UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

[Barry]

Yes, of course there's a difference between factually and ethically wrong. I was talking about the former, as in, 'does it say what the guideline says?'.

Yes and no . It is untruthful by omission, and that is still untruthful.

The number of times in my life I have heard people claiming to be "honest" because they have only told the truth, but in fact have been lying by omission. Telling only the truth is not good enough, you have to tell enough of the truth to be sure to not mislead - if you do that deliberately then you are lying by omission. If a court of law deems that behaviour to be untruthful, then there is a very good reason for it.

A completely imaginary but valid example I sometimes cite. Suppose Mrs B's car suddenly swerves onto the pavement, and almost runs Mr C over. Mr C then goes round telling everyone about this, only too glad of the chance to take a pop at Mrs B, who he has never got on with. Very soon the whole village is up in arms about it, and Mrs B is the pariah of the neighbourhood. But then amongst all the rumour-mongering, Mr D then says "I know it must have been terrifying for Mr C - I saw what happened, but thank goodness Mrs B reacted so quickly, else she would have run that poor child over who darted out in front of her! Didn't Mr C say anything about that?"

The point being Mr C only ever told the truth - just not enough of it to be honest.

 

[Hutan]

Yes and no . It is untruthful by omission, and that is still untruthful.

The number of times in my life I have heard people claiming to be "honest" because they have only told the truth, but in fact have been lying by omission. Telling only the truth is not good enough, you have to tell enough of the truth to be sure to not mislead - if you do that deliberately then you are lying by omission. If a court of law deems that behaviour to be untruthful, then there is a very good reason for it.

Sure, but the discussion started around whether the RCPCH had misrepresented the guideline on several particular issues, two as shown in bold here, and one about patient choice:

If a person with ME/CFS takes up the offer of a personalised physical activity or exercise programme, agree a programme with them that involves the following and review it regularly:
[..]

• making flexible adjustments to their physical activity (up or down as needed) to help them gradually improve their physical abilities while staying within their energy limits

And they didn't - they quoted the guideline. They were factually correct on that, and that's what I was referring to. The reason it's a point worth making is that if we are to criticise the RCPCH, or ask them to amend their advice, we need to tackle them on what they misrepresented or omitted.

As Sarah said:

But, I personally think it reasonable to consider the language in that particular statement consistent with the recommendation I quoted. RCPCH have not written that a programme will "increase abilities", they have written "improve abilities". It's difficult to fault the quoting of text from the guideline itself. The RCPCH page does include quotes of the recommendations in text boxes, including 1.11.10 re only offering if the patient is ready or would like to incorporate an activity programme.

They also were fine about informing their members that patients have choice. They quoted the part of the guideline that makes it clear that the patient gets to decide.

Where the RCPCH was most wrong, factually, ethically, weaselly, whatever, was in their omitting of section 1.11.14 and by not making it clear that exercise therapy as a cure is not supported by evidence, and that exercise therapies based on theories of deconditioning and exercise avoidance must not be offered.

 

[Barry]

It's difficult to fault the quoting of text from the guideline itself.

I think it is profoundly at fault, by deliberately excluding section 1.11.14 - it includes an important cross-reference to 1.11.13. Speaking untruthfully, even by omission, is profoundly wrong, especially if there is deliberate intent to mislead or deceive - that then becomes highly unprofessional, maybe even illegal?

 

[Barry]

And they didn't - they quoted the guideline. They were factually correct on that, and that's what I was referring to. The reason it's a point worth making is that if we are to criticise the RCPCH, or ask them to amend their advice, we need to tackle them on what they misrepresented or omitted.

I do not accept that it is "factually correct" to only partially quote something, when salient facts are deliberately not quoted. It is not factually correct to only partially quote the salient facts - no court of law would let someone get away with that.

 

[Sarah]

I agree there are a number of problems with the RCPCH GET view and advice for paediatricians, including:

- the suggestion paediatricians have been doing guideline compliant GET all along,
- the scope for "individualised approach" to be interpreted as the reader pleases,
- "gradually improve physical abilities" being neither qualified with "while staying within their energy limits" nor accompanied by mention of flexible adjustments (up or down),
- the lack of clarity as to what "this change" specifically refers, and generally understating the extent of change to this aspect of management,
- applying the term GET both to programmes that should no longer be used and programmes they will continue to offer,
- failing to refer to the do not offer recommendations,
- suggesting there is still controversy re use of GET

If it is designed to 'improve physical abilities' there is a claim of some therapeutic efficacy, which we do not have.

