Globally: Severe Cases of Denial of Care


Justina, Karina, and Sophia

 

 

1. JUSTINA PELLETIER, IN THE US

 

(Click HERE for ABCNews Article about the Coalition’s Work on this Case)

 

Last February, 15-year-old Justina Pelletier was forcibly removed from her parents’ custody during an inpatient stay at Boston Childrens’ Hospital for the flu, according to several reports by the Boston Globe. While she’d had ongoing treatment for a longstanding diagnosis of “Mitochondrial Disorder” from doctors at Tufts Medical Center, Justina’s new doctors at Boston Childrens’ insisted that diagnosis was wrong because Justina has Somatoform Disorder instead – that is, her symptoms are “all in her head”.

Because Justina’s parents disagreed with that conclusion, insisting  their daughter needed her established treatments for Mitochondrial Disorder, BCH initiated emergency custody proceedings that enabled them to forcibly detain the girl for mental health treatment.  She has now been held in a locked inpatient mental health ward against her wishes – and her parents wishes – for ten months, with supervised family visits once a week.

Justina has been refused many of the treatments prescribed by doctors familiar with her case at Tufts, and has been refused consultation with those doctors, who were barred from involvement in her case at the start.  Like Justina’s parents, her Tufts physicians have been threatened with arrest if they violate a court gag order by publicly speaking out.  Mitochondrial Disorders are progressive and can be life-threatening.

Just before Christmas the courtroom erupted with a shout of “Evil!”, Boston Globe reported, as Judge Joseph Johnston announced the court’s decision to hold Justina through the holidays, while a court investigator looks into the case.  Judge Johnston reconsidered the case again on January 10, when Lou and Linda Pelletier emerged from the courtroom, clearly more hopeful than they’d been in the past.

Justina Pelletier remains in the custody of the state, now an inpatient at Wayside Youth and Family Support Network in Framingham, according to Boston Globe.

For clarity on common confusions about patients’ rights with respect to Somatoform Disorder, click here.

For a list of the rights of patients with, or considered for, Somatoform Disorder (or any other version of “it’s all in your head”) click here.

To assist us in our efforts to free Justina Pelletier, join The Coalition here, then download our symbol and post it freely to show your solidarity.

 

 


 

 

 

 

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2. KARINA HANSEN, IN DENMARK

(Click HERE for more information about Karina Hansen and the threat of “BDS”)

 

Karina Hansen is a twenty-five-year-old woman with severe ME, or “Myalgic Encephalomyelitis”, commonly known by the misnomer “Chronic Fatigue Syndrome”.  Last February Karina was forcibly removed from the home of her parents, who cared for her, to be held against her will at the Research Clinic for Functional Disorders and Psychosomatics in Denmark.  She had been evaluated for psychiatric problems with entirely normal results on repeated occasions.

The Clinic, run by psychiatrist Per Fink, is developing a replacement for “Somatoform Disorder” for the upcoming edition of the international coding manual, and according to that approach all cases of ME have psychiatric causes.  This contradicts the World Health Organization’s classification of ME as a genuine neurological illness.

Karina has been refused treatments prescribed for ME and has not been allowed to see or speak to her physicians of choice.  She has not been allowed access to her attorney of choice.  Her parents and legal power of attorney have been forbidden from involvement in her care and have been given no explanation as to why Karina’s decision not to be treated at the Clinic has not been respected.  They are not permitted to see or speak with their daughter.  

 

 

 

 

 

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3. SOPHIA MIRZA, IN ENGLAND

Sophia Mirza suffered for six years from severe “ME”, Myalgic Encephalomyelitis, often known by the misnomer “Chronic Fatigue Syndrome”.

ME has been classified by the World Health Organization as an organic neurological illness – not a mental illness – since 1969, but Sophia was unable to find medical support in the UK.  Like Justina Pelletier and Karina Hansen, she was involuntarily committed to a mental health facility for many months, after which her condition deteriorated.  Two years later, at the age of thirty-two, Sophia passed away in her bed at home.

Concerned to uncover the truth about Sophia’s death, family allowed research on Sophia’s spinal cord.  According to Criona Mirza, researchers found:

“. . . unequivocal inflammatory changes affecting the special nerve cell collections (dorsal root ganglia) that are the gateways (or station) for all sensations going to brain through spinal cord. The changes of dorsal root ganglionitis seen in 75% of Sophia‘s spinal cord were very similar to that seen during active infection by herpes viruses (such as shingles).”

Sophia Mirza’s death certificate lists the misnomer “Chronic Fatigue Syndrome” as cause of death, directly contradicting assertions of good health on legal paperwork ordering her forced detainment in a mental health facility.