By Holly Latham
Why should the M.E./CFS community rally around Karina Hansen and her family?
Karina Hansen is a 24-year-old Danish woman who has had M.E. (myalgic encephalomyeltitis) since she was 16. On February 12, 2013, five policemen, two doctors, two social workers, and a locksmith came to her home and forcibly removed Karina Hansen from her bed and transported her to Hammel Neurocenter.
Karina was able to make a call the next day to her mother saying, "“How can I get out of here? I can’t take this." Since that time her parents have been prohibited from seeing her even though preventing relatives from visiting their family members in the hospital is a violation of basic human rights.
Shortly afterwards, Karina’s parents received a letter from a psychiatrist, Nils Balle Christensen, which said that he would be in charge of Karina’s treatment at Hammel Neurocenter. (In May 2012 a previous attempt to section Karina was unsuccessful, as she has always been declared psychologically healthy.) There is no evidence or even any charge of physical, mental, or emotional abuse by Karina's parents and also no evidence that Karina is mentally ill. She was taken from her home because she and her parents chose against the type of treatment the Research Clinic for Functional Disorders and Psychosomatics offers. Her parents had chosen to pay for a private physician and dietician to treat Karina, because they strongly felt that the treatment offered by Dr. Nils Balle Christensen would be detrimental.
What is this treatment? Why is this treatment bad for her?
Nils Balle Christensen, the psychiatrist in charge of Karina's care, works for The Research Clinic for Functional Disorders and Psychosomatics. This clinic classifies illnesses such as CFS, fibromyalgia, and irritable bowel syndrome as “bodily distress syndrome.” This is a new diagnosis created by these doctors and is classed as a type of functional disorder. The treatment for a functional disorder is listed on their website as cognitive behavioral therapy, graded exercise therapy, and in some cases antidepressants.*
Graded exercise therapy can be detrimental to patients with M.E. (Twisk, Maes 2009).* Studies have proven that people with M.E. respond poorly to exercise, especially patients who are severely ill, like Karina (VanNess et al 2008 and Ciccolella et al 2007).
Cognitive behavioral therapy (CBT) was not designed to treat serious illnesses, such as M.E. It is intended to change how people think, specifically “illness worries.” According to the Research Clinic, “Illness worries are thoughts about your illness or symptoms that make you worry that you may be seriously ill."* Karina Hansen and her parents have already said no to CBT. Karina is seriously ill, not “worried.”
Why should you care?
Karina's case sets a very bad precedent for other M.E. sufferers in Denmark and around the world. Is this the future of M.E. treatment? If this diagnosis and treatment are included in diagnostic and/or treatment manuals used worldwide, forced treatments, such as the ones Karina is being subjected to, could reach far beyond Denmark. Will you be able to seek any kind of treatment anywhere if you fear this will be the result?
We need to remember that Karina Hansen did not choose this treatment. Karina Hansen had hired a lawyer and given her parents power of attorney. She had a physician. Yet, their efforts to give her the right to choose her own treatment were ignored. This could happen to any of us.
How do we make this case widely known?
Share! Share! Share! The more people that show they care, the more likely it is that officials will take notice and act.
Here are just some of the places you can find information and updates about Karina:
YouTube video.Please note this video has a posted amendment to the information about Sophia Mirza.
ME Association, Denmark Facebook page.
Justice for Karina Hansen Facebook page.
YouTube video update.
What can you do to help?
Send a postcard! Karina is getting these postcards! Let's show her and the hospital staff that Karina has worldwide support! Information for sending postcards is here. The ipetiton is here.
Sign these petitions! Sending a postcard can be more than some of us can manage. Here are some petitions you can sign in addition to the ipetition: Change.org, Causes.com.
Write a polite letter or email to Danish officials. We want the M.E./CFS patient community to be represented in a positive manner. A sample template written in consultation with Rebecca Hansen, chairperson of the ME Association Denmark , can be found below. There is a place to fill in your own experience with M.E. on the template. Remember to sign your name at the end! You can find the addresses here.
Write a letter to Amnesty International. The template for the letter is here.
Any and all opinions are my own. Information was gathered from these sources as well as the referenced materials listed below:
* ME Association, Denmark
* A Visit to Karina – a Question of Human Rights by Rebecca Hansen
* Functional Disorders
* Twisk and Maes, A Review on CBT and GET
*VanNess M, Snell C, Stevens S. Diminished cardiopulmonary capacity during post-exertional malaise. Journal of Chronic Fatigue Syndrome 2007; 14(2): 77-85
*Ciccolella M, Stevens S, Snell C, VanNess M. Legal and scientific considerations of the exercise stress test. Journal of Chronic Fatigue Syndrome 2007; 14(2): 61-75
* Bodily Distress Syndrome
Template for writing officials in Denmark:
(Please add your personal experience with M.E. and any problems you have suffered resulting from any inappropriate treatment you have received.)
Dear Sir or Madam:
I am writing to you concerning the treatment being offered in Denmark to those suffering from myalgic encephalomyelitis (M.E.). In case you are unfamiliar with M.E., it is a debilitating physical illness that has been classified as a neurological illness by the World Health Organization since 1969.
It has been brought to my attention that a young woman with myalgic encephalomyelitis named Karina Hansen has been forcibly removed from her home on February 12, 2013 for treatment she did not choose.
Karina is at Hammel Neurocenter and being treated by Nils Balle Christensen, a psychiatrist with The Research Clinic for Functional Disorders and Psychosomatics. Karina's parents have not been allowed to visit her despite the fact that preventing relatives from visiting their family members in the hospital in Denmark is not allowed. It is my understanding that human rights, such as being allowed to visit one's family, should be given the highest priority.
This situation has prompted many people around the world to ask:
Does Denmark recognize the World Health Organization code for M.E.? Please note that benign myalgic encephalomyelitis is coded as G93.3 in the chapter entitled "Diseases of the Nervous System" under the subheading "Other disorders of brain." To further clarify, myalgic encephalomyelitis is listed under diseases of the nervous system and NOT mental and behavioural disorders. It is my understanding that any country that accepts the WHO Regulations for nomenclature is obligated to accept the ICD classification. If Denmark accepts the ICD classification of M.E. as a neurological illness, than why are doctors who specialize in mental and behavioural disorders in charge of an M.E. patient's treatment?
Is forced psychiatric treatment the future of all M.E. patients and their families? Myalgic encephalomyelitis can result in death without proper medical treatment. One well-known case is that of Sophia Mirza in England.
Do M.E. patients in Denmark not have the right to choose which treatment they receive?
Who monitors experimental treatments for M.E. such as Graded Exercise Therapy and Cognitive Behavioural Therapy to be certain that no basic human rights are being denied?
Do patients with M.E. not have the basic human right to see their families?
Many people around the world are concerned with Karina Hansen's treatment and have signed petitions in support of Karina and her family. These actions show that Karina Hansen and her family have worldwide support.
I ask that you please do all within your power to restore Karina Hansen's human rights and see that she has proper medical treatment for myalgic encephalomyelitis.
I would appreciate your prompt attention to the matter. Thank you for your consideration.