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.

Messages of support from around the world have been flooding in for Kay Gilderdale and her family through the Sussex & Kent ME/CFS Society’s website. Over 120 messages have been posted at the condolences page that was started up after many members of the charity expressed how they wanted to show support for the family but did not know how to do it without intruding during what has been an awful time for them. kay has read many of the messages posted and has written expressing the family’s appreciation and how they had gained strength from so many caring people from Sussex and beyond.

Mrs Gilderdale, from Stone Cross, near Heathfield, was cleared in court recently of the attempted murder of her daughter Lynn, 31, who she had cared for since she became bedridden with the condition aged 14. She had already admitted a charge of aiding and abetting her daughter’s suicide.

Comments on the website include one from Zelda, who wrote: “My heart goes out to you for all the suffering that you’ve been through. What you did must be seen as a great act of love, to relieve your lovely daughter’s unbearable suffering. I hope you find peace of mind and comfort now Lynn is at last at rest.”

Mrs Gilderdale appeared on the BBC’s Panorama: I Helped My Daughter To Die programme during February.

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”