The National Institute for Health and Clinical Excellence (NICE) launched its long-awaited guidance on the diagnosis and management of ME/CFS today.
The ME Association will be publishing our considered response in due course.
In the meantime, here is the NICE press release:
A new guideline to improve the diagnosis and management of chronic fatigue syndrome/ myalgic encephalomyelitis (or encephalopathy) (CFS/ME) in adults and children is launched today (22 August).
CFS/ME is a relatively common illness, affecting up to an estimated 193,000 people. The condition can be disabling, involving a complex range of symptoms, the most common being fatigue, but including headaches, sleep disturbance and muscle pain.
The National Institute for Health and Clinical Excellence (NICE) and the National Collaborating Centre for Primary Care have published a clinical guideline on how to effectively diagnose and manage CFS/ME in adults and children. The guideline provides recommendations to help diagnose and manage the condition, aimed at maintaining, and if possible, gradually extending an individual’s physical capacity. It also highlights the importance of shared decision-making between health professionals and people with CFS/ME, providing therapies suitable to the individual, and the individual’s right to refuse or withdraw from any part of their treatment plan without it affecting future care.
• If a child or young person under 18 years old has symptoms of possible CFS/ME they should be referred to a paediatrician within 6 weeks of first seeing their doctor about the symptoms.
• After other possible causes have been excluded, a CFS/ME diagnosis should be made after symptoms have persisted for 4 months in adults, and after 3 months in a child or young person (in consultation with a paediatrician).
• An individualised management plan should be developed with the person with CFS/ME and they are in charge of the aims and goals of the overall management plan.
• Health professionals should provide care in ways suitable for the individual, which may include providing some tests or treatments at home, or support and advice by telephone or email
• Clinicians should offer advice on managing activity, rest periods, sleep patterns, diet, equipment to help maintain independence like the blue badge, and advice on fitness to work or be in education
• People with CFS/ME should not be advised to simply ‘go the gym’ or exercise more’ as this may worsen symptoms
• Cognitive behavioural therapy and/or graded exercise therapy should be offered to people with mild or moderate CFS/ME and provided for those who choose it, as there is the clearest evidence of benefit for these approaches.
Andrew Dillon, Chief Executive at NICE and Executive Lead for the guideline, said: “CFS/ME is a relatively common illness, affecting up to an estimated 193,000 people. The condition can cause debilitating symptoms, impacting significantly on the lives of those with CFS/ME, and their families and carers. Until now there have been uncertainties about the diagnosis and management of this condition, but this new guideline will help health professionals make an accurate diagnosis, whilst considering other conditions that may be present. The evidence-based recommendations will also help improve the management of CFS/ME, including advice on ensuring patient-centred care, offering a choice of care options and tailoring therapies to suit the individual.”
Professor Richard Baker, Chair of the Guideline Development Group, GP and Head of the Department of Health Sciences at the University of Leicester, said: “Care for people with CFS/ME has varied widely, and in the worst cases, has left some people with the condition feeling that their illness isn’t recognised by the healthcare system. The publication of this CFS/ME guideline is an important opportunity to change the current situation for the better, helping both healthcare professionals and individuals by providing clear advice on how best to manage this disabling condition. The guideline sets standards for all health professionals on the best ways to provide care, drawing upon the expertise of a range of health professionals and patient representatives who understand the particular challenges of diagnosing and managing CFS/ME.”
Dr Esther Crawley, Guideline Development Group member and Consultant Paediatrician, said: “This guideline provides useful advice on how to diagnose children with suspected CFS/ME and makes it clearer when a child or young person should be referred to a specialist CFS/ME service. Although there’s no known drug to treat or cure the condition, clinicians can provide practical help to individuals such as advice on managing activity, rest periods, sleep patterns, diet, equipment to help maintain independence and advice and support with education. CFS/ME causes symptoms of varying severity, and can be very debilitating in children and young people. We frequently see children who are very severely affected and unable to get out of bed, so I am particularly pleased to see the recommendations for people with severe CFS/ME. This guideline should ensure that finally children, young people and adults who are severely affected, have their diagnosis and care supported by a CFS/ME specialist, and have access to treatment even if that means that the treatment is provided at home.”
Dr Frederick Nye, Guideline Development Group member and Infectious Disease Consultant Physician said “‘This guideline will help clinicians to diagnose CFS/ME accurately and promptly, so that effective management can be started as early as possible. Although the causes of the condition are still poorly understood, gentle progressive rehabilitation can prevent deterioration and promote recovery. CBT or graded exercise should be made available for patients with mild or moderately severe illness: both treatments have been shown in clinical trials to control symptoms and improve physical function. However, appropriate safeguards, a step-by-step approach, and a collaborative relationship between therapist and patient are all essential for success. Although all patients want to get better, none should be coerced into accepting any particular form of treatment. Management should always be underpinned by an ethos of joint decision making and informed choice.’"
Mrs Ute Elliot, Guideline Development Group member and patient representative, said: “CFS/ME has had a profound effect on my life, often robbing me of the energy to leave my home, and unable to do the simplest things like making a cup of tea. It’s important that doctors and other specialists understand how disabling CFS/ME can be, and why it’s vital that people with CFS/ME are treated as individuals as the condition affects each person differently. Based on my experiences with CFS/ME, I was pleased I could contribute my experience to the development of this guideline, and hope that it will improve the help available to people with CFS/ME and their carers."
For more information call Dr Tonya Gillis on 020 7067 5937 or email firstname.lastname@example.org.
Notes to Editors
About the guidance
1. The guidance is available at http://www.nice.org.uk/CG53 (from 22 August 2007)
2. The evidence suggests a population prevalence of at least 0.2– 0.4%, which means that a general practice with a population of 10,000 patients is likely to have at least 20–40 patients with CFS/ME. There is a lack of epidemiological data for England, so based on the suggested prevalence, up to an estimated 192,799 people have CFS/ME.
3. Background information:
• Some people have relatively mild symptoms and can still manage daily activities with additional rest, while others have a serious illness that severely affects their everyday lives and may be housebound. The pattern of a person’s symptoms, and their severity, can vary from day to day, or even in the same day.
• Most people with CFS/ME will improve over time, and the prognosis in children and young people is more optimistic.
4. NICE is the independent organisation responsible for providing national guidance on the promotion of good health and the prevention and treatment of ill health.
5. NICE produces guidance in three areas of health:
• public health – guidance on the promotion of good health and the prevention of ill health for those working in the NHS, local authorities and the wider public and voluntary sector
• health technologies – guidance on the use of new and existing medicines, treatments and procedures within the NHS
• clinical practice – guidance on the appropriate treatment and care of people with specific diseases and conditions within the NHS.