Trial By Error: Current NICE Guidance Stands, For Now

By David Tuller, DrPH

Last week I sent an e-mail with some questions to Sir Andrew Dillon, the chief executive of the National Institute for Health and Care Excellence (NICE). In particular, the questions involved the status of the ten-year-old guidance for CFS/ME, CG53, and of references to the illness elsewhere within the NICE system.

A few days ago, I received Sir Andrew’s response. He indicated that the current guidance remains in effect while NICE undergoes the process of developing the updated version. Whether and how much the NICE recommendations actually change in the updated version is apparently up to the new guideline committee.

Here’s what Sir Andrew wrote:

The current guideline remains in force until it is replaced by the next version. The decision to update was based on the potential for the evidence published since the guideline was introduced, together with the views put forward by stakeholders to change the current recommendations. Whether that potential is realised is a matter for the new guideline committee to decide, as they apply our guideline development methods and undertake consultation with stakeholders. Other NICE guidance which refers to our CFS/ME recommendations will reviewed [sic] and amended if necessary once the new guideline has been published.

This was the response I expected, more or less, but it was still disappointing. NICE was remiss in the first place to accept Oxford-criteria studies, including the PACE trial, as legitimate science, given their obvious flaws. The agency has since outlined the reasons why the current guidance is not fit for purpose and needs a full update. Now it has an opportunity, and a moral obligation, really–to take a more proactive stance and alert patients to the concerns raised about these potentially harmful treatments.

If these concerns are truly being taken seriously by NICE, how can the agency stand fully behind CG53 in the interim? Can it really be ethical for NHS clinics and doctors to continue to prescribe CBT and GET based on the current guidance without mentioning that these treatments are up for review and have already been dis-endorsed by the U.S. Centers for Disease Control? Who will be liable for any harms arising from the recommendations going forward, now that NICE has acknowledged the problems?

Whether NICE recognizes it or not, the current guidance has already acquired something of a lame-duck status, especially given widespread international rejection of CBT and GET. Any further argument from the CBT/GET ideological brigades that their approach remains the accepted standard of care can now be readily refuted. And that’s bad news for the public and private disability insurance agencies that have long relied on the CBT/GET paradigm to reject legitimate claims for ME/CFS-related benefits.

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