Category: NICE

When NICE becomes nasty

CFS, Chronic Illness, Disability Rights, Energy Limiting Chronic Illness, ME, NICE, NICE guidelines

The extraordinary decision of NICE not to publish the ME/CFS Guidelines is dangerous and quite disgraceful. They were due to be published on 18th August 2021, but without any reasoned explanation, that didn’t happen.

The draft guidelines, which were published on 10th November 2020, made some clear changes to the way that people with ME/CFS should be treated by healthcare professionals. They removed CBT as a ‘cure’ for ME/CFS and accepted that GET – graded exercise therapy – was not an appropriate treatment either. Both of these changes were welcomed by many patient groups and DPOs.

So, why were the guidelines not published? We can only speculate as to the true reason and that may not be a wise option from a legal perspective. We fear that undue influence has lead NICE into some very murky and nasty ethical waters.

What we do know is that copies of the guidelines have been sent out to a large number of recipients via 280 stakeholder groups, subject to confidentiality agreements which were due to expire on publication at 12.01am on 18 August, and that there has also been press reporting of the guideline. So the information is already in the public domain.

We call on those stakeholders and individuals to be open and accountable to the very people they seek to represent. You have a public duty to disclose and publish the full guidance, so that people with ME/CFS can have the knowledge they need to advocate for themselves.

  1. We call on NICE to publish immediately so that everyone can see what the current document says and understand what the argument is about. The public interest in knowing this is overwhelming and the current statement fails to address community concerns.
  2. In the absence of NICE doing this, call on stakeholders who have the document to publish en masse by agreement and at an agreed time in order to provide universal access. 

We would also urge all those who are affected by the failure of NICE to publish these guidelines to contact their MP. It is vital that this matter can be raised immediately when parliament begins its next session on 6th September. The ME Association have a great template letter you can use: https://bit.ly/3ktpBAz

Please also sign this petition:

https://www.change.org/p/the-national-institute-for-health-and-care-excellence-publish-the-nice-me-cfs-guideline-now