• Phoenix Rising needs funds to operate: please consider donating to support PR

Another Medical Kidnapping

leela

Slow But Hopeful
Messages
3,279
Likes
7,327
Location
Couchland, USA
Admittedly, some of the sources cited are dubious at best. However, one has no trouble believing this chicanery,
babblery, and abusiveness:

http://westhartford.patch.com/group...ht-hospitals-kidnapping-of-west-hartford-girl

The hospital refused to allow the girl, 15-year-old Justina Pelletier, to leave after her parents brought her in with a case of the flu. Justina had been diagnosed and treated by Tufts doctors for Mitochondrial Disorder, a rare genetic disease. On Feb. 10 her doctor was unavailable and sent her to Boston Children’s Hospital.

But the hospital told Justina’s parents, Lou and Linda Pelletier, that Mitochondrial Disease, which Justina’s 25-year-old sister is also being treated for, does not exist, Pelletier told the Daily Mail. Instead, hospital doctors diagnosed the teen with Somatoform Disorder, a mental illness characterized by pain and gastrointestinal symptoms that have no identifiable physical cause.
 

leela

Slow But Hopeful
Messages
3,279
Likes
7,327
Location
Couchland, USA

alex3619

Senior Member
Messages
13,802
Likes
37,636
Location
Logan, Queensland, Australia
This is so unbelievably horrifying. I can't even believe it is happening in the US.

Why aren't her Tufts doctors fighting for her?

I didn't even think mitochondrial disease was a disputed diagnosis. Aren't there genetic tests proving it?
It is not clear from what I read what tests she has had or not had. We only have public statements, not details. However it would, I think, be required that if a genetic disorder is diagnosed and a new diagnosis is desired by some doctors that first they have to disprove the first diagnosis. Psychobabblers do not typically do so, they just start by abusing their powers. Doctors have the power to commit people, but an average doctor cannot easily undo this.

I hope they sue the doctors and hospital for both compensation and punitive damages if a case can be established.
 

leela

Slow But Hopeful
Messages
3,279
Likes
7,327
Location
Couchland, USA
How do you sue for almost an entire year of a young person's life, as well as the distress and *actual* psychological damage the psychobabblers' actions might cause for all family members? It is so appalling. One should have sovereignty over one's own person. At the very least.

And the whole gag order thing. Abuse someone atrociously, and then try to prevent them from speaking about it. Nightmare.

And yes, @Ema, one wonders what kind of dreadful personal/career politics prevents the original doctors from intervening more forcefully.
Though I think one of the articles mentions something about those that sectioned one of the young girls limiting the doctors
who could have input. Just like with Karina.
 

leela

Slow But Hopeful
Messages
3,279
Likes
7,327
Location
Couchland, USA
Ugh! I will need so many puppy snuggles after reading this.
Me too! Sorry!! I ought not to have posted such things. :aghhh:
This kind of thing upsets me so much. Personal sovereignty seems like it shouldn't even need arguing for. I simply do not understand anyone who wants to completely dominate another human, or any, being.
 

JT1024

Senior Member
Messages
582
Likes
414
Location
Massachusetts
This is very scary.

Now if her diagnosis is in question, perhaps the docs at Boston Children could take a field trip about 12 miles north of Boston to Courtagen.... They test for mitochondrial disorders: http://www.courtagen.com/patients-what-is-mito-dysfunction.htm To me, it sounds like they DON'T WANT to find out.

I thought it was interesting that Courtagen was mentioned by The CFS Patient Advocate in his last blog post about the recent Mt Sinai ME/CFS Conference here: http://cfspatientadvocate.blogspot.com/

Surely Boston Children's has at least ONE doctor aware of the availability of this testing. But then again, they're seemingly more concerned about the politics of medicine here, not about the welfare of Justina.
 
Messages
385
Likes
664
"The [psychiatry] team has the following membership:

Physician-leader and director (Giuseppe Raviola, MD)

Quality improvement consultant (Katie Gallagher, MA)

Nursing leader (Sally Nelson, RN, MEd)

Practice administrator (Patrick McCabe, LICSW, MBA)

Informatics specialist (Jason Kahn, PhD)"

http://www.childrenshospital.org/centers-and-services/department-of-psychiatry#sthash.KBXBS2fq.dpuf

(And Dr. David DeMaso, Psychiatrist-in-Chief
http://www.childrenshospital.org/ce...nter/programs-and-services/quality-and-safety)


"Our Psychiatry Quality Program...

Offers training and education to affect clinician behavior in using evidence-based practices...

Follows best practice for quality as outlined by national organizations:

Institutes of Medicine (IOM)

Agency for Healthcare Research and Quality (AHRQ)

American Academy of Child and Adolescent Psychiatry (AACAP)"


http://www.childrenshospital.org/centers-and-services/department-of-psychiatry#sthash.KBXBS2fq.dpuf
 

alex3619

Senior Member
Messages
13,802
Likes
37,636
Location
Logan, Queensland, Australia
@Ren, improperly applied EBM, and that is most of it in my opinion (at least in psychiatry), rubber stamps medical practice that meets tickbox criteria, without properly investigating. Most psychogenic diagnoses are level 5 evidence as they are totally unsubstantiated and based on first principles, and I am very generous in allowing level 5 evidence as it is not science, and is not objective.

