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:

Edit: Even the RCGP & Royal College of OTs asked for DWP to be included.

 

The 'comments' file is missing for me, so if anyone has a copy, save it!

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

 

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

ETA: I have saved a copy of this one. Perhaps they have tried to fix the document name, so that it doesn't talk of schizophrenia.

 

https://twitter.com/user/status/1052240617663852550

 

The Royal College of Pediatrics & Child Health have written:

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.

 

The link has changed and they've fixed my comment (I pointed it out to them so the record would be accurate for posterity).

 

Tony Crouch is a really good egg who knows personally at the coalface......

 

I don't think the link has changed again, https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents still links to https://www.nice.org.uk/guidance/gid-ng10091/documents/consultation-comments-and-responses-2

 

But "they" see that as a symptom of a primary depressive or anxiety disorder, not as a sign of despair due to a disabling, life altering, financial existence endangering disease.

 

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!

 

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.

 

Sadly that is correct. A phrase worth remembering. Xx

 

Comment from Action for ME

https://www.actionforme.org.uk/news/​nice-guideline-scope-and-committeeupdate-and-comment/

 

"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/

 

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:

A quick search for "measure" and "measuring" in the current scope document showed no mentions.

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.)

 

bump

 

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:

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?