NICE guidelines - Pacing

I don't think we have to do this, because we can only share our personal experiences with pacing and that of the fellow ME/CFS patients we know.

When it comes to advising the NICE committee, I think we should simply refer to how pacing/energy envelope theory for ME/CFS is defined in the scientific literature by researchers such as Goudsmit and Jason.

That being said, it would be an interesting debate regardless of NICE: how forum members use pacing, which parts they found usefull etc.

 

Thank you, useful points. Also helpful to have comments on the terminology.

For me it seems useful to have an fairly exhaustive list of what pacing might and might not be doing, ideally worded in fairly neutral terms (which I have not achieved). Pacing is a set of diverse self help strategies, so different people are likely to be thinking of different things within the same term, also we have a diverse set of terms and metaphors: spoons, energy envelope, boom and bust, crashes, PEM.

I guess what I was hoping from my post was not at this point to achieve a consensus on what we believe pacing is doing but an agreed range of options and terms to enable us to then ask the question what do we believe pacing might be doing.

[added, perhaps in the context of NICE it is sufficient to say that pacing is a set of self help strategies for symptom management and as such very different from any theoretically possible but unevidenced treatment options]

 

It was. I think both Goudsmit and Jason developed the principles of pacing (independently of each other) on the basis of patient input and in collaboration with patient organisations. This form of pacing has been distributed among patient organisations and has been used in research. I don't see the point of redefining pacing and demanding NICE to adopt our version, since we are only one of the many patient groups.

Like I said, it would be interesting to discuss pacing and its definition, but I don't think that will be of much use for recommendations to NICE.

To further the debate I would also suggest criticizing pacing if you don't agree with some aspects of it instead of trying to redefine it and incorporating personal preferences.

 

When it comes to pacing I have a concern about about HR monitoring. I raise it here as it was mentioned previously in the thread.

While there is evidence that HR monitoring can be helpful for some patients, this evidence is anecdotal. If we are discussing scientific evidence and how rigorous & robust it is then we have to acknowledge this. Unless there is a scientific study I don't know about - distinct possibility!

Cognitive activity can easily push me into PEM. A HR monitor won't pick that up.

Many of us have co morbidities that could make such monitoring unreliable. Hashimoto's for example - even when appropriately treated, the need for more, or less thyroxin can occur quite quickly and definitely throws monitoring off. It is feasible that using a HR monitor a patient might be told they can safely do more because low T4 or T3 is dropping their heart rate.

Without research behind the use of HR monitoring, that explores and identifies where it is unsuitable and how to get the best benefit out of it, I would be unhappy to see it become part of any new NICE guideline.

 

Ok, but regarding NICE I don’t think it’s not in our interest for pacing to become something anyone can fill in according to personal preferences. Especially if there’s a research group (Antcliff et al.) that includes graded activity in its definition of pacing.

If we were to say against NICE: “this is what pacing means to us”, then there’s a chance that the final guideline will describe pacing ambiguously to incorporate all viewpoints. Some may use that to justify a soft form of graded activity, which they call pacing as in the chronic pain literature.

A better tactic would be to refer NICE to the Goudsmit/Jason consensus by saying: “this is how pacing is defined in ME/CFS, it’s very different from how it is used in the chronic pain literature. “

 

I don't know that they do. Even if they did mention them, that doesn't count as thorough research in my book.

I believe that HR monitors may be very useful for some people. However we do not know if they are actually telling us what we think they do without objective and blinded research. We don't know that they are equally effective across subgroups, or even age groups.

HR monitoring won't pick up poor cognitive function - for some of us this is the most disabling symptom.

From personal experience I know that thyroid levels, anaemia and the raised progesterone in the 2nd half of the menstrual cycle all affect my base HR.

So, if we have a teen (do we know if testosterone levels affect HR the way progesterone seems to?) whose hormones are all over the place because of puberty - how effective will the HR monitor be? Not only does this matter in how well they manage their condition, if it becomes part of the guideline it may also affect how the authorities deal with them. Sorry, your HR reading over the past week indicates you're well enough to go to school, or stay in school, even if your cognitive function has dropped significantly and you're in pain.

Are we prepared for PIP, WCA or a benefits tribunal to require you to wear a monitor? Or deny benefits based on the readings? This is what has happened to some people because they haven't followed the current NICE guidelines and undergone GET and CBT.

If the proof is there, following rigorous research, then fine. Currently, to the best of my knowledge that proof isn't there. Without it we could end up inflicting the same sort of harm on a subset of patients that GET did.

 

Yes, in this context it is about evidence.

 

Good point @Michiel Tack. A clear definition of pacing is important. I've encountered too many descriptions of “pacing” that on closer analysis turned out to be forms of GET. Very confusing and misleading.

One issue I have with this paper – though overall it's not bad - is that it gives the impression that if patients stop an activity as soon as they notice an exacerbation of symptoms they will be able to avoid PEM. Yes, the paper does mention pre-emptive rest as part of a pacing strategy and warns that with mental exertion patients may not experience any 'early warning symptoms' but for physical exertion the general impression given is that you can avoid PEM provided you stop at the first sign of symptom exacerbation.This does not match my experience and I know I'm not alone in this. By the time there's any symptom exacerbation at all it's already far too late to avoid PEM. The only way to avoid PEM is to stop before symptoms worsen.

