By Fiona Fox
This blog contains the thoughts of the author rather than representing the work or policy of the Science Media Centre.
Last week we ran press conferences on climate change and CFS/ME. The subjects are complex and contentious, and there is always the potential for jarring or simplistic headlines and strong reactions from the vocal critics of research in these fields. But it was the criticism from within the scientific community that we had not anticipated.
A new study on climate change, published in Nature Geoscience, showed we might have a little more time in which to reduce greenhouse gas emissions and avert potentially dangerous climate change. The other reported on findings from a clinical trial on a controversial treatment for CFS/ME denounced as pseudoscience by many, which revealed that some patients benefitted from the technique. Both briefings fitted the usual mould: top quality scientists explaining their work to smart science journalists and making technical and complex studies accessible to readers.
The coverage for both briefings was broadly fine. Well within the Science Media Centre’s (SMC) boundaries of decent coverage on issues at the extreme end of contentiousness. Some headlines on the climate study were a bit dubious, inevitably lacking the nuance of the copy beneath them; but you can hardly blame sub-editors who have been putting ‘worse than expected’ headlines on climate stories for a decade for relishing what seemed to be a surprising new twist. If you had only read the headlines for the CFS/ME story you may conclude that the treatment tested at Bristol might be worth a try if you are blighted by the illness, when in truth the author said repeatedly that the findings would first have to be replicated in a bigger trial.
So far so normal. Also normal was the seizing of selected headlines by the critics of science from climate sceptics to ME activists. But this time the SMC also came under fire from our friends in science. Some climate scientists were cross with the SMC for handing sceptics a gift and quack buster extraordinaire David Colquhoun tweeted, ‘More reasons to be concerned about @SMC_London?’ Other friends wrote to us expressing concern about the unintended consequences of SMC briefings – with one saying that policy makers were furious at having to deal with the fallout from our climate briefing and others worried that the briefing on the CFS/ME trial would allow the only private company offering the treatment to profit by over-egging preliminary findings.
Common to each case is the issue of what the SMC should do when faced with findings that can be misused or misrepresented by others.
I remember years ago when a BBC producer I was drinking with reacted with scorn when I said the SMC were not pro genetic modification (GM). A circular and admittedly drunken argument ensued. In the end, I think we agreed to disagree and I have since lived with the fact that many will describe us as pro GM, climate alarmist or pro statins. The strength of the scientific consensus on these issues is such that most of our output goes one way. Most scientists would in any case expect us to come down on the same side as the weight of good quality evidence. But I am still adamant that the SMC does not adopt positions on these issues. We are pro science, pro evidence and pro the scientific method. If a good quality, well-designed study were published, which overturned previous findings on any of these subjects the SMC would publicise it with the same enthusiasm as ever. This nearly happened in the case of the notorious Seralini study in 2012: several key journalists called saying they were looking at a new study showing that rats fed on GM maize developed cancerous tumours. The SMC had every reason to believe the study was significant and scientists were on the brink of demonstrating that GM can have serious health risks. What did the SMC do in the 24 hours before we got our hands on the paper? Did we discuss how to keep these findings out of the media headlines? Or discredit them before they reached the public? Did we work with the GM community to anticipate a backlash and prepare messages to limit the damage? No, we did none of these things. When we received the paper; we sent it to every expert qualified to read it and assess its strengths and weaknesses. We were careful not to restrict ourselves to plant scientists and made sure it went to experts on study design, statisticians, toxicologists and experts on animal models. In the event, all the experts dismissed the study as extremely poor with dubious statistics, poor methodology and dubious animal welfare. After receiving our comments, Lawrence McGinty from ITN news declared he was off to the pub and most print journalists led their stories with the critical reaction from the scientific community. The SMC won many friends in the GM community that day and picked up even more enemies from anti GM campaigns. But I have often wondered what the reaction would have been if the study had been good and we had helped to generate a raft of anti GM headlines.
The confusion I think sometimes comes from a sense that the SMC’s remit is to help ‘win the arguments’ on issues from climate change to animal research which are fuelled by misrepresentation of the science.
When we ran a briefing in which a top UK university was criticised for its animal welfare procedures by an independent panel of scientists, an angry academic called me up to say: “I thought the SMC was set up to stop bad headlines on animal research, not create them”. I had to explain that the SMC had never, and would never, block negative reporting on science when things go wrong. Our remit is to encourage and support good scientists to speak out openly and honestly about science in all its guises including the uncertainties, mistakes, poor standards, changes in evidence. If that delivers bad headlines on animal research, GM and pesticides then so be it. We will only ever win arguments on science if the public trust scientists to tell the truth, admit their mistakes and be open about uncertainty.
