PACE Trial: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Baroness Wheeler Excerpts

Wednesday 6th February 2013 Grand Committee

[Baroness Wheeler]

My Lords, I, too, welcome this debate and acknowledge the work of the noble Countess, Lady Mar, on CFS/ME as chair of Forward-ME and vice-chair of the All-Party Parliamentary Group. Although a last-minute stand-in in this debate for my noble friend Lord Hunt—he is due shortly in the Chamber for the Statement on the Mid Staffs report—I am not new to this issue. As the noble Countess regularly contributes on CFS/ME to health debates I have participated in, most recently our extensive debate last November on neurological diseases, initiated by my noble friend Lady Ford. What is new to me is the focus on the PACE trial and the opportunity to hear from our expert medical and psychiatrist colleagues about the wider issues and perspectives, and about the trial itself: what it covered, who was involved, its findings and results and the wider, extensive research that is currently being undertaken across the world.

As we have heard, the PACE trial was the largest-ever randomised controlled trial of treatments of CFS/ME, primarily funded by the Medical Research Council following competitive peer review, with its main findings concerning efficacy and safety published in the Lancet. It was designed to compare improvements in safety after CBT and GET with outcomes after ADP and SMC. The patients were recruited from hospital clinics in England and Scotland, and were able to travel to clinics to receive treatment. The trial was not designed to test treatments in patients with severely disabling illness. As a non-expert, it seems to me that some of the criticisms and disappointments levelled at PACE do not fully recognise this.

As we have heard from noble Lords in this debate, the trial provided clear evidence that both CBT and GET were better than ADP or SMC in improving both symptoms and disability. In fact, all the treatments were found to be safe without any serious reactions to treatments in any of the treatment groups. I understand that a paper published last week showed that CBT and GET are three times more likely to bring about recovery than any other treatments.

Like other speakers, I want to underline the importance of looking to the future. On the NICE guidelines, I support noble Lords who stress that the key issue about them is making sure that they are actually implemented, so that patients can receive effective treatment and care wherever they live in the UK.

In the debate on 20 November, the noble Baroness, Lady Northover, assured the House that all the neurological and specialist conditions would have “equal priority” under the new NHS commissioning arrangements, and that this would mean that the Cinderella conditions should be improved. Can the noble Baroness outline the steps that the Government are taking to ensure that the commissioning arrangements provide appropriate and adequate specialist care for patients suffering from illnesses such as CFS and ME which are not easily classified under normal commissioning arrangements? To help this, will the Government give CCGs guidance on which illnesses should qualify under special commissioning arrangements? Can she reassure us that this guidance will include ensuring that guided exercise training is provided by qualified and trained specialist therapists?