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NICE guideline on CFS/M.E. must be reviewed

July 24, 2017

Action for M.E. has told the National Institute for Health and Care Excellence (NICE) that the guideline CFS/M.E.: diagnosis and management must be reviewed in full and updated.

NICE have proposed not updating the guideline, which recommends that patients are offered CBT and GET, based on their surveillance review of evidence published since 2007.

Our response to their consultation states:

  • there is not a conclusive evidence base for treatments for M.E., including those recommended in the guideline, such as cognitive behaviour therapy (CBT) and/or graded exercise therapy (GET).
  • the current evidence base has led major international health agencies, including the Centers for Disease Control and Prevention in the US, to alter their guidance regarding CBT and GET.
  • NICE has an ethical obligation to present a full, accurate and balanced picture of current international clinical practice when it comes to managing and treating M.E.

This decision would have serious implications for patients’ access to medical care. Retaining the 2007 guideline would mean that:

  • clinicians would not be informed of the inconclusive and disputed nature of the evidence on the effectiveness of CBT and GET
  • therefore patients will not have equal access to other healthcare that could benefit their health, such as pharmacological treatments or other symptom management approaches.

As part of its consultation, NICE asked for feedback on a proposal to remove the NICE guideline from its static list, and review it at more frequent two-year intervals. Action for M.E. support this decision, given that current and upcoming research may impact on NICE recommendations in the near future. Examples include ongoing research into an antiviral, valganciclovir, as well as a current phase-III trial into the immunosuppressant Rituximab.

As well as sending our own response, Action for M.E. collaborated with the Countess of Mar and other M.E. organisations as part of Forward M.E. to submit an agreed joint response. This highlights the ethical duty of NICE to respect patient choice and to ensure patients have access to biological medical care.