NICE ME/CFS guideline - draft published for consultation - 10th November 2020

[Suffolkres]

I think a lot of us realise a change to the NICE guidelines isn’t going to of itself result in some kind of root and branch overhaul of how people with ME are dealt with or not dealt with by the NHS @Suffolkres. It is about removing that particular excuse for not changing the status quo. Other roadblocks do exist and will need to be addressed through more advocacy. But if the guidelines had remained as they were the brick wall was extremely solid.

ps is there a link to a LocalME website?

Sadly, there isn't, as the late wonderful Connie Nelson set up LocalME on Yahoo groups in about 2005 as a closed 'safe' community for Local Group coordinators to provide feedback and local advocacy. Connie was ably assisted by others, some sadly who have also passed recently.
(We all left 'IMEGA' Sussex ....tired of the direction of travel and musings of certain individuals)

This Autumn, a desperate need was fulfilled by transferring to Groups io (thanks to Von and others) as Yahoo had summarily dismissed such groups and wiped their archive material.....

Before Connie died, in 2018 we managed to get NICE to accept LocalME as a forum stakeholder. ( I WAS accepted and registered as a Stakeholder in 2017 by NICE under our Suffolk Youth & Parent Support Group- but during the London engagement meeting with Prof Mark Baker, 'Not so NICE' HR came up and said NICE had 'made a mistake' and my group did not meet their test as a stakeholder- so I could 'b' off!

I have to add, mine wasn't the only group summarily dismissed during that meeting!

So LocalME are a 'national" NICE recognised Group currently feeling their way in a new forum arrangement and struggling with this NICE response!

Many LocalMEers represent other interests- or volunteer to help others like the 25% Group and other local/regional set ups.

LocalMe is where we come together in a secure and safe place to air our thoughts, chew the cud, plot and respond as required!

 

[Suffolkres]

I think a lot of us realise a change to the NICE guidelines isn’t going to of itself result in some kind of root and branch overhaul of how people with ME are dealt with or not dealt with by the NHS @Suffolkres. It is about removing that particular excuse for not changing the status quo. Other roadblocks do exist and will need to be addressed through more advocacy. But if the guidelines had remained as they were the brick wall was extremely solid.

ps is there a link to a LocalME website?

I totally agree!

 

[Barry]

Yeah, they're both focused on changing perceptions of the ability to engage in activity. CBT approaches that cognitively, with behavioral experiments to test out going further. GET approaches it by setting up activity experiments and using those as the basis for encouraging changes in cognition. Same overall process and concept of change but approached from different perspectives

And as you and others have said before, the CBT here is strongly targeted towards deconditioned people with flawed illness perceptions, so definitely not those with properly diagnosed ME/CFS.

I also think we should be wary of "ordinary" CBT, whatever that might be. For most people needing to get their lives back on track, a perfectly reasonable aspect might be to encourage some kind of activity, not simply for physical health, but for the overall wellbeing aspects of going out for a walk in the countryside for example, taking a bike ride, going swimming, etc. For pretty much anyone who does not have an energy system abnormality, these are very good strategies. I do it myself when needing to clear my head, think things through, etc. But I am concerned that the most well-meaning application of run-of-the-mill CBT for pwME could still go badly wrong. I suspect that supportive CBT might be applicable to pwME in some cases, but that the correct form of CBT is yet to be developed and tested.

So I worry when there is talk even of bog standard CBT being used for pwME in a purely supportive role, because I don't think there is enough evidence that even that is safe.

 

[Peter T]

Thank you to all who are contributing to this process here. I struggle to get my head around larger quantities of information and gain an understanding of the overall structures even when as well set out as in the threads here, which means I have contributed much less that I would have liked, so I am very grateful that others here are providing discussion and detailed analysis.

I am attempting to read all our final drafts on each section as they are posted and am most impressed by the work that we are collectively doing. However in reading these drafts two things come to mind, though they may have already been discussed and decided on in which case my apologies for stating the obvious:

- Are we being emphatic enough about what we agree with and support in the NICE draft? There are comments relating to what we agree with under each section, but could those get lost in the detail? Will there be some form of overview making clear how much we welcome the work done by the NICE Review Committee so far and stressing what we see as their key points?

- In producing such a thorough and detailed response to NICE’s draft do we risk losing a sense of which issues are the most important to us? Do we have any idea how NICE will analyse the feedback they get? Will they do what we did with detailed consideration of each section, which fits well with [what] we are trying to do in our response, or will they just look for an overall feeling or key points, which could mean they do not take as priorities from our submission what we would want them to?

