued a "gag" order, so Justina's parents are having trouble raising awareness of their family's plight. And, since it's been almost a year, and Justina has not received treatment for her mitochondrial disorder in all that time, she's getting worse. She's in a wheelchair, and paralyzed in her lower body. Her family is afraid the damage may be irreversible at this point. Her father is so desperate now, that he is speaking out despite the gag order. They, too, are limited to visiting their daughter to just one hour a week, and all communications are supervised, and Justina is punished if she communicates the wrong things. The hospital complains that she "regresses" in the presence of her parents. In other words, she gains a bit of confidence that someone might actually save her from this Hell on Earth, and so she gets a little more feisty about fighting on her own behalf which her abductors don't like. When the parents leave, Justina loses hope again, and becomes "compliant" which the doctors like. After the State took Justina, they didn't have any place to put her, so instead of giving her a real home, they just left her in the psych ward of BCH for almost a year (What a nurturing environment for a teenage girl!), even though she was well enough to be discharged.
BCH did something similar to Elizabeth Wray just a year or so earlier. In fact, the facebook page Free Elizabeth Wray is filled with supporters who are fighting to free Justina Pelletier, because their cases are so similar.
Back to the story of Karina Hansen, her family has requested that she get a second opinion, and a noted M.E. doctor has volunteered. All that is needed is permission from her guardian, who seems to be in cahoots with the evil Dr. Per Fink and company. But, all we can do is to keep trying, so there is a petition to ask her guardian to allow a second opinion. If you are feeling at all charitable, I hope you will add your support.
In researching all these incidents and others, Sophia Mirza in the U.K, Karina Hansen in Denmark, Elizabeth Wray and Justina Pelletier in Boston, I see another pattern that sort of creeps me out, of young women with male doctors, having the most basic rights, the right to decide on their own medical care (or have parents make this decision), the right to determine who touches and does things to your body, being taken away from them. In essence, these young women have been abducted, held for extended periods of time against their will, isolated from their families and emotional support networks, subjected to brainwashing (techniques to gain their "compliance to treatment"), had their rights to free speech abridged (communications with family restricted and monitored), and been subjected to what amounts to torture (involutarily forced to undergo GET, when research indicates that such patients have trouble recovering from the physiological stress of GET).
I'm asking for people on Daily KOS to help Justina and Karina in any way that you can. I can't quite figure out what's going on with Elizabeth. Her page is mostly devoted to Justina right now. I hope she's with her parents now.
Also, we need to fight to keep these changes such as somataform or bodily distress disorder diagnoses OUT of the ICD-11 and the DSM.
And, we need to advocate for legislation to protect families from these types of "medical child abuse" charges. We might just need to do away with the new "child abuse specialist" career option for doctors which has figured strongly in the Boston Children's Hospital mess. And, perhaps it's time to close down BCH psychiatric ward.
And, we need to examine the ethics of placing a person in the care of a doctor or hospital that has been instrumental in taking away their rights to self-determination. This is clearly such a gross violation of the trust inherent in the doctor/patient relationship that no doctor or institution who had done this to a patient could ever hope to gain their trust and provide any kind of effective therapy. All of these doctors and institutions have behaved in a grossly unethical fashion in allowing such a situation. It makes the whole things look very much like what it is -- abduction, pure and simple. By removing parents from the equation and replacing them with a very compliant state-appointed "guardian" who defers to the "medical experts", these institutions and physicians are eliminating the checks and balances that keep these young persons safe, and the medical staff are gaining absolute power, and are achieving absolute corruption.
I have also read comments regarding the Boston Children's Hospital controversy, that it is educated mothers who research their children's illnesses and advocate for them strongly that most often lose custody based on these "child abuse specialists" efforts, on the grounds of "medical child abuse", because they are seen as not being "compliant" enough with the medical professionals.
We need to change the law so that simply choosing one doctor over another doctor is not grounds for a charge of medical child abuse. After all, the State licenses doctors, so if a parent chooses a state-licensed doctor, and the state complains that the doctor's care is inadequate, then it's the State that is at fault for licensing the doctor, not the parent. It's time to get parents out of the middle of these internecine medical rivalries, and push the responsibilities for sorting these turf wars out, back to the State and the medical community. Medical child abuse charges should be "beyond a shadow of a doubt", and in light of the trauma to a child in a custody case, should not occur unless there is demonstrable likelihood of severe irreversible loss of function or loss of life likely to occur within a very short time frame. And, we need to draw very strong guidelines about how short emergency custody should be, and how difficult it should be to turn temporary custody into permanent custody. The default should be that emergency custody is ended. There should be a very high bar for turning emergency custody into permanent custody.
And, then there's the conflict of interest, that a doctor or institution who reports a patient to DFS, gains financial benefit by doing so, if the patient was going to leave, and by reporting the patient, the patient (and her insurance reimbursements), stays.
I care deeply about this issue. My own daughter has fibromyalgia. I have seen the dark hints of what is in this story. I have seen how she gets better with appropriate immune support, and then starts exercising more, and how she gets worse when her treatments are removed or she is forced to exercise beyond her "energy envelope". I have seen doctors try to blame me or blame her for her illness. I have had doctors recommend she go into intensive GET programs. I have heard from patients who have been subjected to that. And, I have had a doctor suggest that we "get the parent out of the equation".
Justina may age out when she gets to be 18, and get the right to make her own decisions. If she doesn't get out before then, I hope that gets her out.
Karina is twenty five. There is no hope for her, unless we can help her.
I admit I'm not much of a diary writer. Please ignore my technique, and give the content some consideration. Thank you for plowing through it, if you actually got this far. Well, here goes. Pushing the publish button...