In December 2012 the
NICE Board agreed that a new programme for reviewing clinical guidelines
should be developed.
As part of that proposal NICE decided to create a
list of candidates to put on a static list to ensure sustainability and
efficiency of the programme.
In August 2013 NICE’s Senior Management
Team (SMT) agreed the first list of candidate topics for stakeholder
This included CFS/ME.
NICE recently contacted
registered stakeholders requesting comments the NICE decision to
transfer 27 clinical guidelines onto a static list  and .
requested to be returned 5pm on 23rd
The original NICE guidelines were almost unanimously rejected by patient
review was initiated in 2010
original NICE CFS/ME guideline put forward a psychosocial model for ME
and promoted CBT and GET as the options for management. The
biological model with evidence of inflammatory, immune, oxidative and
nitrostative pathways as key areas was ignored. This was heavily criticised .
The AGREE Instrument (Appraisal of Guidelines
Research and Evaluation Instrument) with which NICE is obliged to comply
in the formulation of all its Guidelines is specific: “The health
benefits, side effects and risks should be considered when formulating
NICE failed to conform to the AGREE
Instrument which requires that NICE is obliged to give equal weight to
three main sources of data: “evidence-based” medicine, usually deemed to
be random controlled trials (RCTs); the opinion and experience of
physicians with expertise in the area, and the opinion and experience of
the patient group for whom the Guideline is intended.
NICE did not abide by the European AGREE standards which govern
IiME rejected the
original NICE guidelines as unfit .
a review in 2010.
again urge NICE to initiate a complete review of guidelines for ME.
have previously exhibited a poverty of intent and reason with regard to
Although we doubt whether NICE will change its attitude (NICE
has shown scant regard in the past to the concerns of ME patients and
their families) we have nevertheless used
the opportunity to draw attention to the following points -
IiME concluded that the basis of the NICE Guidelines was in viewing as broad a section of fatigue states as possible, where high quality biomedical research into ME was ignored. Essential research showing the multi-system nature of ME was not considered or discussed.
original guidelines were unfit.
The prevalence figures used by NICE are at odds with recently
announced prevalence figures used by the MRC collaborative and
recently NIHR-funded research - with a difference of over 100%. This
means we have an epidemic of ME or the NICE figures are completely
wrong, or the MRC collaborative figures are completely wrong
To leave the current outdated and unusable NICE guidelines for ME for another 5 years with no updates reflecting the current poor education regarding ME and without any knowledge of the biomedical research performed/about to be performed, would effectively mean that no clinical guidelines for ME will have been reviewed for 12 years.
That is unacceptable.
response was sent in on 23rd October 2013  using the required NICE
submission is available here -
February 2014 Update:
In February 2014 NICE published their
responses. These can be viewed here
The responses to Invest in ME's comments
are from page 95 onwards.
We find the NICE comments both
meaningless, inaccurate but also pre-determined.
NICE claims to be "transparent in its development, consistent, reliable and based on a rigorous development process".
For ME we feel NICE fails in these aims
and falls short of an organisation whose role patients' futures.
When such a body mismanages its
obligations and ignores patients then it is surely time for it to be
changed or removed.