Revision of NICE Guideline on ME/CFS – latest state of play | 21 January 2013

January 21, 2013

At the beginning of January, The ME Association wrote to NICE (National Institute for Clinical Excellence) to ask for clarification on what was happening regarding the expected 2013 review of the NICE guideline on ME/CFS.

The following reply was received this morning:

Dear Dr. Shepherd,

NICE's Senior Management Team, with the approval of the NICE Board, has currently suspended the routine review of the need to update clinical guidelines 3 years after their publication. This suspension is from January 2013. A new process for reviewing and updating guidelines is being developed and we will be considering the timing and process of reviews and developing a process for faster more responsive updates of our guidelines. Our aim is to enable us to consider new evidence more frequently and to update aspects of guidelines more rapidly. A new process for both reviews and updates is being developed which we will be rolling out during 2013/14.

A comprehensive review is also being undertaken of our entire portfolio and all guidelines will migrate onto the new timings for more frequent reviews during 2013/14. Once we have firmer detail about the new timings for reviews and updates we will notify stakeholders of the new review dates.

Please let me know if you have any further questions.

Best wishes,

Oliver Bailey
Project Manager – Centre for Clinical Practice
National Institute for Health and Clinical Excellence
10 Spring Gardens | London SW1A 2BU | Web:

The MEA is currently in the process of preparing all the data from their 2012 patient evidence survey on CBT, GET and Pacing into a report. We were intending to send this report to NICE as part of new patient evidence that would need to be considered in the ME/CFS guideline review process.

Consequently, Dr Shepherd has written back to NICE today to check on whether we must proceed on the basis that there is now some uncertainty as to whether the ME/CFS guideline will be reviewed in 2013

And with no real information as to how the new NICE guideline review process will operate in future it is impossible to assess what role stakeholders such as the ME/CFS charities will have in a review process that will clearly be much faster, and possibly more frequent, than the process it is replacing.

Our parliamentary colleagues on the All Party Parliamentary Group on ME have been informed about this development.

3 thoughts on “Revision of NICE Guideline on ME/CFS – latest state of play | 21 January 2013”

  1. The NICE guidelines have no scientific validity. The PACE trial was a complete failure. CBT and GET, as well as the other version of GET in the PACE trial (ATP) showed no objective benefit.

    It is clear that instead of allowing a review of the NICE guidelines, which would most certainly result in a removal of these “therapies”, NICE are attempting to alter the review process to favour them. Perhaps they are awaiting the NHS funded GETSET study from Peter White?

    Self-report surveys are no different to the PACE trial data and will never be viewed as relevant unless patients say CBT and GET work, which they never have agreed with.

    I view this as deliberate obstruction by NICE to remove CBT and GET.

  2. Ridiculous. They seem to acknowledge that the current situation is too slow and infrequent but will not carry out any reviews until they migrate to a new, as yet undesigned system. They hope this will be ready somewhere 2013/2014. This is absurd, why can’t they still carry out review while the new system is being planned?

    Will the new review system really be up and running by end of 2014 or will there be more bureaucratic delays (possibly involving a very expensive computer system which may never actually work). By the time they are up and running I have no doubt the data put forward by the MEA will be considered out of date.

  3. I forgot to add – why have they only just announced this? Surely they must have known that this review of their procedures was planned? Given the late stage of this announcement perhaps they would like to refund the MEA some of the money spent getting it’s data in order in time for a 2013 review?

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