It would be churlish of any professional press officer to deny that part of our role in preparing for any press conference is to anticipate negative headlines, a backlash from the critics and frustration from policy makers for whom some findings may be inconvenient. In a busy press office, I cannot say we always get that preparation right. Our friends are right to hold us to account and to encourage lesson learning after every bruising encounter. Sometimes preparation, not spin, can make all the difference and scientists still do not understand the media enough to assume that they will know how to avoid walking straight into a bear trap. Nevertheless, anticipating headlines is different to massaging them. I know it will horrify many senior PR managers to hear this but we do not base decisions about which press briefings we run on how the findings will advance or set back a cause. In fact, we often book in briefings before we know what the results will be. When the Centre for Ecology & Hydrology (CEH) announced they would conduct the biggest field trial on bees and neonicotinoids, funded by Syngenta and Bayer, we lobbied to host the publication before the study had even been designed – despite the fact we knew that if the findings gave neonicotinoids a clean bill of health we would come under fire. (In the event our critics seem less concerned about the SMC’s role when the results support their views).
The same was true of the findings of Kathy Niakan’s experiments using CRISPR/Cas 9 genome editing in human embryos, which were announced at the SMC the day after the climate briefing. It was only after booking in the press briefing that I learned that the findings were positive and we were not going to be announcing a major setback in the field of human genome editing.
I know some scientists are perplexed that we seem to take so little responsibility for ensuring the right headlines. Perhaps scientists and press officers reading this will even pause before coming to the SMC when we appear to take so little care of the potential damage that can be done by the ‘wrong messages’ getting out. This is not complacency or laziness on our part. It is a passionate belief in the integrity and power of great scientists communicating top quality research science openly, honestly and without spin. Evan Davis’ new book on post truth is in fact a book on PR and a fascinating (and depressing) insight into how the uber professionalisation of communication and media management in finance, business and politics has contributed to the deep public distrust on which post truth has feasted.
Science these days is many things; the academic researcher who sits in a laboratory conducting experiments to test hypotheses, the former scientist who now works in research council head offices deciding how limited research funds should be spent or the scientist who sits in government advising minsters in the hope of getting evidence based policy. We need all these people and should celebrate our greater influence in government. However, we should be careful not to start judging scientific findings only on whether they assist in science strategy or policymaking.
A colleague, who works in the field, commenting on the climate change story, said: “the scientists, walked into a big party including all the government officials, politicians, campaigners, think-tankers, business leaders and investors pushing to strengthen the Paris Agreement pledges next year, dropped a huge smelly fart and walked out saying “we’re scientists, it’s our job”. But maybe the scientists’ defence is precisely right. As one of the authors of the Nature climate paper said: “the numbers in the paper are the numbers in the paper”. Of course everyone has the right to challenge those numbers but that is science not PR.
No one debating the SMC’s role in these stories has explicitly suggested that we should suppress or play down findings that are likely to be misused but some clearly wish the SMC would adapt our media advice depending on what the findings say. It sounds utterly sensible. But the quickest route to a collapse in public trust in science would be for scientists to start playing down findings that might be misused. Fifteen years ago the SMC was set up to encourage academics to come out of their ivory towers and engage with the media and the public. Even a hint that they should retreat there when their findings are inconvenient scares me.
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Well said. Accuracy, not palatability, is what we need now.
The problem would be resolved in the context of climate change if mainstream consensus acknowledged our planet is far too subtle, profound and alive for us to play at foretelling the future, and concentrated on getting across to humanity the scale of the change we are forcing on the planet and the true range of our uncertainty of the consequences.
We find nowhere in the history of the planet since life emerged when so much carbon has been added so fast to the atmosphere, as far as we can tell. We do not know what we are accelerating towards.
The way that this blog glosses over important details in order to promote a simplistic narrative is just another illustration of why so many are concerned by Fiona Fox’s work, and the impact the Science Media Centre.
