NICE - DENY, DELAY and ACQUIESCE

In 2018 Invest in ME Research conducted prolonged correspondence with Professor Mark Baker, NICE Guidelines Director [1].

This was in relation to the need to review and correct NICE guidelines for ME and which, ultimately, would lead into a rewrite of the guidelines - the draft version of which was published on 10 November 2020.

In that correspondence the charity requested that NICE remove the recommendations for CBT and GET from the current guidelines for ME, which were created in 2007.

Professor Baker did not agree that these recommendations should be removed immediately and would wait until any review of the guidelines took place.

We persisted and then suggested that NICE should add an addendum to the existing guidelines to remove the recommendations, if they decided not to remove them completely.

Professor Baker did not agree but did state that this would be reviewed.

Nothing happened.

In November 2020, following the publication of the new draft guidelines for ME [2], Invest in ME Research wrote to the existing NICE Director for guidelines - Dr Paul Chrisp [3].

The draft guidelines have now called for the removal of GET as a recommendation - but leave in place the current recommendation for at least six months. This allows more harm to be done on vulnerable ME patients.

We again requested that CBT and GET were removed from existing guidelines pending the publication next year of the new guidelines.

Dr Chrisp declined to make this change [4].

Our view on this response are here [5].

Yet now we see that NICE have added an addendum - of sorts - [6] -

So, a success for Invest in ME Research's persistence - but rather a ridiculous half-way measure by NICE - demonstrating what IiMER has been stating for years - that NICE really are not willing to listen to patients fully or have the welfare of patients at heart.

This is not really sufficient.
It still leaves the recommendation for CBT in place - which we will not accept.