NICE guidelines: Final scope and equality impact assessment published

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.

 

Interesting that NHS Somerset CCG seems to imply that ME is a problem with our auras!

Page 312.

Bizarre or what?

 

One of my responses was also garbled (p.344, Respect for ME (my own website)). It should read:

It currently reads:

Which is almost the exact opposite!

I've raised it with my contact there.

 

@Andy is it too late to link to Mark Vinks recent publication on problems with Cochrane (ie the bit on the CFQ) in the S4ME CFQ critique?

 

I wonder if it's related to this: https://www.ncbi.nlm.nih.gov/m/pubmed/27904120/ (also mentioned in the responses).

More info on repetitive transcranial magnetic stimulation (used to stimulate neurons in treatment-resistant depression): https://www.mayoclinic.org/tests-procedures/transcranial-magnetic-stimulation/about/pac-20384625

 

While obviously we can revise our document at any time, the opportunity for us to submit new items/revisions to NICE is past. Tagging @Carolyn Wilshire and @Graham as they are named authors of the document.

 

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!

 

This would be my assumption too.

 

See also on the ME Association website -

https://www.meassociation.org.uk/20...s-and-committee-appointments-16-october-2018/

 

An initial list of appointees to the Guideline Committee has been released as well, https://www.s4me.info/threads/nice-...deline-committee-has-now-been-published.6197/

 

I'm actually feeling pretty positive about some of the NHS/clinic responses too.

 

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.....

 

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

Anybody know what evidence there is for this?