By David Tuller, DrPH
As Trumpâ€™s legal team continues to spout nonsense rather than acknowledge that the orange balloon lost the election, core members of the UKâ€™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 therapyâ€”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: â€œStop prescribing exercise for ME sufferers, doctors told.â€
In June, Sean Oâ€™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 Â£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 Blogâ€™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 trialâ€™s â€œunacceptable methodological lapses.â€ 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 investigatorsâ€”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 donâ€™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 â€œevidence-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 â€œlowâ€ or â€œvery low.â€ If an â€œevidence-basedâ€ 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. Thatâ€™s too bad for them personally, but patientsâ€™ well-being is obviously more important than their egos. And patientsâ€™ 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.