 

[Trish]

Will there be some form of overview making clear how much we welcome the work done by the NICE Review Committee so far and stressing what we see as their key points?

Yes, we are doing all the individual sections first and will then finalise our general comments to go at the start of our submission. That will include postive comments and our main areas of concern.

In producing such a thorough and detailed response to NICE’s draft do we risk losing a sense of which issues are the most important to us? Do we have any idea how NICE will analyse the feedback they get? Will they do what we did with detailed consideration of each section, which fits well with we are trying to do in our response, or will they just look for an overall feeling or key points, which could mean they do not take as priorities from our submission what we would want them to?

It's hard to know what they do with it. They provide a template and our comments have to be filled as either 'general' about the whole guideline, or listed by page and line number. I imagine NICE office staff will do some sort of collating of all the comments relating to each page and line so the committee can discuss it section by section, but that's not clear in anything I have seen.

It would make more sense to me to ask us to list comments by section and subsection, rather than lines, but we have to follow their layout.

We have no idea which areas they will choose to focus on and whether we can have any influence either on details of wording, or on more major suggestions about taking a different approach to some sections. We decided to submit on the basis that, since we don't know their plans, we'll give them everything we think is important, and leave it to them to decide what to do with our submission alongside all the others.

 

[Peter T]

Yes, we are doing all the individual sections first and will then finalise our general comments to go at the start of our submission. That will include postive comments and our main areas of concern.


It's hard to know what they do with it. They provide a template and our comments have to be filled as either 'general' about the whole guideline, or listed by page and line number. I imagine NICE office staff will do some sort of collating of all the comments relating to each page and line so the committee can discuss it section by section, but that's not clear in anything I have seen.

It would make more sense to me to ask us to list comments by section and subsection, rather than lines, but we have to follow their layout.

We have no idea which areas they will choose to focus on and whether we can have any influence either on details of wording, or on more major suggestions about taking a different approach to some sections. We decided to submit on the basis that, since we don't know their plans, we'll give them everything we think is important, and leave it to them to decide what to do with our submission alongside all the others.

Thank you @Trish, that very much answers my questions and indicates S4ME is very much doing all we can, and that when completed we can just hope NICE makes good use of the stakeholders’ and commenters inputs.

 

[Barry]

Are we being emphatic enough about what we agree with and support in the NICE draft? There are comments relating to what we agree with under each section, but could those get lost in the detail? Will there be some form of overview making clear how much we welcome the work done by the NICE Review Committee so far and stressing what we see as their key points?

Yes, an extremely important observation I think. It would be highly counter productive if we inadvertently implied ambivalent support for what we don't explicitly mention, give how pleased we are with much of it. Might be wise to give some indication that, by default, the things that we do not mention are things that we very much want to remain! The very last thing that we want is for all the good that is in this draft (which is a lot) to get watered down or undermined by others.

 

[Suffolkres]

Thank you to all who are contributing to this process here. I struggle to get my head around larger quantities of information and gain an understanding of the overall structures even when as well set out as in the threads here, which means I have contributed much less that I would have liked, so I am very grateful that others here are providing discussion and detailed analysis.

I am attempting to read all our final drafts on each section as they are posted and am most impressed by the work that we are collectively doing. However in reading these drafts two things come to mind, though they may have already been discussed and decided on in which case my apologies for stating the obvious:

- Are we being emphatic enough about what we agree with and support in the NICE draft? There are comments relating to what we agree with under each section, but could those get lost in the detail? Will there be some form of overview making clear how much we welcome the work done by the NICE Review Committee so far and stressing what we see as their key points?

- In producing such a thorough and detailed response to NICE’s draft do we risk losing a sense of which issues are the most important to us? Do we have any idea how NICE will analyse the feedback they get? Will they do what we did with detailed consideration of each section, which fits well with [what] we are trying to do in our response, or will they just look for an overall feeling or key points, which could mean they do not take as priorities from our submission what we would want them to?

I have same thoughts Peter;

• 'I struggle to get my head around larger quantities of information and gain an understanding of the overall structures '/ In producing such a thorough and detailed response to NICE’s draft do we risk losing a sense of which issues are the most important to us? - Likely because so will NICE; they likely to be be overwhelmed by the 'noise'?!

• "two things come to mind, Are we being emphatic enough about what we agree with and support in the NICE draft; some form of overview making clear how much we welcome the work done by the NICE Review Committee?"

