My father used to say that humanity is divided into those that see the world through a moral framework and recognise their place within it, and Tories. When a concerned mother came to the paediatric clinic bearing literature from the Irlen Institute claiming that her daughter was a sufferer of the eponymous patented syndrome, I remembered his words. I was studying for the fellowship exam at the time and had not come across this new mystery syndrome that the leaflet told me afflicted a very sizeable proportion of the population.
I did some internet based research into this seemingly widespread phenomenon which until then I had been happily oblivious to and it was more than obvious that the company was promoting a pseudoscientific ‘cure’ for a problem that did not exist, in the form of tinted lenses, and charging handsome fees at the same time.
Much like a course of hepatitis B vaccination, each new encounter with an ‘Irlen’ sufferer induced in me a growing sense of righteous indignation at the deception employed by this organisation and I wrote a personal view article for the BMJ which was published online at the end of July and in print some two weeks later (BMJ 2014 23;349(7972):21) in which I attempted to warn the unwary about this racket.
Friends and colleagues chuckled nervously when I told them the BMJ had accepted the article and my boss at Singleton advised me to get a flak jacket in readiness, while another consultant was more than a little perturbed by the fact that my place of work would be displayed in the article next to my name. I laughed in what I thought was a morally upstanding brave way. What was the worst that could happen? Was it not a service of good for the benefit of mankind? Was I not putting right what once went wrong, like Dr Becket on Quantum Leap ? I would clearly be regarded as a hero by the profession and by the specialty. I had nothing to lose.
I knew when the article had been published online before the BMJ told me. I was idly checking my phone at 9:30pm when I noticed I had 17 new emails. I had never in my life before had 17 new emails all at once. I was at first excited as I started to open the messages and realised that my crusading article was being read. My excitement diminished somewhat when I realised that all 17 emails were written by Americans hostile to my article and to me personally. Most of my newfound friends seemed to be suffering from Irlen Syndrome, the rest were employees of the company itself. I confess to not reading every word of every email as I was becoming increasingly disheartened by being called a troublemaker, a fool, a member of the ‘establishment’ somewhat surprisingly, and an ill-educated poor excuse for a medical student.
I replied to two of the more sensible emails trying to explain my point of view, noticing that another three emails had arrived in the time it had taken me to craft my replies. I did not open these new ones and tried to sleep as best I could. The morning would bring supportive messages for sure. Why was I getting so many messages in such a short space of time? Surely the BMJ website could not have so many interested people browsing its contents all at the same time?
The answer became clear the following day after a further 38 messages had been deleted from my inbox, this time without me reading a single one. The Irlen organisation had kindly reacted to the article by tweeting my personal email address to all of their followers, inviting them to tell me ‘what they think of the article’. To be fair to them they were loyal in a way that patients rarely are to a syndrome and did so in large numbers, mostly by telling me how disgusted they were.
Rapid responses to the article started to be published on the BMJ website the following day and as the numbers were far less than the emails I had received I judged the journal was filtering the more crazy vitriolic ones. I was somewhat pleased to see one or two supportive messages appearing but again they were mostly negative. A particular favourite accused me of insulting a US marine and his family while at the same time questioning my right to have an opinion on this matter as I worked at a ‘provincial hospital’. Many people assumed I was a medical student for some reason and one contributor invited me to attend her clinic in Brazil, all expenses paid, where I could examine files that would convince me that the syndrome was valid. I was curious enough to google this particular individual but discovered that not only was she married but her husband was also a big cheese in the Irlen world and the prospect started to look a whole lot less attractive.
My inbox was groaning under the weight of new emails and I cursed my stupidity in not starting up a new email address just for the purposes of the article. Grudgingly I admitted that my work colleagues were right in recognising the true danger of putting your head above the parapet and that my initial bravery was nothing more than naivety.
Then I had a more worrying email by far. It was from a man who had read my article on the amusingly named chronic fatigue syndrome website ‘constantfuckingshit’ and who claimed to live in Swansea. It was my lucky day apparently as he was going to find me at work so that he could tell me all about Irlen. He said I would do an MRI scan on him so that I would know he was truthful in his assertion that his coloured lenses helped. I swallowed hard and decided that I should reply to this man lest I have a bad day at work and after a few emails he seemed to agree that he was probably best off not coming down to the eye department. He hasn’t come as yet.
I learnt a valuable lesson. Truth and righteousness are all well and good and are probably excellent for reflective learning and 360 degree assessments of probity. But in the real world you end up being called a medical student from a provincial hospital causing endless people to be ‘disgusted’ at your ‘vile’ comments while a scary man threatens to call in to see you at work and make you do an MRI scan on him. While my father may have been right, at the end of the day, Tories live longer.
The views expressed are those of the author and do not represent those of the editorial team or the publisher.
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