It is estimated that there are over 250,000 people in England and Wales with ME / CFS, with around 2.4 times more women affected than men.
The guideline covers all aspects of ME / CFS in children, youth and adults, from its identification and evaluation before and after diagnosis to its management, follow-up and examination.
Paul Chrisp, director of the Center for Guidelines at NICE, said: âIn addition to bringing together the best scientific evidence available, we have also listened to the real and lived experience and testimony of people with ME / CFS to produce a balanced guideline that has their well-being at heart. NICE hopes system partners and the ME / CFS community will work together to ensure that these important recommendations are implemented.
Peter Barry, Consultant Clinical Advisor for NICE and Chair of the Guidelines Committee, said: âThis guideline will provide clear support to people living with ME / CFS, their families and caregivers, as well as clinicians. He recognizes that ME / CFS is a complex and chronic medical condition that can have a significant effect on the quality of people’s lives.
âWe know that people with ME / CFS have had difficulty getting their disease recognized, and the guideline provides guidance for suspecting and diagnosing the disease, recognizing that there is no specific test for it. . The directive stresses the importance of a personalized management plan for areas such as energy management – including the importance of rest and staying within the individual’s energy limits – treating symptoms specific advice and advice on managing flare-ups and exacerbations. “
The guideline identifies symptoms of ME / CFS as debilitating fatigue that is worsened by activity, post-exercise discomfort, non-restorative sleep or sleep disturbances, and cognitive difficulties (“brain fog”) . It states that people with the 4 symptoms that have lasted 3 months or more should be referred to a team of ME / CFS specialists (in the case of children, this should be a team of pediatric specialists) experienced and trained in ME / CFS management to confirm their diagnosis and develop a personalized holistic management plan in line with this guideline.
People with ME / CFS should receive personalized support focused on agreed personal goals and a range of approaches should be used depending on the patient’s preferences and priorities.
And the guideline makes it clear that any program based on fixed incremental increases in physical activity or exercise, such as Graduated Exercise Therapy (GET), should not be offered for the treatment of ME. / SFC. Discussions with stakeholders have shown that the term ‘GET’ is understood in different ways and that the Directive clearly defines what this term means.
The importance of ensuring that people stay within their energy limits when undertaking activities of any kind is also emphasized. The guideline recommends that any physical activity or exercise program should only be considered for people with ME / CFS in specific circumstances and that it begins with establishing the person’s capacity for physical activity at a specific level. level that does not worsen its symptoms. It also states that a physical activity or exercise program should only be offered on the basis that it is delivered or supervised by a physiotherapist in a team of ME / CFS specialists and that it is regularly reviewed.
Although cognitive behavioral therapy (CBT) has sometimes been viewed as a cure for ME / CFS, the guideline recommends that it be offered only to help people living with ME / CFS manage their symptoms. , improve their functioning and reduce the associated distress. with chronic disease.
Baroness Finlay, consultant in palliative medicine, clinical manager for palliative care in Wales, Velindre NHS Trust, and vice chair of the guidelines committee, said: âME / CFS is a complex, long-term disease that causes disordered energy metabolism and can be profoundly disabling. People with ME / CFS need to be listened to, understood and supported to adapt their lives. The committee members involved in this guideline have worked especially hard to ensure that care becomes more empathetic and needs-oriented.