Lets look in a bit more detail at the SMILE trial, from Esther Crawley at Bristol University. This trial was intended to assess the efficacy of Phil Parker’s Lightning Process©. Phil Parker has a history of outlandish medical claims about his ability to heal others, selling training in “the use of divination medicine cards and tarot as a way of making predictions” and providing a biography which claimed: “Phil Parker is already known to many as an inspirational teacher, therapist, healer and author. His personal healing journey began when, whilst working with his patients as an osteopath. He discovered that their bodies would suddenly tell him important bits of information about them and their past, which to his surprise turned out to be factually correct! He further developed this ability to step into other people’s bodies over the years to assist them in their healing with amazing results. After working as a healer for 20 years, Phil Parker has developed a powerful and magical program to help you unlock your natural healing abilities. If you feel drawn to these courses then you are probably ready to join.” https://web.archive.org/web/20070615014926/http://www.healinghawk.com/prospectushealing.htm
While much of the teaching materials for the Lightning Process are not available for public scrutiny (LP being copyrighted and controlled by Phil Parker), it sells itself as being founded on neurolinguistic programming and osteopathy, which are themselves forms of quackery. Those who have been on the course have described a combination of strange rituals, intensive positive affirmations, and pseudoscientific neuro-babble; all adding up to promote the view that an individual’s ill-health can be controlled if only they are sufficiently committed to the Lightning Pprogramme. Bristol University appears to have embraced the neurobabble, and in their press release about the SMILE results they describe LP thus: “It is a three-day training programme run by registered practitioners and designed to teach individuals a new set of techniques for improving life and health, through consciously switching on health promoting neurological pathways.”
Unsurprisingly, many patients have complained about paying for LP and receiving manipulative quackery. This can have unpredictable consequences. This article reports of a child attempting to kill themselves after going on the Lightning Process: https://www.nrk.no/livsstil/forsokte-selvmord-etter-me-kurs-1.7891470 Before conducting a trial such a this, the researchers involved had a responsibility to examine the course and training materials and remove all pseudo-science, yet this was not done. Instead, those patient groups raising concerns about the trial were smeared, and presented as being opposed to science.
The SMILE trial was always an unethical use of research funding, but if it had followed its original protocol, it would have been less likely to generate misleading results and headlines. The Skeptics Dictionary’s page on the Lightning Process features a contribution which explains that: “the Lightning Process RCT being carried out by Esther Crawley changed its primary outcome measure from school attendance to scores on a self-report questionnaire. Given that LP involves making claims to patients about their own ability to control symptoms in exactly the sort of way likely to lead to response bias, it seems very likely that this trial will now find LP to be ‘effective’. One of the problems with EBM is that it is often difficult to reliably measure the outcomes that are important to patients and account for the biases that occur in non-blinded trials, allowing for exaggerated claims of efficacy to be made to patients.”
The SMILE trial was a nonblinded, A vs A+B design, testing a ‘treatment’ which included positive affirmations, and then used subjective self-report questionnaires as a primary outcome. This is not a sensible way of conducting a trial, as anyone who has looked at how junk-science can be used to promote quackery will be aware.
You can see the original protocol for the SMILE trial here (although this protocol refers to merely a feasibility study, this is the same research, with the same ethical review code, the feasibility study having seemingly been converted to a full trial a year into the research): http://www.bristol.ac.uk/media-library/sites/ccah/migrated/documents/smprotv6final.pdf
The protocol that: “The primary outcome measure for the interventions will be school attendance/home tuition at 6 months.” It is worth noting that the new SMILE paper reported that there was no significant difference between groups for what was the trial’s primary outcome. There was a significant difference at 12 months, but by this point data on school attendance was missing for one third of the participants of the LP arm. The SMC failed to inform journalists of this outcome switching, instead presenting Prof Crawley as a critic converted by a rigorous examination of the evidence, despite her having told the ethics review board in 2010 that “she has worked before with the Bath [LP] practitioner who is good”. https://meagenda.wordpress.com/2011/01/06/letter-issued-by-nres-following-scrutiny-of-complaints-in-relation-to-smile-lighting-process-pilot-study/
Also, while the original protocol, and a later analysis plan, refer to verifying self-reported school attendance with school records, I could see no mention of this in the final paper, so it may be that even this more objective outcome measure has been rendered less useful and more prone to problems with response bias.
Back to Fiona Fox’s blog: “If you had only read the headlines for the CFS/ME story you may conclude that the treatment tested at Bristol might be worth a try if you are blighted by the illness, when in truth the author said repeatedly that the findings would first have to be replicated in a bigger trial.”
