Sorry! It seems there was a significant error in the original version of this post. The NICE Pathway for CFS/ME was actually produced in 2014, not 2019, which makes me wonder why I’ve never come across it before! Anyway this invalidates about half of yesterday’s bullet points and makes me realise I shouldn’t really write about ME while I’m really focussed on something else. The points below still stand however, and it is still hard to see why this document – and indeed the full guidelines themselves – are still in use without any kind of government ‘health warning’.
- Why is there no caveat to make anyone using these flowcharts aware that these existing guidelines are due to be superseded?
- 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contested by both patients and many health professionals, to such an extent that these treatments have now been withdrawn in the USA.
- 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.
- 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.
- 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’.)