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ME/CFS guidance from NICE seeks to improve awareness and understanding of condition

Rod Tucker
3 November, 2021  

Updated NICE ME/CFS guidance is designed to facilitate a greater awareness of the condition to ensure that is can be diagnosed earlier.

An updated guideline from NICE on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, ME/CFS, seeks to provide a clinicians with a better understanding of the condition, including its identification and assessment, management, monitoring and review. The terms “ME” and “CFS”, although used interchangeably, relate to the persistence of the symptom complex described below (suspecting ME/CFS). Although precise figures are not available, NICE suggests that there are over 250,000 people in England and Wales with ME/CFS and that the condition affects 2.4 times as many women as men.

The updated NICE guideline is designed to replace the original ME/CFS guidance from 2007.

Suspecting ME/CFS

NICE accepts the absence of a specific diagnostic test for ME/CFS and instead indicates that healthcare professionals should rely upon a clinical diagnosis where the following symptoms have persisted for a minimum of 6 weeks in adults and 4 weeks in children.

  • Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest
  • Post-exertional malaise after activity in which the worsening of symptoms, is is often delayed in onset by hours or days, is disproportionate to the activity and has a prolonged recovery time that may last hours, days, weeks or longer.
  • Un-refreshing sleep or sleep disturbance that may last hours, days, weeks or longer and might include feeling exhausted, feeling flu-like and stiff when walking.
  • Cognitive difficulties which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.

In addition to the above, NICE recommends that clinicians suspect ME/CFS where “a person’s ability to engage in occupational, educational, social or personal activities is significantly reduced from pre‑illness levels” and “symptoms are not explained by another condition.” The guidance adds that clinicians “diagnose ME/CFS in a child, young person or adult who has the [above] symptoms that have persisted for 3 months and are not explained by another condition.”

The updated guideline is extensive, covering areas such as assessment and support, the importance of multidisciplinary care, symptom management as well as the need for healthcare professional training. Perhaps one of the most important sections in the guideline is the recognition that previously, people with ME/CFS  “may have experienced prejudice and disbelief and could feel stigmatised by people (including family, friends, health and social care professionals, and teachers) who do not understand their illness.”

Management

With no cure currently available, the guideline focuses on supportive measures such as energy management, defined as a “self-management strategy that involves a person with ME/CFS managing their activities to stay within their energy limit, with support from a healthcare professional.” In addition, though NICE advises against the use of any medicines or supplements to cure ME/CFS, the is a recognition that “pharmacological interventions are however commonly used for symptomatic relief in people with ME/CFS, for example for pain and sleep, even though evidence from clinical trials in ME/CFS may be lacking.”

While cognitive behavioural therapy is mentioned, ‘the committee wanted to highlight that cognitive behavioural therapy (CBT) has sometimes been assumed to be a cure for ME/CFS. However, it should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness.”

In a summary of the potential value of the updated guideline, Baroness Finlay, Consultant in Palliative Medicine, Clinical Lead for Palliative Care for Wales, and vice-chair of the guideline committee, suggested that “those with ME/CFS need to be listened to, understood and supported to adapt their lives.” Adding how “the committee members involved in this guideline have worked particularly hard to ensure care becomes more empathetic and focused on the individual’s needs.”

Finally, commenting in a post for the ME Association, Dr Charles Shepherd, who was a member of the guideline committee, said that the updated guideline “should be widely welcomed by people with ME,” adding that “the next challenge involves educating and training all health professionals on how to diagnose and manage ME and setting up a full network of hospital-based referral services where GPs can refer for further help.”

Citation

NICE. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206]