Hove MP Celia Barlow is pressing Sussex Primary Care Trusts to give more financial support to local services for ME patients.

Celia who is patron to the Sussex ME Society has again written to the PCTs asking what plans they have to assist the specialist service based in Mid Sussex to develop enabling it to deal more effectively with a waiting list of people requiring confirmation diagnosis and specialist management. The service also needs to be able to provide more domiciliary assessments for those that are severely affected and cannot travel.

The popular NHS service was set up in 2005 following work carried out by a group of Sussex PCT officers and the Sussex ME Society and has had over 2,000 referrals. The multidisciplinary team consists of two specialist doctors along with three physiotherapists, one psychologist and three occupational therapists that deal with referrals at three sites across the county.

Celia says: “The hard working Mid Sussex team are doing an admirable job considering the limited tools and resources at their disposal but urgently needs to be financially supported by the local PCTs.” “Some PCTs have been more helpful than others in this regard”

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.