Hosted by the South West CFS/ME Clinical Network Co-ordinating Centre

This important event will hopefully be one of many over the coming years as dedicated services are introduced nationwide. Key people working in the field of CFS/ME spoke to a large audience and included:

Dr Hazel O’Dowd – Clinical Psychologist and CFS/ME Champion

Described a randomised control trial to assess the efficacy of a group treatment programme for individuals with CFS/ME and compared this with an education/support group and those receiving standard medical care. The positive effects of the study will be considered in the light of current research. The limitations of the work and its implications for health service delivery were also discussed.

Dr Peter White – Director of CFS Services St Bart’s London

Gave a description of the PACE Trial – a trial that will compare the efficacy, adverse effects and cost effectiveness of Pacing, Cognitive Behaviour Therapy and Graded Exercise Therapy. All three treatments have been recommended in the Chief Medical Officer Working Party Report – but none is recommended above the other. Some CBT and GET therapies appear to be beneficial in small trials – no similar study has been carried out on Pacing. This trial will cover a five-year period and will not report before 2009.

Dr Derek Pheby – Epidemiologist

This presentation covered; the role of epidemiology, its incidence, prevalence and pattern of severity. Utilising the growth in local services, the use of epidemiological methods that could be used to determine which management approaches are most effective. A planned National ME Observatory to co-ordinate epidemiological and social research.

Dr Diane Cox – Occupational Therapist Senior Lecturer on CFS/ME

Spoke of lifestyle management and CFS/ME. She outlined treatment sessions to: familiarise the patient with the rationale for intervention, start to establish a baseline for activity, gain an understanding of the importance of balancing rest and effort, and the process of re-introduction of activity over time. She explained the importance of a thorough understanding of the lifestyle changes required, by gaining knowledge of the strategies that change behaviour, attitudes and beliefs about CFS/ME.

Peter Gladwell – Specialist Physiotherapist Bristol

Gave an overview of his work with patients including graded exercise and graded activity. He wanted to put to bed the vision of the “Physio-Terrorist” approach, that it was not intended to push patients through the pain for results. He talked of involving patients in looking at activity levels, good and bad days, boom and bust days, and when if you feel a little better you step up the action, which then increases the symptoms and leads to relapses and prolonged recovery periods. He was clear that it was a partnership approach to judging “acceptable” levels of activity, but the patient knows best in judging increase in symptoms.

Over 120 people attended on the day therapists, nurses, clinicians and patients. There was a real buzz of interest, lots of information sharing and a genuine feeling that things are looking up for ME and that the new services will be a major step up in caring for and managing people with ME.

NB: ME North East put up a poster display promoting our Clinical Services Framework – lots of interest and all 500 copies were snapped up.