A recent survey run by the Sussex & Kent ME/CFS Society working with the Brighton & Sussex medical School amongst people in the counties affected by the Chronic Fatigue Syndrome known as ME has clearly found that Pacing can help most with the debilitating illness. 457 completed questionnaires have been analyzed showing that a massive 94% of respondents said that they found the management approach of Pacing to be reasonably or very helpful. Pacing is all about balancing activity and rest to bring about improvements in the way the patient feels. The word ‘activity’ is used in a broad sense, to include mental and emotional activity, as well as the more obvious physical sort. Taking a balanced, steady approach to activity counteracts the common tendency to overdo things. It avoids the inevitable ill effects that follow. Pacing gives people awareness of their own limitations which enables them to plan in a positive way how to use energy, maximizing what they can do with it. Over time, when the condition stabilizes, patients can very gradually increase activities to work towards recovery. Colin Barton of the ME Society said “Although ME can be a long term seriously disabling illness for many people there is much that can be done to help patients make improvements as our survey clearly shows” “We have a booklet available that explains what Pacing is and how to manage the illness working towards recovery.”

Celia Barlow MP for Hove and patron to the Sussex & Kent ME/CFS society “To ask the Secretary of State for Health if his Department will consider the merits of inclusion of the therapeutic strategy of pacing as part of the treatment packages offered by specialist chronic fatigue syndrome/myalgic encephalopathy services.” Ann Keen (Parliamentary Under-Secretary, Department of Health). “It is the responsibility of health professionals, working in conjunction with the wishes of individual patients, to use their clinical judgment to decide on the most appropriate treatment package for those living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Detailed guidelines on the treatment and diagnosis of CFS/ME were published by the National Institute for Health and Clinical Excellence in August 2007”.

After consulting with our medical advisors we should be aware that, whilst very interesting and encouraging, these findings do need to be replicated in other laboratories. This is not the first time that a retrovirus has been suggested to play a major part in ME/CFS, and before it was sadly found to be a false dawn. We also need to be aware that, even if an association is confirmed, we don't yet know if it is a cause or a consequence of ME/CFS. It would be premature to think about tests and treatments until we know very much more. On the other hand, this finding will encourage more biomedical research that will increase our understanding of ME/CFS. The message from our advisors is that, although this is a very interesting advance, we should not get too excited about this until we know more.

Hove MP, Celia Barlow has written to the Primary Care Trusts of Sussex asking what plans they have to financially support the development of NHS services for ME in the county. The specialist service based in Burgess Hill that was established in 2005 has dealt with approaching 2,000 referrals and has been rated highly in a recent survey conducted by the Sussex ME/CFS Society amongst those that have attended the clinics but urgently needs to expand. The service that operates at three sites across the county comprises of specialist doctors and therapists that provide confirmation diagnosis, symptom control advice for GPs and appropriate management plans for patients that can often be helped by Pacing and other approaches. Colin Barton of the ME Society says “The NHS team are doing an admirable job with the limited resources and tools at their disposal but further funding is urgently required for the service to expand enabling a waiting list of patients in need of diagnosis and care to be dealt with. Dr Michael Broughton, lead clinician at the Sussex-wide CFS/ME Service while commenting on the survey finding said: "The preliminary results of this comprehensive survey support the view that a wide variety of approaches can be very helpful in managing CFS/ME. It is particularly pleasing to see how the concept of Pacing seems to help such a large number of patients. The NHS Sussex CFS/ME Team supports a evidence-based, holistic approach in managing this illness and we are pleased that the survey reveals a good level of patient satisfaction with our service. We are constantly striving to improve results and reduce waiting times for treatment and there has been major progress since April 2005 when we first opened and were inundated with referrals. It remains disappointing that although we have had excellent support from Brighton, other Primary Care Trusts have yet to fully commit to proper funding of the service" Celia Barlow says: 'Many of my constituents have contacted me about the problems that they have encountered as an ME sufferer.  I have been a frequent attendee of the All Party Parliamentary Group and I am very proud of all the work that Colin Barton and the Sussex ME Society have been doing to improve the lives of those with ME.'