I admit that I think the guideline gets muddled here but the objective here is to help people make the most of their abilities and improve them.

Do you consider there to be an issue with the drafting of bullet 4 of 1.11.13, or only with the RCPCH use of the guideline language, "gradually improve physical abilities" because certain context is omitted?

1.11.13 If a person with ME/CFS takes up the offer of a personalised physical activity or exercise programme, agree a programme with them that involves the following and review it regularly:
- establishing their physical activity baseline at a level that does not worsen their symptoms
- initially reducing physical activity to be below their baseline level
- maintaining this successfully for a period of time before attempting to increase it
- making flexible adjustments to their physical activity (up or down as needed) to help them gradually improve their physical abilities while staying within their energy limits
- recognising a flare-up or relapse early and outlining how to manage it.

 

[Barry]

Do you consider there to be an issue with the drafting of bullet 4 of 1.11.13, or only with the RCPCH use of the guideline language, "gradually improve physical abilities" because certain context is omitted?

That bullet point, as you have noted, says:

making flexible adjustments to their physical activity (up or down as needed) to help them gradually improve their physical abilities while staying within their energy limits

And in the glossary the definition of "energy limit" is:

Energy limit
The amount of energy a person has to do all activities without triggering an increase or worsening of their symptoms.

So the guideline is unequivocal on this, providing all the words are heeded.

And section 1.11.14 has specific exclusions to reinforce this.

 

[Barry]

The following link touches on the issue of factual accuracy in the context of medical care. So I'm citing this primarily with regard to the issue of factual accuracy, and especially regarding omission of salient facts. Other than that, I'm not claiming the context is directly relevant.

https://www.hcrlaw.com/blog/what-ips-need-to-know-about-factual-accuracy-checks/

The factual accuracy checking process gives the service provider and the IP the opportunity to tell the CQC:-

• Where information is factually incorrect
• Where the evidence used by CQC in the report may be incomplete.

The process gives both inspectors and providers the opportunity to ensure that they see and consider all relevant information that will form the basis of the CQC’s findings. It enables providers and inspectors to consider all the relevant information contributing to the overall ratings.

[my bold]

My assumption here is that factual accuracy and factual correctness are synonymous.

 

[Sarah]

by deliberately excluding section 1.11.14 - it includes an important cross-reference to 1.11.13.

Context may be omitted, the point is you cannot fault them on specific language if it is taken directly from the guideline. As Hutan points out, criticisms made of the RCPCH or any body or service should ideally be as accurate as possible.

 

[Keela Too]

Cherry picking is not in the spirit of the guideline.

 

[Barry]

Context may be omitted, the point is you cannot fault them on specific language if it is taken directly from the guideline. As Hutan points out, criticisms made of the RCPCH or any body or service should ideally be as accurate as possible.

It is more than just context that is being omitted. It is fact that the guideline specifically states exclusions in 1.11.14, and the RC have explicitly failed to mention that fact, even though that section explicitly references the section that they have included.

Cherry picking is not in the spirit of the guideline.

Agreed. But I would argue it goes beyond not being in the spirit of the guideline. If I were in court as a witness, and I failed to disclose material facts, I would not merely be deemed to not be speaking in the spirit of the law - I would have broken the law.

I think this sort of cherry picking contravenes the guideline. Else what else might I be allowed to just cherry pick, and it still be deemed "OK". I could chop out most of it, and just pick a few odd paragraphs that I liked.

 

[Keela Too]

Yes! I agree!

Omission changes everything.

We actually had debates about inserting qualifiers in every recommendation, but it was pointed out that this would make the guideline unwieldy (& it would too). It was pointed out that the existence of the other recs should be sufficient to make things clear.

 

[Jonathan Edwards]

Context may be omitted, the point is you cannot fault them on specific language if it is taken directly from the guideline.

I agree with Barry that you absolutely can fault them. Selective use of specific language is not necessarily legitimate.

'Pull the red lever' might be an exact quote from a notice that says 'In case of fire pull the red lever'.