How terrible of sloppy headline writers to misrepresent research findings. This is from the abstract of Esther Crawley’s paper: “Conclusion The LP is effective and is probably cost-effective when provided in addition to SMC for mild/moderately affected adolescents with CFS/ME.” http://adc.bmj.com/content/early/2017/09/20/archdischild-2017-313375
Fox complains of “vocal critics of research” in the CFS and climate change fields. There has been a prolong campaign from the SMC to smear those patients and academics who have been pointing out the problems with poor quality UK research into CFS, attempting to lump them with climate change deniers, anti-vaccinationists and animal rights extremists. The SMC used this campaign as an example of when they had “engineered the coverage” by “seizing the agenda”:
Despite dramatic claims of a fearsome group of dangerous extremists (“It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade”), a Freedom of Information request helped us gain some valuable information about exactly what behaviour most concerned victimised researchers such as Esther Crawley:
“Minutes from a 2013 meeting held at the Science Media Centre, an organisation that played an important role in promoting misleading claims about the PACE trial to the UK media, show these CFS researchers deciding that “harassment is most damaging in the form of vexatious FOIs [Freedom of Information requests]”.[13,16, 27-31] The other two examples of harassment provided were “complaints” and “House of Lords debates”. It is questionable whether such acts should be considered forms of harassment.
[A full copy of the minutes is included at the above address.]
Since then, a seriously ill patient managed to win a legal battle against researchers attempting to release key trial data, picking apart the prejudices that were promoted and left the Judge to state that “assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder.” http://www.informationtribunal.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF
So why would there be an attempt to present request for information, complaints, and mere debate, as forms of harassment? Rather embarrassingly for Fiona and the SMC, it has since become clear. Following the release of (still only some of) the data from the £5 million PACE trial it is now increasingly recognised within the academic community that patients were right to be concerned about the quality of these researchers’ work, and the way in which people had been misled about the trial’s rsults. The New York Times reported on calls for the retraction of a key PACE paper (Robin Murray, the journal’s editor and a close friend of Simon Wessely’s, does not seem keen to discuss and debate the problems with this work): https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html The Journal of Health Psychology has published as special issue devoted to the PACE trial debacle: http://journals.sagepub.com/doi/full/10.1177/1359105317722370 The CDC has dropped promotion of CBT and GET: https://www.statnews.com/2017/09/25/chronic-fatigue-syndrome-cdc/ And NICE has decided to a full review of its guidelines for CFS is necessary, citing concerns about research such as PACE as one of the key reasons for this: https://www.nice.org.uk/guidance/cg53/resources/surveillance-report-2017-chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-diagnosis-and-management-2007-nice-guideline-cg53-4602203537/chapter/how-we-made-the-decision https://www.thetimes.co.uk/edition/news/mutiny-by-me-sufferers-forces-a-climbdown-on-exercise-treatment-npj0spq0w
The SMC’s response to this has not been impressive.
Fox writes: “Both briefings fitted the usual mould: top quality scientists explaining their work to smart science journalists and making technical and complex studies accessible to readers.”
I’d be interested to know how it was Fox decided that Crawley was a top quality scientist. Also, it is worrying that the culture of UK science journalism seems to assume that making technical and complex studies (like SMILE?!) accessible for readers in their highest goal. It is not a surprise that it is foreign journalists who have produced more careful and accurate coverage of the PACE trial scandal.
Unlike the SMC and some CFS researchers, I do not consider complaints or debate to be a form of harassment, and would be quite happy to respond to anyone who disagrees the concerns I have laid out here. I have had to simplify things, but believe that I have not done so in a way which favours my case. It seems that there are few people willing to try to publicly defend the PACE trial anymore, and I have never seen anyone from the SMC attempt to respond to anything other than a straw-man representation of their critics. Lets see what response these inconvenient truths receive.
The only point I would add to this excellent post is to ask why on earth the SMC decided to feature such a small, poorly-designed trial as SMILE. The most likely explanation is that it was intended as a smokescreen for an inconvenient truth. NICE’s retrieval of their CFS guideline from the long grass (the “static list”) is a far bigger story and it was announced in the same week that SMILE was published.
Well said. Meanwhile, overseas: http://www.npr.org/sections/health-shots/2017/10/02/554369327/for-people-with-chronic-fatigue-syndrome-more-exercise-isnt-better
SMC tries to paint those who object to their PR distortions of real science as irascible trolls. But the real inconvenient truth is this: so much of what SMC publishes is criticised because it’s biased, unthorough, and flawed.
