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.'

Working with the Brighton & Sussex Medical School the Sussex & Kent ME/CFS Society has been running a survey about the experiences over the last two years of those affected

by the Chronic Fatigue Syndrome – M.E. across the counties. This is the first professionally run comprehensive study of its type and the results will be seriously viewed by service

providers and users alike. The project is looking at which NHS and other services people are using and how helpful these services are to patients. The questionnaire also enquires

about which treatment approaches are being tried and how helpful those are. After informally analyzing 403 completed questionnaires so far received findings show that a number

of treatments and approaches are helping a lot of people affected by the debilitating illness and that most doctors are seen by ME/CFS patients as being helpful as are the NHS

centres in Burgess Hill and Maidstone. The majority, 54% of those that completed the questionnaire were moderately affected and unable to work and a further 17% virtually

housebound with a few confined to bed. Of those that have practiced the management approach of Pacing a massive 94% found it reasonably or very helpful. Treatments such

as specialist Cognitive Behavioural Therapy has helped 74% of those that have tried it and specialist pain medications have helped the majority prescribed them as have low doses

of antidepressants such as Lustral and Amitriptyline that can help some with sleep, mood and pain. Lifestyle courses run by the NHS centers and the Expert Patient Programmes

are helping a lot of people and alternative approaches such as Yoga, Nutrition, Acupuncture and Homeopathy along with the Lightning Process are rated highly by many patients

who have benefited from them. Colin Barton of the ME Society said “Although ME/CFS can be a long term seriously disabling illness for many people there is much that can be done to

help some patients make improvements as our survey clearly shows”.