The CDC uses the term activity management. Would that be any better? The word management suggests doing the best you can with what you've got, which sounds about right. The word activity on the other hand may suggest something a little too... well, active, even aerobic-active, which is what we don't want. Activity management within the energy envelope? Energy management? Or @Barry's suggestion of energy budgeting?

For me pacing is primarily about symptom reduction. Good pacing definitely reduces the number, length and severity of PEM episodes for me. I don't think I'm achieving any more total activity on average than I did when I was in the boom-crash cycle but I achieve the same amount of activity with a lower symptom burden which is a worthwhile goal in itself if a health professional absolutely must have goals. So improvement in the sense of reduced symptom burden is possible. Not to be confused with improvement in the sense of increased total activity, I'm still waiting on that one... and waiting...

They are for me – as supplementary tools to achieve better pacing. They definitely don't capture everything, far from it, but still very useful for understanding the comparative energy requirements of different physical activities.

No and no.

 

That's the name of an approach that involves graded exercise (according to how NICE describes it). It's GET in disguise.

 

Yes! This seems to me to be the true aim of pacing.

Any attempt to aim for increase in overall activity is no longer pacing, but rather it is GET.

Sure, sometimes we may have fortuitous variations in our ability threshold, but these do not happen because we “aim” for them, nor because we have a “goal to achieve”. Rather they are like the weather: they just happen.

 

Thinking further, the BPS folk don’t trust us to do more spontaneously when we are able. They assume we will happily stay sluggish and slow by choice.

I wonder are they, in reality, projecting their own lazy attitudes on to us? It seems to me they are the ones who are too lazy, or invested in their current paradigm, to explore further and do more.

 

I think the stereotype/prejudice suited the BPS paymasters.

If we take the Camelford (Wessely was involved) water contamination for example - the fact that there is always someone who might take an advantage to gain some form of compensation is used to smear all people who claim they are affected. So because of a potential small minority, BPSers can smear and deny the appropriate care, support and compensation to the majority of genuine sufferers/claimants.

The assumption about the laziness, lack of motivation is one of the building blocks of the concept of the benefits scrounger, I think.

 

Absolutely. Pacing is about protecting and improving quality of life. It has nothing to do with an overall goal to achieve more.

 

The current NICE guideline does attempt to define the terms used. You can find the definitions in Appendix D attached to the main document:

 

I think you make a good point in your opening post, @Michiel Tack , about the need to define pacing in the NICE guidelines so that it is not misunderstood to be GET/GAT-lite.


I have some reservations about using the paper by Goudsmit, Nijs, Jason and Wallman to do that, though. From the third paragraph on p.4 of that paper, in the section with the heading “Symptom-contingent pacing”, discussion shifts from closer-to-what-I-consider-pacing to what-I-consider-GET-and-GAT:

The bolded part suggests that increases in activity were regarded as part of the pacing phase of this multi-component programme.

In subsequent paragraphs in this section, various “symptom-contingent graded exercise programmes” are reviewed but terminology switches between graded exercise and pacing:

Moreover, there are some guidelines given in the paper that I cannot get behind. They refer to one study by Goudsmit, Ho-Yen and Dancey in which

The solution?

.

Personally, I don’t think the evidence justifies the proposed guideline, and I would be concerned about things like this ending up in the NICE guidelines. I would be concerned that all patients, ranging in severity from very mild to very severe, could be told not to rest for more than 30 minutes at a time, and not more than four times a day, regardless of whether that is enough rest for them, and whether they as individuals experience these feelings of “boredom, isolation and depression”.


To me, an alternative solution would have been to see if those patients who experienced those feelings would do better with listening to an audiobook or music during their rests, or if they actually did better when limiting their rests to 30 mins – we actually have no good evidence that limiting rests to 30 mins helped those who experienced these feelings, or was safe ME/CFS-wise for those who did and those who did not have those feelings when resting. I couldn’t help but feel that the potential for developing depression was being prioritised over actual, existing ME/CFS here.

The “Indications” section also contains some things that I would find concerning in a NICE guideline:

Have (m)any patients been able to convince their doctors that they have an underlying disease process that would be aggravated by GET? What should the first line activity management strategy be for individuals whose symptoms do not fluctuate - is it to increase activity?

In one sense I agree, but I’d be concerned that health professionals might interpret this to mean, do GAT first, then if that fails, try pacing.

In the little grey box “Implications for rehabilitation” on the first page it says:

This could open the door for a health professional deciding that a patient is not operating near their maximum level of functioning, and thus that they should not pace, but should instead increase their activity until the health professional decides the patient is near what the health professional considers the patient's maximum level of functioning to be.

So yeah, I have concerns that the paper itself blurs the distinction between pacing and increasing-activity-programmes like GET and GAT, and that it could be interpreted in ways that would not be good for patients.