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Updated NICE guideline: recommendations for research

While the updated NICE guideline on ME/CFS is focused on the diagnosis and management of the illness, it acknowledges that there is still much to learn about it, and therefore makes some useful recommendations for research.

These recommendations largely relate to the effectiveness of diagnostic tests and criteria, and the use of health-outcome measures in trials of treatments.

The 2021 guideline recommendations are far more focused on the patient than before, and seek to lay the groundwork not only for future validation of tests and treatments, but also on seeking standards to evaluate coping strategies.

As a research charity, we would also highlight how important it is to investigate more fundamental questions about ME/CFS – the causes of the illness, its consequences, and how best to treat the symptoms and ultimately provide a cure. Commissioning and funding this research is our ongoing aim.

NICE’s key recommendations for research

  1. Diagnostic tests
    What diagnostic tests are clinically and cost effective in people with suspected ME/CFS? Effective tests will facilitate early diagnosis and potentially lead to better outcomes for people with ME/CFS.
  2. A core outcome set
    What core set of relevant health outcome measures should be used for trials of treatments for ME/CFS and managing symptoms of ME/CFS? The use of core outcome sets would enable the direct comparison of treatments for ME/CFS and symptom management, and shape and optimise ME/CFS trial design.
  3. Diagnostic criteria
    In people with suspected ME/CFS, how effective is the NICE 2021 consensus-based diagnostic criteria in identifying people with ME/CFS? There are not currently any validated diagnostic criteria for ME/CFS, and this leads to confusion about which criteria to use.
  4. Self-monitoring management strategies
    What is the clinical and cost effectiveness of self-monitoring strategies and techniques in guiding energy management?
  5. Sleep management strategies
    What is the clinical and cost effectiveness of sleep management strategies in managing ME/CFS?
  6. Dietary strategies
    What is the clinical and cost effectiveness of dietary strategies in managing ME/CFS?