Hoping for a post-PACE world

Pity Franz Kafka, who wrote to his love, in 1920 that “I’m mentally ill, the disease of the lungs is nothing but an overflowing of my mental disease.” (Sontag 1978)

He actually had Tuberculosis. How awful it must be to have lived with the burden that you have been told that are severely sick because you think you are. (Sontag 1978)

Pity Napoleon, Ulysses S. Grant, Robert A. Taft and Hubert Humphrey, whose cancer “was diagnosed as the reaction to political defeat and the curtailing of their ambitions. How awful it must be to be seen as a “cancer personality”; as a “loser”.

These days, it is incomprehensible that TB and Cancer were once seen as a mental illness!
But how can it be that the WHO classified, yet poorly understood physical disease, Myalgic Encephalomyelitis, a disease that places a greater physical burden on patients than schizophrenia, cancer, stroke, multiple sclerosis and Type I diabetes, (Johnson 2015) is widely regarded as mental illness by medicine, when there is not one jot of evidence that it is?

Is medicine simply incapable of learning from history? They have not changed the old myth, but continue to perpetuate it religiously.

As Susan Sontag (1978) argues, theories that diseases are caused by mental states and can be cured by will power, have almost always been used when “ much is not understood about the physical terrain of a disease “. The idea of illness as a psychological event is that “ you can cure yourself by a mobilisation of will”; in other words you “can choose not to die of the disease.”

21st Century medicine, incredibly, has swallowed the delusion that you can choose to change your own maladaptive thinking that you are seriously ill and instead “get well” and then, uncritically, applied it to ME.

In the process, medicine and more particularly psychiatry, is responsible for destroying tens of thousands of lives, causing countless deaths and building a mountain of gross social, economic and political oppression, spanning almost 50 years.

ME has wrecked the lives of over 250,000 people in the UK and 1.0M Americans. The suffering, can be so far off the scale that it is hard to comprehend for the ordinary person:

“It is more than torment, more than torture, more than indescribable, more than intolerable, more than unacceptable, more than completely unbearable. It is screamingly hostile and negating. It is barbaric in its cruelty. It is exquisitely diminishing. It is almost completely incomprehensible in its agony it is so vast, so punishing, so pure, so bleak, so empty of life and full of sensations that is beyond endurance.”(Linda Crowhurst)

Yet doctors are told not to “collude” with their patients, that if they take their patients’ symptoms seriously, they would be making the patient worse. In other words “it would be the doctor who was making the patient worse by believing in their symptoms.” (Williams 2017)
It is shocking that the Royal Colleges of GPs and Psychiatry were able to recently declare ME to be a mental disorder, with apparent inpunity and inform Commissioners of health services that this is so, without redress, so far.

It is a scandal that NICE was recently able to declare its unfit for purpose guideline absolutely fine, not in need of any updating, despite the fact that the think/exercise yourself well technology that it is built upon is, unsurprisingly, not remotely curative or helpful, as the disgraced PACE Trial, a “medical scandal “(Journal of Health Psychology 2017) shows. (Crowhurst 2017)

What has psychiatry become? I have cared for my wife, who has a diagnosis of very Severe ME for the last 25 years, our experience of deep, deep suffering has led me to turn many times, for inspiration to the insights of Victor Frankl, a psychiatrist, on the defiant power of the human spirit. His school of psychiatry, Logotherapy has much to offer for those who truly suffer because it respects and honours the patient’s reality and understands what suffering is.

It could have all been so different.

But what a grubby, all powerful, all mighty monster the so-called UK psychiatric lobby has become, promoting the madness that the serious physical illness ME can be cured by doctors not taking patients seriously — and, by God, getting away with it, whilst using millions of pounds that could otherwise have potentially gone into saving lives, in the process.

But the tables, it seems, are at long last turning on a very cleverly spun illusion that so many have bought in to.

As Victor Frankl says the key to survival, in horrendous circumstances is to every day, every hour “make a decision not to submit to those powers which rob you of your very self.” That is true.
But in order to have hope of more than just survival, we need a ‘Post PACE’ world.

Truly, we ask and hope, is that time just beginning?

This week, the world is going to see how the debunking of the PACE Trial is a story of patient power like no other!

References
Crowhurst L http://www.stonebird.co.uk/spirit.html
Crowhurst G (2017) NICE Guideline CG53 : a Human Rights issue for people with ME ? http://www.stonebird.co.uk/NICE/index.htm
Johnson C (2015) Chronic Fatigue Syndrome Found Worse Than Diabetes, Multiple Sclerosis, Cancer, etc.
https://www.healthrising.org/blog/2015/08/05/chronic-fatigue-syndrome-worse-mulitple-sclerosis-cancer/
Journal of Health Psychology (2017) Press Release http://www.meassociation.org.uk/2017/07/the-pace-trial-the-making-of-a-medical-scandal-29-july-2017/
Sontag S (1978)Illness as Metaphor http://www.susansontag.com/SusanSontag/books/illnessAsMetaphor.shtml
Williams M (2017) , The Cost of Collusion ? http://www.margaretwilliams.me/2017/cost-of-collusion.pdf