• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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UK NICE guideline consultation open 10 July 2017 until Friday, 21 July 2017.

Jo Best

Senior Member
Messages
1,032
Invest in ME Research responses to the previous NICE guidelines are here: - http://investinme.org/campaigning.shtml#govt

nice.JPG


Source: https://www.facebook.com/groups/5804522506/permalink/10154754501307507/

This is the page on the NICE website on the history of their guideline (CG53) for ME/CFS: https://www.nice.org.uk/guidance/cg53/history

 
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MEMum

Senior Member
Messages
440
Is there any chance that PR could be included as a stakeholder? PR certainly represents loads of UK patients and European and worldwide ones whose health has suffered due to the adoption of PACE recommendations.
We could collate a summary of real science-based evidence of abnormalities in the physiology and biochemistry of people with ME.
I am sure many members would be happy to help and maybe @Janet Dafoe (Rose49) could add a quote from Ron!

What do members think? Anyone up for this @Tom Kindlon , @Mark , @JaimeS , @AndyPR ...@anyone else who's interested. Even if we are not registered stakeholders, I think it would be good to submit our views.
 
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Jo Best

Senior Member
Messages
1,032
Is there any chance that PR could be included as a stakeholder? PR certainly represents loads of UK patients and European and worldwide ones whose health has suffered due to the adoption of PACE recommendations.

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, e xcluding 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
 

MEMum

Senior Member
Messages
440
Thanks for the list @Jo Best. Flicking through, it seems any group can join from: British Association of Drama Therapists to Eli Lilley and Co, and the MoD. Maybe they are all Brritish based? No I see Niger Delta University...
Has to be worth an email....?
 
Messages
2,391
Location
UK
Just whether a review is needed.
This is a crucial distinction insofar as targeting responses. Concentrate on whatever will (must surely!) convince that a review is vital. But don't go on about things that should be reserved for the review itself - we know how easily distracted and side tracked final decision meetings seem to have got in this are. Don't want to shoot ourselves in the foot.

Would be good for them to come to realise from the responses they receive, how much egg they will soon have on their faces if they could not even have the nouse to call a review given what is going on.

Am I right they will only call a review based on new *evidence*?
 
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Jo Best

Senior Member
Messages
1,032
Thanks for the list @Jo Best. Flicking through, it seems any group can join from: British Association of Drama Therapists to Eli Lilley and Co, and the MoD. Maybe they are all Brritish based? No I see Niger Delta University...
Has to be worth an email....?
I would have thought this might cover PR (as it's a USA-registered org I think but with international remit)?
Yes, worth an email I should think, if the Board wanted to register PR as a stakeholder.
  • Overseas agencies with a remit covering England
 

Large Donner

Senior Member
Messages
866
Is this a consultation on what to put into the NICE guidelines, or just whether such a review is needed?

Just whether a review is needed.

If that's the case I cant see anything changing as there is no new accepted treatments in the scientific literature. NICE will ignore any criticism of PACE etc simply because they will claim it is the "best available evidence and is peer reviewed".

They are also likely to use the line that something is better than nothing and that withdrawing the current recommendations of CBT and GET would leave patients with nothing and NICE exists to provide everyone with something . If they have some words on a peace of paper they will sign it off...job done!!

They will also use the "free to chose" narrative. I personally think also that there is no way the BPS school hasn't been meeting with influential people from NICE and the policy makers behind the scenes especially in this blame and austerity culture politics.
 
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Jo Best

Senior Member
Messages
1,032
This is how this question arose whether to review (as CG53 was on the static list).

Is this guideline up to date?

In 2015 we were told about 3 US reports that indicated there are likely to be changes in diagnostic criteria that could have an impact on the guideline recommendations. We decided to start a check of whether the guideline needs updating, and plan to publish our decision in summer 2017. We have since been made aware of new information about the 2011 PACE trial, and we will also consider that in the check. Register as a stakeholder to be informed about the decision. https://www.nice.org.uk/guidance/cg53/

Then there's this: https://www.nice.org.uk/guidance/cg53/documents/surveillance-adhoc-report
 

Jo Best

Senior Member
Messages
1,032
This is a crucial distinction insofar as targeting responses. Concentrate on whatever will (must surely!) convince that a review is vital. But don't go on about things that should be reserved for the review itself - we know how easily distracted and side tracked final decision meetings seem to have got in this are. Don't want to shoot ourselves in the foot.
I think it's quite structured, they have changed the type of guideline they produce since CG53 was published, so the questions asked for this stage will be limited to arrive at that specific decision whether to review, as you say.

Am I right they will only call a review based on new *evidence*?
They wrote, "Feedback was also sought from the GDG Chair who indicated that they agreed with the approach to bring the surveillance review forward to 2017. They felt that by 2017 there is likely to be a clearer case definition and evidence on which categories of patients respond to the therapies now available." From: https://www.nice.org.uk/guidance/cg53/documents/surveillance-adhoc-report
 

Jo Best

Senior Member
Messages
1,032
If that's the case I cant see anything changing as there is no new accepted treatments in the scientific literature. NICE will ignore any criticism of PACE etc simply because they will claim it is the "best available evidence and is peer reviewed".

They are also likely to use the line that something is better that nothing and that withdrawing the current recommendations of CBT and GET would leave patients with nothing and NICE exists to provide everyone with something . If they have some words on a peace of paper they will sign it off...job done!!

They will also use the "free to chose" narrative. I personally think also that there is no way the BPS school hasn't been meeting with influential people from NICE and the policy makers behind the scenes especially in this blame and austerity culture politics.
Yes I think we're still well up against the might of the British BPS crew.
 
Messages
2,125
Just looked thro the list of stakeholders, counted maybe 14 that would definitely want a change to the NICE guidelines.
A lot more that would not.

Very oddly (or not, depending on how you look at it), Action for ME do not appear to be on the list?