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

[Barry]

I also think we need to be realistic in our feedback to NICE. They are not going to completely rewrite the guideline, and I suspect are unlikely to either add or delete whole sections.

What we can try to do is to get them to refine the wording so it avoids loopholes for the BPS people to continue what they are doing and pretending it's covered in the guideline.

I hope we will also be able to persuade them to give a clearer picture of just how disabling even mild ME is, and what a wide range of difficult, disabling and unpleasant symptoms we contend with every day even when successfully staying within our energy envelope.

Absolutely agree with this.

What we have already with this draft is very impressive - better than most dared hope for in truth. Tweaking to close off serious loopholes seems achievable. Trying to go beyond the realistic in search of perfection would be needlessly very high risk, when the necessary changes are attainable with negligible risk. How could we look at people afterwards it we got it badly wrong, and the final guideline ended up a huge step back from all the good in this draft, because we could not be pragmatic.

 

[ME/CFS Skeptic]

In my view, the NICE guideline draft makes a lot of useful recommendations and is a step in the right direction.

But there's always room for improvement. I wrote down a critique of the draft, with suggestions on how the document can be further improved. Interested in hearing other people's opinion on this.

https://mecfsskeptic.wordpress.com/...ine-draft-some-things-that-could-be-improved/

 

[Trish]

In my view, the NICE guideline draft makes a lot of useful recommendations and is a step in the right direction.

But there's always room for improvement. I wrote down a critique of the draft, with suggestions on how the document can be further improved. Interested in hearing other people's opinion on this.

https://mecfsskeptic.wordpress.com/...ine-draft-some-things-that-could-be-improved/

@Michiel Tack, will you be adding your suggestions to our threads here for each section so we can discuss them there and feed them into our forum response? I think it would be better not to start up a discussion of your suggestions about specific points on this thread where they will get lost in the general discussion. We really need to keep discussion of specifics on the relevant threads.

I don't know whether, as a non UK resident, you would be able to give individual feedback directly to NICE.

 

[Barry]

If I could be bothered, I'd be asking all of these 'medical experts' if they are arguing that we shouldn't believe in the recommendations from all NICE guidelines, given that they are arguing that the review process isn't valid in this particular case. And if they are arguing that it is only this guideline review process that shouldn't be trusted, what about the process was incorrect and why should we have trusted it before?

Yes, it is interesting that whenever anyone or any organisation speaks unfavourably of their science, they invariably attack the critic, not the scientific arguments. It seems it is NICE's turn now. Ironic really, given the 2007 guideline was influenced much more by bad eminence-driven "science".

Dr Alastair Miller, Deputy Medical Director at the Joint Royal Colleges of Physicians Training Board (JRCPTB), said:

It is therefore extremely disappointing that NICE has chosen to exclude them from the updated guidelines and I certainly have concerns that this omission is based more on political pressure than good science.

Prof Peter White, Emeritus Professor of Psychological Medicine, Queen Mary University of London, said:

“NICE is usually commended by being led by the science. It is therefore a great surprise that this guideline proscribes or qualifies treatments for CFS/ME for which there is the best evidence of efficacy, namely graded exercise therapy (GET) and cognitive behaviour therapy.

Possibly an own-goal on their part, being how it very usefully amplifies to NICE the very behaviours of theirs we have been speaking of for so long.

 

[lunarainbows]

Absolutely agree with this.

What we have already with this draft is very impressive - better than most dared hope for in truth. Tweaking to close off serious loopholes seems achievable. Trying to go beyond the realistic in search of perfection would be needlessly very high risk, when the necessary changes are attainable with negligible risk. How could we look at people afterwards it we got it badly wrong, and the final guideline ended up a huge step back from all the good in this draft, because we could not be pragmatic.

To be fair, the only people who can decide what is achievable or realistic or not, are the people on the NICE guideline committee, not us. And they are not allowed to write here about their opinions on these topics.

 

[MEMarge]

This seems a rather important point. It may be useful to make this point in one of the subforums dedicated to discussing changes or tighter language for the draft.

I'm not sure where that should be.

I have heard this reference to central sensitisation in pain and maybe fatigue.
Have people had this response widely in clinics?

It will definitely be a good question for the PSP, ie what biomedical evidence is there that PwME have increased sensitivity to peripheral and central sensations.

For me the inflammation of dorsal root ganglia from post -mortem studies gives a physiological explanation for the extreme magnification of touch/smell/sound etc in people with severe ME.

Edit:typo

 

[Sly Saint]

I hope we will also be able to persuade them to give a clearer picture of just how disabling even mild ME is, and what a wide range of difficult, disabling and unpleasant symptoms we contend with every day even when successfully staying within our energy envelope.

