Regional CFS/ME Conference -

Northern CFS/ME Clinical Network

130 delegates attended the 2nd Annual Conference of the northern CFS/ME clinical network. Those attending included: Consultants in Paediatrics, General Medicine, Psychology and Psychiatry, GP's, Nurses, Physiotherapists and Occupational therapists, together with a small number of social workers and education providers.

Jill Mitchell, Head of Commissioning for North of Tyne welcomed everyone and said it was a privilege to support the CFS/ME network, and applauded the success of the work both of the network and the local multi-disciplinary teams across the region. Over 600 patients have now been seen within the four CFS/ME services, and everyone involved in making this happen has invested a massive amount of enthusiasm and dedication to develop this successful service from scratch, noting just how far we have come in a relatively short space of time.

A packed programme began with Dr Gavin Spickett, Clinical Champion for CFS/ME, speaking on the diagnosis and management of CFS/ME and the impact of the NICE guidelines published in August 2007.

Dr Spickett has been seeing patients with CFS/ME for many years and has played an important and lead role in the development of services in the Northern region.

A scoping exercise to form the basis of services needed for the management of CFS/ME in children and young people is being led by Dr Esther Crawley (Consultant Paediatrician and Clinical Champion for the CFS/ME National Collaborative). Dr Caroline Grayson is taking the lead to develop services in the northern region and she shared her vision of services, with early intervention and graded rehabilitation the key to improved prognosis and recovery. To accommodate the suspected numbers of young people with CFS/ME (estimated at around 4,000) she also felt that to deliver a good service would require a number of paediatricians working together across the region.

The four Local Multi-Disciplinary Teams (North Cumbria, North of Tyne, Durham & Darlington and South of Tyne) gave descriptive outlines of the models of care they have each developed. Of particular interest was the service user experience (from South of Tyne) clearly highlighting the benefits of her personal experience and the support received to help her manage the illness and improve her quality of life.

The afternoon brought interesting presentations of mindfulness and acceptance concepts for managing CFS/ME, and the need for clarity with the problems of differential diagnosis looking more closely at depression and anxiety as a result of living with a chronic illness and as an illness in its own right.

Dr Julian Newton, Senior Lecturer in the Institute of Cellular Medicine, Newcastle University, and leading researcher in CFS/ME studies at the RVI Newcastle, gave an interesting update on her own and the Newcastle research team studies. Ongoing research is presently funded by ME Research UK and the Northern CFS/ME Clinical Network. Julia's presentation focussed on the physiological changes that occur when humans stand and how the autonomic nervous system responses to assuming the upright position may be impaired in those with CFS/ME.

Dr Keith Linsley, Consultant Psychiatrist and lead for the Durham & Darlington CFS/ME team completed the programme with a revealing piece of local research in Durham investigating the cost of undiagnosed CFS/ME. Highlighting the revolving door patients, the number and range of consultant referrals, and the variety of tests and investigations carried out. His presentation clearly demonstrated that investing increased resources to develop local teams allowing early intervention and management, would not only relieve the stress and unnecessary investigations for the patients, but also make financial savings to the NHS.

Three separate workshops focussing on CBT and CFS/ME ran parallel to the main programme throughout the day. Led by Dr Steve Moorhead, Dr Angela Kelly and Dr Vivien Twaddle. Recognising CBT is not the panacea for all, but can prove beneficial in the management of CFS/ME (and other chronic conditions). Dr Twaddle wanted to demonstrate the benefits of CBT whilst at the same time recognising that for some CFS/ME patients it may not be appropriate. All three workshops were fully subscribed the third session being a master class for those CBT specialists presently working with CFS/ME patients.

Dr Gavin Spickett closed the day thanking everyone who had participated in making it such a success. 130 delegates, all service providers, were able to benefit from the event, and a waiting list of over 40 unsuccessful applications gives an indication of the improved recognition for CFS/ME.

He told the audience we must strive to develop and expand the care and treatment for this illness, we must secure specialist services for children and young people, and we must also address the need for the most vulnerable, the severely affected CFS/ME patients, who presently are not receiving the care they need to help them improve their quality of life. He recommended the services of ME North East to all service providers for information and advocacy. He made particular mention of the value of Sheila Carruthers’ work supporting young people and their families. He also thanked Jill Mitchell for her support as commissioner of services.

Jennifer Elliott