Tag Archives: Ableism

The Age of Ignorance.

This was a difficult post to write as I was unsure whether or not to ignore such ignorant writing concerning ME (myalgic encephalomyelitis), depriving it of the oxygen of publicity, or to confront the idiocy. Such is the level of scientific illiteracy displayed in the book, ‘Exhaustion, A History’ by Anna Katharina Schaffner, I felt I had no choice but to adopt the latter option. Schaffner is another supporter of the BPS (biopsychosocial) model and, given the number of times they are mentioned, a keen admirer of both Sir Simon Wessely and professor Edward Shorter. Concerning the title, I’m not sure about the age of exhaustion but given such books are able to be published and that a large proportion of US citizens believe Donald Trump is a viable presidential candidate, I believe the age of ignorance would be a more accurate description. Reading through her monograph it is notable how often tenuous supposition is presented as fact. Her thesis is ‘interesting’, it’s certainly the first time I’ve been accused of suffering from ‘cultural pessimism’, although as an example of the inane waffle ME sufferers have to endure from the ignorati it’s hard to better.

Fundamentally, I take issue with the argument that provides the basis for her book, that modern society is overwhelmed by an, ‘epidemic of exhaustion’. I doubt this supposed epidemic is the main topic of conversation amongst members of the public or the political classes. Her comprehension of history is limited – she believes the recent banking crises are ‘unprecedented in their severity and scale.’ The South Sea Bubble, the economic problems in Weimar Germany, the economic Depression of the 1930s, suggest otherwise. Of course she has to claim the modern world is unique in the crises facing humanity in order to justify her argument. Her poor scientific understanding, particularly apparent in her chapter on ME, is revealed in statements including ‘the ozone layer is shrinking at an alarming rate’ (actually it’s recovering1). Her inability to differentiate between carbon monoxide and carbon dioxide is revealing ‘carbon monoxide emissions are still high’, no doubt they are but she means carbon dioxide (CO2‘s a direct greenhouse gas, CO is not2). Call me pedantic but an inability to understand basic science casts doubt on her ability to engage in discussion of a disease as complex as ME.

Her introduction outlines various issues confronting inhabitants of the modern world, ‘these serious social, political and environmental concerns, all of which centre around the idea of exhaustion.’ Do they? It’s a hypothesis but not one supported by much evidence; it’s certainly the first time I’ve read that Global Warming is a consequence of exhaustion. Nor is the world today unique in the various problems humanity is experiencing. Between a third and a half of the population of Europe was wiped out by bubonic plague in the mid 14th century, the 20th century saw two global conflicts unprecedented in scale resulting in the deaths of millions, and post World War II humanity had to endure the ever present threat of nuclear conflict. Reading history may be an arduous endeavour but it might help Dr Schaffner put humanity’s current difficulties in context.

Schaffner enjoys quoting Edward Shorter, an unpleasant historian who counts a day without abusing ME sufferers as wasted and whose knowledge of the body’s physiological processes is limited. His psychosomatic model of disease is apparently ‘thought provoking’; personally, I’d say unscientific and abusive. Dr Schaffner trots out the ‘fashionable diseases’ line, so beloved of Wessely and co., of which ME apparently is one (whatever else I can’t accuse her of originality ‘illness belief’ also rears its ugly head), carefully working her way through all the BPS model proponents’ favourite tropes. ME is not a fashionable illness, its diagnosis leaves a sufferer open to a plethora of abuse from various sectors of society, including journalists and medical personnel. I couldn’t think of a disease less fashionable.

She fails to distinguish between CFS (chronic fatigue syndrome), ME and post-viral fatigue. This conflation is neither helpful nor accurate but something those with ME have come to expect. A ‘perceived sense of effort’ is stated as one of our symptoms, there you go folks it’s just what you perceive. Schaffner also highlights the controversy surrounding ME. To be clear, any controversy surrounding ME is due to the likes of Wessely, Shorter and herself, a group who for various reasons have decided to hijack a neurological condition (classified by the World Health Organisation since 1969) for their own ends. Any biomedical evidence is to be ignored so that their psychogenic hypotheses can continue to be promoted, never mind that this leaves a seriously ill group of sufferers neglected and untreated, their lives destroyed by a disease the medical profession refuses to take seriously.

