Spoonseeker
Established Member
** Sorry - I made a significant error in this post. Please see my correction a few posts below... **
These recently developed (2019) flow charts based on the existing NICE CFS/ME guidelines
were brought to my attention by a friend and I am just checking round to see if people are aware of their existence. Several questions/issues regarding them occur to me:
1) Why have they been developed now, just a year before the existing guidelines are due to be superseded?
2) Is this part of some plan to make NICE guidelines in general more easily understood and accessible for health professionals?
3) Or is it something specific to ME/CFS? - in which case the timing seems to be especially inappropriate.
4) Why is there no caveat to make anyone using these flowcharts aware that these existing guidelines are due to be superseded?
5) Why is there no caveat to make anyone using these flowcharts aware that the evidence for graded exercise and cognitive behavioural therapy is strongly contested by both patients and many health professionals, to such an extent that these treatments have now been withdrawn in the USA.
6) Why is there no caveat to make anyone using these flow charts aware that surveys by patient advocate groups have consistently shown these treatments to make patients worse rather than better, sometimes substantially and even permanently so.
7) Are health professionals using these flowcharts to be made aware that they may therefore be subject to prosecution for medical negligence if the patient is made worse by their use.
8) Have NICE consulted with patient advocacy groups – or even those who are currently involved in revising the guidelines – to get their views before releasing these flow charts?
9) Have patient advocacy groups – and those currently involved in revising the NICE guidelines – been made aware of the existence of these flowcharts?
10) Has it been borne in mind that the transition from text-only guidelines to flowcharts inevitably involves unintended changes in emphasis which may substantially alter the way the guidelines are used, so producing an unintentional yet potentially substantial effect upon patients.
For instance, the original NICE guidelines (on page 71) mention the CDC citing a review of published studies showing recovery rates, with a note that ‘full recovery is rare’.
Using the flow charts, however, a click onto ‘general principles of care’ from the initial overview flow chart brings us to a list of ‘notes on principles of care’.
If you scroll down this to the section on ‘support and information’ and click on the word ‘stage’, you will see the assertion that ‘there are different stages in the natural course of CFS/ME: acute illness, maintenance or stabilisation, and recovery’.
There is no mention of ‘recovery being rare’. A health professional who is new to CFS/ME may therefore get the (mistaken) impression that the illness progresses through these three ‘natural’ stages of the illness which are mentioned, with ‘recovery’ being an inevitable part of that natural progression.
(The assertion by ‘NICE’ that the ‘natural course’ of ‘CFS/ME’ ends in ‘recovery’ does appear in the original guidelines but only in the obscure glossary definition of ‘stage’.)
Any thoughts on this? Maybe people are already aware of it, in which case I apologise for wasting your time. But if not, then I wonder how I should take it further? I am intending to send a copy to Charles Shepherd. Any other suggestions?
These recently developed (2019) flow charts based on the existing NICE CFS/ME guidelines
were brought to my attention by a friend and I am just checking round to see if people are aware of their existence. Several questions/issues regarding them occur to me:
1) Why have they been developed now, just a year before the existing guidelines are due to be superseded?
2) Is this part of some plan to make NICE guidelines in general more easily understood and accessible for health professionals?
3) Or is it something specific to ME/CFS? - in which case the timing seems to be especially inappropriate.
4) Why is there no caveat to make anyone using these flowcharts aware that these existing guidelines are due to be superseded?
5) Why is there no caveat to make anyone using these flowcharts aware that the evidence for graded exercise and cognitive behavioural therapy is strongly contested by both patients and many health professionals, to such an extent that these treatments have now been withdrawn in the USA.
6) Why is there no caveat to make anyone using these flow charts aware that surveys by patient advocate groups have consistently shown these treatments to make patients worse rather than better, sometimes substantially and even permanently so.
7) Are health professionals using these flowcharts to be made aware that they may therefore be subject to prosecution for medical negligence if the patient is made worse by their use.
8) Have NICE consulted with patient advocacy groups – or even those who are currently involved in revising the guidelines – to get their views before releasing these flow charts?
9) Have patient advocacy groups – and those currently involved in revising the NICE guidelines – been made aware of the existence of these flowcharts?
10) Has it been borne in mind that the transition from text-only guidelines to flowcharts inevitably involves unintended changes in emphasis which may substantially alter the way the guidelines are used, so producing an unintentional yet potentially substantial effect upon patients.
For instance, the original NICE guidelines (on page 71) mention the CDC citing a review of published studies showing recovery rates, with a note that ‘full recovery is rare’.
Using the flow charts, however, a click onto ‘general principles of care’ from the initial overview flow chart brings us to a list of ‘notes on principles of care’.
If you scroll down this to the section on ‘support and information’ and click on the word ‘stage’, you will see the assertion that ‘there are different stages in the natural course of CFS/ME: acute illness, maintenance or stabilisation, and recovery’.
There is no mention of ‘recovery being rare’. A health professional who is new to CFS/ME may therefore get the (mistaken) impression that the illness progresses through these three ‘natural’ stages of the illness which are mentioned, with ‘recovery’ being an inevitable part of that natural progression.
(The assertion by ‘NICE’ that the ‘natural course’ of ‘CFS/ME’ ends in ‘recovery’ does appear in the original guidelines but only in the obscure glossary definition of ‘stage’.)
Any thoughts on this? Maybe people are already aware of it, in which case I apologise for wasting your time. But if not, then I wonder how I should take it further? I am intending to send a copy to Charles Shepherd. Any other suggestions?
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