29 March 2011
On 25 March, an email was sent to members of the British Association for CFS/M.E. (BACME) on behalf of Michelle Selby, Acting Chair of BACME, reporting the organisation’s response to the initial results of the PACE trial.
The National Institute for Health and Clinical Excellence (NICE) has previously recommended Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) as treatments for mild and moderate categories of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/M.E.) on the basis of somewhat limited evidence in the form of numerically small clinical trials.
The PACE Trial represents the highest grade of clinical evidence – a large randomised clinical trial, carefully designed, rigorously conducted and scrupulously analysed and reported. It provides convincing evidence that GET and CBT are safe and effective therapies and should be widely available for patients with CFS/M.E. as per the NICE guidelines.
Adaptive Pacing Therapy (APT) has not been shown to be effective as delivered within the PACE Trial, but this may differ from activity strategies promoted by CFS/M.E. services nationally. This trial shows that approaches aimed at staying within limits imposed by the illness are less effective than those that test such limits.
It is clearly vital to continue our research into biological mechanisms for CFS/M.E., remembering past attempts that have shown how difficult this can be. In the current absence of a biomedical model for the causation, and no evidence based pharmacological intervention, we have a pragmatic approach to treatment that has been shown to work for many and we should continue to offer it, ensuring that health professionals receive the level of training and supervision required to maintain standards of excellence across the country.
The British Association for CFS/M.E. (BACME) welcomes the recent announcement by the MRC that it is putting £1.5 million towards research into the cause of CFS/M.E.
BACME’s email to members
As the PACE trial was a significant study in the field of CFS/ME, BACME has taken time to consider its implications before issuing a response. If patients seek clarification regarding some of the interpretations of the findings the following points may be helpful:
Supporting the PACE Trial does not contradict any of the statements below:
- We (BACME) are not saying that CFS/ME is a psychological illness, rather we prefer to use the term ‘medically unexplained syndrome’ as we do not have a biochemical or physical marker for diagnosis
- We believe that further research into a biomedical mechanism for the illness should be vigorously pursued
- If a patient is disabled, they are entitled to benefits irrespective of the mechanism causing that disability
- Currently nothing other than CBT and GET has shown any sustained benefit for CFS/ME – it is essential that we ensure that these treatments should be delivered to the highest standard across the country. It is also crucial that health professionals, patient charities, and patients are in constant dialogue to maintain and improve service provision in a climate of public sector cuts.