Dr Schaffner no doubt believes she is being balanced in her monograph but the constant quoting of Shorter and Wessely, whose psychogenic model she appears to have absorbed uncritically while failing to acknowledge or mention a single biomedical researcher, suggests otherwise. Indeed, while academics are frequently quoted to support the psychosomatic disease model, support for the biomedical model is placed on the shoulders of sufferers, including Nasim Jafry3, whose book is quoted at length in a condescending and dismissive fashion, implying a traumatic event played a role in Jafry’s illness (ME sufferers comprise a diverse community, some experienced traumatic events, some did not, to suggest it plays any role in the illness is mere conjecture). Needless to say, the numerous researchers investigating the physiological basis of ME are not deemed worthy of mention.

It is not ironic (as she states) that Simon Wessely has become a hated figure, he built his career on promoting his view that ME is a non-disease, contradicts himself constantly and makes ludicrous statements suggesting he feels safer in Afghanistan than in the UK, so threatened does he feel by ME patients. Millions of sufferers worldwide lack any effective treatment due to Wessely and his acolytes spending decades promoting ineffective therapies like CBT (cognitive behavioural therapy) and GET (graded exercise therapy), while ignoring the biological basis of ME. This is not a minor issue; sufferers have died and continue to do so. Many patients do not show significant improvement following CBT or GET, and it is dishonest of Schaffner to say so, ‘the evidence so far supports this model’, it does not as the thoroughly debunked PACE trial proved conclusively.

The Shorter view, that we’re all inadequates jumping on the ME bandwagon to help deal with our pathetic existence, which she quotes at great length, ignores the fact that many, including one member of UttingWolffSpouts, struggled for years, even decades with symptoms they did not understand and for which they did not have a diagnosis, never having heard of ME or CFS. These patients saw psychiatrists and underwent CBT and GET because they were prepared to try anything to get well. Unfortunately, in the vast majority of cases, these treatments do not work. It is odd and illogical to accuse ME sufferers of not wanting to get well by ‘refusing’ psychiatric treatments that have been debunked but deride them for their efforts to get better in whichever way they can. Candida is not a fad but a fungal infection that has scientifically verifiable effects on people’s health. As ME sufferers demonstrate dysfunctional immune responses, attempting to ameliorate symptoms caused by this dysfunction rather than investing time and energy in ineffective talking therapies makes perfect sense. Dr Schaffner pretends to be objective but her bias towards an obsolete psychiatric paradigm that has its roots in ‘theories’ about shrivelling wombs could not be more apparent.

Shorter is a historian, and makes a frequent show of demonstrating his scientific illiteracy. I find it fascinating that the likes of Shorter and Schaffner (who studied General and Comparative Literature) so readily expose their ignorance of basic scientific contexts. I studied for a BSc in the Natural Sciences and an MSc in Medicinal Chemistry, because science, especially molecular biology, fascinates me. I have no inclination to write a monologue in the field of Comparative Literature and were I to do so, it would be very, very bad. ME patients do not disrespect medical expertise, I thoroughly respect the consultant gastroenterologist who diagnosed me and the various other medical experts who try to understand and treat my disease, I do not however respect a group of psychiatrists who suggest I’m an inadequate malingerer. The perpetual need for certain literature graduates to dabble in science where the only thing that shines is their scientific illiteracy is worthy of investigation in itself.

