I Think You'll Find It's a Bit More Complicated Than That (38 page)
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Authors: Ben Goldacre
All Bow Before
the Mighty Power of the Nocebo Effect
Guardian
, 28 November 2009
I’m fine with people wasting their money on sugar pills, but I have higher expectations of government bodies. The Medicines and Healthcare Regulatory Authority has decided to let homeopathy manufacturers make medical claims on their sugar pill bottles, without any evidence of efficacy, and the government funds homeopathy on the NHS. This week the Parliamentary Science and Technology Select Committee
looked into the evidence
behind these decisions.
There was much cheap comedy – as you’d expect from a government inquiry into an industry based on magical beliefs. But the best moment was when Dr Peter Fisher from the Royal London Homeopathic Hospital (funded by the NHS) explained that homeopathic sugar pills have physical side effects, so they must be powerful. Many raised their eyebrows; but interestingly, the homeopath is correct. People can experience side effects when they receive pills that contain no medicine at all.
A paper published in the journal
Pain
next month looks at this very issue. Its authors found every single placebo-controlled trial ever conducted on a migraine drug, and looked at the side effects reported by the people in the control group, who received a dummy ‘placebo’ sugar pill instead of the real drug. Not only were these side effects common, they were also similar to the specific side effects you’d have expected if you’d received real drug in the trial: so patients getting placebo instead of anticonvulsants, for example, reported memory difficulties, sleepiness and loss of appetite, which are typical side effects of anticonvulsants; while patients getting placebo instead of painkillers got digestive problems, which themselves are commonly caused by painkillers.
This is nothing new. A
study in 2006
sat seventy-five people in front of a rotating drum to make them feel nauseous, and gave them a placebo sugar pill. Twenty-five were told it was a drug that would make the nausea worse: their nausea became worse, and they also exhibited more gastric tachyarrhythmia, the abnormal stomach activity that frequently accompanies nausea.
A
paper in 2004
took six hundred patients from three different specialist drug-allergy clinics, split them into two groups at random, and handed them either the drug that was causing their adverse reactions, or a dummy pill with no ingredients: 27 per cent of the patients experienced side effects such as itching, malaise and headache from the placebo dummy pill.
And a classic
paper from 1987
looked at the impact of listing side effects on the consent form which all patients sign before accepting treatment in a randomised trial. This was a large placebo-controlled trial comparing aspirin against placebo, conducted in three different centres. In two of them, the consent form contained a statement outlining various gastrointestinal side effects, and in these centres there was a sixfold increase in the number of people reporting such symptoms, and many more people dropping out of the trial, compared with the one centre that did not list such side effects on the form.
This is the amazing world of the nocebo effect, the evil twin of the placebo effect, where negative expectations can induce unpleasant symptoms in the absence of a physical cause.
Sadly, though, it doesn’t help homeopaths: in 2003 Professor Edzard Ernst conducted a
systematic review
of every single homeopathy trial that reported side effects. This found, in total, fifty episodes of side effects in patients treated with placebo and sixty-three in patients treated with homeopathically diluted remedies, with no statistically significant difference in the rates of side effects between the two groups.
Quacks like to present themselves as holistic, but in reality this research into the placebo effect and the nocebo effect suggests quite the opposite. The world of the homeopath is reductionist, one-dimensional, and built on the power of the pill: it cannot accommodate the fascinating reality of connections between mind and body, which have been revealed in these experiments, and many more. The next time you find yourself trapped, at dinner, next to some bore who’s decided they have secret mystical healing powers – while they earnestly explain how their crass efforts at selling sugar pills represent a meaningful political stand against the crimes of big pharma – just think: some lucky person, somewhere in the world, is sat next to a nocebo researcher.
So Brilliantly
You’ve Presented a Really Transgressive Case Through the Mainstream Media
Guardian
, 5 December 2009
Here is a mystery. Rom Houben, a Belgian man, was diagnosed as being in a coma for twenty-three years, and he has now made a partial recovery. This has been demonstrated with a series of recently developed brain-scanning techniques (whose predictive value is not entirely known, but they are promising), and he is also opening his eyes. But the story in the media this week goes further than that: it is also claimed that he was conscious all along, but simply unable to move, a well-documented phenomenon called ‘locked-in syndrome’. It has been reported as a news story around the world, from the
Sun
, Sky news, the
BBC
,
the
Guardian
(in four separate pieces) and the
Telegraph
, through to CNN,
Der Spiegel
,
Australian TV news
, and hundreds more.
But there is a problem. Mr Houben has described his horrifying experience of being locked in using something called ‘facilitated communication’: someone holds his finger; they can sense where his hand wants to go on a screen; and by moving with him, they help him type. If you watch the TV footage, it all happens very fast, too.
What is known about facilitated communication? Many researchers have compared it to ouija boards, which is an attempt, I think, to be fair. Some facilitators may well believe that they are guided by an external force; but there have been several large reviews of research into this technique, and overall, it’s not good.
The practice was popular in the 1980s and 1990s, and used mostly in severe autism, so that is where much of the work is found. You might feel this is not entirely applicable to someone with locked-in syndrome; equally, you wouldn’t ignore it. A lengthy research review on educational interventions in autism commissioned by the Department for Education and Employment in 1998 found that in FC ‘almost all scientifically controlled studies showed that the facilitator was the
author of the communication
’. This finding was so clear that they concluded further research would be hard to justify.
