Who Told You That?

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.

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3 thoughts on “Who Told You That?

  1. Indeed. I thought the M.E. response to the SMC response (sigh) did a good job of redirecting the topic back to the original one – the question was: why they did not choose experts in immunology to comment on the research finding?

    The trap is easy to fall into. Unfortunately, the IOM fell into the trap more than once in their report, stating at various times that ME/CFS (SEID) is “real,” “legitimate,” and “serious.” The psychiatry cabal at the SMC can comfortably respond in the affirmative and then go on to portray the disease as psychiatric in nature.

    I was also concerned by the portrayal of ME/CFS as a “hit-and-run” incident where some trigger, probably a pathogen, sets the immune system into overdrive, but after three years, the immune system collapses. I see that being portrayed by the “biopsychosocial” club as evidence that after those three years, the problem is perception of a disease that isn’t there … So the patient needs CBT and GET.

    Because that is the bottom line – all roads lead to CBT and GET in the British psychiatrists’ fantasy portrayal of “CFS/ME.” And an observer can perhaps be forgiven for wishing the IOM had used the evidence from multiple 2-day CPET studies to simply state GET could be dangerous for these patients.

    In their interviews with the press, several members did indeed say this, but not in anything produced officially by the committee. They said that was because their instructions were only to look at the need for a new name and definition – but since they really exceeded those instructions by not just recommending a new name and definition be developed, but throwing one unto the fire that is untested and has no ICD code.

    If they were going to color outside the lines, it would really have been more helpful – and more true to the evidence they cited – to have stated formally that the results of peer-reviewed studies by exercise physiologists suggests that GET is not the world’s best idea for these patients and can actually be dangerous. It is a message that must be repeated constantly to counter the cultural belief that exercise is always good for everybody – and anybody who thinks it makes them worse must be a wimp. Or be suffering from something like “persistent refusal syndrome.”

    Finally, since we are on the topic of the SMC, it was extremely naïve of the IOM to insist their findings were not international in nature. There are no national boundaries to information.

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    • yes, those who want to hinder progress will always present a twisted version of the narrative, whatever it is. In this case playing down the biological findings and trying to change the narrative to ME/CFS being psychological. Their favoured tactic.

      Years from now though, they will still be twisting the narrative, even when we have a test in clinicians offices, know what causes the disease and have true treatments for it. In fact, for fun, later this year I may well write a series of predictive ‘twisted narratives’ that I think we will see over the next few years as biological findings continue to change the landscape. They will adapt. They will not admit they were wrong even when it is proven fact. As you say, the bottom line is that all roads lead to CBT and GET in the British psychiatrists’ fantasy portrayal of “CFS/ME.” Well put.

      Although it’s a bit off topic, I actually think the IOM were very smart not to make special mention of CBT/GET/PACE as to do so would simply legitimize them and would have resulted in far more coverage of PACE and those sorts of things. It would have given them a platform.

      Effectively, my view (and I will be making this in one of my next posts, but probably more succinctly) is that we should tackle |CBT/GET/PACE/and claims that MECFS is psychological when this unscientific propaganda comes out. But when we are talking about anything else regarding the disease; when we are setting the narrative – we should absolutely not talk about them, not give them a platform and a means to shift the narrative to territory they are comfortable in.

      We can see clearly from this example with the SMC, that they do not like it one bit when the narrative is focused on scientific findings that prove it’s biological nature and are anxious to avoid it and shift the focus to the psychological ideology. So guess what? I am going to keep the focus firmly where they’ve shown me they are uncomfortable with it. The reason they are uncomfortable is obvious – it is because they know it is true, and spells the end of their status as ME/CFS experts, and all the money they make out of that. In essence, they see it as a threat to their careers. Why else would you not welcome it? Indeed, if a psychiatrist truly believed that ME/CFS was psychological they would be falling over themselves to attempt replication of these findings by Lipkin, pushing for funding, as they would be sure that the replication would fail. What a feather in their cap that would be. Instead, knowing Lipkin has struggled to get funding so far, their only mention of replication being needed, is used as a tool to play-down the findings and present them as not to be trusted. Will say more on it later.

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  2. Pingback: Physical or Mental: Why it Matters | The Self-Taught Author

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