But we shouldn't have to. The difference between the MS guidelines and those for ME/CFS show that they are coming from two very different angles.
MS as a recognised serious incurable neurological illness regardless of severity and ME as this kind of nebulous, 'is it an illness or isn't it' which has so many falsly deeply embedded links to psychiatry that have become part of everything that defines it.

From the way it is classified with mild, moderate and severe, to the definitions of recovery, and the way 'improvement' is measured.
All that seems to be happening is that every time we try to define symptoms in an effort to

give a clearer picture of just how disabling even mild ME is, and what a wide range of difficult, disabling and unpleasant symptoms we contend with every day even when successfully staying within our energy envelope.

they appropriate the terms used and present their own explanation.
This has gone from the use of 'fatigue', to 'PEM' being equated to post-exertional fatigue, 'energy envelope' being used as a new term for 'baseline' to help patients increase activity (GET?) and so on.

In the TWIV discussion recently posted on another thread, David Tuller was trying to explain to his american colleagues about this grip that psychiatry has over ME in the UK and its implications for other chronic illnesses added to the MUS category.

I think this current rewrite of the guidelines should be viewed as 'round one'.

Getting PACE and similar largely excluded from the evidence was huge. But it is still all there available to access and influence, as are its proponents.

Given the current situation re 'long-covid' and the research being carried out and the whole issue of 'post-viral syndromes' being raised I would hope that a recommendation is made that once the new guidelines for ME/CFS are published that
a) all references across the NHS be changed to reflect the changes in the guidelines including the name.
b) all materials, including treatment and training courses also reflect the changes.
c) that ME/CFS be removed from MUS, be officially classified and included under neurology.
d) any new biomedical developments made within the research of 'long-covid' that may be applicable to ME/CFS be replicated with ME/CFS patients.

We have a long way to go.

 

[Barry]

To be fair, the only people who can decide what is achievable or realistic or not, are the people on the NICE guideline committee, not us. And they are not allowed to write here about their opinions on these topics.

Don't entirely agree. Yes, they can only make final decision, but that decision could go the wrong way if we badly misjudge. There's a gamble involved, because you don't get to make a submission with the option to keep resubmitting if it has the wrong effect. So there is a real decision process in deciding what to submit ... and what not to.

To take two hypothetical (and not for a moment suggesting we actually do!) extremes, which is a useful way of approaching things sometimes.

1. Everyone recommends no changes be made. That would be a dead cert to be acceptable to NICE. Virtually zero risk. Bad idea from our perspective.
2. Everyone recommends the whole thing be scrapped and rewritten from scratch. Total non-starter. Extremely high risk. Even worse idea.

So obviously the viable reality is somewhere in between. Given that so much of what we want is already in the daft, then it makes good sense for our submission to lean much more towards '1' than towards '2'.

 

[lunarainbows]

Don't entirely agree. Yes, they can only make final decision, but that decision could go the wrong way if we badly misjudge. There's a gamble involved, because you don't get to make a submission with the option to keep retrying it if has the wrong effect. So there is a real decision process in deciding what to submit.

To take two hypothetical (and not for a moment suggesting we actually do!) extremes, which is a useful way of approaching things sometimes.

1. Everyone recommends no changes be made. That would be a dead cert to be acceptable to NICE. Virtually zero risk. Bad idea from our perspective.
2. Everyone recommends the whole thing be scrapped and rewritten from scratch. Total non-starter. Extremely high risk. Even worse idea.

So obviously the viable reality is somewhere in between. Given that so much of what we want is already in the daft, then it makes good sense for our submission to lean much more towards '1' than towards '2'.

Well, yes. But no one is asking for it to be rewritten from scratch!

 

[MEMarge]

Dr Alastair Miller, Deputy Medical Director at the Joint Royal Colleges of Physicians Training Board (JRCPTB)

It is extremely worrying that a doctor with this senior training role for medics is openly contradicting draft NICE recommendations.

Dr Miller and other other key figures still promoting PACE-style therapies MUST be EXCLUDED from any further training for doctors or other healthcare professionals.

 

[Barry]

Well, yes. But no one is asking for it to be rewritten from scratch!

That's why I said hypothetical. It's just an engineering technique I'm much accustomed to when trying to understand things if they exist on a continuum. Look at the extremes, no matter how outlandish they may be, to help get a better picture of what the full range is, and then home in on what the more realistic range is within that. Sort of a thought experiment to help home in on the reality.

 

[Robert 1973]

I have just filled in the Action for ME survey here that they are using to help wtih their submission to help with the consultation. It asks relevant questions and explains them well, and has space for comments. Well worth doing.

I also think we need to be realistic in our feedback to NICE. They are not going to completely rewrite the guideline, and I suspect are unlikely to either add or delete whole sections.

What we can try to do is to get them to refine the wording so it avoids loopholes for the BPS people to continue what they are doing and pretending it's covered in the guideline.