An academic review in 2001 looked at all the
more recent studies
, updating two earlier reviews with negative conclusions from 1995, and found that overall, again, the claims made for FC are unsubstantiated.
If you prefer authorities to studies, the
National Autistic Society says
that five major US professional bodies now formally oppose the use of FC, including the American Academy of Child and Adolescent Psychiatry, the American Speech-Language-Hearing Association, and the American Association on Mental Retardation. The American Psychological Association issued a
position paper on FC
in 1994 (at the height of its popularity) saying ‘studies have repeatedly demonstrated that facilitated communication is not a scientifically valid technique’, and calling it ‘a controversial and unproved communicative procedure with no scientifically demonstrated support for its efficacy’.
My concern about this is pretty simple. If you watch the video of Mr Houben’s facilitated communication in action – and I
encourage you to do so
– you will see the facilitator looking at the screen and the keyboard, moving Mr Houben’s finger at remarkably high speed to type out a message, while both of Mr Houben’s eyes are closed, with his head slumped sideways across his chair.
Perhaps this was due to bad video editing. It has also been reported that the facilitated communicator was able to correctly identify objects shown only to Mr Houben in private, although that is a less taxing task than the very rapid one-fingered typing shown on TV. But all of these claims can only be assessed in the context of the overwhelmingly negative research on FC.
Journalists and religious commentators are already writing lengthy moral screeds on the implications of this case for our treatment of people in a coma. That seems premature. Mr Houben’s typing may well be genuine, and therefore atypical: nobody can have a meaningful opinion, because newspapers are no place to communicate breakthroughs which are incompatible with large swathes of current knowledge, and based on what seems to be weak and even contradictory evidence.
Now that the amazing case of Mr Houben’s facilitated communication has been made the subject of a huge media sensation around the world, and extensive ethical speculation, I think we can all look forward to seeing it formally assessed and presented in an academic paper by his doctor, Professor Steven Laureys of Belgium’s Coma Science Group. I’ve made a note in my diary for this date next year. Just to check.
Prof Laureys never published such a paper. In 2010, after international criticism, he allowed facilitated communication to be tested more rigorously with Mr Houben. It didn’t work.
This was barely reported
.
Guardian
, 4 July 2009
There’s nothing like science for giving that objective, white-coat-flavoured legitimacy to your prejudices, so it must have been a great day for
Telegraph
readers when they came across the headline ‘
Women who dress provocatively
more likely to be raped, claim scientists’. Ah, scientists. ‘Women who drink alcohol, wear short skirts and are outgoing are more likely to be raped, claim scientists at the University of Leicester.’ Well there you go. Oddly, though, the title of the press release for the same research was ‘
Promiscuous men more likely
to rape’.
Normally we berate journalists for rewriting press releases. Had the
Telegraph
found some news?
I rang Sophia Shaw at the University of Leicester. She was surprised to have been presented as an expert scientist on the pages of the
Daily Telegraph
; because Sophia is an MSc student, and this is her dissertation project. It’s also not finished. ‘We are intending on getting it published, but my findings are very preliminary.’ She was discussing her dissertation at an academic conference, when the British Psychological Society’s PR team picked it up, and put out a press release. We will discuss that later.
But first, the science. Shaw spoke to about a hundred men, presented them with various situations around being with a woman, and asked them when they would call it a night, in order to explore men’s attitudes towards coercing women into sex. ‘I’m very aware that there are limitations to my study. It’s self-report data about sensitive issues, so that’s got its flaws; participants were answering when sober, and so on.’
But more than that, she told me, every single one of the first four statements made by the
Telegraph
is a flat, factually incorrect misrepresentation of her findings.
Women who drink alcohol, wear short skirts and are outgoing are more likely to be raped? ‘We found no evidence that women who are more outgoing are more likely to be raped. This is completely inaccurate. We found no difference whatsoever. The alcohol thing is also completely wrong: if anything, we found that men reported they were willing to go further with women who are completely sober.’
And what about the
Telegraph
’s next claim: its reach for objective distance, and its assertion that it’s not just judgemental newspapers, but also
scientists
who claim that provocatively dressed women are more likely to be raped?
‘We have found at the minute that people will go slightly further with women who are provocatively dressed, but this result is not statistically significant. Basically, you can’t say that’s an effect, it could easily be the play of chance. I told the journalist it isn’t one of our main findings, you can’t say that. It’s not significant, which is why we’re not reporting it in our main analysis.’
So if the
Telegraph
is throwing blame around with rape, who do we blame for this story, and what do we do about it? On the one hand, Sophia Shaw is not very impressed with the newspaper: ‘When I saw the article my heart completely sank, and it made me really angry, given how sensitive this subject is. To be making claims like the
Telegraph
did, in my name, places all the
blame on women
, which is not what we were doing at all. I just felt really angry about how wrong they’d got this study.’ Since I started sniffing around, and Sophia complained, the
Telegraph
has quietly changed the online copy of the article, although there has been no formal correction, and in any case, it remains inaccurate.
But there is a second, less obvious problem. Repeatedly, unpublished work – often of a highly speculative and eye-catching nature – is shepherded into newspapers by the press officers of the British Psychological Society and other organisations. A rash of news coverage and popular speculation ensues, in a situation where nobody can read the academic work. I could only get to the reality of what was measured, and how, by personally tracking down and speaking to an MSc student on the phone about her dissertation. In any situation this would be ridiculous, but in a sensitive area like rape, you’d hope that PR staff could temper their desperate hunger for coverage, and wait for the finished paper.