• 'Do we have any idea how NICE will analyse the feedback they get?'- No we don't but suggest we guide them to this pithy little link?! https://www.mindtools.com/pages/article/learn-from-mistakes.htm

Note:
"Making a mistake" is not the same thing as "failing." A failure is the result of a wrong action, whereas a mistake usually is the wrong action. So, when you make a mistake, you can learn from it and fix it, whereas you can only learn from a failure.

1. Own Your Mistakes

You can't learn anything from a mistake until you admit that you've made it. So, take a deep breath and admit to yours, and then take ownership of it. Inform those who need to know, apologize , and tell them that you're working on a solution.
Saying "sorry" takes courage, but it's far better to come clean than to hide your error or, worse, to blame others for it. In the long run, people will remember your courage and integrity long after they've forgotten the original mistake.If, however, they hear of it from another source, your reputation will suffer and you may not get another opportunity to learn.

Should a general NICE response/comment suggest this?
3. Analyze Your Mistake

Next, you need to analyze your mistake honestly and objectively. Ask yourself the following questions:

What was I trying to do?
What went wrong?
When did it go wrong?
Why did it go wrong?
Our article, 5 Whys

Conducting this "postmortem" should reveal what led to the mistake, and highlight what needs to change in order to avoid a repeat.

 

[MeSci]

Just want to add that I don't feel able to contribute to the consultation either, although a few years ago I could have very well. I'm reassured that others are taking it on, and doing extremely well from what I am able to take in.

 

[Andy]

I have same thoughts Peter;

• 'I struggle to get my head around larger quantities of information and gain an understanding of the overall structures '/ In producing such a thorough and detailed response to NICE’s draft do we risk losing a sense of which issues are the most important to us? - Likely because so will NICE; they likely to be be overwhelmed by the 'noise'?!

• "two things come to mind, Are we being emphatic enough about what we agree with and support in the NICE draft; some form of overview making clear how much we welcome the work done by the NICE Review Committee?"

As Trish says in response to Peter's post.

Yes, we are doing all the individual sections first and will then finalise our general comments to go at the start of our submission. That will include postive comments and our main areas of concern.

I would also argue that describing our submission as 'noise' is unhelpful, especially when it is being set out in a very clear way. And questioning the Guideline committee's ability to take on board the points raised in our submission isn't that helpful either.

'Do we have any idea how NICE will analyse the feedback they get?'- No we don't but suggest we guide them to this pithy little link?! https://www.mindtools.com/pages/article/learn-from-mistakes.htm

I don't think that trying to school NICE on how to lean from mistakes will encourage them to be open to taking on board the points in our submission. I would be disappointed if we included any attempt to do so in our submission.

 

[Suffolkres]

As Trish says in response to Peter's post.

I would also argue that describing our submission as 'noise' is unhelpful, especially when it is being set out in a very clear way. And questioning the Guideline committee's ability to take on board the points raised in our submission isn't that helpful either.


I don't think that trying to school NICE on how to lean from mistakes will encourage them to be open to taking on board the points in our submission. I would be disappointed if we included any attempt to do so in our submission.

Sorry Andy. I apologise if you thought I was directing the word "noise" at S4 ME submission. I was not.
Nothing could be further from the truth, and I knew how much consideration and effort and professionalism you have put into it.


By 'noise' I meant the likely shear volume of responses, individuals, rather than formal stakeholders, those in total from the wider community and some who reflect understandably, a very angry stance. I am aware others fear the same situation may arise and make NICE very defensive.

I have read several drafts offered by others recently which I feel may make NICE and/or the committee switch off, as they will be overwhelmed by the emotions expressed and the intensity of feeling in the short time frame they have available.

I too am guilty of the above, as I have lost all faith in NICE and it's culture; of it's mistakes + failure of due process, (together with the RCP mistakes) resulting in 13 years of trauma and harm for so many.
I was clumsily saying that perhaps less rather than more may help get where we want this to be.

 

[Barry]

Sorry Andy. I apologise if you thought I was directing the word "noise" at S4 ME submission. I was not.
Nothing could be further from the truth, and I knew how much consideration and effort and professionalism you have put into it.


By 'noise' I meant the likely shear volume of responses, individuals, rather than formal stakeholders, those in total from the wider community and some who reflect understandably, a very angry stance. I am aware others fear the same situation may arise and make NICE very defensive.

I have read several drafts offered by others recently which I feel may make NICE and/or the committee switch off, as they will be overwhelmed by the emotions expressed and the intensity of feeling in the short time frame they have available.

I too am guilty of the above, as I have lost all faith in NICE and it's culture; of it's mistakes + failure of due process, (together with the RCP mistakes) resulting in 13 years of trauma and harm for so many.
I was clumsily saying that perhaps less rather than more may help get where we want this to be.

