IiME have just received this letter from NICE

[Countrygirl]

Dear Stakeholder

I am writing to advise you that NICE has commenced its formal check of the need to update the clinical guideline CG53 Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management.

In 2014 this guideline was added to the clinical guidelines static list as no quality standard had been commissioned for this topic and no major ongoing studies completing within the next 3-5 years were identified. Guidelines on the static list remain in existence and will be considered for new evidence at 5-year intervals. In the case of CG53 the static list review was due in 2019. However, if important new evidence is notified we can remove the guideline from the static list and carry out a full guideline surveillance review.
In 2015 we were advised of 3 US reports that indicated there are likely to be changes in the diagnostic criteria in this field that will have implications for the guideline in the future, but not until after the proposed 2 year validation of the diagnostic criteria is completed. In view of these reports we have decided to commence a formal check of the need to update the guideline earlier than the 5 year interval. We have since been made aware of new information about the 2011 PACE trial, and we will also consider that in the review.

The guideline surveillance review has been scheduled for review at the beginning of 2017 and a decision is expected to be published by summer 2017. A surveillance report will be developed to communicate the update decision and provide a commentary on approximately 3 articles felt to be of particular interest within this topic. The exact publication date will depend on the progress of the review and the proposed update decision. We will email stakeholders when the report has been published.
There will be a 2-week consultation with registered stakeholders if information summarised indicates that a 'no update' decision should be considered. There is no consultation if the decision is to update the guideline because it has been based on the availability of new evidence, and is usually supported by stakeholders. It is important to note that if the decision is to update the guideline then the update will be developed in accordance with NICE processes for updating guidelines. The timescales for any update of the guideline will depend on the size and extent of the required update and available capacity.

Consultation dates and times are posted in advance on the guideline page on the NICE website, and stakeholders are reminded by email.


www.nice.org.uk

 

[Countrygirl]

So who are the stakeholders? I think Prof EC was involved in the preparation of the NICE guidelines and she is unlikely to approve of a revision that reflects a physical aetiology. Downgrading PACE would also impact her MAGENTA and FITNET trials.

It would be helpful to know who else is involved.

 

[Simon]

In the case of CG53 the static list review was due in 2019. However, if important new evidence is notified we can remove the guideline from the static list and carry out a full guideline surveillance review.
In 2015 we were advised of 3 US reports that indicated there are likely to be changes in the diagnostic criteria in this field that will have implications for the guideline in the future, but not until after the proposed 2 year validation of the diagnostic criteria is completed.

Thanks for the post. 2 years from 2015 US IOM report (for validation) would take us to 2017.

In view of these reports we have decided to commence a formal check of the need to update the guideline earlier than the 5 year interval. We have since been made aware of new information about the 2011 PACE trial, and we will also consider that in the review.

Interesting - is that the recovey and improvers data from Alem Matthees's FOI request (and subsequent analysis)?

 

[AndyPR]

So who are the stakeholders? I think Prof EC was involved in the preparation of the NICE guidelines and she is unlikely to approve of a revision that reflects a physical aetiology. Downgrading PACE would also impact her MAGENTA and FITNET trials.

It would be helpful to know who else is involved.

I can't answer who are stakeholders but who can register as stakeholders are

Who can register?

• National organisations for people who use health and social care services, their families and carers, and the public
• Healthwatch organisations
• National organisations that represent health and social care practitioners and other relevant professionals whose practice may be affected by the guideline
• Companies that manufacture medicines, devices, equipment or adaptations, and commercial industries relevant to public health, excluding the tobacco industry
• Tobacco industry organisations who register to participate are automatically registered as respondents.
• Public sector providers and commissioners of care or services
• Private, voluntary sector and other independent providers of care or services
• Government departments and national statutory agencies
• Organisations that fund or carry out research
• Overseas agencies with a remit covering England
• Local or regional groups representing people who work in, or use health and social care services can register as stakeholders only when there is no national organisation that represents the group's specific interests.

from https://www.nice.org.uk/get-involved/stakeholder-registration, which I got to from https://www.nice.org.uk/guidance/cg53

 

[Esther12]

Someone had just posted NICE's list of stakeholders... it looked like a couple of hundred organisations!

 

[JoanDublin]

Heres the list of stakeholders.

https://www.nice.org.uk/guidance/CG53/documents/stakeholder-list

 

[Esther12]

I wonder if Phoenix Rising should apply @Mark ?

MEAction UK? Anyone/everyone else?

 

[ryan31337]

Quick, get an ineffectual update in before Fluge & Mella publish the game changing stuff. Sorry can't revise again until 202x...

 

[AndyPR]

Heres the list of stakeholders.

https://www.nice.org.uk/guidance/CG53/documents/stakeholder-list

British Association of Dramatherapists
British Association of Psychodrama and Sociodrama

 

[worldbackwards]

Perhaps the British Association of Amateur Dramatics will get involved as well.

 

[slysaint]

Stakeholders discussed on OpposingMEGA thread
http://forums.phoenixrising.me/index.php?posts/790195/

 

[Binkie4]

https://www.nice.org.uk/guidance/CG53/chapter/Appendix-A-The-Guideline-Development-Group

The guideline development group includes Dr Esther Crawley.

 

[Binkie4]

https://www.nice.org.uk/guidance/CG53/chapter/Appendix-B-The-Guideline-Review-Panel

The guideline review panel.

 

[Esther12]

https://www.nice.org.uk/guidance/CG53/chapter/Appendix-A-The-Guideline-Development-Group

The guideline development group includes Dr Esther Crawley.

She was part of the group that developed the olod guidelines. Not sure what that means for any new ones.

 

[slysaint]

Not sure what that means for any new ones.

Anyone know how these groups are set up if and when the guidelines are reviewed? @charles shepherd

 

[Ysabelle-S]

Quick, get an ineffectual update in before Fluge & Mella publish the game changing stuff. Sorry can't revise again until 202x...

Yes, this is how I feel about it too. It concerns me that they could be concluding this a bit too soon, before we have more information. Will the phase III Rituximab trial results be known at all by closing? What about other developments? It could be that this leads in the longer term to more delay if they close on this too soon. It's felt recently that the British medical establishment, at least those who have been involved in or supportive of those hijacking this illness, have been circling the wagons.

 

[Sidereal]

Well that's terrible news. This review is coming too soon to include any of the gamechanging information which will appear in the peer reviewed literature at a later date such as the Matthees et al reanalysis of PACE, the Phase III rituximab trial and the cyclophosphamide trial.

 

[Binkie4]

Well that's terrible news. This review is coming too soon to include any of the gamechanging information which will appear in the peer reviewed literature at a later date such as the Matthees et al reanalysis of PACE, the Phase III rituximab trial and the cyclophosphamide trial.

Is this an actual review or a decision whether to review? If it is the latter, how long will it take to do a review which could affect the guideline?

 

[BruceInOz]

In 2015 we were advised of 3 US reports that indicated there are likely to be changes in the diagnostic criteria in this field that will have implications for the guideline inthe future,

Do we know what these three reports are? Do they actually list them somewhere or are we left to speculate?

 

[Sasha]

Well that's terrible news. This review is coming too soon to include any of the gamechanging information which will appear in the peer reviewed literature at a later date such as the Matthees et al reanalysis of PACE, the Phase III rituximab trial and the cyclophosphamide trial.

I don't think that's the case:

Guidelines on the static list remain in existence and will be considered for new evidence at 5-year intervals. In the case of CG53 the static list review was due in 2019. However, if important new evidence is notified we can remove the guideline from the static list and carry out a full guideline surveillance review.

I think they can do a review at any time if important new evidence comes in.