This kind of thing claiming to be science fulfills every definition of pseudoscience I have yet read. Even their much vaunted RCTs are not blinded, are subject to considerable bias, are subjective, give pathetic results which means they keep redefining endpoints in ways that do not make sense (look at PACE). These studies are founded on unproven hypotheses, never really test those hypotheses (except for deconditioning, which they typically disprove while claiming to prove it), and so do not deserve more than level 5 evidence, though a two or three level downgrade might also be appropriate. Its not level one under EBM.

However most of psychiatry stands exposed here. Nearly all of it is unsubstantiated hypotheses ... which of their diagnostic entities has strong objective criteria? None? A few? Its not science, yet they claim it is science. Without a claim it gets a label of nonscience (Karl Popper) but with a claim that it is scientific it qualifies as pseudoscience. If there are strong diagnostic markers then I think the diagnosis nearly always moves from psychiatry to neurology.

Even bio-psychiatry is in doubt here: as has been pointed out in recent years a few times, if an RCT is based on diagnostic criteria that are not valid, is there any value to the RCT at all? Its a real problem.

This is not the same as claiming people do not benefit from psychotherapy. Everyone has problems, and some benefit from getting guidance - otherwise known as counseling. However this brings formal diagnoses in serous doubt, and every study based on those is in doubt along with it.

It also brings sectioning patients who are sick but not suicidal or violent into doubt. Its a guess. How can they section anyone on a guess? How is that fair? Who is responsible for not fixing this? Government? The entire medical profession?
 
Messages
385
Likes
664
It would be nice to know what "evidence-based practice/medicine" and IOM literature these individuals have used to justify what they've done to this family.

Alex, I agree with what you wrote. I'm just generally speechless.

I'll have to look for it, but someone sent me a link to a book on ethics / research ethics from a university course. The book is free online. I haven't been able to explore it yet, but I was thinking it might be useful for us (the ME community).
 

leela

Slow But Hopeful
Messages
3,279
Likes
7,327
Location
Couchland, USA
It's back to that same gaslighter/abuser psychotic behaviour again.

Do something so outrageous (kidnapping), crazy-making (denial of legitimate medical diagnosis), cruel (deprivation of needed treatment/imposition of harmful one) and morally depraved (separating/isolating family members as well as their chosen physicians) and then use the perfectly appropriate responses to all that--outrage, horror, physical symptoms, grief, frustration, more outrage--as "evidence" that the patient/family/other doctors are hysterical and psychologically unsound as a collective?

I mean, who sounds insane in this scenario?

Not to mention the likelihood that they are incurring genuine psychological damage by inflicting this hideous, disempowering nightmare on that whole family, most especially that young woman. What outcome are they expecting from this?
 

leela

Slow But Hopeful
Messages
3,279
Likes
7,327
Location
Couchland, USA
By Jonathan Vankin, Wed, November 27, 2013
The health of 15-year-old Justina Pelletier is fading fast as a Boston hospital where she’s been held since February refuses to let her go home, her family says.

The teenager is confined to a psychiatric ward at Boston’s Children’s Hospital and is now unable to even walk on her own, her family told the Daily Mail Online newspaper, which recently investigated the case.

The hospital won’t let her have her iPhone or her collection of beloved fluffy animal toys. But more devastating than that, she is permitted only one hour per week to see her family and the hospital eavesdrops on her phone calls home, her family alleges.

Why? The hospital says that the severe pain she suffers, from the poorly-understood hereditary condition Mitochondrial Disease, is actually all in her head.

Justina was diagnosed at the Boston-area Tufts Medical Center three years ago. She has required two surgeries to cope with the effects of the disease, which causes severe muscle pain and weakness.

Other symptoms, according to the advocacy group MitoAction, can include developmental disorders, autism-like traits, neurological problems and their related psychological issues such as confusion and memory loss — as well as other debilitating disorders.

Her older sister has also been diagnosed with Mitochondrial Disease, which is a genetic condition believed to affect one out of every 3,000 to 4,000 people in the United States.

When Justina got to Boston Children’s Hospital, doctors there said that her earlier diagnosis was hogwash. Really, Justina was just mentally ill.

She had a form of Somataform Disorder, they said, a psychological condition that causes patients to imagine physical pain and other symptoms so vividly that the pain is experienced as real — even though doctors cannot find any cause for it.

Patients with Somataform Disorder are not faking their symptoms, medical professionals emphasize. Patients are not aware of the cause and therefore the pain they experience is real.

Justina’s parents feel that the hospital is accusing them of abusing their daughter.

“They told me that Mitochondrial Disease did not exist,” said her father, Lou Pelletier who is a financial planner. “They said she had been misdiagnosed, overmedicated and forced to undergo unnecessary procedures. It was as though they were accusing us of needlessly harming our daughter.”

The hospital, which has not commented publicly on the case citing a court-imposed gag order, has prevented the Pelletiers from seeking a second opinion on their daughter’s condition, the family says.

In 2008, Major League Baseball player Rocco Baldelli was diagnosed with Mitochondrial Disease, but it was later learned that his condition was actually a different kind of muscular disorder called channelopathy, which is somewhat less serious. He retired in 2010 due to the condition.

http://www.opposingviews.com/i/heal...-disorder-deteriorates-hospital-confines-her#

even though doctors cannot find any cause for it
But doctors *did* find a cause for it! Genetic mitochondrial disease. WTF.