Dr James Le Fanu on the PACE Trial | Daily Telegraph | 17 October 2016

From the Daily Telegraph | Doctor’s Diary | 17 October 2016. Regular column by Dr James Le Fanu.


DOCTOR’S DIARY: 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.


DAILY TELEGRAPH LETTER FROM COLIN BARTON, SUSSEX AND KENT ME/CFS SOCIETY | 20 OCTOBER 2016


SPECIALISED ME CARE

SIR – James Le Fanu discusses ME, also known as chronic fatigue syndrome.

ME is classified by the Department of Health as a “long-term neurological disease of unknown cause”, and guidelines were issued by the National Institute for Health and Care Excellence some years ago.

These days, there are a number of specialist NHS centres across Britain staffed by doctors, physiotherapists, psychologists and occupational therapists. These services – set up when the DoH provided £8.5 million for the purpose in 2005 – deal with around 11,000 new referrals a year and have seen well over 100,000 patients so far in England alone. There is a desperate need for further funding to expand these vital services, and for more biomedical research.

Colin Barton
Chairman, Sussex and Kent ME/CFS Society
Brighton, East Sussex

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