Trial By Error: The Science Media Centre and UK’s Coverage of New NICE Draft

By David Tuller, DrPH

As Trump’s legal team continues to spout nonsense rather than acknowledge that the orange balloon lost the election, core members of the UK’s biopsychosocial ideological brigades are also engaged in embarrassing denialism. Last week, a draft of new ME/CFS clinical guidelines issued by a key British health agency advised against graded exercise therapy and cognitive behavior therapy—the two interventions long recommended as paths to recovery. Several of the experts most associated with these rejected approaches promptly launched an unconvincing counter-attack, courtesy of the UK’s Science Media Centre–a purportedly neutral purveyer of scientific information to journalists and the public.

The news from the National Institute for Health and Care Excellence (NICE) received major coverage in the UK, including in The Times, The Guardian, The Telegraph and BMJ.com. (In the US, the only mainstream news organization that appeared to note the development was STAT, which ran a piece I co-wrote with Northwestern University law professor Steve Lubet.) Journalists at The Times, in particular, demonstrated again last week that they take ME/CFS seriously and have not been bamboozled by the SMC’s long-running propaganda campaign promoting the GET/CBT treatment paradigm. The Times article was short but to the point, and it bore the following attention-grabbing headline: “Stop prescribing exercise for ME sufferers, doctors told.”

In June, Sean O’Neill, one of the Times reporters who wrote last week’s NICE story, produced a package of articles related to the announcement that UK government agencies had agreed to invest £3.2 million in a major genetic study of ME/CFS. In 2018, science reporter Tom Whipple wrote about the re-analysis of the PACE trial, which was published in the well-respected journal BMC Psychology and documented that the touted interventions were ineffective. (I was a co-author on that study). Later that year, Whipple also wrote about Virology Blog’s open letter to The Lancet, which called for an independent reanalysis of the data from the PACE trial.

That letter, which I organized and sent to Lancet editor Richard Horton, cited the PACE trial’s “unacceptable methodological lapses.” It was signed by more than 100 scientists, clinicians and other experts from Harvard, University College London, Columbia, Stanford, Berkeley, Queen Mary University of London, and other leading research institutions around the world, as well as ten members of Parliament and scores of patient/advocacy groups. More people probably saw that Times story than have read any of my brilliant and earth-shattering Virology Blog posts!

It is hard to measure the awareness and credibility generated by that kind of straightforward news coverage in such a prominent venue as The Times. Unfortunately, other high-profile British journalists have proven to be more adept at being cheerleaders and stenographers for claims made by the SMC and its favored scientists–as demonstrated by some of their glowing testimonials in a 2013 booklet celebrating the organization’s tenth anniversary.

The SMC has always carried water for the PACE authors, whose long-time colleague, Professor Sir Simon Wessely, has been closely linked with the organization from its inception. In response to the new draft of ME/CFS clinical guidelines from NICE, the SMC posted petulant comments from Sir Simon as well as the three PACE lead investigators—Professor Peter White, Professor Michael Sharpe, and Professor Trudie Chalder—and a fifth ideological comrade.

Only later did the SMC decide to add a lone supporter of the draft NICE guidelines to counter-balance the collective whine from Sir Simon and his cronies. Perhaps the organization is so thoroughly steeped in its own bias that it was unaware how biased it showed itself to be in its immediate choice of commenters. The decision to highlight responses from those with the most at stake in the ongoing collapse of the GET/CBT treatment paradigm demonstrates how seriously they take the threat to their hegemonic reign over the issue.

From their statements, the GET/CBT campaigners appear to be aware they are losing control of the ME/CFS narrative. They still don’t seem able to grasp or at least acknowledge publicly how or why they and their scientific claims are now being disregarded–the same claims that were once accepted without questions by the entire UK academic-medical-government complex.

In their comments, they repeat arguments about “evidence-based” treatments but fail to grapple with an inconvenient fact: The NICE review of the body of research rated the quality of evidence from these studies as “low” or “very low.” If an “evidence-based” treatment is based on evidence of very low quality, the treatment itself is also likely to be of very low quality. In that case, protesting that the treatment is “evidence-based” is not likely to be a persuasive or effective strategy.

I assume these folks might be concerned that the discrediting of the treatment paradigm they have championed for decades could have undesired reputational impacts. They have reason to be concerned. Their reputations will likely suffer as their research and recommendations are increasingly dismissed and ignored, not only internationally but at home in the UK. That’s too bad for them personally, but patients’ well-being is obviously more important than their egos. And patients’ well-being will be enhanced with NICE guidelines that do not rely on the kind of “low” and “very low” quality research this group of investigators has been conducting and publishing for years. It’s time UK funders stopped the gravy train.

{ 9 comments… add one }
  • Alicia Butcher Ehrhardt, PhD 21 November 2020, 1:07 am

    One of the defining marks of the true scientist is the ability to realize they have been wrong when new data is presented.

    True scientists now recognize that H. pilori is the cause of over 80% of stomach ulcers, not excess acid.

    I still remember the excitement in our Plasma Physics Lab at Princeton when it appeared cold fusion – a completely different method of obtaining fusion – might be true. Sadly, it turned out not to be, but an enormous amount of energy and intelligence went to examining the possibility, not denying it.

    I’m afraid your ‘GET/CBT campaigners’ are not true scientists.

  • CT 21 November 2020, 2:34 am

    Will Kate Kelland and Reuters ever apologize to you, I wonder? They’re looking increasingly foolish I think, if not Trumpian. Journalists need to do their own investigation work and not rely on what they are told by others who may have vested interests. That’s especially important when health and lives are at stake. To my mind it would help if our health journalists had actually trained in a health or science discipline. I assume that those without such training are taken on for their writing skills and not their ability to understand science. Both would be best, obviously, but the ability to unpick the medical literature must come first. They shouldn’t have to rely on the SMC.

  • Anil van der Zee 21 November 2020, 7:28 am

    Hear hear. You’re such a good writer David! You’ve said it all!

  • D.Groov 21 November 2020, 2:22 pm

    SMC and the experts selfevidenced reaction without retraction.
    A joke with no-joke factors maintaining the eminenced egoproblems.

    Great article Mr. Tuller

  • Leela Play 21 November 2020, 5:02 pm

    I’m so pleased that the NICE panel is composed of people not afraid to do a proper evidence review. It seems that cronyism in ME is finally losing it’s power. Next the SMC, the Lancet, Cochrane, Reuters and other cronies will be revealed for the old-boy-network-over-science archaic institutions and individuals that they are, The MRC and CMRC saw the writing on the wall a bit sooner and at least have made some steps of moving towards quality, biomedical science.

  • Dr Paul 21 November 2020, 5:50 pm

    The Science Media Circus is one of the many hydra-heads of the Spiked empire, a noisy right-wing libertarian outfit. I knew its leading people when I was supporter of the left-wing group from which they evolved — a long story that I won’t tell here — and one thing I know for sure is that we never cared what people thought of us, irrespective of what we said or did or what they said about us. The politics have changed dramatically but the methodology remains remarkably unchanged, and one thing that has continued unabated is a rather tiresome (and juvenile) contrarianism. I believe that this contrarianism was one reason why the SMC came under the Spiked wing: as the Wessleyans’ ‘it’s all in your head’ notions about ME/CFS became increasingly discredited as larger numbers of people started to recognise that it is a physiological illness, their stubborn defence of their ideas fitted in nicely with Spiked’s contrarianism.

  • steve hawkins 28 November 2020, 2:07 pm

    Well said!
    And well done! (y)

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