Newly elected MP for Brighton Kemptown, Simon Kirby is showing his support for the Sussex & Kent ME/CFS Society by becoming a patron to the charity. Mr Kirby is meeting with the society’s committee to discuss how he can best work with then for the good of people affected by Myalgic Encephalopathy or Chronic Fatigue Syndrome in the area.

The organisation that has helped hundreds of people was founded 23 years ago and has enjoyed the support of a number of well known people over the years including Sir Andrew Bowden MBE who became their first patron in 1987 when he was MP for Brighton Kemptown

During ME Awareness time we are pleased to be able to report that a recent survey that we have run in Sussex and Kent shows that although ME can be a long term seriously disabling illness for some people there is much that can be done to help many patients make improvements.

Working with the Brighton & Sussex Medical School our organisation ran a survey about the experiences of those affected by Myalgic Encephalopathy or Chronic Fatigue Syndrome across the counties. This is the first professionally run comprehensive study of its type and the findings are being seriously viewed by service providers and users alike. The project looked at which NHS and other services people are using and how helpful these services are to patients. The questionnaire also enquired about which treatment approaches are being tried and how helpful those are. After analyzing nearly 500 completed questionnaires findings show that a number of approaches are helping a lot of people affected by the debilitating illness and that many doctors in the area are seen by ME patients as being helpful as is the Burgess Hill and Maidstone based NHS centers. Of those that have practiced the management approach of Pacing a massive 94% found it of some help 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 particular antidepressants 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. Alternative approaches such as Yoga, Nutrition, The Lightning Process, Acupuncture and Homeopathy are also rated highly by patients who have benefited from them.

The Sussex & Kent ME/CFS Society now has a private facebook page where members can share information and make contacts while being kept up to date with the latest local and national ME/CFS related news. This service is in addition to the popular Egroup that has been running for a number of years.

Press release issued by the Wellcome Trust - March 2010 A study published in the journal 'Retrovirology' has failed to find evidence of a link between chronic fatigue syndrome and a recently discovered virus.

Chronic fatigue syndrome - also known as myalgic encephalomyelitis (ME) - is estimated to affect around 250 000 people in the UK. It can be a debilitating condition, with symptoms including chronic, often severe, mental and physical exhaustion, muscle and joint pain and cognitive difficulties. The causes of chronic fatigue syndrome are unclear and the theories have often provoked controversy.

A 2009 study in the USA, led by Dr Vincent Lombardi at the Whittemore Peterson Institute for Neuro-Immune Diseases found evidence of a retrovirus known as XMRV in two-thirds of people with chronic fatigue syndrome compared to less than one in 20 controls. This strongly suggested a link between the virus and chronic fatigue syndrome.

However, in a study funded by the Medical Research Council (MRC), the Wellcome Trust and the CFS Research Foundation, researchers failed to replicate these earlier findings. This new study supports research published earlier this year in the journal 'PLoS One' which also failed to replicate Dr Lombardi's findings.

Researchers at the MRC National Institute for Medical Research and St George's University of London used a technique known as PCR to study 299 DNA samples from UK cohorts, including 142 samples from people with chronic fatigue syndrome. PCR is a highly sensitive method used to detect and amplify minute traces of DNA for analysis. Despite using a very sensitive PCR technique similar to that applied by Dr Lombardi and colleagues, the UK study failed to detect any traces of XMRV.

The researchers then analysed blood samples from this group and a further 28 samples from a second cohort (a total of 170 samples) to look for the presence of neutralising antibodies against XMRV. Detection of these antibodies would provide evidence of previous XMRV infection. Only one sample (less than 1 per cent) was able to neutralise XMRV. Although 25 out of 395 control samples (just over 6 per cent) were also able to neutralise the virus, in many cases, this seemed to be a broadly acting, non-specific response suggesting that serological studies may overestimate XMRV frequency.

Dr Kate Bishop, a Wellcome Trust Research Career Development Fellow who led the study, comments: "Our study failed to replicate the results of Dr Lombardi's study despite using what we believe to be a more sensitive test. We found no association between XMRV and chronic fatigue syndrome. However, chronic fatigue syndrome may encompass a spectrum of different conditions providing a possible explanation for this discrepancy.

"Chronic fatigue syndrome affects a large number of people and our findings are likely to be very disappointing to these patients, their families and their friends. It is important that we keep an open mind about new scientific discoveries which point to possible causes of this often very serious condition. Replication is an important part of the scientific method and, as the initial findings have not yet been replicated, I think it will be important to develop standardised samples and assays for XMRV that can be rapidly tested by different laboratories around the world."

Reference Groom HC et al. Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome. Retrovirology 2010;7(1):10.