The Sussex ME /CFS Society that looks after many of the 6,000 people affected by the Chronic Fatigue Syndrome – ME across Sussex has produced a new information sheet about the illness for those that think they may have it.

The basic information sheet covers Symptoms and Diagnosis, Cause along with Prevalence, Treatment and Prognosis and avoids using any of the names that have previously been given to the illness as the Society feels that none of them is very satisfactory. The society mostly uses the compromise term ME/CFS that both the Chief Medical Officer’s report did in 2002 and recently the National Institute for Health and Clinical Excellence (NICE) have in their guidelines. “The most important thing is that the illness is fully recognised and those that have it are treated seriously and given the best of treatments available as they choose.” Says chairman Colin Barton.

“We are fortunate in Sussex as most doctors recognise ME as a serious illness and do their best to treat and support their patients. There is also a specialist NHS service for ME operational in Sussex that has dealt with nearly 1,700 referrals since it was set up in 2005. A very good service for youngsters with the illness at Brighton’s Royal Alexandra Hospital led by a specialist paediatrician is also keeping busy.”

Copies of the information sheet written by leading expert Prof Anthony Pinching are available free of charge by contacting 01273 674828.

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Sussex Argus 12th December 2008

“ Health bosses are taking steps to improve care for ME patients in the wake of the tragic death of Lynn Gilderdale.

The Primary Care Trusts responsible for East Sussex, where Miss Gilderdale lived and had spent 17 years bedridden as she struggled with the condition, have pledged a number of improvements.

They have taken action in part in response to lobbying from the Sussex ME/CFS Society and Brighton Pavilion MP David Lepper who have called for improvements in treatment for the controversial condition.

Colin Barton, chairman of the society, said East Sussex had been slow to make improvements by comparison with neighbouring West Sussex and Brighton and Hove which have been increasing spending.

Critics have accused the trusts of not taking the controversial illness seriously enough.

A joint statement by East Sussex Down and Weald PCT and Hastings and Rother PCT said they are supporting a dedicated county-wide service and are working with a consultant paediatrician at the Brighton and Sussex University Hospitals Trust to develop a service especially for children and young people with ME/CFS.

The PCTs said they already provided support to patients through GPs and a community services team. )Mr Lepper has written to the PCTs calling on them to ensure ME patients are seen within 18 weeks.

Mr Barton said: “In the past the PCTs have seemed reluctant to dedicate money towards these services. They have certainly improved but it has been slow, particularly in East Sussex.”

Miss Gilderdale was a prominent campaigner for improvements to ME care who suffered chronically from the condition.

She was found dead at her home in Stonegate, near Heathfield, on Thursday last week.

Her mother Kay Gilderdale was arrested and bailed on suspicion of murder following allegations of a mercy killing.

She had been the full-time carer for her daughter since she contracted the condition at 14.

Sussex Police yesterday said it was continuing its investigation.

DCI Andy Griffiths said he was awaiting post mortem results but they were likely to take weeks not days, as had previously been reported. “

The recent tragic death of Lynn Gilderdale has again highlighted how severely ME can affect a minority with the illness. The Gilderdale family who have always been supportive of our organisation have taken part in many awareness campaigns and fundraising activities over the years including a Silver Fish fundraising project co-ordinated by Richard Gilderdale’s colleagues in the Sussex police force. We remember also a number of us along with Richard attending a celebrity golf day in Surrey a few years ago. Lynn and her mother Kay were always willing to help highlight how things are for the very severely affected.

We now have a Condolences page for Lynn, click here.