Fiona Fox says:
“Our remit is to encourage and support good scientists to speak out openly and honestly about science in all its guises including the uncertainties, mistakes, poor standards, changes in evidence.”
and yet, in the case of the PACE trial, the SMC has (to date) sided entirely with the trial’s investigators in the face of what has proven to be entirely justified criticism. Even more, they have propagated a false narrative about intimidation and death threats towards ME/cfs researchers which has ramped up the toxicity of the debate. After such claims were exposed as being grossly exaggerated (by none less than the Information Commissioner) their failure to correct that wrong speaks volumes about the bias in SMC coverage of the topic.
Fiona Fox also writes:
“We are pro science, pro evidence and pro the scientific method. If a good quality, well-designed study were published, which overturned previous findings on any of these subjects the SMC would publicise it with the same enthusiasm as ever.”
but anyone who has followed the progress of biomedical research into ME/cfs (as I have) will tell you that this is patently not true.
Ms Fox’s piece carries all the hallmarks of a rallying call to friends to run to the defence of a sinking ship. I hope the damage is terminal.
There are battles, and there are wars.
With a complex issue such as climate change, not every prediction is going to be confirmed. Within the context of the urgent need for wide-ranging action, scientifically-verified facts indicating change is proceeding more slowly than anticipated may be perceived as a battle won by climate deniers. In fact, any delay in the advance of climate change is extremely welcome; time is not on our side.
But should the press, the pubic, and above all, we scientists, ever think that scientists are hiding inconvenient truths, then we will have lost the war.
Why are you being criticised? The research paper and press release were very clear that the research, was based on highly technical computer modelling, and had produced highly nuanced results – as one would expect.
The published paper said “limiting warming to 1.5 °C is NOT YET a geophysical impossibility, but is likely to require delivery on strengthened pledges for 2030 followed by challengingly deep and rapid mitigation.”
That seems pretty clear that there’s a little more room for hope – but not much. As everyone knows, greenhouse gas emissions are still RISING – so this research is very theoretical anyway.
My comment would be that anyone reporting this should have referred to the PEER-REVIEWED paper.
My question would be, given this was technical, theoretical and almost irrelevant (since there’s no sign of greenhouse gas emissions declining, let alone at the rate needed), why did you hold a press briefing anyway? There’s any number of these modelling papers … But even though you did, it’s down to journalists to get it right.
Here’s the actual abstract
The Paris Agreement has opened debate on whether limiting warming to 1.5 °C is compatible with current emission pledges and warming of about 0.9 °C from the mid-nineteenth century to the present decade. We show that limiting cumulative post-2015 CO2 emissions to about 200 GtC would limit post-2015 warming to less than 0.6 °C in 66% of Earth system model members of the CMIP5 ensemble with no mitigation of other climate drivers, increasing to 240 GtC with ambitious non-CO2 mitigation. We combine a simple climate–carbon-cycle model with estimated ranges for key climate system properties from the IPCC Fifth Assessment Report. Assuming emissions peak and decline to below current levels by 2030, and continue thereafter on a much steeper decline, which would be historically unprecedented but consistent with a standard ambitious mitigation scenario (RCP2.6), results in a likely range of peak warming of 1.2–2.0 °C above the mid-nineteenth century. If CO2 emissions are continuously adjusted over time to limit 2100 warming to 1.5 °C, with ambitious non-CO2 mitigation, net future cumulative CO2 emissions are unlikely to prove less than 250 GtC and unlikely greater than 540 GtC. Hence, limiting warming to 1.5 °C is not yet a geophysical impossibility, but is likely to require delivery on strengthened pledges for 2030 followed by challengingly deep and rapid mitigation. Strengthening near-term emissions reductions would hedge against a high climate response or subsequent reduction rates proving economically, technically or politically unfeasible.
Concerning the SMILE trial, it would perhaps have been more to the point if you’d cited my tweet on the statistics.
“I doubt that they are positive. For p=0.003 to be credible that would need prior of 0.3 that NLP works. Who can believe that?”
There you have it readers, any criticism of the SMILE trial, no matter how qualified the critic, is dismissed because it came from ‘critics of science from … ME activists.’
Some scientists might think that promoting standing in a magic circle shouting ‘Stop!’ is not the best way to reduce symptoms or cure a physical disease, but the SMC begs to differ.
Telling children to lie to adults about their symptoms getting worse, might cause some people cause for concern, but not here, you are just a critic of science if you feel this way.
And if you think that telling children not to tell the truth about their symptoms, then hailing the results of a questionnaire asking the same children about their symptoms, just might have a risk of bias, well you are just an enemy of the truth, and should hang your head in shame.
Tut tut. Naughty ‘activists’.