On August 22, 2007 the UK’s National Health Service (NHS) launched a clinical guideline titled “Chronic fatigue syndrome/Myalgic encephalomyelitis (or encephalopathy) – Diagnosis and management of CFS/ME in adults and children.” In effect, “Doubting doctors are ordered to take ME patients seriously,” stated a headline in the London Daily Mail (see “press clips” below), while some patient groups responded with calls for investment in further research to identify more beneficial therapies.
The new guideline was developed by the National Institute for Health and Clinical Excellence (NICE) to advise NHS clinicians on the appropriate treatment and care of people with CFS/ME. The guideline and all related resources are publicly available at the CFS/ME website http://www.nice.org.uk/CG53. These materials include:
n For professionals – The full guideline, appendixes citing supporting references, a “quick reference guide,” and links to tools for supporting local implementation and patient education.
The clearly written guideline includes general principles of care, presentation, diagnosis (including testing to rule out other disorders), general patient management strategies, referral to CFS/ME specialist, specialist care, management of setbacks, review and ongoing management, key principles of care for people with severe CFS/ME, and more.
n For patients, carers, and the public – an educational version including an explanation of CFS/ME, what to expect in their clinical diagnosis and management, and questions to ask. To quote the summary:
“This guideline is about the care of people with chronic fatigue syndrome, which is also called myalgic encephalomyelitis (or encephalopathy), in the NHS in England and Wales. Throughout this booklet we refer to the condition as CFS/ME for short. The booklet explains guidance (advice) from NICE (the National Institute for Health and Clinical Excellence). It is written for people with CFS/ME, and parents or carers of people with the condition. It may also be useful for other family members or for anyone with an interest in CFS/ME. The guideline aims to help you understand the care and treatment options that should be available in the NHS.”
All documents can be freely viewed, printed, or downloaded from the NHS site, or you may enquire about ordering hard copies by e-mail at firstname.lastname@example.org or by phone at 0870 155 5455
Early reports in the press issued in concert with the guideline’s unveiling include:
n “Doubting doctors are ordered to take ME patients seriously” – Daily Mail.
n “Treat ME more seriously, doctors ordered” – Telegraph.
n “New NICE Guideline to Improve Diagnosis and Management of Chronic Fatigue Syndrome in Adults and Children” (includes a summary of guideline recommendations) – Medical News Today.