I understand where you are coming from, but I think that having come this far then we just have to go for it. A key characteristic of our S4ME submission is that it is objective, not emotive. It's a difficult call, but I think that if S4ME submitted anything that skimped on detail then we would be doing the ME/CFS community a disservice. I think S4ME's reputation is such now that a comprehensive submission will be presumed and expected ... hopefully that will then warrant it being given the attention it deserves.

 

[NelliePledge]

I understand where you are coming from, but I think that having come this far then we just have to go for it. A key characteristic of our S4ME submission is that it is objective, not emotive. It's a difficult call, but I think that if S4ME submitted anything that skimped on detail then we would be doing the ME/CFS community a disservice. I think S4ME's reputation is such now that a comprehensive submission will be presumed and expected ... hopefully that will then warrant it being given the attention it deserves.

Agree @Barry

the NICE guidelines manual makes it clear that different types of response will be received and that all points should be considered https://www.nice.org.uk/process/pmg...process-and-dealing-with-stakeholder-comments

 

[Gecko]

Yes, we are doing all the individual sections first and will then finalise our general comments to go at the start of our submission. That will include postive comments and our main areas of concern.


It's hard to know what they do with it. They provide a template and our comments have to be filled as either 'general' about the whole guideline, or listed by page and line number. I imagine NICE office staff will do some sort of collating of all the comments relating to each page and line so the committee can discuss it section by section, but that's not clear in anything I have seen.

It would make more sense to me to ask us to list comments by section and subsection, rather than lines, but we have to follow their layout.

We have no idea which areas they will choose to focus on and whether we can have any influence either on details of wording, or on more major suggestions about taking a different approach to some sections. We decided to submit on the basis that, since we don't know their plans, we'll give them everything we think is important, and leave it to them to decide what to do with our submission alongside all the others.

Just to say that this is exactly what they did with comments on the scope 2 years ago. If you look at the scope consultation document you'll then see they are ordered by page and line number so that comments from different organisations in the same points are collated next to each other.

It is therefore important just to repeat yourselves if necessary rather than refer to any other comments made earlier.

NICE then provide responses to each comment from a stakeholder. These are often but not always standardised. They do not supply responses to individual submissions, but will take these into account.

Check out the scope consultation and response from NICE here to understand the format: https://www.nice.org.uk/guidance/gid-ng10091/documents/consultation-comments-and-responses-2

I agree that giving a full response is important, and not to cut down to just "main points" - there is nothing to say others will do this and a shorter response just means your voice will be quieter within all the mass of responses they get.

Plus multiple organisations picking up on seemingly small things is more likely to get them changed I woulda thought.

Fab work btw team, I know this is very much a slog!

 

[MSEsperanza]

I'm reassured that others are taking it on, and doing extremely well from what I am able to take in.

Just want to echo the thanks and appreciation for the team work so far. I'm very very very impressed.

Sorry that I won't manage to read much before 15 December, but will try my best to read as much as possible.

 

[Sly Saint]

further blog from Valerie Eliot-Smith
NICE, the media and the cultural problem of myalgic encephalomyelitis (ME)
December 14, 2020
https://valerieeliotsmith.com/2020/...ural-problem-of-myalgic-encephalomyelitis-me/

 

[Tom Kindlon]

 

[lunarainbows]

I just wanted to say thank you to S4ME for taking on board my points in the Access to Care section in your submission that you posted. I was too late to write it in the thread as it got locked. Especially with my current experiences in hospital. Whenever I get sad I’ve been thinking of that. I felt like even if things are really bad now, there’s something really good coming round the corner. The NHS might want to try to pretend it’s only draft now so they don’t have to take it on board, but when it becomes real guidelines and if the right changes are made to the already very good sections, things will have to change because it can’t be ignored anymore. So one day all of our fighting will be vindicated. Including mine!

Really brings me a lot of hope for when April comes. Maybe more than you realise and I often think of the S4ME members who are on the NICE guideline committee a lot too, you’ve helped so many people and me too. thank you x a million

 

[Ravn]

Fab work btw team, I know this is very much a slog!

and I often think of the S4ME members who are on the NICE guideline committee a lot too, you’ve helped so many people and me too. thank you x a million

This!
Really I think NICE should have just left it to you guys to write the guidelines from the start but that not being an option I'm very, very grateful to everyone who's worked/is working so hard at making sure we get the best possible guidelines. Thanks!

 

[adambeyoncelowe]

Thank you! The end is in sight.