The National Institute for Clinical Health and Excellence (NICE) commenced the process of developing clinical guidance for the diagnosis and management of CFS/ME in adults and children three years ago. Draft guidelines were produced and circulated for consultation in September 2006.
Many concerns were highlighted throughout the consultation period and a recent All Party Parliamentary Group on ME raised the following key points;

• the lack of recognition of the WHO definition of ME as a neurological illness
• the terminology used in the guidelines
• emphasis on cognitive behaviour therapy and graded exercise therapy as first choice, despite patients’ evidence that they are not always beneficial and in the case of graded exercise may be potentially harmful
• lack of understanding of the needs of the severely affected
• need for the guideline to protect people with ME
• lack of recommendation that more biomedical research is needed
• nature of the consultation process in terms of accessibility for people with ME
• length of the guidelines, making them impractical for health professionals and inaccessible for people with ME

The ME community were relieved to hear the publication of the final document (due out this month) has been deferred until August 2007. A statement on the NICE website (www.nice.org.uk) reads “Due to the nature and volume of comments made during the consultation it has become apparent the original publication date will not be achievable.”

We are given to understand that such a delay is extremely uncommon. This formal document will provide the base for services for ME services for many years to come – let us hope that the final outcome will reflect the concerns of patients and be amended to satisfy the needs of ME.