Prisoners in the Dark

Fence IOW

In the past few days, I have come across the story of Karina Hansen, who is a young woman with severe ME. 15 months ago, she was forcibly removed from her home in Denmark and taken to hospital, where she is under the care of a psychiatrist who believes her to have a psychosomatic illness. Her parents have been prevented from seeing her since she was taken away.

The full horror of this story may be difficult to understand for those who don’t know much about ME, so I’ll try to put you in the picture. ME, or Myalgic Encephalitis, was first described by Dr Melvin Ramsay following an epidemic at the Royal Free Hospital in London in 1955. It’s a long term condition that is triggered by a virus infection, usually a respiratory or gastrointestinal illness. A major feature of the disease is profound central nervous system exhaustion following any mental or physical exertion. This may be delayed by up to 3 days and recovery then takes several days or even weeks. Symptoms of this exhaustion may include headache, nausea, sleep disturbance, cognitive difficulties and muscle weakness and pain. The heart and respiratory muscles may be affected. Also, those used in swallowing. The illness is thought to affect at least 0.2% of the population in the UK – a prevalence similar to that of MS. However, difficulties of diagnosis make it hard to be sure.

The severity of the illness varies from person to person and in the same person over time. Although I have never been completely bed bound, I have got close enough to know something of the horror of those who are. In the early months of my illness, I spent most of my time in bed, unable to lift even a small jug of water. I could walk only a few paces. I had constant pain in my limbs, which did not respond to any over-the-counter painkillers. I could only tolerate very dim light and any kind of stimulation (such as reading or conversation) made me feel sick. Even in the silence, my brain raced around in confusion, constantly chasing the last thing that had been said to me. At night, sleep frequently evaded me, so prolonging the torture.

The exact cause of the illness remains unknown. Whilst Dr Ramsay was only able to find subtle changes in the nervous system using the techniques available at the time, he never had any doubts that this was a physical illness. It was classified by the World Health Organisation (in their International Classification of Disease) as such in 1969 and that classification has never been changed. More recently, there have been moves to change the name of the illness to Chronic Fatigue Syndrome (CFS). However, there is no direct reference to CFS in the ICD. It appears only in the index and the reference goes back to the entry for ME. Meanwhile, in the 1970s, two psychiatrists, who had never met Dr Ramsay’s patients, reinterpreted his data in terms of mental illness, triggering a debate that has been raging ever since. Which brings us back to Karina.

Basically, her story goes like this. She was diagnosed by several doctors, including two ME specialists, as having ME. She was severely ill and being cared for at home. Unable to move from her bed, she was quickly exhausted by any kind of stimulation – light, touch, sound, smell or the need to communicate. Her parents understood this and arranged her immediate environment accordingly. In May 2012, she gave them power of attorney, so that they could act in her best interests if she was unable to do so.

Her doctor became concerned that her condition might be deteriorating, so her case came to the attention of higher authorities. She was then offered treatment provided by the Research Clinic for Functional Disorders and Psychosomatics in Denmark, which offers psychologically based therapies such as Graded Exercise and Cognitive Behavioural Therapy. There is NO research evidence that these therapies have been used successfully with severely ill ME patients and plenty of anecdotal evidence that they have made such people worse. Hence Karina refused treatment and her parents did what they could to support her in this decision. Police, doctors and social workers then forced their way into the house to remove Karina and take her to hospital. And because her parents (and sister) did not agree to the proposed therapies, they have not been permitted to see her since.

I find this story heart breaking. Even if Karina were suffering from some kind of mental health problem (and there is no evidence that she was), how exactly is long term separation from the people that she loves supposed to help her with this? How is one mental health issue supposed to be helped by deliberately creating another? It makes no sense.

