Ember
Senior Member
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Excerpt:
More...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...
IiME Comments
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....
We again urge NICE to initiate a complete review of guidelines for ME....
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.
The 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
- NICE exhibited a bias toward promoting a predetermined one-size fits all approach to ME by continually highlighting CBT and GET therapies despite widespread derision from ME patients.
- New research underway and planned to be completed in the next three years invalidates NICE's statement that no new research is expected to change their decision [7]
- To leave the current outdated and unusable NICE guidelines for ME for another 5 years with no updates reflecting the current poor education regarding ME and without any knowledge of the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.
IiME's response was sent in on 23rd October 2013 [2] using the required NICE pro-format....
- The PACE Trial has demonstrably proven that CBT and GET (the primary treatment recommendations of the NICE guidelines) do not work.
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....