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