Do you consider there to be an issue with the drafting of bullet 4 of 1.11.13, or only with the RCPCH use of the guideline language, "gradually improve physical abilities" because certain context is omitted?

Yes, I think this bit has no business in the guideline. It is only just about acceptable because the rest of the guideline puts a context on it and it may be that without it the guideline committee would have broken up and never produced anything.

I personally cannot see why anyone with ME needs an exercise programme. If they cannot cope with normal daily activities there is no sense in doing exercises instead. I can just about see that if people recovering from ME are very keen to do sporting activities they could be advised on how to go about it but if they are well enough to do that I am not sure why they need a therapist.

And I cannot really say the guideline is wrong to talk about 'if person takes up an offer of physical activity'. As far as I can see it does not actually recommend offering that, although it is sort of implicit.

Putting things another way, if the RCPCH people had understood the implications of the de-recommendation of GET and the arguments it is based on then they would not have picked on the red herring of 'fixed increments'. The fixed increment statement certainly has no business in the guideline because there is absolutely no evidence for the problem being with the fixedness of the increments.

 

[Barry]

I agree with Barry that you absolutely can fault them. Selective use of specific language is not necessarily legitimate.

'Pull the red lever' might be an exact quote from a notice that says 'In case of fire pull the red lever'.

Do you consider there to be an issue with the drafting of bullet 4 of 1.11.13, or only with the RCPCH use of the guideline language, "gradually improve physical abilities" because certain context is omitted?

Yes, I think this bit has no business in the guideline. It is only just about acceptable because the rest of the guideline puts a context on it and it may be that without it the guideline committee would have broken up and never produced anything.

I personally cannot see why anyone with ME needs an exercise programme. If they cannot cope with normal daily activities there is no sense in doing exercises instead. I can just about see that if people recovering from ME are very keen todo sporting activities they could be advised on ho to go about it but if they are ell enough to do that I am not sure hy they need a therapist.

And I cannot really say the guideline is wrong to talk about 'if person takes up an offer of physical activity'. As far as I can see it does not actually recommend offering that, although it is sort of implicit.

Putting things another way, if the RCPCH people had understood the implications of the de-recommendation of GET and the arguments it is based on then they would not have picked on the red herring of 'fixed increments'. The fixed increment statement certainly has no business in the guideline because there is absolutely no evidence for the problem being with the fixedness of the increments.

Absolutely this.

 

[rvallee]

Yes! I agree!

Omission changes everything.

We actually had debates about inserting qualifiers in every recommendation, but it was pointed out that this would make the guideline unwieldy (& it would too). It was pointed out that the existence of the other recs should be sufficient to make things clear.

Almost like it would have required two versions of the guidelines, one that uses painfully legalese language that explicitly spells out every loophole that will be attempted, and another one in plainer language that leaves out those between-the-line details to the full legalese version.

It's never a good sign to need that much painfully precise language, but frankly it seems necessary because of an excess of precedent. And it would probably need to be explicitly made clear that this is about the psychiatry exemption, precisely because of how excessively that exemption has been abused. So a bit like how LP had to be named and shamed directly, because of the excess of precedent. It's humiliating but necessary. If you don't want to be scolded for abusing a loophole, don't abuse that loophole, this is not rocket surgery.

But then again none of this matters without enforcement, basically 99% of any text that spells out what is and isn't allowed.

 

[adambeyoncelowe]

That bullet point, as you have noted, says:

And in the glossary the definition of "energy limit" is:

So the guideline is unequivocal on this, providing all the words are heeded.

And section 1.11.14 has specific exclusions to reinforce this.

Exactly. And that was the intent.

Cherry picking is not in the spirit of the guideline.

I confirm this.

Yes! I agree!

Omission changes everything.

We actually had debates about inserting qualifiers in every recommendation, but it was pointed out that this would make the guideline unwieldy (& it would too). It was pointed out that the existence of the other recs should be sufficient to make things clear.

Precisely.

 

[Hutan]

I think a number of posts are at cross purposes and inadvertently creating straw men arguments. Comments that members, including myself, made about very specific points have been responded to as if they applied to the whole document. I don't think anyone thinks that the RCPCH summary of the guideline for their members is okay. We are in fierce agreement that it's deeply flawed.

