Additional comment from the PACE trial PIs

This clinic did not cover questions in regard to funding, research or complaints against the NHS. Such questions need to be addressed to the local GPC (General Practitioner Council). However as there was so much interest on these subjects we have left many of them under this heading for viewing but they are intentionally not answered by the panel.

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by clareb35 on Mon Aug 19, 2013 7:05 pm

Additional comment from the PACE trial PIs

I share Jon Denberry's concerns about the potentially ambiguous information about recovery from CFS after treatments in the PACE trial.

In the interests of those who do not have access to the journal Psychological Medicine I would like to quote from and comment on two articles published by the PACE Trial Management Group in that journal in 2013.

The first extract is from the following article:

P. D. White, K. Goldsmith, A. L. Johnson, T. Chalder and M. Sharpe Recovery from chronic fatigue syndrome after treatments given in the PACE trial. Psychological Medicine, Available on CJO 2013 doi:10.1017/S0033291713000020

"As a little more than a fifth of participants treated with CBT or GET had recovered a year after starting treatment, we still need to consider ways of enhancing the effectiveness of these treatments"

With a 'failure' rate for these treatments of around four fifths of participants (78%), even using what many have suggested was a very low threshold for defining 'recovery', an alternative interpretation would be that we need to consider wholly different treatments.

The second extract is from the authors' response to the correspondence concerning the above paper and can be found at:
Psychological Medicine / Volume 43 / Issue 08 / August 2013, pp 1791 - 1792

The authors state there:

"The findings from the PACE trial are clear; however we measured recovery, CBT and graded exercise therapy (GET) were more likely to lead to recovery, when added to specialist medical care (SMC),compared to either adding APT or SMC alone. Recovery after SMC alone, using our composite criteria, was only 7% - the same as that without treatment (Cairns & Hotopf, 2005)–whereas three times as many (22%) recovered after receiving CBT or GET. The PACE trial has shown that both CBT and GET are moderately effective, safe, cost-effective, and are more likely to lead to recovery (White et al .2011,2013; McCrone et al 2012). These treatments should now be routinely offered to all those who may benefit from them (Crawley et al.2013)."

I am a patient who has lived with ME for nearly 10 years. My personal definition of recovery would be to be able to return to the full time work and commuting and long-distance running that were normal for me before I got ill - but that remain out of reach for me despite my best efforts and a combination of CBT, pacing and a graded return to physical activity. Forgive me if I would like treatments that work for more than 22% of participants and that can deliver a more comprehensive and demanding definition of 'recovery'.