NICE guidelines: Final scope and equality impact assessment published

NICE have refused to include DWP under "Who the guideline is for". This was asked for by quite a few orgs.
Here's their reasoning:
NICE guidelines are developed for the NHS and can only make recommendations for health and social care organisations and professionals and do not have a remit outside of this. In the section,’ who the guideline may also be relevant for’ we have included a wider pool of professionals that includes educators, occupational health services and voluntary sector organisations. We would hope however that up to date guidance may help improve knowledge of all practitioners and would hope other organisations outside of the remit of the guideline would use the recommendations where appropriate.
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Edit: Even the RCGP & Royal College of OTs asked for DWP to be included.
 
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The Royal College of Pediatrics & Child Health have written:

The NICE guideline on ‘Chronic Pain’ is also currently under review, and there might be scope in combining with the CFS/ME. This must overlap with the CFS/ME guideline and should possibly be considered together.
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I really hope the non-BPSers can steer the committee away from this want to dilute the guideline to include all sorts of other conditions.
 
Cheshire said:
I have skimmed through the document and so far haven't seen anything seriously worrying in the developers' responses.
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Same here. Although a lot of it is standard bureaucratic responses, it largely falls on the right side, IMHO.

However, the proof will be in the final document. A lot of water to flow under the bridge until then, and the make up of the panel is not ideal.

We shall see.

Esther12 said:
I think it's fair to describe something that only happens in 5% of cases as 'unusual'. The Royal College of Psychiatrists have an interesting approach to stats.
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Yes, but we already knew that. ;)

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From the Royal College of Psychiatrists:

Co-morbid depression and anxiety are high in ME/CFS and the rates of suicide are increased compared to the general population.
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Gee, I can't imagine why ME/CFS patients would have higher suicide rates, and why that would be.

(Interesting to note that they use ME/CFS, instead of their usual CFS/ME.)

It is essential that a biopsychosocial approach is taken so the mental health needs of those suffering from ME/CFS are addressed. We take the view that a mind-body split is unhelpful and can prevent patients accessing the care they need. This applies to all long term conditions, including ME/CFS
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So, no change in your position then? Continue rolling out your lucrative woo-woo across the land.
 
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Keela Too said:
Nor is suicide ever seen as the pragmatic and considered decision, of an individual abandoned into an unbearable & physically horrendous situation, with no way out, nor hope for one in the future!
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Indeed. Its not suicide its self administered euthanasia. TBH the only thing that is keeping me around is the fact that i know several people would be badly traumatised if i went, & 2 of them are children, which is unacceptable to me. I live on, endure on because of my love for, & desire to protect, them. And I'm not even at the very severe end.
The PCP, NICE, & the entire medical & political establishment, could do masses to reduce the self administered euthanasia rate among PwME.... by simply giving us the compassionate care & support that people with comparable, recognised as organic diseases receive, and removing the continuous spectre of being kidnapped & tortured & made even sicker in a mental institution like Karina, Sophia, Bob, and so many others, when they section people for deteriorating after the bogus treatments they are being repeatedly informed will make people deteriorate.

Their hubris & obtuseness are major parts of the problem.
 
Comment from Action for ME
The final version of the National Institute for Clinical Excellence (NICE)’s scope for its revised guideline on M.E./CFS was published on Tuesday 16 October, along with consultation comments and committee appointments. After reviewing the documents, we are pleased to see that NICE has addressed a number of the concerns raised by Action for M.E. during the consultation in July. This includes highlighting the fluctuating nature of M.E./CFS, and important information about post-exertional malaise.

Action for M.E.’s view is that the published scope offers a robust foundation on which the guideline can be developed.
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https://www.actionforme.org.uk/news/​nice-guideline-scope-and-committeeupdate-and-comment/
 
Keela Too said:
Nor is suicide ever seen as the pragmatic and considered decision, of an individual abandoned into an unbearable & physically horrendous situation, with no way out, nor hope for one in the future!
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"What kind of emotional despair lead an otherwise happy person to jump out of a burning building? Surely smoke and intense heat are secondary to such a horrific act which must be interpreted from a psychosocial lens and unreasonable expectations of ambient heat and air particulates."
 
