Letter to NICE Management from Invest in ME Research

At this time we should be reporting on our response to the finalised NICE guidelines for ME - following their publication on the planned 18th August date.
Instead, despite having spent time and resource on reviewing the embargoed guidelines, we find ourselves reporting on the utter incompetence and mendacity of NICE and some establishment organisations that see no reason to put patients first, especially if it gets in the way of entrenched prejudice and long standing careers.

NICE "paused" the release of the final guideline a matter of hours before they were due to be published.

We immediately published this statement - https://www.investinme.org/IIMER-Statement-20210817-1.shtml

Though we saw nothing of great accomplishment in the final guidelines it was nevertheless a start in resetting the environment to reflect a more realistic picture.

People with ME in the UK are deservedly fed up with having had to endure establishment games for 14 years since the previous NICE guidelines for ME were published - fourteen years of the effects of flawed NICE guidelines, fourteen years and more of the MRC’s god-forsaken “expert” panels and barren and disingenuous collaboratives, fourteen years of UK CMO ignorance and apathy, and decades of entrenched views among royal colleges and institutes which had no basis in reality.

And it continues.

In disgust at the latest NICE incompetence we have written to the Director of NICE Guidelines Development and the CEO of NICE to demand release of the final version of the guidelines.
We have copied in also Sir Ed Davey, leader of the Liberal Democrats, the Shadow health secretary and the current minister of health.

Here below is our letter.
We do not expect a change to occur - but neither are we going to remain passive.

The behaviour of NICE is deplorable - and people with ME suffer. An urgent investigation is necessary.

Further References:

Last Update 19/08/2021