From: contact@angliameaction.org.uk <contact@angliameaction.org.uk>
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PACE: Shall "Zombie Science" Live?
In 2008 Professor Bruce G Charlton published the paper entitled 'Zombie science: A sinister consequence of evaluating scientific theories purely on the basis of enlightened self-interest.' Medical Hypotheses. 2008; Volume 71: 327-329 [1]. The title is humorous but the analysis is, excuse the pun, deadly serious.
In his paper Professor Charlton states: "Although the classical ideal is that scientific theories are evaluated by a careful teasing-out of their internal logic and external implications, and checking whether these deductions and predictions are in-line-with old and new observations; the fact that so many vague, dumb or incoherent scientific theories are apparently believed by so many scientists for so many years is suggestive that this ideal does not necessarily reflect real world practice. In the real world it looks more like most scientists are quite willing to pursue wrong ideas for so long as they are rewarded with a better chance of achieving more grants, publications and status. The classic account has it that bogus theories should readily be demolished by sceptical (or jealous) competitor scientists. However, in practice even the most conclusive ‘hatchet jobs’ may fail to kill, or even weaken, phoney hypotheses when they are backed-up with sufficient economic muscle in the form of lavish and sustained funding. And when a branch of science based on phoney theories serves a useful but non-scientific purpose, it may be kept-going indefinitely by continuous transfusions of cash from those whose interests it serves. If this happens, real science expires and a ‘zombie science’ evolves."
In 2011 Professor Peter White et al published the results of their highly controversial, and UK taxpayer-funded, 'PACE Trial' in the Lancet under the title 'Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 377: 823-836 [2]. The PACE Trial results have been widely hailed as scientific proof that "CFS/ME" is in no small part a behavioural and physical deconditioning disorder by supporters of such psychosocial theories.
Since the inception of PACE however, many have laboured to question the methodology of said trial, the validity of its published results, and have called for scientific transparency and accountability that was, and is, decidedly lacking. The sterling efforts of, for example, Professor Malcolm Hooper, Tom Kindlon, David Tuller, James Coyne and many, MANY, others have now been augmented by Mark Fink's peer-reviewed critique recently published in the Journal of Neurology and Neurobiology. Entitled 'The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Review' [3]. The paper is a must-read document.
On the basis of extensive and erudite analysis, and in spite of the earlier claims of PACE authors and PACE supporters, Fink concludes "...the PACE trial’s definition of recovery labelled patients as recovered, regardless of whether they remained disabled or not. Its null effect invalidates the use of CBT and GET in ME/CFS and invalidates the biopsychosocial model of deconditioning and fear avoidance. The PACE trial found that the proportion negatively affected by CBT and GET was between 46% and 96%, most likely estimated at 74%, as shown in a large survey recently conducted by the ME Association. Medication with such high rates of adverse events would be withdrawn immediately. The PACE trial’s discovery of an “increase in exercise tolerance (walking distance) without an increase in exercise capacity (fitness)” means there’s an underlying physical problem preventing this and that none of the treatments were addressing this issue but also that ME/CFS is a physical disease, confirming the conclusion of the IOM. And therefore, from now on our focus should be on biomedical (instead of psychosocial) research to find effective treatment for this debilitating disease."
As said, the Fink paper is quite simply a must-read. I fail to see how any open-minded and conscientious person can study the matters summarised by Mark Fink and not come to the conclusion that the central psychosocial claims of the PACE Trial authors on "CFS/ME" are intellectually DEAD.
PACE does not just stand in isolation however. It has diverted much needed funding from biomedical research that might have led to real relief and real cures for millions of patients. PACE has also arguably led to massively wasteful flawed clinical provision in the UK and around the world. Such flawed provision has been vigorously questioned and contested for years. One cannot therefore help recall the words of Professor Charlton: "...when a branch of science based on phoney theories serves a useful but non-scientific purpose, it may be kept-going indefinitely by continuous transfusions of cash from those whose interests it serves. If this happens, real science expires and a ‘zombie science’ evolves." What I and, I expect, millions of denigrated and mistreated ME patients around the world want to know now is, will the PACE Trial 'science' and associated 'clinics' be kept alive as some reality-defying "zombie"? Sustained on a pointless and constant drip-feed of yet more taxpayers' millions?
In the UK, public "CFS/ME" policy has been unjustifiably skewed, and the NICE (National Institute for Health and Clinical Excellence) clinical guideline 53 (CG53) that was de-facto built upon the spurious psychosocial theories of those associated with the PACE Trial was, and is, decried by leading NHS professionals and politicians [4]. Many patients and professionals understandably assert that NICE CG53 has misled the medical profession and has greatly contributed to disgraceful neglect and mistreatment of patients. CG53 is also years past its due review date. In my view NICE CG53 should be consigned to the dustbin of misadministration. It is time for NICE to start again and time for genuine, non-zombie, science to have its day.
Anglia ME Action. April 2016.
contact@angliameaction.org.uk
REFERENCES/LINKS:
[1] Zombie science: A sinister consequence of evaluating scientific theories purely on the basis of enlightened self-interest. Medical Hypotheses. 2008; Volume 71: 327-329. http://medicalhypotheses.blogspot.co.uk/2008/07/zombie-science-dead-but-wont-lie-down.html
[2] White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, et al. (2011) Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 377: 823-836.
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2811%2960096-2/abstract
www.ncbi.nlm.nih.gov/pubmed/21334061
[3] Vink M (2016) The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Review. J Neurol Neurobiol
2(3): doi http://dx.doi.org/10.16966/2379-7150.124 http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php
[4] See for example:
The UK Government’s three-pronged strategy for “CFS/ME” [AMEA – Corrected Version], Margaret Williams, 15th July 2014:
http://www.angliameaction.org.uk/docs/Williams-UK-Government-Strategy-for-CFS-ME.pdf
Also see:
http://angliameaction.org.uk/NICEJRdocs/Terry_Mitchell_WS.pdf
http://angliameaction.org.uk/NICEJRdocs/Ian_Gibson_WS.pdf
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