I hope we will also be able to persuade them to give a clearer picture of just how disabling even mild ME is, and what a wide range of difficult, disabling and unpleasant symptoms we contend with every day even when successfully staying within our energy envelope.

I agree with this and have just completed the survey.

My concern is that there doesn’t appear to be any way to verify who is completing the survey – you don’t even have to give your name or email address. This means that people who are neither ME patients nor carers who have a particular agenda could complete the survey and encourage others to do likewise. I don’t know how likely this is, but given the hostility to people with ME and the strong support for CBT/GET among some medical professionals I don’t think it’s inconceivable.

 

[yME]

Ha as an ex engineer I use this proposition in life. Non engineers jump with shock and think it’s my actual position. It never fails to make me look stupid or irrational. Perhaps that’s why I retired.

 

[ME/CFS Skeptic]

@Michiel Tack, will you be adding your suggestions to our threads here for each section so we can discuss them there and feed them into our forum response?

Yes If I find the time and energy I hope to add concrete suggestions in a format that could be submitted to NICE, with mention of the specific page and line number etc. I'll try to post them in the correct thread here on S4ME.

If anyone wants to comment on things I brought up in my blog, it's best to do so in the relevant thread, as Trish mentioned.

I don't know whether, as a non UK resident, you would be able to give individual feedback directly to NICE.

I suppose so, but not sure. Does anyone happen do know if non-UK residents can submit feedback?

@Andy @adambeyoncelowe @Keela Too

 

[lunarainbows]

I also think we need to be realistic in our feedback to NICE. They are not going to completely rewrite the guideline, and I suspect are unlikely to either add or delete whole sections.

I think again, we shouldn’t second-guess what is realistic or achievable for the committee, as only they know that. They have not had any input into the discussions on the forum. We actually don’t know if they would add or delete or amend whole sections, if they got enough feedback about it, from enough stakeholders, or thought that the feedback and amendments are important enough to have a new discussion on, even if it’s from just one stakeholder.

I’ll be explicit here. I am concerned that some of many of my points - about keeping people with severe and very severe ME from harm - both in the Hospital Access to Care section 1.8, and in Managing Symptoms 1.11, which are not complete re-writes at all, but significant and important additions / closing of loopholes, are not going to be included in the submission - not because of the fact they don’t have merit, but simply because people on the forum have come to a consensus / second-guessed that the people on the committee will not be willing to even discuss or read anything that seems “too much”, even if it means that sort of thing is needed to keep the severest with ME, safe.

 

[Trish]

Thanks, @lunarainbows. I agree there is no way of us knowing what changes might be made. I am speculating on the basis of the timeline involved, and the composition of the guideline committee which won't change and who have already agreed the current version. There are only so many battles they may have had already that they will be willing to revisit.

I think if we are going to suggest deleting or adding whole sections, we could do that, but we need also to find alternative ways the existing sections can be altered to achieve a similar outcome.

I think, for example, of the section on CBT. Given that there are some CBT proponents on the guideline committee, and that a section on CBT ended up in the guideline, I can't see them at this late stage agreeing to deleting the whole of that section, much as I would like them to.

So a feedback could include both a suggestion of deleting the whole section and an alternative line by line, section by section, suggested list of amendments that would remove the worst bits and the ambiguities.

I agree more needs to be added and changes made to the severe and very severe ME sections to prevent harm. I hope we can help that to be achieved.

 

[Jim001]

I also think we need to be realistic in our feedback to NICE. They are not going to completely rewrite the guideline, and I suspect are unlikely to either add or delete whole sections.

What we can try to do is to get them to refine the wording so it avoids loopholes for the BPS people to continue what they are doing and pretending it's covered in the guideline.

Yes, i'm mostly unfamiliar with this process but I wonder where that tipping point is where more feedback becomes less, and worry we might cross it. Maybe it's better to identify the highest yield stuff and pour all our feedback capital behind those.

 

[Barry]

Yes, i'm mostly unfamiliar with this process but I wonder where that tipping point is where more feedback becomes less, and worry we might cross it. Maybe it's better to identify the highest yield stuff and pour all our feedback capital behind those.

Yes.

 

[Andy]

I suppose so, but not sure. Does anyone happen do know if non-UK residents can submit feedback?

From https://www.nice.org.uk/process/pmg...86687/chapter/commenting-on-a-draft-guideline, it says simply

We encourage individuals to comment by contacting a stakeholder organisation. If you send comments direct to us, the committee will consider them but we won't publish a response.

In the information that I have read from NICE about stakeholders and/or who can comment, I've not seen anything that limits submissions to residents of the UK. I suspect that stakeholders will be limited to UK based organisations or similar, if I remember correctly S4ME were eligible both because many of our members are from the UK, but I've not seen anything that confirms that.

 

[ME/CFS Skeptic]

In the information that I have read from NICE about stakeholders and/or who can comment, I've not seen anything that limits submissions to residents of the UK

Thanks Andy