NICE Pathways - Flow Charts for CFS/ME

** 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1) Why have they been developed now, just a year before the existing guidelines are due to be superseded?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4) Why is there no caveat to make anyone using these flowcharts aware that these existing guidelines are due to be superseded?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contested by both patients and many health professionals, to such an extent that these treatments have now been withdrawn in the USA.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?

 

I don't think there is anything sinister in this, because ...

https://pathways.nice.org.uk/

... looks to list a great many conditions that have now had this flowchart approach applied.

I suspect the timing is purely coincidental with the ME guideline being updated. As they instigate any flowcharted documents, they can of course only be based on their prevailing guideline. There should be a shiny new ME/CFS one next year, hopefully hugely better than the current one.

That's just my take on it.

 

I think the answer is obvious: the outcome is already decided. We can still affect it by making it untenable to maintain the illusion but the default outcome is obviously to reaffirm the belief system and just pretend it's reality that is wrong.

 

Yes, I agree there should be.

 

yes well they know we cant very well riot in the streets if they carry on with their gross incompetence . why spend good money on some fancy graphics if they are about to change everything.

 

Thanks for your comments. I've just posted this on my blog and will send a copy to Dr Shepherd. I'm afraid I'm with rvallee and alktipping in anticipating an unhappy outcome to the guidelines revision, but thanks to Barry for pointing out the NICE pathways website. I agree that it therefore seems likely that the publication of the pathway so close to the date of revision is coincidental but most of the above concerns still stand.

 

Sorry! It seems there was a significant error in the post with which I started this thread. 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 the above bullet points and makes me realise I shouldn’t really write about ME while I’m really focussed on something else. Points 4, 5, 6, 7 and 10 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’.

 

Nice Pathways for "CFS/ME" appears to have been updated October 2020.

https://www.google.com/url?q=https:...WMAN6BAgIEAE&usg=AOvVaw0Mzc50aYsTmAJZmb-FBUZM

 

Online version to avoid the need to download a file (the option to download is still available from this web page), https://pathways.nice.org.uk/pathways/chronic-fatigue-syndrome-myalgic-encephalomyelitis