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NICE guideline on ME/CFS: Stakeholder consultation submissions (July 2017)

trishrhymes

trishrhymes

Senior Member
Messages
2,158
While I applaud all the submissions we see here both on effort and content, I'm a bit disturbed that some seem to suggest that there are still '2 sides to the debate' on ME aetiology and treatment.

By this I assume they mean:

1. (Bio)psychosocial and CBT/GET and blocking deeper biomedical investigation.

2. Biomedical with rest/pacing/symptomatic medical treatment and deeper investigation and research both for individual patients and well funded research studies.

Surely what we are really saying is that 1. should now be discarded as unfounded and unsafe, and 2. is now the only show in town. So, just like creationism versus Darwinian evolution, there are no longer sides or a debate. One story is scientifically wrong, the other is right.

By bending over backwards to be polite to the 'other side' we are in danger of according them some undeserved legitimacy.
 
Kalliope

Kalliope

Senior Member
Messages
367
Location
Norway
Last edited:
Cinders66

Cinders66

Senior Member
Messages
494
Tot
trishrhymes said:
While I applaud all the submissions we see here both on effort and content, I'm a bit disturbed that some seem to suggest that there are still '2 sides to the debate' on ME aetiology and treatment.

By this I assume they mean:

1. (Bio)psychosocial and CBT/GET and blocking deeper biomedical investigation.

2. Biomedical with rest/pacing/symptomatic medical treatment and deeper investigation and research both for individual patients and well funded research studies.

Surely what we are really saying is that 1. should now be discarded as unfounded and unsafe, and 2. is now the only show in town. So, just like creationism versus Darwinian evolution, there are no longer sides or a debate. One story is scientifically wrong, the other is right.

By bending over backwards to be polite to the 'other side' we are in danger of according them some undeserved legitimacy.
Click to expand...

Totally agree. There was a line in AFMEs submission along lines of ofcourse it isn't that America is right and you are wrong - eh? Isn't it? And the forward ME group representing AFME/MEA/MERUK/tymes etc had a line like it was reasonable to come to the conclusions on GET that NICE had or something.
I see no reason to go out of the way to seem fair or open or give /take etc with this issue or these people. We are right they are wrong and the debate should be over without us compromising our righteous if we can use that word, message.

A lot of what was said, by the way, was good
 
C

charles shepherd

Senior Member
Messages
2,239
There are a number of initiatives re NICE going on 'behind the scenes' at the moment

A copy of the special issue of the JHP covering the PACE trial is being sent to Sir Andrew Dillon, Chief Executive at NICE

He has responded in a positive manner

The MEA has also just received a constructive response from Sir Andrew to the MEA letter containing the petition

I sense that there are some high level communications going on at NICE at the moment in relation to the stakeholder responses

So some small glimmers of hope……..

CS
 
C

charles shepherd

Senior Member
Messages
2,239
This is the negative response from NICE to the MEA request for details of membership of the expert group that concluded that there is no need to update the NICE guideline on ME/CFS

I suspect that the same line will now be taken with the FoI request for details of the membership of this group….

CS

Dear Dr Shepherd,

Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding our guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (CG53).


In reaching our provisional decision the surveillance review team undertook extensive searches to identify any new primary and secondary studies, including any economic studies. The focus is on the scope of the published guideline, but any additional areas or changes in practice that are identified during the process are also considered, if they fall within the referral of the published guideline. A literature search is conducted across a range of sources, selected according to their relevance to the topic and are based on those used in the published guideline.



We can’t provide the names of the surveillance team but it is made up of a Technical Analyst, Technical Adviser, Clinical Adviser and the Associate Director – Surveillance.



Topic experts, including members of the original guideline committee, are asked for their opinion, in their personal capacity, on the relevance of the published guideline, recent developments in the topic area and their knowledge of any new important evidence since publication of the guideline. Guideline committees are responsible for the development of guidelines and we publish the membership of them. We do not routinely publish the identities of topic experts because, while they may express an opinion, they are not part of the decision making body.


The review proposal is made by the review team and the decision on whether to update the guideline is made by our Guidance Executive. The Guidance Executive considers and signs off guidance and implementation for publication. It meets every week and is made up of NICE executive directors, guidance centre directors and the communications director. Its current membership can be found on the NICE website.


