Proud to be Ignorant?

The last thing I want to do in this blog post is provide more publicity for Suzanne O’Sullivan’s ignorant meanderings concerning ME [1] but I’d like to make a broader point regarding the inability of parts of the medical profession and their cheerleaders in the media (I’m talking about you David Aaronovitch) to accept that ME is a physical disease demonstrating numerous organic abnormalities.

What I find interesting is the apparent need in modern society to disparage a large group of chronically ill people. Why do the likes of Dr O’Sullivan or David Aaronovitch, and others too numerous to mention, feel the need to continually use their positions of power and influence to victimize and abuse a group of severely ill patients, some of whom have died from the disease? Have they any concept of the upset and despair they can cause? Having your life stolen by an awful disease, feeling far more ill than you’d have believed possible in days long past and then reading or listening to such damaging and intellectually vapid propaganda, may induce profound despair, enough to make some want to end it all, and why? So that someone can promote their book by causing controversy, it is not surprising we can get upset.

If one looks at things dispassionately, not easy if you’re suffering from the disease they so readily disparage, it is a strange thing; to spend your life and/or career insisting that an illness is all in the sufferer’s mind, even as the scientific evidence showing that it is not becomes overwhelming. No doubt considerable benefits can accrue from adopting such a position, Simon Wessely is hardly starving on the street, having done wonderfully well in building a career upon insisting every condition/disease under the sun is illusory, merely the construct of the sufferer’s disturbed mind. It is tragic he wasn’t practising in centuries past; the number of plague or smallpox victims who could have been reassured as they gasped their last breath, that it was all in their minds and a consequence of false illness beliefs, would have been vast.

Lest we forget (unlikely) ME has been defined as a neurological disease by the World Health Organisation since 1969, thousands of peer-reviewed papers have been published since then confirming its organic pathology. Yet still we endure ignorant banalities trotted out by the likes of O’Sullivan; she cannot even claim originality, I’ve been hearing the same nonsense for nearly thirty years.

We all want to be healthy, to be able to live fulfilling lives, work at a job we enjoy, have a family, go out when we want to go out, does the average healthy person realise what a great privilege that is? Probably not, one of the few positives of being chronically ill is the increased appreciation of the small things in life. Can there be anything more depressing than to be stuck indoors feeling like death while the world passes us by, all too quickly (I’ve now reached the age where decades seem to fly past, hopefully the cure for mortality will be discovered soon).

I am currently involved in researching Parkinson’s disease (PD). It is a horrible, debilitating condition, affecting a sufferer’s motor function significantly and featuring several other unpleasant symptoms mainly due to reduced production of the neurotransmitter dopamine through the death of dopaminergic neurons. It is not known what triggers the neuronal cell death, there is no biomarker and the primary diagnostic confirmation is how well a patient responds to treatment with the dopamine precursor, levodopa. In other words, there is no simple blood test to confirm the condition, there is no cure, (though unlike ME, there are several effective drug therapies for treating symptoms*, at least in the first few years following diagnosis), and its aetiology is unknown. I mention this as PD patients are generally treated with dignity and respect by the medical profession and the media, no one doubting that they are ill, despite PD sharing several of the criteria that make ME so easy to dismiss. It can also present with several symptoms, yet I frequently hear from medics that any illness involving more than three or four symptoms is probably psychosomatic.

‘When we are unwell, we tell ourselves that if we adopt a positive mental attitude, we will have a better chance of recovery. I am sure that is correct’**[1].

Well no, however sure you are Doctor that is in fact incorrect, basing one’s views on belief or ‘how I feel’ is problematic. There has been considerable research investigating whether or not having a positive mental attitude makes any difference when it comes to recovering from serious illness and results suggest it does not[2,3].  It is patently idiotic anyway, as it would imply only miserable people would become ill, or certainly stay ill, and that clearly isn’t the case (Some of the healthiest people I know would make the unreformed Ebeneezer Scrooge appear the epitome of cheeriness).

If you enjoy good health, you’re very lucky. Now enjoy that remarkable good luck and do something useful with your life, abusing the chronically ill is not time and energy well spent, Simon Wessely may have wangled a Knighthood but neither he, nor his acolytes, will be receiving a Nobel Prize for Medicine and history is unlikely to look back upon such people kindly (one can but hope). The continued promotion of such incoherent and unintelligent nonsense no doubt boils down to the increasingly popular view in modern society that being ill is the sufferer’s fault. This type of book plays into the general abuse of the sick and disabled which is becoming ever more prevalent in modern Britain, you don’t have to be a conspiracy theorist to detect a connection and it is long past time that such abuse ceased.

*Hopefully things are about to change on this front

**Thank you to Stephen Wright for drawing my attention to this passage in the book

1) It’s All in Your Head: True Stories of Imaginary Illness. Suzanne O’Sullivan. Chatto and Windus (2015)

2) http://www.cancer.org/treatment/treatmentsandsideeffects/emotionalsideeffects/attitudes-and-cancer

3) http://www.webmd.com/cancer/news/20040209/attitude-doesnt-affect-cancer-survival