NICE Health topics: Tiredness/Fatigue in adults (includes CFS).

I received this about NICE and 'The Summary' issue as H has now joined S4ME and drew my attention to the conundrum initially.

'Thanks for alert to this- it needs attending to, pleased that Caroline Struthers is taking it up with NICE.

I really don’t see how NICE can hold the line that "the CKS do not represent formal NICE guidance.”

Thre is a link to CKS from the NICE home page: www.nice.org.uk which takes you to:
https://cks.nice.org.uk Not only does this web address clearly imply that CKS are purveyed by NICE, but there is no blurb on the page to advise otherwise.
Yes, some other org puts them together (though the webpage doesn’t tell you that either). But it’s pretty clear that this is being purveyed as official NICE info.

They can’t have it both ways. Either take responsibility for info on their webstie that is presented as such or abnegate responsibility and clearly state on the website that NICE are not responsible for the CKSs.

I have just signed up for an S4ME account but I dont’ know my way around that well so please feel free to post this yourself if it would help.'

 

Janet has just written back to say....

"I have asked the publishers of the CKS to consider your feedback and will contact you again as soon as I receive a response"

I didn't have the heart to point out that NICE are the publishers of the CKS. Presumably she means Clarity...? Who knows?

 

NICE Janet has spoken...


Dear Caroline

Clarity confirmed that they will make any necessary changes to the CKS once the NICE draft guideline has been finalised and published in August 2021.

Kind regards

Janet

 

NICE Clare has also spoken, after a chivvy. And now we have Janet's last name - exciting! I might give myself a little break before replying....

Dear Caroline,

Apologies for the delay in responding.

As you rightly note, NICE has recently developed a guideline support document that aims to facilitate collaborative working and increase the use of Cochrane reviews in NICE guideline development. This document is going through final sign-off processes before being circulated to all NICE developers, as such it was not in operation when the ME/CFS guideline was in development. Going forward the rationale for not including a relevant Cochrane review in a NICE guideline will be communicated to the CRG (via the Managing Editor), the Network Associate Editor and the Deputy Editor in Chief (Toby).

With regards to the process for excluded studies more generally, they are detailed in the relevant appendix of the NICE evidence review with the reason(s) for exclusion documented.

I am aware that my colleague, Janet Fahie, is in contact with you re your concerns about NICE Clinical Knowledge Summary for tiredness in adults.

I hope this addresses your queries, please do get in touch should you require further information.

Best wishes,

Clare

Clare Wohlgemuth

Senior Technical Analyst, Centre for Guidelines

 

Presumably that is what you get with technical analysis.

 

It could be hard for NICE to hold the line that "the CKS do not represent formal NICE guidance.”

CKS are prominently listed on the NICE home page: www.nice.org.uk
Link takes you to: https://cks.nice.org.uk
This web address clearly implies that CKS are being purveyed by NICE. There is no blurb on either the CKS or NICE webpages to advise otherwise.
The work of putting together may be contracted out, but doctors and other profs will be left with at the very minimum a strong impression this is being purveyed as official NICE info.

NICE can’t have it both ways. Either take responsibility for this 'information' or abnegate responsibility and clearly state on the website that NICE are not responsible for the CKSs.

Incidentally, a search for 'chronic fatigue syndrome' on the 'Evidence Search' box on NICE home page produces a list of 2288 results:
1. The interactive flow chart based on CG53
2. The home page for CG53
3. Information for medics on the 'patientuk' site (last I looked this was not good)
4. The CKS on when to suspect CFS if person has chronic fatigue (which goes to show that if you can get people asking the wrong questions you don't need to worry too much about the answers; same 4 top results if you search on 'chronic fatigue', by the way)

 

After a little break, I replied to NICE Clare yesterday

Dear Clare

Thanks for your message. I was not aware the guideline support document was not yet in action – I must have missed that rather crucial bit of your presentation!

You didn’t address my question about feedback to authors of excluded primary and secondary review studies and to their funders? Is this included in the guideline support document? Do you agree that it would be a useful service to explicitly inform funders such as the NIHR and the MRC that studies they have funded in the past cannot be used to support recommendations because they are irrelevant and/or of low quality? If you are not in a position to answer, please could you pass this question on, or let me know who I should address it to?

Janet has replied to me saying that Clarity will not make any updates to the CKS until August. I have asked them to remove a reference to a Cochrane review supporting the management guidance which Cochrane themselves say should not be used. I am not sure why they can’t do this immediately, and have asked Janet to put me in touch with whoever is responsible for the Clarity content on the NICE website.

With best wishes

Caroline

 

The topic 'tiredness/fatigue in adults' may well have been introduced as a new topic back in 2009. However it is all but certain that 'CFS' used to exist a topic in it's own right. I know because I have an account of the CKS coverage from the Danum ME newsletter Spring 2011. This refers to CFS throughout and is not pitched at 'when does chronic fatigue become CFS?' [correct answer - it doesn't, this illness is not about fatigue]. I have tried uploading the file for info but apparently file size too large. Anyway, Baroness Scott's PQs have not been answered.

 

More of this, please. This is significant and critical to stop the flow of junk. It amounts to a DDOS attack on reality. Funding obviously useless junk must have consequences.

 

Plan next to write to Professor Fiona Watt (to question the 2018 defence of PACE and unfulfilled promise to make data available https://webarchive.nationalarchives....org/news/browse/criticism-of-the-pace-trial/) and to Ken Stein at NIHR who is directly responsible for the funding of Cochrane's UK review groups and central infrastructure

 

HMB,
you said today in a private email that this 2018 letter of complaint to NICE might be helpful in attempts to steer NICE in the right direction?

 

Yes, I came across hard copy yesterday and read it in full. Purpose of letter was to raise concerns abut the composition of the guideline committee, couched in terms of what the guideline needs to achieve against backdrop of current problems in NHS approach. A rich resource even now when there is cause to be concerned about the evidence reviews

 

I noticed just today that an NHS evidence search on 'chronic fatigue syndrome' produces a prominent steer to the Cochrane Reviews of CBT (item 7 of 2291) and 'exercise therapy' (item 10). See https://www.evidence.nhs.uk/search?q=chronic-fatigue-syndrome. (However searching on 'myalgic encephalomyelitis' produces a somewhat different list, which has the CKS much further down and does not appear to include either of the Cochrane Reviews in the top 50: https://www.evidence.nhs.uk/search?q=myalgic encephalomyelitis. There are 23,063 results for ME which at first I thought was good till I started trawling down and found that publications with 'me' as in 'me, myself' are included. Honestly! There are some other interesting peculiarities about the two lists - suggest worth a quick look.) Hope this is helpful

 

Finally got round to writing to Fiona Watt from the MRC https://healthycontrol.org/2021/07/...out-2018-defence-of-the-pace-trial-july-2021/

 

Excellent.

 

Am not holding my breath