Top 10 takeaways from the updated NICE guideline

Today’s publication of the updated NICE guideline on ME/CFS marks a significant step in the acceptance of ME as a physical illness and the recognition of appropriate treatments for people affected by the condition. There are marked changes from the previous version in how people are to be diagnosed and what treatments can be offered. Here are our top ten takeaways from the new guideline.

  1. ME/CFS (and not CFS/ME as in the previous 2007 version) can now be diagnosed in a child, young person or adult who has exhibited the requisite symptoms after 3 months, rather than after 4 months in an adult and 3 months in a child as before.
  2. ME/CFS can be suspected and advice given about managing symptoms after 6 weeks in adults and 4 weeks in children and young adults.
  3. New criteria have been introduced to diagnose the illness:
    • The patient must have all of the following persistent symptoms for a minimum of 6 weeks in adults and 4 weeks in children and young people:
      • 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 often delayed in onset by hours or days − is disproportionate to the activity − has a prolonged recovery time that may last hours, days, weeks or longer.
      • Unrefreshing sleep or sleep disturbance (or both), which may include
        • feeling exhausted, feeling flu-like and stiff on waking,
        • broken or shallow sleep, altered sleep pattern or hypersomnia.
      • Cognitive difficulties (sometimes described as ‘brain fog’), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking. AND
    • The patient’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.
  4. Acknowledgment that ME/CFS symptoms can be managed but there is currently no cure (non-pharmacological or pharmacological) for ME/CFS.
  5. Clinicians not to offer people with ME/CFS:
    • Any therapy based on physical activity or exercise as a cure for ME/CFS.
    • Any generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses.
    • Any programme that does not follow the general guideline approach to exercise or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (GET).
    • Any physical activity or exercise programmes that are based on deconditioning and exercise intolerance theories as perpetuating ME/CFS.
    • Advice to undertake exercise that is not part of a programme overseen by an ME/CFS specialist team, such as to go to the gym or exercise more, because this may worsen symptoms.
  6. Clinicians to tell people about the risks and benefits of physical activity and exercise programmes and to explain that some people with ME/CFS have found that they can make their symptoms worse, for some people it makes no difference and others find them helpful.
  7. Clinicians not to offer any medicines or supplements to cure ME/CFS.
  8. Clinicians not to offer people with ME/CFS the Lightning Process, or therapies based on it.
  9. Discuss cognitive behavioural therapy (CBT) with adults, children and young people with ME/CFS (and their parents or carers, as appropriate). 
    • Explain its principles, including that it may help them manage their symptoms but it is not curative and any potential benefits and risks.
    • Only offer CBT to adults, children and young people with ME/CFS if, after discussing it, they would like to use it to support them in managing their symptoms.
    • Explain that CBT for people with ME/CFS:
      • aims to improve their quality of life, including functioning, and reduce the distress associated with having a chronic illness,
      • does not assume people have ‘abnormal’ illness beliefs and behaviours as an underlying cause of their ME/CFS, but recognises that thoughts, feelings, behaviours and physiology interact with each other. 
  10. Recognition that people with ME/CFS, particularly those with severe or very severe ME/CFS, are at risk of their symptoms being confused with signs of abuse or neglect and that the following are not necessarily signs of abuse or neglect in children and young people with confirmed or suspected ME/CFS:
    • Physical symptoms that do not fit a commonly recognised illness pattern.
    • More than 1 child or family member having ME/CFS.
    • Disagreeing with, declining or withdrawing from any part of their care and support plan, either by them or by their parents or carers on their behalf.
    • Parents or carers acting as advocates and communicating on their behalf.
    • Reduced or non-attendance at school.

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