NICE CFS/ME guideline: AYME press release

The Association of Young People with ME (AYME) issued this press release, yesterday.  The full guideline is being analysed by AYME’s Chief Executive Officer and a commentary is to be published in due course on the AYME website.

NICE press release   
22nd August 2007

The largest ME/CFS children’s charity welcomes today’s publication of the NICE Guidelines which will provide leverage for more services to be offered to patients.

Today it’s estimated that only one in ten children in England receives treatment for ME/CFS. The Association of Young People with ME (AYME) says the guidelines now put the onus on Primary Care Trusts to provide quality services administered by professionals with experience of ME/CFS.

“If the NICE guidelines are undermined and discounted, PCTs can use this as a reason not to provide the funding that is so desperately needed. Patient services will disappear or remain non-existent,” said Chief Executive of the Association of Young People with ME, Mary-Jane Willows.

ME/CFS services have already disappeared from Hertfordshire and London’s St Thomas Hospital because funding was withdrawn. Other services across the country are also facing budget cuts.

“We will be doing patients a great disservice if we don’t support these guidelines,” added Mrs Willows. “By their nature, consensus documents will not suit everyone. But if the guidelines are used in a positive way they will help us to retain existing ME/CFS services, without which thousands of newly diagnosed patients would go undiagnosed and untreated. This is the problem that has plagued the ME/CFS community to date.”

For more information or to speak to a young person with ME/CFS call the AYME Press Office on 01908 379737 or 07977 060 553 or 0781 6989 067.

Notes to Editors

AYME (pronounced aim) stands for the Association of Young People with ME.

It is a national, award-winning registered charity dedicated to providing support and information to the estimated 25,000 young people living with ME/CFS in the UK and their families. Membership is free for children and young people with ME aged 5 to 25 years.

How did it begin? AYME began ten years ago as a grass-roots self-help support group and today has grown into the largest ME children’s charity in the UK with over 70 services run by 300 member volunteers who are young people with ME/CFS, building confidence and skills and the opportunity to lead a fulfilling life when they recover.