By David Tuller, DrPH
Not long ago, Sir Simon scored an own goal by enticing a childhood buddy to enter the PACE debate. That buddy, attorney and social commentator Mike Godwin, soon pronounced the trialâ€”which Sir Simon had called â€œa thing of beautyâ€–to be â€œso profoundly flawed that it cannot be trusted.â€ Sir Simon tweeted out a brave front in the face of his friendâ€™s rejection of PACE, reaffirming his own belief that the trial was well-conducted. Whatever. Godwin agreed to sign the open letter to Lancet editor Richard Horton.
Now Professor Michael Sharpe has done something similar. He recently tweeted out a Guardian essay by Keith Kahn-Harris, a sociologist and author of a new book about denialism in science. Professor Sharpe has often framed criticism of PACEâ€™s methodological and ethical lapses as a form of scientific denialism, akin to climate-change skepticism. Perhaps he believed that Dr Kahn-Harrisâ€™ Guardian essay somehow proved his point.
In any event, I read on the Science For ME forum that Dr Kahn-Harris had written an earlier Guardian essay about his own experience of having ME, triggered in his case by a college bout of glandular fever (called mononucleosis in the US). In that 2008 essay he questioned the hegemony of the psychiatric model and suggested its grip on the field was weakening. Of course, The Lancet‘s publication of the first PACE results three years later served to bolster the credibility of that approach, at least temporarily.
Hereâ€™s an excerpt from Dr Kahn-Harris’ 2008 piece:
For many years, psychiatrists dominated the research and treatment of ME. The treatment of first choice remains various forms of cognitive behavioural therapy (CBT) which, applied crudely, can end up suggesting to patients that their illness is “all in the mind”. The ME community is full of stories of patients being forced into exercise programmes that make their health worse, of benefits and insurance claimants accused of lying, of parents of children with ME accused of Munchausen Syndrome by Proxy. Sophie Mirza, who became the first person to be classified as having died of ME in the UK in 2005, was even forcibly sectioned.
Thanks to years of campaigning by ME patient groups and charities, the situation is improving – very slowly. Psychiatric explanations of ME are increasingly disputed and ME is now listed by the WorldÂ HealthÂ Organization as a neurological condition. No one is certain what causes ME or how it should be treated…Crude applications of the psychiatric model of ME may have caused a lot of damage, but they are in line with common perceptions of ill-health. ME is still often treated as a battle to be won. To be cautious, to listen to the needs of one’s own body, is to “give in.”
Oops! I guess Professor Sharpe didnâ€™t google Dr Kahn-Harris before disseminating the denialism essay. After reading these words, I reached out to Dr Kahn-Harris and sent him the open letter. I wanted to provide him with an opportunity to publicly express his dismay at both the PACE trialâ€™s missteps and at The Lancetâ€™s decision to ignore them. Like Mike Godwin, he agreed to add his name to the list of prominent scientists, academics, doctors, members of Parliament and others calling on Dr Horton to do his job.
These actions on the part of Sir Simon and Professor Sharpe suggest once again that they are operating in a parallel universe of reasoning, co-inhabited by Dr Horton and the Lancet editorial team. They see a “thing of beauty,” per Sir Simon’s description; signers of the open letter look at the same facts and see a piece of crap.
PACEâ€™s flaws have been fully documented. The responses from the PACE authors have been inadequate and unconvincing. That is why so many smart people from the international scientific, medical and academic communities have supported the open letterâ€™s call for research accountability. In this case, it is easy to identify the true denialists. And they are not the signatories of the open letter.
(Sir Simon and Professor Sharpe, thanks much! And if you happen to read this, can you suggest any other prominent thinkers I should contact so I can add their names in the next round? Do let me know. Best–David)