Sadly, this has not been the only such case. In July 2003, Sophia Mirza, was similarly taken from her flat in Brighton under the UK Mental Health Act. She spent two weeks in hospital and was released only following an appeal tribunal. Her condition then worsened and she died 2 years later at the age of 32. The initial post mortem revealed no obvious cause of death. However, material taken from her spinal cord later revealed damage to her nervous system. Following an inquest, her cause of death was recorded as Chronic Fatigue Syndrome – the first time ME/CFS was recorded as a cause of death in the UK.

If we contrast the experiences of Karina and Sophia with the care and attention that Stephen Sutton has received, it soon becomes clear that the way we understand the people around us has a profound effect on the way that we treat them. We know about cancer. We know what it does. Most of us have experience of someone who has had it, with the result that it attracts vast amounts of support for both care and research. Meanwhile, people with severe ME, whose daily experience of illness has been compared by some doctors to that of an AIDS patient in their last week of life, lie forgotten behind closed doors, often unable to communicate the distress that they feel. We don’t know. We don’t understand. So our efforts at care become both limited and distorted by wrong assumptions.

This needs to change. Following her death, Sophia was clearly shown to have had a physical illness. Yet still there are psychiatrists who deny this reality and who exert far too much power when it comes to both the management of ME/CFS and research into it. Hailed as experts, they continue to attract what limited money exists for research, rather than it being directed towards a greater biological understanding of this complex illness. Sadly, their therapies have sometimes been shown to benefit a small minority of more able patients (who may or may not have had ME in the first place), strengthening the illusion that their theories have scientific weight and their actions moral worth. Hence they continue to mislead others, blind to the harm they are doing.

“Of all tyrannies, a tyranny exercised for the good of its victims may be the most oppressive. It may be better to live under robber barons than under omnipotent moral busybodies. The robber baron’s cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end, for they do so with the approval of their consciences.”

                                                                                                                                                 (C.S. Lewis)

As I have said, this needs to change. Lack of cure is no excuse for lack of care. People like Karina need the compassion of those who are willing to take the trouble to understand, even if they cannot fix her body or keep her from death. And, for this to happen, the idea that ME is a psychosomatic illness needs to be finally put to rest.

I’ll be honest and say that I don’t know how to achieve such change. Karina’s parents have been banging their heads against a wall for longer than I would have thought possible. It’s like something out of the film Changeling. So I think change can only come through more public awareness and more biomedical research. Indeed, in the light of our recent elections, it seems to me that this is the kind of thing that the European Community should really be about. Karina and Sophia were divided only by nationality. We need shared understanding. We need governments and medical experts who will work together. We need a shared commitment to change.

Meanwhile, here in the UK, the current NICE guidelines for the management of ME/CFS are far from perfect, but one thing they do point to is the desperate need for more research. Campaigning has never been my strong point. I don’t have Stephen’s charisma. But I do know that there are people with ME who need exactly the same kind of compassion and support as was shown to him. So please share our story. Please remember those who spend their lives in darkness. And please offer help where you can.

More on Karina’s story:

A charity that funds biomedical research into ME in the UK:

4 thoughts on “Prisoners in the Dark

  1. sweetpea2love

    Reblogged this on Is it really that easy? and commented:
    My dear friends of WordPress ~ I was working on my next post for my silly gardening matchmaking post, when I needed some information on a fellow blogger (Ros) who offered a name I am using for tomorrows post. Her blog is so lovely to read and when I ran into this very IMPORTANT POST OF HERS, I just had to pass this to all of you.. Please, please take a moment to read what this lovely lady has to say, you’ll be informed and I’m glad you’ll be happy you did.. Thanking you all so very much.. Hugs from Laura ~


  2. sweetpea2love

    Ros, I was gathering some insight on your blog, for a post of mine for tomorrows Butternut squash matchmaking saga, using Orsino (the name you offered to me a few days ago) and I ran across this heartfelt post of yours. I’ve re blogged it in hopes to help you spread the message far and wide, a ripple can cause a change.. hugs to you my dear…

    Take care and watch for tomorrows post from me, I’ll be giving your blog a shout out .. Hugs from Laura



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