I hope this information has answered your question.



Kind regards,



Alex



Alexander Smith

Communications Executive (Corporate Communications)

National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom
 
Daisymay

Daisymay

Senior Member
Messages
754
trishrhymes said:
@charles shepherd, thank you very much for all your hard work on this excellent submission and letter.

I have just been browsing through some of the comments made by people who signed the petition. What is so striking is the sheer volume of comments from people whose lives have been ruined by GET.

I really hope the recipients of the petition take the time to read these comments. No more can they say that it's a tiny minority of activists campaigning against PACE and GET. The evidence is there.

I think the people advising NICE and making decisions on our lives should be obliged to read every word of every submission from the patient charities and every word of the comments on the petition - all 330 pages of them.
Click to expand...

Quite so and also the comments in the excellent MEA survey, was it 2015, which were so moving and shocking.
 
B

Barry53

Senior Member
Messages
2,391
Location
UK
charles shepherd said:
There are a number of initiatives re NICE going on 'behind the scenes' at the moment

A copy of the special issue of the JHP covering the PACE trial is being sent to Sir Andrew Dillon, Chief Executive at NICE

He has responded in a positive manner

The MEA has also just received a constructive response from Sir Andrew to the MEA letter containing the petition

I sense that there are some high level communications going on at NICE at the moment in relation to the stakeholder responses

So some small glimmers of hope……..

CS
Click to expand...
This is tentatively encouraging. There surely has to be a critical point at which NICE just has to concede change is inevitable. Without all these submissions and the 15000+ signatories, it's for certain nothing would change; with them there is a real possibility even NICE may be feeling the pressure to shake themselves out of their comfort zone, which in their case is a deep rut. Fingers crossed.
 
B

Barry53

Senior Member
Messages
2,391
Location
UK
trishrhymes said:
While I applaud all the submissions we see here both on effort and content, I'm a bit disturbed that some seem to suggest that there are still '2 sides to the debate' on ME aetiology and treatment.
Click to expand...
I think you are right, and I'm also not surprised. I think it is because the story is still unfolding, and the inertia from the old ideas has yet to be overcome. Many of us, me included, have fallen foul of it, and its good that you point it out. Obvious once someone does point it out, but obscured by the inertia until then.
 
Jonathan Edwards

Jonathan Edwards

"Gibberish"
Messages
5,256
charles shepherd said:
A copy of the special issue of the JHP covering the PACE trial is being sent to Sir Andrew Dillon, Chief Executive at NICE

He has responded in a positive manner
CS
Click to expand...

slysaint said:
hmm not what tom implies (see post on other thread):
http://forums.phoenixrising.me/inde...f-http-j-health-psychology.53058/#post-879602
Click to expand...

Tom and I, who have both seen the letter, were just saying that all we know is that Dillon has passed the volume on to the committee. Charles's comment is perfectly fair. At least someone at NICE had the courtesy to acknowledge receipt and pass on to the relevant people. That is not trivial, but it is less than James Coyne's tweet might have suggested.
 
C

charles shepherd

Senior Member
Messages
2,239
Daisymay said:
Quite so and also the comments in the excellent MEA survey, was it 2015, which were so moving and shocking.
Click to expand...

Thanks!

The MEA 'patient evidence' survey dates back to 2012

There was an enormous amount of both qualitative and quantitative data to go through

So the report wasn't published till 2015

More info:

Evidence from patient surveys reporting experiences of the three main therapeutic approaches to management of ME/CFS have produced results that differ significantly to that promoted by some healthcare practitioners and claimed by the published research evidence.

In 2012 we decided that a new and more detailed patient survey was required that would go further than previous surveys and seek to explain the factors that might contribute to patient-reported outcomes.

When large numbers of patients consistently report that currently employed management approaches are not as acceptable, effective, or as safe as has been claimed they ought to be, then we see it as our responsibility to investigate these reports, try to substantiate them, and then lobby for change in respect of clinical recommendations.

