Anyone have any info on NICE previously saying they weren't updating guidelines due to PACE trial results?

T

Tom Kindlon

Senior Member (Voting Rights)
We think we have got what we need now. Thanks.

I'm working with a few people to write something about the PACE trial. Can anyone recall, ideally with a link, NICE saying previously they were not updating their guidelines due to the results of the PACE trial?

I think it refers to keeping CFS/ME on their static list.
 
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Was it this letter to Invest in ME maybe?

"
Dear Ms McCall

Thank you for your letter.

As you are, I’m sure, aware the NICE guideline on ME/CFS was published before the PACE trial was seriously under way. Our recommendations were based on a body of research which preceded the PACE study. In our most recent review of the guideline, and cognisant of the controversies regarding the interpretation of the PACE results and methods, we assessed the evidence with, and without, the PACE results and the trial made no difference to the conclusions. Therefore, I cannot accept at this stage that reports of flaws in one study invalidate the results of all the studies in this area.

I appreciate that the existing recommendations are a matter of concern to some patients and groups and we will give some consideration to whether we need to modify or omit any of the existing recommendations during the development of the new guideline. We will certainly consult the new Committee members, when appointed, on this and a number of other issues.

In the meantime, I will keep your letter on file for future consideration and reference.

Best wishes

Mark

Professor Mark R Baker
http://www.investinme.org/IIMER-Newslet-1801-01.shtml#MBaker-reply
 
ukxmrv said:
Was it this letter to Invest in ME maybe?

"
Dear Ms McCall

Thank you for your letter.

As you are, I’m sure, aware the NICE guideline on ME/CFS was published before the PACE trial was seriously under way. Our recommendations were based on a body of research which preceded the PACE study. In our most recent review of the guideline, and cognisant of the controversies regarding the interpretation of the PACE results and methods, we assessed the evidence with, and without, the PACE results and the trial made no difference to the conclusions. Therefore, I cannot accept at this stage that reports of flaws in one study invalidate the results of all the studies in this area.

I appreciate that the existing recommendations are a matter of concern to some patients and groups and we will give some consideration to whether we need to modify or omit any of the existing recommendations during the development of the new guideline. We will certainly consult the new Committee members, when appointed, on this and a number of other issues.

In the meantime, I will keep your letter on file for future consideration and reference.

Best wishes

Mark

Professor Mark R Baker
http://www.investinme.org/IIMER-Newslet-1801-01.shtml#MBaker-reply
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I was hoping for something more clear cut than that.
 
This stuff isn't 100% clear cut on "due", but worth citing and shows the influence of PACE imo.

This MEA news piece: http://www.meassociation.org.uk/201...ine-on-mecfs-next-review-will-be-august-2013/

... which links to this piece from NICE which has plenty: http://www.meassociation.org.uk/wp-content/uploads/2011/03/53532.pdf

eg:

This is supported by the recently published PACE trial
(comparison of adaptive pacing therapy,
cognitive behaviour therapy, graded exercise therapy, and specialist
medical care for chronic fatigue syndrome among 641 patients,
published February 2011).
Click to expand...

Because of comments received at consultation t he review decision on this guideline was suspended until the PACE trial (Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chroni c fatigue syndrome ([PACE]: a randomised trial) reported on the 18 th February 2011. The data presented in this study was taken into account to inform the final review decision . In the study, p atients were randomly allocated to standard medical care ( SMC ) alone or SMC plus cognitive behavioural therapy ( CBT ), graded exercise therapy ( GET ) or adaptive pacing therapy ( APT ) . Assessments of fatigue and physical function, social adjustment scores, sleep disturbance, anxiety, depression and adverse events were u ndertaken at baseline, 12 weeks (mid - therapy), 24 weeks (post - therapy) and 52 weeks after randomisation. The results of the study indicated that either CBT or GET, when added to SMC, are moderately effective treatments for CFS . The results of the study are in line with current NICE guideline recommendations on the management of CFS/ME.
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The above March 2011 review was then cited to justify moving the guidelines to the static list, eg:

This guideline was reviewed in March 2011 where the decision was that it should not be updated at that time as no new evidence was identified which wo uld suggest a significant change in clinical practice. The decision to move this guideline to the static list reflects the result of the no to update decision from the review in 2011. Since that review NICE is not aware of any important new studies likely to publish over the next few years which would contradict the decision to move this guideline onto the static list. Having considered the criteria again in light of all comments received we still do not feel that the evidence base is substantially evolving in this area at this time . In addition this guideline is not scheduled to form part of a Quality Standard at this time and is therefore not considered a priority for NICE to review. By moving the guideline to the static list it will continue to be review ed periodically, but less frequently than other guidelines. However, NICE would welcome being informed of the publication of any additional new evidence whe n it arises before the next 5 year review .
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https://www.nice.org.uk/guidance/cg31/evidence/review-decision-february-2014-546203053

