The Telegraph – Doctor’s diary column , by Dr James le Fanu, 17 October: Gove was right, we have had enough of experts
Michael Gove’s remark amid the referendum campaign that ‘people have had enough of experts’ resonated widely – reflecting a well-founded suspicion that informed opinion, buttressed by jargon and statistics, can be much less trustworthy than it appears. This has become an endemic problem in medicine, and the recent unmasking of a widely endorsed
treatment for Myalgic Encephalomyalitis – better known as ME, or chronic fatigue syndrome (CFS) – is highly instructive.
Last November, the findings of a study (the Pace Trial) demonstrating much benefit from Cognitive Behaviour and Graded Exercise therapy, with a greater than 20 per cent recovery rate, elicited 1,200 critical comments from Telegraph readers, who drew attention to the uncertainty as to how ‘recovery’ was defined.
This is no small matter, as those with CFS almost universally report that exertion exacerbates symptoms. Hence its official endorsement as an ‘effective’ treatment could have seriously adverse consequences. To their credit, six patients, with the help of sympathetic specialists, sought to clarify how researchers had conducted their trial.
Undeterred by criticisms that they were ‘a very damaging group of individuals’ whose inquiries ‘would harm the majority of patients’, after several refused attempts to invoke the Freedom of Information Act, they managed finally to obtain the raw data from which the researchers reached their conclusions. This revealed a series of difficulties lucidly summarised by mathematics professor Rebecca Goldin on the stats.org website.
Most significantly, as those Telegraph readers inferred, the criteria for ‘recovery’ had been downgraded as the trial progressed, being redefined as the average physical function score of someone in their 80s.
‘The Pace Trial is worthless,‘ says Prof Jonathan Edwards of University College, London. Michael Gove was right on the money.
More comments on the PACE trial:
Intelligent medicine podcast: Part 1: A Flawed Study on Chronic Fatigue Syndrome; Patients Fight Back, by Dr Ronald Hoffman
PubMed: Aleem Matthee’s reply to Nick Hawks’ article: Freedom of information: can researchers still promise control of participants’ data?
Proof Positive (Revisited), by Margaret Williams, 14th September 2016
The canary blog: The results they really didn’t want you to see: key ME/CFS trial data released, by Conrad Bower, 2 October 2016
BMJ comments: AfME’s response – in the BMJ. Sonya Chowdhury responds to ‘psychosomatic’ comment 10 October 2016