NICE Static

The NICE guidelines CG53 published in 2007 nice.org.uk/guidance/cg53 imediately met with resistance from the patient community and their advocates investinme.org/documents/PD... with an ongoing batle fought out over the ensuing years.

As the 2011 review date for CG53 approached NICE required positive results from the PACE trial after the spectacular failure of FINE was insufficient evidence for continuing treatments recommended in NICE guideline CG53.

Accepting without question PACE 2011 outcomes the next review was set for 2014 when NICE decided that placing guideline CG53 on the "static list" nice.org.uk/guidance/cg53/e... no automatic review for five years.

A childish response at having the guidelines challenged plosone.org/article/comment... I must let you make your own judgement on that.

If the PACE trial were retracted then the NICE guideline CG53 has no clothes leaving more than reputations of psychiatrists at risk of loosing supporting evidence.

Continuing the struggle against the NICE guideline CG53 forward-me.org.uk/15th%20Ju... it would appear responsibility for something kicked out into the long grass, now lays with Public Health England who will be busy elsewhere.

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  • Regardless of how often I see an end petition.parliament.uk/arch... I dare hope once more. When you've watched an old film for the umpteenth time and can hope against expectation for a happy ending this time.

    The PACE "Oxford" patient selection criteria are unscientific in that they rule out patients presenting with cardinal symptoms of ME and broadly include those with psychiatric symptoms therefore when researching CFS the results have no relevance for ME or the new conflation CFS/ME taken from separate World Health Organisation classifications:

    Myalgic Encephalomyelitis categorised by the WHO in ICD-10 section G93.3 and

    Chronic Fatigue categorised separately by the WHO in ICD-10 section F.48 psychiatric/idiopathic fatigue syndromes.

    Using research criteria for one then applying results as though they were one and the same has no evidence or scientific rigour that care guidelines compound this error will remain a grievance until NICE replaces the guidelines with biomedical treatment which is not harmful.

  • Occam's Razor

    "one should not increase, beyond what is necessary, the number of entities required to explain anything"

    The principle states that one should not make more assumptions than the minimum needed, this principle is often called the principle of parsimony it underlies all scientific modelling and theory building it requests us to choose from a set of otherwise equivalent models of a given phenomenon the simplest one.

    In any given model, Occam's razor helps us to remove those concepts, variables or constructs that are not really needed to explain the phenomenon.

    By doing that, developing the model will become much easier, and there is less chance of introducing inconsistencies, ambiguities and redundancies.

    Though the principle may seem rather trivial, it is essential for model building because of what is known as the "underdetermination of theories by data".

    For a given set of observations or data, there is always an infinite number of possible models explaining those same data. This is because a model normally represents an infinite number of possible cases, of which the observed cases are only a finite subset.

    The non-observed cases are inferred by postulating general rules covering both actual and potential observations

  • Reputations that have made prosperous careers are entrenched within our NHS altering guidelines is superficial change. When medical students have ME in their training we go beyond department of health saying yes ME is real and an NHS incapable of treating the most severe because there is no provision for the 25%

    who are severely affected. PACE, NICE and the NHS have not considered severe ME,

    our argument is not only for ourselves it must include all of the affected.

  • NHS service for most severe bmjopen.bmj.com/content/4/6...

  • The guidelines have largely been static since introduction with small cosmetic change at review.

  • Ignoring the organic nature of the illness is watching paint dry waiting and waiting.

  • Follow the USA lead by retiring the Oxford criteria used by NICE there are at least 10 others that define the disease with more accuracy.

  • NICE Guideline Development Group nice.org.uk/guidance/cg53/c... includes Ms Jessica Bavington who was in fact the primary author of the PACE Trial Graded Exercise Therapy manual and with Lucy Clark supervised the GET arm of the four arm PACE trial.

  • Well I did not know what a small world we have.Searched and found manual can be downloaded at wolfson.qmul.ac.uk/current-... GET treatment manual . Talk of heart rate monitors and pedometers has me hooked, thanks CheshireKatz

  • The Lancet paper shows twice as many serious adverse events (SAEs) in the GET group as in the other three groups but didn’t draw attention to the problem.

    This is in line with the surveys that have consistently found GET bad for patients:

    meassociation.org.uk/wp-con...

  • A drug trial would have been halted with the same level of serious adverse events. The NIH Pathways 2 Prevention report notes that reporting harms was of a poor standard in research using CBT and GET.

  • Difficulty comes with defining harm this has been suggested as one definition:

    any undesirable event that occurred

    during the trial that had a deleterious impact on morbidity, mortality, quality of life or increase in

    the use of resources, harm could be a primary or secondary outcome and could also be referred

    to as adverse event, side effect, complication, toxicity or safety

  • Reason for defending the trial csp.org.uk/frontline/articl...

  • Disagreement amongst colleagues of Ms Bavington using treatment other than recommended in the PACE trial manual.

  • From a surgical item placed on the static list:

    The concept of a static list is inappropriate to

    medicine. Scientists need to be in a position to

    constantly inform guidelines in order to ensure

    quality of care and highlight any specific dangers.

    A static list would hinder any such influence and

    would not be in the interest of any patient

    ignored with thank you for your interest statement common among all the rejections with not one reversal of a decision from twenty seven

  • Saving face a simple matter of acknowledging recent research.

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