This was the PACE 'outcomes' page:

Impact: NICE publically affirmed that the results of the PACE trial strengthened the evidence base for cognitive behaviour therapy and graded exercise therapy in its current (2007) guideline. Original guideline - http://publications.nice.org.uk/chr...lgic-encephalomyelitis-or-encephalopathy-cg53.
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http://gtr.rcuk.ac.uk/projects?ref=G0200434#tabOutcomes

This from QMUL [edit: this QMUL REF2014 submission gets me fuming every time I read it. I can't find anyway of checking whether REF2014 fell for this BS in their assessment of QMUL or not]:

Since publication of the PACE trial in 2011, NICE have publicly affirmed their recommendation of GET (and CBT) [8].
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http://impact.ref.ac.uk/casestudies2/refservice.svc/GetCaseStudyPDF/18135

This was reference 8. NICE affirming support of GET. www.nice.org.uk/nicemedia/live/11824/53532/53532.pdf

It's now off-line, but the archived page shows it's the same document the MEA hosted that I posted above: https://web.archive.org/web/20110317205701/www.nice.org.uk/nicemedia/live/11824/53532/53532.pdf

The SMC had this quote on the release of PACE results:

Dr Fergus Macbeth, Director of the Centre for Clinical Practice at NICE, said:

“We welcome the findings of the PACE trial, which further support cognitive behavioural therapy and graded exercise therapy as safe and effective treatment options for people who have mild or moderate CFS/ME. These findings are in line with our current recommendations on the management of this condition.

“We will now analyse the results of this important trial in more detail before making a final decision on whether there is a clinical need to update our guideline. Until then, healthcare professionals should continue to follow our existing recommendations, especially as this latest research appears to endorse them as best practice for the NHS.”
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http://www.sciencemediacentre.org/e...reatments-for-chronic-fatigue-syndromeme-2-2/

I expect you could find more if you dug in.
 
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Not sure if this is exactly what you are looking for:
https://web.archive.org/web/2009090...ia/001/6F/CFSMEJRJudgementStatement130309.pdf

"Today’s decision means that the NICE guideline is the gold standard for best practice in managing CFS/ME.”

Professor Littlejohns continued:
“The guideline was developed by an independent group comprising clinical specialists in CFS/ME, patient representatives and experts involved in the diagnosis of the condition and provision of care. This guideline development group (GDG) considered a range of complex issues in great depth taking full account of the views of patient groups and health professionals.

...

"The judgment acknowledges the robust procedures that NICE follows in ensuring that its guidance is independent, evidence-based and fit for purpose."
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Tom Kindlon said:
I'm working with a few people to write something about the PACE trial. Can anyone recall, ideally with a link, NICE saying previously they were not updating their guidelines due to the results of the PACE trial?

I think it refers to keeping CFS/ME on their static list.
Click to expand...

You may be referring to the 3 year review of the CG53 guideline. Although the stakeholder consultation took place in November 2010, NICE held off publishing the review decision until March the following year so they could include the PACE results. You can read the review decision here - paragraphs 13 and 17 are probably of most interest to you.

ETA ...and I've just realised that Esther12 has already given you another link to the same document. Sorry for the duplication.
 
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WillowJ said:
Not sure if this is exactly what you are looking for:
https://web.archive.org/web/2009090...ia/001/6F/CFSMEJRJudgementStatement130309.pdf
Click to expand...

That response came before the PACE trial results, but it does give me the perfect excuse to link to another annoying thing from Professor Peter Littlejohns I was reading today:

http://jnnp.bmj.com/content/early/2012/11/30/jnnp-2012-304208.full?g=widget_default

"Who values evidence" - he seems to assume it's him.

He starts with a reference to an appallingly poor Wessely paper:

"In his thoughtful ‘reality check’ on the future of healthcare Roy Moynihan lists 10 reasons to be optimistic.1 His first four developments are particularly pertinent to the concerns addressed in Smith and Wessely's paper.2"

2. Smith C, Wessely S . Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development. J Neurol Neurosurg Psychiatry Published Online First: 17 November 2012 doi:10.1136/jnnp-2012-303208. Google Scholar

Then after a while of praising NICE he loops back around to CFS:

"Using this double approach the NICE guidelines programme has produced over 150 guidelines in its first 12 years and was only once subject to a judicial review—which it won on all counts. Not surprisingly it was Clinical Guideline number 53 Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy)."


http://jnnp.bmj.com/content/early/2012/11/30/jnnp-2012-304208.full?g=widget_default#ref-2
 
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