NICE guidelines: Final scope and equality impact assessment published

Andy

Andy

Senior Member (Voting rights)
Just received notice that NICE have published their final scope for their review of the diagnosis and management guidelines.

Final scope can be viewed here, https://www.nice.org.uk/guidance/gid-ng10091/documents/final-scope

Stakeholder comments and responses from NICE can be viewed here, https://www.nice.org.uk/guidance/gid-ng10091/documents/consultation-comments-and-responses-2

Both documents are PDF files so, depending on your computer/tablet/phone, may be viewable in your internet browser or may download.

Equality impact assessment is available here, https://www.nice.org.uk/guidance/gid-ng10091/documents/equality-impact-assessment

ETA: Updated the comments and responses URL.
ETA 2: Added link to equality impact assessment.
 
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Interesting that NHS Somerset CCG seems to imply that ME is a problem with our auras!
An understanding of the pathology ofME/CFS is helped by an understanding of health and how to achieve and maintain this – ME/CFS is an illness with very much both a hardware body issue and a software being issue, and may involve electromagnetic fields in the body as well as physical, nutritional and pharmacological aspects
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Page 312.

Bizarre or what?
 
One of my responses was also garbled (p.344, Respect for ME (my own website)). It should read:
SF-36 and the Chalder Fatigue Scale (https://www.s4me.info/docs//CFQ-Critique-S4me.pdf) have severe weaknesses in capturing the full clinical picture in ME. Where the use of questionnaires is absolutely essential, we would recommend ME/CFS Fatigue Types Questionnaire (MFTQ) instead (Jason et al, 2011). In general, however, subjective measures are only useful if combined with objective measures that verify their accuracy.
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It currently reads:
SF-36 and the Chalder Fatigue is absolutely essential, we would
recommend ME/CFS Scale (https://www.s4me.info/docs//CFQ-Critique-S4me.pdf) have severe weaknesses in capturing the full clinical picture in ME. Where the use of questionnaires Fatigue Types Questionnaire (MFTQ) instead (Jason et al, 2011). In general, however, subjective measures are only useful if combined with objective measures that verify their accuracy.
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Which is almost the exact opposite!

I've raised it with my contact there.
 
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Parts of the document sound quite promising:
page 1
People with very severe ME/CFS can be bedbound with little functional capacity and need 24-hour care.
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page 2
‘Profound malaise’ has been proposed instead of fatigue to describe a characteristic symptom on the basis that fatigue does not adequately describe the severity of symptoms.
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Post-exertional malaise and deterioration of symptoms are considered typical of ME/CFS. Other common symptoms include chronic pain, disordered sleep, cognitive difficulties, digestive, autonomic, sensory and motor dysfunction
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The psychiatric hypothesis is not even aluded to in their aetiology paragraph...
It is not clear what causes ME/CFS. Ongoing research into underlying
causes and pathological processes have examined immune function, autonomic function, neuroendocrine disorders, neuroimaging, gut microbiome,
metabolomics and gene expression
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Weirdly, the tab where the reports opens up in my browser reads "schizophrenia guideline".
 
Cheshire said:
Weirdly, the tab where the reports opens up in my browser reads "schizophrenia guideline".
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Same here, wonder what that's about? Hopefully someone just mistakenly copied the new page's format from an existing one on schizophrenia and forgot to change it, and not that NICE really thinks ME is psychiatric despite their not mentioning psychiatric hypotheses!
 
page 3, Final Scope
The previous NICE guideline (CG53) made recommendations on the use of cognitive behavioural therapy (CBT) and graded exercise therapy (GET). Concerns have since been raised about these interventions, including challenges to the evidence supporting them and reports that people with ME/CFS have been pressured to participate in exercise programmes, leading to a worsening of symptoms.
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"since"?!?!

Serious concerns/challenges/reports of the problems with the whole CBT & GET approach have been raised for decades. I knew of them by no later than about 1990. And that was pre-internet.
 
This sounds encouraging:

To allow a robust analysis we also plan to review the published evidence on patient experience and conduct a call for evidence so that harms are identified and taken into account by the committee. [...]

This guideline will not be using the content or analysis of the previous guideline but will conduct new analyses on any evidence available. The process of assessment of evidence has changed since the previous guideline with a more robust and transparent analysis of the evidence using GRADE system. This includes the use of blinding in assessment of outcomes which means more subjective outcomes are downgraded.
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p. 164-165
 
Proof that the Association of British Neurologists are more concerned for their livelihood rather than protecting patients from harm
We do have some reservations about negative and unbalanced comments in the document regarding the role of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as evidenced based treatment.

We understand that feelings run high, often because of poor or unacceptable experiences of patients with health professionals, and also that these treatments are not suitable or helpful for all
people. We hope that the individual experiences of patients are properly heard and acknowledged during this process. However, we believe it is important in this process that the scientific
evidence is not distorted and seen in its proper context.

The principles of CBT and GET for example are both helpful in managing fatigue in neurological conditions such as MS where they are generally welcomed by patients (for example - J. Pöttgen, et al, Randomised controlled trial of a self-guided online fatigue intervention in multiple sclerosis, J. Neurol. Neurosurg. Psychiatry. (2018) jnnp-2017-317463.).

We expect and look forward to a NICE guideline that will rigorously and objectively appraise the evidence for treatment as well as reflect the diversity of experience, good and bad, of patients suffering from ME/CFS.
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Well, as long as it works with MS then it's bound to work for us, obviously.....
 
Andy said:
Proof that the Association of British Neurologists are more concerned for their livelihood rather than protecting patients from harm

Well, as long as it works with MS then it's bound to work for us, obviously.....
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Also, isn't a lot of the MS research copying the mistakes of ME research?

I, too, was disappointed by their comment, and their implication that this is all because 'feelings run high'. It's patronising and diminishes the legitimate critiques of patients and scientists. It's a form of gaslighting, in effect.
 
Not sure what the British Dietetic Association are on
We are disappointed by the lack of recognition for diet and nutrition in this guideline scope. There is no mention of nutrition assessment as part of heath assessment, or general wellbeing in the multidisciplinary pathway, only a brief mention of supplementation rather than assessing nutritional wellbeing. As mentioned above, dietetic assessment and advice is both a cost effective and clinically beneficial way of assisting this group. Compromised nutritional status has the potential to have a significant effect on wellbeing and quality of life. Support is therefore needed to clarify myths and ensure safe nutritional intakes whilst preventing unnecessary restrictions. Weight management is also useful as weight gain or significant loss can add to a patient’s fatigue.
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Anybody know what evidence there is for this?
 
Physician with an interest in ME/CFS Mike Beadsworth

Physiotherapist Joanne Bond Kendall

Social worker Tony Crouch Social work advisor

Psychologist Jo Daniels

GP Luis Nacul

Occupational therapist Susan Watson Senior occupational therapist, Leeds and West Yorkshire CFS/ME Service
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Great to see Luis Nacul on the list.

Do we know anything about any of the others?
 
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