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NICE Guidelines Review - Aug 2013

Bob

Senior Member
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16,455
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England (south coast)
Charles Shepherd MEA Facebook comment 15 December 2012:

Thanks Firestormm. He seems to contradict himself. He seems to suggest that only published RCTs will be considered, and then he says that the MEA will be presenting 'evidence' based on a patient survey, presumably unpublished.
 

Firestormm

Senior Member
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5,055
Location
Cornwall England
Thanks Firestormm. He seems to contradict himself. He seems to suggest that only published RCTs will be considered, and then he says that the MEA will be presenting 'evidence' based on a patient survey, presumably unpublished.

Lol yeah it does read like that doesn't it?! I think he means research evidence for 'new' treatments or direction i.e. he was speaking on a thread about the paper I linked to. People were I think asking whether this kind of research would be considered by NICE. Make any sense? Sorry. Bit wonky tonight. So new treatments based on research would require RCT evidence and I guess new researcj would have to be 'good enough' to pass muster (my words).

The MEA patient survey was about CBT and GET and experiences - if NICE review PACE (I don't think they will as they already have in the update last year, but anyway): they might take into account the results from the MEA's more thorough survey that was completed recently - to be published early 2013.

Did you do the survey, Bob? I did and it was bloody complex. Still if it produces some helpful results it will have been worth the effort.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Thanks Firestormm. That's helps to clarify where he's coming from.

Yes, I did participate in the survey. But I really don't see how it can help the NICE guidelines, as it isn't an acceptable quality of 'evidence' for NICE, and the PACE Trial gives them the most high-powered evidence re CBT and GET that they will consider. But maybe the MEA have something specific in mind with it, possibly in terms of real-life clinical patient experience.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Thanks Firestormm. That's helps to clarify where he's coming from.

Yes, I did participate in the survey. But I really don't see how it can help the NICE guidelines, as it isn't an acceptable quality of 'evidence' for NICE, and the PACE Trial gives them the most high-powered evidence re CBT and GET that they will consider. But maybe the MEA have something specific in mind with it.

When I was completing it - I do remember thinking 'what is this going to be used for? In what way will the complied data be of use and to whom?'

You are right I think. Whilst NICE will listen and take some notice of patient experiences - it can I feel do very little to e.g. ensure the way in which CBT is delivered in clinical practice. Similarly NICE cannot force GP Commissioning Groups to put ME Services into their plans.

Whatever there is or isn't in the actual Guideline is surely what will be reviewed at this time.
 

Firestormm

Senior Member
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5,055
Location
Cornwall England
What a pain in the arse :mad: That survey took me an age to complete. I'm certain the results won't go to waste but it's a nuisance that NICE choose now to revise their procedures. This doesn't apply uniquely to CFS/ME in so far as I read the reply; but it means that the Review as we expected it will not now take place:

by Tony Britton on January 21, 2013

At the beginning of January, The ME Association wrote to NICE (National Institute for Clinical Excellence) to ask for clarification on what was happening regarding the expected 2013 review of the NICE guideline on ME/CFS.

The following reply was received this morning:

Dear Dr. Shepherd,​
NICE’s Senior Management Team, with the approval of the NICE Board, has currently suspended the routine review of the need to update clinical guidelines 3 years after their publication. This suspension is from January 2013.​
A new process for reviewing and updating guidelines is being developed and we will be considering the timing and process of reviews and developing a process for faster more responsive updates of our guidelines.​
Our aim is to enable us to consider new evidence more frequently and to update aspects of guidelines more rapidly. A new process for both reviews and updates is being developed which we will be rolling out during 2013/14.​
A comprehensive review is also being undertaken of our entire portfolio and all guidelines will migrate onto the new timings for more frequent reviews during 2013/14. Once we have firmer detail about the new timings for reviews and updates we will notify stakeholders of the new review dates.​
Please let me know if you have any further questions.​
Best wishes,​
Oliver Bailey​
Project Manager – Centre for Clinical Practice​
National Institute for Health and Clinical Excellence​
10 Spring Gardens | London SW1A 2BU | Web: http://nice.org.uk

The MEA is currently in the process of preparing all the data from their 2012 patient evidence survey on CBT, GET and Pacing into a report. We were intending to send this report to NICE as part of new patient evidence that would need to be considered in the ME/CFS guideline review process.

Consequently, Dr Shepherd has written back to NICE today to check on whether we must proceed on the basis that there is now some uncertainty as to whether the ME/CFS guideline will be reviewed in 2013

And with no real information as to how the new NICE guideline review process will operate in future it is impossible to assess what role stakeholders such as the ME/CFS charities will have in a review process that will clearly be much faster, and possibly more frequent, than the process it is replacing.

Our parliamentary colleagues on the All Party Parliamentary Group on ME have been informed about this development.

The bolded part is particularly worrying at this point. Hopefully some clarification will be forthcoming soon.
 

Min

Guest
Messages
1,387
Location
UK
NICE are probably waiting for the results Prof Peter White's forthcoming research into graded exercise and mild vaguely defined fatigue. No doubt GET will yet again be lauded as a 'cure' for M.E. with no proof that it is anything of the sort.