Guidelines on Diagnosis and Management of CFS/ME

The National Institute for Clinical Excellence (NICE) was established as a Special Health Authority in April 1999. It is the independent organisation responsible for providing national guidance on treatments and care for people using the NHS in England and Wales.

On 23rd February 2004 Lord Warner – Health Minister announced plans to develop clinical guidelines on the diagnosis and management of CFS/ME. He stated “This guidance will be patient centred, involving patients, carers and experienced health professionals. A further step in the strategy to improve care of people with ME”.

We recognise early diagnosis is instrumental in preventing people with ME deteriorating into severe long-term ill health. A recent survey by the 25% Group showed 33% of patients were undiagnosed for 18 months. We want to see guidelines that highlight good practice, that are flexible, and based on mutual agreement between doctor and patient. We also want to see guidance concerning the harmful effects of CBT and GET. We have information on small trials that have proved helpful for some (usually the less severely affected), it is essential that we see both sides.

Whilst this arrangement is welcome news we need to be aware that guidance will take at least two years to draft – time at least for all with an interest in ME to get the patients message across. Further information about the clinical guidelines, including a detailed timetable will be published on the NICE website:www.nice.org.uk as soon as it is available. We will update members in our next newsletter.