It is when Schaffner writes about a ‘bacterial-infection model’ (possibly she means germ theory but she’s quoting from a book I have not read so I must plead ignorance) that she exposes her breathtaking level of ignorance re infectious disease. Schaffner mentions malaria, tuberculosis, ulcers and gastritis to support her claim that ‘psychological factors play a major role in whether the body is able to fight off these bacteria’: nothing in that sentence is true

i) Malaria is not a bacteria, it is caused by several species of the protozoan parasite Plasmodia.

ii) Numerous factors increase a person’s risk of developing active TB, including a suppressed immune response, often due to HIV infection, diabetes, malnutrition and smoking, psychological factors do not play a major role.

iii) Concerning peptic and duodenal ulcers, the majority of which are caused by Helicobacter pylori infection, stress plays a role in susceptibility to ulcer formation by those infected with the bacterium via stress-induced effects on the stomach, an elucidated physiological process (stress suppresses stomach activity, HCl secretion and blood flow to the stomach wall are reduced – the mucous membrane thins enabling its perforation by H. pylori and ulcer formation occurs)4.

Everybody’s immune system is unique and, if the previously mentioned factors remain constant, will respond to infection in its own way, which is why some of those exposed to TB develop the active disease while most do not. Her argument is reminiscent of the suggestion that a positive mental attitude increases a person’s chances of surviving cancer, a claim that has been disproved but is still promoted by the likes of Schaffner.

Given her contempt for diseases caused by pathogenic bacteria, I do wonder if Dr Schaffner uses antibiotics when suffering from a severe bacterial infection, presumably not, instead ensuring she has the correct psychological attitude to ward off such irritating germs. If only she’d been available in the 14th century, so many lives could have been saved. Bubonic plague, gonorrhoea, syphilis, diphtheria, pertussis, anthrax, so many diseases, so much suffering and death, all of which could have been avoided if our ancestors had the sense and wisdom to acknowledge those crucial psychological factors which determined whether or not they became ill. A clear sign of Schaffner’s confusion and muddled thinking is her aforementioned use of malaria and TB, two diseases that predominantly affect the poorest inhabitants of our planet, to support her thesis. Given the latter is based on ME being a construct of Western society and our general inability to deal with the stresses of the modern world, it’s surprising she utilises these ailments, barely present in most wealthy nations, to support her argument.

Schaffner regurgitates another favourite of supporters of the psychogenic disease model, questioning why ME sufferers become so upset with a psychiatric diagnosis. Many patients are upset about a psychiatric diagnosis for ME because ME is not a psychiatric condition. Cancer or Parkinson’s disease patients, even someone suffering from influenza, would not be happy with a psychiatric diagnosis either; Schaffner is being wilfully disingenuous and abusive here. Schaffner’s claim that CFS ‘preoccupied the cultural imagination’ in the latter part of the 20th century is another fallacy, HIV/AIDS possibly, CFS, no. I’m not convinced media attention has shifted to other exhaustion syndromes either (I must make clear I do not believe ME is an exhaustion syndrome) but her book is so full of unsupported, unjustifiable statements one could go on ad infinitum.

There is no other chronic and debilitating condition for which sufferers are continually told their illness and symptoms are imagined. I’m confident that if MS patients were told their disease did not exist (of course they once were) and only required a course of CBT for a cure, they would also be angry towards the medical professional that propounded such beliefs. Schaffner is not original, she follows a long, undistinguished line of cod philosophers who think they can explain away chronic illness in a non-scientific fashion, and why not? Real science is hard; molecular biology is hard, signalling pathways are complex as is the immune system. Why waste time and energy studying this when you can claim it is all imagined, after all, you have a good chance of gaining a knighthood without any of the hard work.

1) https://www.theguardian.com/environment/2016/jun/30/ozone-layer-hole-appears-to-be-healing-scientists-say

2) https://www.ipcc.ch/ipccreports/tar/wg1/139.htm

3) Nasim Jafry (2008). ‘The State of ME’, The Friday Project, London

4) Ash, P et al. (2006). ‘Life’s Challenges’, The Open University.

©2016, Geoffrey Jones, All Rights Reserved.