Analysis from #MEAction (of the documents released, not committee appointments)

https://www.meaction.net/2018/10/25/nice-final-scope-read-our-analysis/

The publication of the final scope follows the process in which #MEAction UK submitted a comprehensive and detailed response to NICE in July 2018. While #MEAction asked for the immediate suspension of GET and CBT, NICE has not taken any action to add an interim warning to the current guidelines stating that GET and CBT should not be used. However, NICE has replied to our ask, stating that “we will address the clinical and cost effectiveness of treatments including GET and CBT as soon as is feasible in the development of the guideline”. #MEAction urges NICE to add the warning we proposed immediately.
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Andy said:
Proof that the Association of British Neurologists are more concerned for their livelihood rather than protecting patients from harm
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This bothers me. They picked a paper that is quite contrary to the point I have been and keep trying to make -- that there are some MS clinicians and researchers emphasizing the importance of differentiating between different types of fatigue and fatigability and developing objective measures (see below* and here ).

Instead the Pöttgen et al paper didn't specify which kind of fatigue they are refering to. Plus: "The primary outcome was the Chalder Fatigue Scale."

It would be interesting to know whether there are some more reasonable neuologists having some influence within the Association of British Neurologist who could point their colleagues to this contradiction.

However, when I searched Cochrane's and the NICE guidelines's sources on fatigue in MS, I got the impression that in this field the reasonable researchers are a tiny minority, too...

* From S4ME's comment on the NICE guidline's draft scope document:
When assessing fatigue, we have been particularly concerned about the use of the ‘Chalder Fatigue Questionnaire’. We believe it to be a particularly poor questionnaire. Language is used in a confusing way particularly when asking for a comparison with a sometimes distant reference point. It also uses two incompatible marking schemes where, for example, inboth the PACE and FINE trials some subjects improved with one marking scheme but got worse with another. We believe that particular care should be taken when relying on results using this questionnaire.
We have written a more detailed critique available here: https://www.s4me.info/docs//CFQ

Measuring fatigue is difficult

It is perfectly possible for a patient who is very severely disabled by ME/CFS to experience little fatigue most of the time because they are pacing themselves and restricting their activities
to remain below their fatigue-triggering threshold.
"Similar difficulties that arise when measuring fatigue and fatiguability, designing as well as assessing treatment trials are recently also being discussed in much better researched and understood conditions like MS (see e.g. Rudroff, Thorsten, Kindred, John H, Ketelhut, Nathaniel B.; Fatigue in Multiple Sclerosis: Misconceptions and Future Research Directions, Frontiers in Neurology 2016 Aug 2;7:122. doi: 10.3389/fneur.2016.00122, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4969300/ )."
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A quick search for "measure" and "measuring" in the current scope document showed no mentions.

Andy said:
Well, as long as it works with MS then it's bound to work for us, obviously.....
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I understand your irony and I'm aware that fatigue related to other illnesses might have nothing or few in common with ME related impairments. My point in referring to MS research was that there seem to be at least some reasonable researchers regarding the need of differentiating fatigue and applying objective measurements.
(Sorry, I am repeating myself -- will have a break now.)
 
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Merged thread

https://www.nice.org.uk/guidance/gid-ng10091/documents/consultation-comments-and-responses-2

It's a good read if you're well enough (I've only read bits of it). I noticed that Royal United Hospitals Bath NHS Foundation Trust on page 95 said:

We question whether the statement that for “most people complete recovery is unusual”is supported by the current research evidence we have available to us. Recovery from ME/CFS is complex to define and research studies into interventions for ME/CFS have shown that recovery is possible for some people, both from an objective assessment and subjective perspective (e.g. Nijhof et al 2012). Although some people do suffer for a long time, statements saying that recovery is unusual, could lead young people who suffer with ME/CFS to believe that recovery is not possible, when for them it may be.
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The study seems to be this: https://www.ncbi.nlm.nih.gov/pubmed/22385683 - Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial.

A long time? Try decades or even a life time. I think this needs to be clarified. Does anyone have data on recovery rates including how they defined recovery?
 
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