A British doctor who specializes in the devastating disease myalgic encephalomyelitis (ME) has joined an international bid to free a young ME patient who was incarcerated in a Danish hospital a year ago. Dr. Nigel Speight wants to examine Karina Hansen, a sane but sick woman aged 25 who was forcibly removed from her home in Denmark on February 12 last year, and provide a second opinion as soon as her state-appointed guardian gives the go-ahead. If he gains access Dr. Speight believes he will be able to rescue the young woman from the hospital’s mental ward, where she is being held against her will and the will of her parents.
A group known as Justice for Karina Hansen (J4KH) has been petitioning for the young woman’s release from Hammel Neuro Center since May last year. Their most recent campaign was launched last Thursday, in the form of an open letter from her parents, Per and Ketty Hansen, to the man appointed by the Danish health authorities as Hansen’s guardian. In terms of the World Health Organization’s (WHO) A Declaration on the Promotion of Patients Rights in Europe (March 1994), that states patients “should have the possibility of obtaining a second opinion,” they have asked that Dr. Speight be allowed to see her and give a second opinion. The ME Association in Denmark has undertaken to pay his travel costs. J4KH reported on their Facebook page that the guardian had acknowledged receipt of the letter and undertaken to discuss the matter with “those in charge of her care.” The group has also launched a new change.org petition that already has more than 1,665 supporters.
The bedridden Hansen was taken from her home in Holstebro County last February, by five policemen who forced their way into the house; they were accompanied by two doctors, two social workers and a locksmith. Hansen called for help, but none of the family members could get past the police. She also phoned her sister, Janni asking for help, saying she did not know where she was being taken. The following day she phoned her mother from her cell phone asking how she could “get out of here.” She said she could not “take this.” They later discovered that she made a total of 43 calls and sent seven text messages before her phone battery went flat. The last call was to the police. The Hansens have asked for transcripts of the calls, but have received nothing. They have asked that her phone be recharged, but she has to do it herself and cannot get out of bed.
The Hansens said they were not given any reasons for the action and received no official paperwork relating to it. All they found was a note on the floor with a telephone number and message to say they would be contacted daily by a doctor. This did not happen, and they have not been permitted to visit their daughter because they do not support her treatment. Her sister, Janni has seen her briefly and is very concerned about her condition. The Hansens have taken legal action, but the court system is slow and drawn out.
Treatment for a Functional Disorder
Several days after Hansen’s removal, her parents received a letter from Nils Baile Christensen, a psychiatrist who said he was in charge of the treatment she would be given. Christensen is from The Research Clinic for Functional Disorders and Psychosomatics in Aarhus that is headed by Prof. Per Fink. Fink is the man who in 2010 introduced a new medical definition known as “bodily distress syndrome” (BDS) that categorizes all the “functional” syndromes that have physical symptoms that cannot be “explained by well-recognized medical illness.” Typical symptoms include headache; back, muscle and joint pain; stomach problems; shortage of breath; and fatigue. Illnesses that are lumped together under BDS include fibromyalgia, irritable bowel syndrome, chronic fatigue syndrome (CFS) and ME.
In Denmark functional disorders are labeled “psychosomatic,” and this particular clinic treats patients with cognitive behavioral therapy (CBT), graded exercise therapy (GET), and anti-depressant drugs. It has been reported that the clinic does not have experience treating ME patients that are severely ill, and there is widespread concern because it is known that any form of physical exertion can harm ME patients.
“All the other symptoms can be made worse by physical exertion, and mental effort can make the physical fatigue worse.”
Dr. Nigel Speight
Hansen has been sick since she was 16-years-old, and has been diagnosed with ME, an illness that the WHO has coded “neurological” since 1969. Over the years she has been hospitalized several times, undergoing treatments that did not help her condition, which had made her extremely light and sound sensitive. ME was confirmed the correct diagnosis by several doctors, at least one of whom expressly noted that she “had no depressive or psychotic tendencies.” By 2009 the young ME patient was completely bed-bound, in a great deal of pain, and constantly exhausted.
In 2012 Hansen’s general practitioner and another doctor visited her without an appointment, stating they had been told by the government’s Board of Health to “evaluate her mental state.” While they found she her to be “mentally competent,” they said she would have to see a psychiatrist. This is when her story first broke, Hansen choosing pictures that could be used for publicity. She also hired a lawyer and went through the legal procedure to give her parents power of attorney to make all decisions for her when she got too sick to be able to make her own decisions.
Even though Hansen’s health care category stated that she could opt to see any doctor she wishes to see, and that the Danish government cannot assign doctors to her, she was assigned a psychiatrist by the Board of Health. At that stage she had her own physician, a dietician, and a dedicated health care giver, and was living at home with her parents and family.
Even though Hansen has been diagnosed with ME on numerous occasions, the research clinic doctors have now changed the diagnosis to pervasive arousal withdrawal syndrome (PAWS). According to research published by the National Institutes of Health (NIH), PAWS (which was previously known as pervasive refusal syndrome) is a very rare “child psychiatric disorder” about which little is known or been written about. Symptoms include resisting help and withdrawing socially.
Dr. Nigel Speight
The British doctor Speight believes that the emphasis put on the efficacy of CBT has “most unfortunately” resulted in the disease being viewed from a psychiatric standpoint rather than as “a ‘genuine’ disease.” He is convinced that ME is “primarily an organic illness” with no psychological factors causing it. There may though be “secondary psychological consequences.” This is clearly a reason he wants to rescue the young Danish ME patient who has been held at the hospital in Hammel for a year.
Medical advisor to the British ME Association, and reputedly the most experienced and knowledgeable ME consultant pediatrician in the United Kingdom, Dr. Speight has played a major role in the rescue of many children with ME from “care proceedings” by social services. In a recent interview he said it was “a very painful area” and one of the most unpleasant things he has witnessed in his entire medical career. A lot of it comes from “a simple failure of doctors to protect patients by diagnosing them with ME/CFS“ which “leaves them at risk of being persecuted for alternative explanations.”
He said he had been involved in over 30 cases, all of which resulted in child protection proceedings. However, most had been averted by the “second opinion” process. He described cases that are very similar to Hansen’s, where children were removed from their homes. For instance, he described how a Scottish teenager who had been diagnosed with ME that became very severe, and how she was sent to a psychiatrist who diagnosed pervasive refusal syndrome. By the time he was called in to intervene she was in a psychiatric ward, curled up in a fetal position, being tube fed – and like Hansen, was highly sensitive to light and sound. The story ended happily with her being transferred to “a gentle nursing home” where she had a slow but steady recovery. However, “how you can change from having ME to having a purely psychiatric illness just because you have been handed from a pediatrician to a psychiatrist, I do not really understand,” he said.
“It is the medical profession’s duty to be able to make a confident, clear diagnosis of ME/CFS and if they do that, there should be protection. But many of the cases I have seen have not even been diagnosed.”
Dr Nigel Speight
Currently involved with about three cases in Britain, this British doctor is the best hope Hansen’s parents have had in the past year. His willingness to help rescue the young ME patient being held in a mental ward at the Danish Hammel Neuro Center Hospital has resulted in excitement on the part of the J4KH group which is headed by people who themselves suffer from ME and CFS. All the family wants is their little girl back.
By Penny Swift