We hope that this new evidence might persuade the National Institute for Health and Care Excellence (NICE) to improve the current clinical guideline on ME/CFS (CG53), and also provide clearer guidance to NHS specialist services and private health practitioners on ways in which illness management advice can be made more suitable for all those affected by this disease – thus leading to improved patient-reported outcomes.

THE METHODS WE USED


Our survey was launched online in May 2012 and ran until August 2012. It was open to anyone with M.E., chronic fatigue syndrome or post-viral fatigue syndrome.

We asked about management courses and self-management that employed CBT, GET or Pacing approaches and we also canvassed the views of those who had not been offered a course, had been refused a course, or had not taken up a course recommendation.

The survey was split into three parts – one each for CBT, GET and Pacing – asked 228 questions in total and was completed by 1428 respondents (though not every question was completed by every respondent).

Part 1 is concerned with responses from those who had received a positive diagnosis from a health professional, had undertaken one-to-one or group course (whether or not they had fully completed the recommended number of sessions); and had indicated both the severity of their illness before and after their course, and whether or not their course was appropriate to their needs.

Of these respondents, 493 had been on a CBT course, 233 on a GET course and 226 on a Pacing course. Some had been on separate courses for more than one therapy, others had been on courses comprising multiple therapies.

Part 1 comprises 120 pages of quantitative analysis (looking at the data from various perspectives), 10 pages of conclusions and recommendations and is accompanied by 140 pages of qualitative data (non-numerical data which relates to the written descriptions of respondent’s experiences).
 
D

Dolphin

Senior Member
Messages
17,567
BurnA

BurnA

Senior Member
Messages
2,087
Is it likely that some powerful BPS proponents are on the expert panel, and therefore it doesn't really matter what the submissions say?

Reading the blurb from NICE in iimes article


Evidence has been identified of important ongoing research in this area – for example a UK trial of internet-based cognitive behavioural therapy in children and young adults (FITNET).
This guideline therefore no longer meets the static list criteria.
NICE also state -
We propose to liaise with Cochrane about the possibility of updating a Cochrane review from 2008 on cognitive behavioural therapy for chronic fatigue syndrome in adults to include data from the ‘Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation’ (PACE) trial. A further review of the guideline may be considered following publication of the updated Cochrane review. "


There seems to be something fishy going on. Only someone heavily connected to the BPS would comeout with that drivel.
 
MeSci

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
charles shepherd said:
This is the negative response from NICE to the MEA request for details of membership of the expert group that concluded that there is no need to update the NICE guideline on ME/CFS

I suspect that the same line will now be taken with the FoI request for details of the membership of this group….

CS

Dear Dr Shepherd,

Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding our guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (CG53).


In reaching our provisional decision the surveillance review team undertook extensive searches to identify any new primary and secondary studies, including any economic studies. The focus is on the scope of the published guideline, but any additional areas or changes in practice that are identified during the process are also considered, if they fall within the referral of the published guideline. A literature search is conducted across a range of sources, selected according to their relevance to the topic and are based on those used in the published guideline.



We can’t provide the names of the surveillance team but it is made up of a Technical Analyst, Technical Adviser, Clinical Adviser and the Associate Director – Surveillance.



Topic experts, including members of the original guideline committee, are asked for their opinion, in their personal capacity, on the relevance of the published guideline, recent developments in the topic area and their knowledge of any new important evidence since publication of the guideline. Guideline committees are responsible for the development of guidelines and we publish the membership of them. We do not routinely publish the identities of topic experts because, while they may express an opinion, they are not part of the decision making body.


The review proposal is made by the review team and the decision on whether to update the guideline is made by our Guidance Executive. The Guidance Executive considers and signs off guidance and implementation for publication. It meets every week and is made up of NICE executive directors, guidance centre directors and the communications director. Its current membership can be found on the NICE website.


I hope this information has answered your question.



Kind regards,



Alex



Alexander Smith

Communications Executive (Corporate Communications)

National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom
Click to expand...
An observation on membership of Guidance Executive:

Professor Gillian Leng - visiting professor at King's College London.

KCl CFS staff: https://www.kcl.ac.uk/innovation/groups/projects/cfs/staff.aspx (may be relevant, may not)

Not sure if there were any more - brain has packed up.
 
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