A Parent’s Perspective; ‘Lost Voices’ as the years past.

The title of this post is that of a talk my wife Natalie Boulton gave in Belfast on June 6th this year. The full text of her talk – which I very much hope you will read – appears as a post under the title Presentation for Belfast. 6th June 2016  on the Voices from the Shadows website. The talk reflects our mutual concern – I helped her with aspects of it – but it’s very much her voice that speaks.

As a family we are haunted by this disease. Natalie’s  mother had ME until her death, which followed a severe relapse 11 years ago. Both one of my cousins and my nephew (my half-brother’s son) have suffered from it. Natalie and I are carers for our daughter. who has been severely ill with ME for 26 years, and for our youngest son (who was diagnosed with ME last year).

hidden_wars_for AB_2009u

One of the first wall map pieces I made, back in 2007, was called Hidden War, with and for Anna Biggs, about which I wrote at some length in the collaborative book These Debatable Lands: Debatable Lands Vol. 2 where it’s also reproduced.

The part of that text relevant here reads as follows:

“On the 16th June 2006 Eileen Marshall and Margaret Williams published a detailed report  – in which they reflect on the Brighton Coroner’s inquest into the death of 32 year-old Sophia Mirza. Sophia, although seriously ill with medically diagnosed Myalgic Encephalomyelitis (ME), had been wrongly sectioned under the Mental Health Act before she died”.

“The circumstances leading to her death were set down by her mother Criona Wilson as follows:  ‘In July, the professionals returned – as promised by the psychiatrist. The police smashed down the door and Sophia was taken to a locked room within a locked ward of the local mental hospital. Despite the fact that she was bed-bound, she reported that she did not receive even basic nursing care, her temperature, pulse and blood pressure (which had been 80/60), were never taken. Sophia told me that her bed was never made, that she was never washed, her pressure areas were never attended to and her room and bathroom were not cleaned’. [I cannot watch her reporting this in the film Voices from the Shadows without weeping. Not only because of the appalling degradation to which this chronically young woman was subjected, but because it reminds me forcibly that, when push comes to shove, our society is quite capable of behaving like Stalin’s USSR].  “As the Coroner’s report makes absolutely clear, Sophia Mirza died because she was suffering from ME or, to be more specific, her death from ME/CFS was in part caused by the illness and in part because she was denied medical intervention and then forcibly removed from her home and locked up in a psychiatric ward. Her death was not a tragic accident. Sophie died because of the calculated and pre-meditated actions of official bodies acting in open defiance of World Health Organisation’s formal classification of ME as an organic disease of the central nervous system in 1969 (code G.93.3) and of the 1978 symposium of the Royal Society of Medicine at which ME was accepted as a distinct medical entity. As a parent I know that informed ME patients and their carers are fighting the official policy being developed to address ME – essentially the same policy that was executed in Sophie Mirza’s case – and based on attempts to reclassify a medical condition as a psychiatric problem. [A reclassification that is making universities millions of pounds in research funding and allowing certain academic researchers to build themselves ‘glittering’ careers]. As Marshall and Williams testify, this policy has and is resulting in psychiatricaly-condoned abuse of ME patients, a situation aided and abetted by the “arrogance and ignorance” of the British medical establishment. This has created a situation in which ME patients are ’treated’ by people happy to submit them to extremes of physical and mental anguish that rereperably damage their health. They do so because it is “financially and politically convenient and profitable”, given the psychiatric collusion with “a number of extremely powerful corporations and government departments”.

“It is ultimately against the power of these corporations and government departments that those who care for ME/CFS patients must fight if we wish to make it clear that in the UK we are faced with a systematic, state-condoned campaign of abuse and cruelty towards those who suffer with the medical disease of ME. My difficulty is that I know all this not from the position of an academic specialist but as a father whose partner has devoted all her spare time to discovering why our daughter has continued to suffer from ME for the last 19 years. My difficulty is also that I fear that what happened to Sophie Mirza could one day happen to Anna and that as things stand at present there would be very little I could do to prevent such a situation fro occurring.”

Two things appall me re-reading this text now. One is that not only has the situation not improved, it has actually got worse – and that despite the fact that a number of scientists have been deeply critical of the poor science on which this whole situation rests. The second is the degree to which universities and academic researchers are implicated in the perpetuation of this situation for their own ends.

It’s a situation that would reduce me to despair if it were not for the simple fact that, as a family, despair is a luxury we simply can’t afford.