The ME Association recently wrote to the Science Media Centre in complaint of the remarkable level of bias shown against the recent biological research published in Science Advances by Hornig, Lipkin et al, showing cytokine changes in patients with ME/CFS.
You can read that letter and the reply here.
I will be focusing on the reply, which was certainly true to form. So cynical was the core of this reply that it was entirely irrelevant to the subject matter at hand. Perhaps this reflects a growing anxiousness about the ever increasing weight of biological evidence in ME/CFS.
After some opening blurb, rather than attempting to justifying the actions of the Science Media Centre, the author, Dr Sykes, launches with this:
“The first thing I want to say is that every scientist I speak to about CFS/ME stresses that this is a real and debilitating disease. It concerns me greatly that some sections of the media like to portray CFS/ME as though it’s not real, and this is something we fight very hard to counter. It is of equal concern that some in the community seem desperate to distance the condition from psychological diagnoses or treatments, as though mental health is somehow inferior to, or less real than, physical health. I do not know any credible scientist who would make that distinction.”
The reason this did not surprise me is because I have seen it used with such frequency; this specific example, in the world of ME/CFS, being one that has appeared so often that you can see it coming a mile away.
Or at least, you should.
IT GOES LIKE THIS:
First, a point is rightly made to the effect that ME/CFS is not psychological in aetiology.
Now, due to the scarcity of evidence to the contrary, it’s rather hard to defend against the stated truth – so what method do you use if you want to maintain your denial without having to justify your actions? You side-step it, discredit and insinuate at the same time. Perhaps even portray yourself as the victim – though any “victim” will do, including a fictitious one such as the non-consenting ventriloquized patient. And why not take the opportunity to throw in a bit of misinformation and propaganda as well?
Essentially, the reply contains these parts:
* imply that the complaint was made that psychological illness is not “real”.
* imply that the complaint was made that psychological illness is inferior to physical illness.
* focus all the attention on this and why it is wrong.
Of course, it certainly doesn’t matter that the these implications were not actually made in the first place – in fact, it is rather the point. The worst case scenario is that they are subsequently pulled up on it and are forced, perhaps, into accepting they “misinterpreted” the original complaint, and this is not all that likely to occur. But if it did, it’s no great loss, really; especially as that dialogue continues to keep the conversation off the original anxiety-inducing topic. What was the original complaint anyway – can anyone remember at this point?
Let me put Dr Sykes reply to one side for a moment. Back in time a bit, a journalist fed up with issues being avoided by politicians, asked Harold Wilson a question:
“Prime Minister, why do you always answer a question with a question?”
Quick as a flash Wilson – who had anticipated what was coming – demanded to know, “Who told you that?”
As with the example from Dr Sykes, this is not mere avoidance behaviour, it was clever not just because it avoids an answer but because it also implied that something vaguely wrong has been alleged by an anonymous person against the high status figure. Impressive on first hearing, it should nevertheless dawn on people that this is just a way of changing the subject.
In the same way, the swift movement away from the biological research findings onto the media insinuating that psychological illness may not be real, avoids the subject of physical aetiology and changes the subject to the acceptance of psychological illness in general. Anyone who now dares to question the psychological basis of ME/CFS is put in the position of being critical of the acceptance of mental health issues as real. Anyone who says my illness is physically real is placed on the hook of saying psychological illness is not real. A very dirty little tactic then.
In light of Dr Sykes understanding that “[ME/CFS is] a real and debilitating disease” it is disappointing that he didn’t give the ME Association’s complaint the seriousness it deserves by providing direct answers to specific questions. Unfortunately, Dr Sykes is not the first (nor will he be the last) to use such evasive tactics to derail the argument, and I think this highlights the need for ME charities and spokespeople to stick to the subject and be aware that attempts will be made to lead them off topic and into mental health.
There has been a lot more of this sort of thing going on lately, with many recent examples in the wake of the Institute of Medicine’s report and Lipkin’s new biological findings. But frankly, these little manoeuvres really aren’t all that clever and are entirely predictable – and therein lies the opportunity to avoid them. And avoiding them is important, as otherwise we make it all too easy for people like Dr Sykes to side-step an indefensible position in favour of territory that they feel more comfortable defending.
Some ME charities already understand this well. Some others, less so. I think there is room for improvement across the board; it’s time to up our game, and that is what I am calling on all ME charities and spokespeople to do.
The ME Association are right to question the lack of balance in the SMC’s recent offering to media, asking the question all journalists ought to be asking when the SMC offer them an “expert” opinion: Who told you that?
My next two articles in this series will broadly cover related issues.