Of course 1.11.14 should not have been omitted when the 1.11.10 to 1.11.13 clauses were included. Yes, very important information was left out. I first said that here:

Where I think the RCPCH inaccurately reports the NICE ME/CFS Guideline, both factually and ethically, is related to 1.11.14, which the RCPCH guidance does not reproduce (while reproducing 1.11.10 to 1.11.13):

Hopefully the points Sarah made can be conveyed to the RCPCH somehow:

I agree there are a number of problems with the RCPCH GET view and advice for paediatricians, including:

- the suggestion paediatricians have been doing guideline compliant GET all along,
- the scope for "individualised approach" to be interpreted as the reader pleases,
- "gradually improve physical abilities" being neither qualified with "while staying within their energy limits" nor accompanied by mention of flexible adjustments (up or down),
- the lack of clarity as to what "this change" specifically refers, and generally understating the extent of change to this aspect of management,
- applying the term GET both to programmes that should no longer be used and programmes they will continue to offer,
- failing to refer to the do not offer recommendations,
- suggesting there is still controversy re use of GET

As I noted above, I'd add to that list
- suggesting that young people who meet ME/CFS diagnostic criteria including PEM but who developed their illness after a particular infection should not be managed under the guideline.

 

[Sarah]

I agree with Barry that you absolutely can fault them. Selective use of specific language is not necessarily legitimate.

'Pull the red lever' might be an exact quote from a notice that says 'In case of fire pull the red lever'.

As I see it, the point is that if RCPCH were criticised for referring to an individualised approach to gradually improve physical abilities, they may simply point to 1.11.13 and dismiss such criticism out of hand. It may be selectively quoted, that does not change that it is not inconsistent with what the guideline says. The RCPCH briefing does not contradict the guideline recommendation that such programmes require staying within energy limits as others seem to be implying, nor does it explicitly refer to it. The briefing might be rightly criticised for failing to provide an accurate picture of what an activity or exercise programme 'should' look like to be guideline compliant, and failing to clarify what should not be offered, certainly.

Yes, I think this bit has no business in the guideline.

We agree here. For CBT, it may similarly be said CBT may be offered to manage symptoms or improve functioning, for which there is no evidence either. This was presumably another example of such a compromise. I haven't downloaded the briefing PDF, but if it is the same as the webpage, there is no mention whatsoever of significant guideline areas including, energy management, CBT, or recommendations on severe or very severe, for instance.

And I cannot really say the guideline is wrong to talk about 'if person takes up an offer of physical activity'. As far as I can see it does not actually recommend offering that, although it is sort of implicit.

Yes, it's a consider recommendation. One of the feedback items made in the submission of errors:

Page 27: Although they are not used in direct recommendations to offer an intervention, inclusion of the words 'offered' and 'offer' in 1.11.12 and 1.11.13 respectively do not comply with the requirement that the wording reflect the strength of the recommendation (Developing NICE guidelines: the manual [PMG20], 9.2 Wording the recommendations) and erroneously create the impression there is evidence to support offering such programmes.

Crossposted with Hutan.

 

[Jonathan Edwards]

As I see it, the point is that if RCPCH were criticised for referring to an individualised approach to gradually improve physical abilities, they may simply point to 1.11.13 and dismiss such criticism out of hand.

Indeed, I was not suggesting that any reply to RCPCH would focus on any particular statement. I have no particular thoughts about what one might write to them but it might be something like:

Would the RCPCH agree that the briefing document fails to take into account the broad message of the guideline that exercise should not be used as a means to increase physical abilities because there is no evidence to indicate that it can?

 

[Tony]

Does PG hve tips on how to produce non sticky mud that he could share.

 

[dave30th]

'Pull the red lever' might be an exact quote from a notice that says 'In case of fire pull the red lever'.

In an entertaining but completely unrelated example of this, The New York Times wrote a few years ago that the first sentence of the racist bilge, Gone wth the Wind, was "Scarlett O'Hara was not beautiful."

I wrote to the Times requesting a correction, since the first sentence is actually: "Scarlett O'Hara was not beautiful, but men seldom realized it when caught by her charm as the Tarleton twins were." (Don't ask how I remembered this. I have no idea.)

They ignored me. But quoting half a first sentence and then pretending it is the full first sentence is 100% inaccurate. It is not 50% right. Same argument here. Quoting half the truth is often not half-true.