NICE guidelines - Pacing

[ME/CFS Skeptic]

we need to have some clarity about what we are saying it is. Also we need to be able to be clear what we are saying pacing is not

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.

 

[Trish]

For me the point of pacing is as a management strategy to avoid so many crashes. The only alternative is not pacing, ie doing more, ie GET. Which is shown not to work and to push people into worse levels of ME. It would be wrong to claim pacing is a 'treatment' that will lead to improvement. We don't know that.

 

[Peter T]

Thanks that helps. I still think we can only say 2aand 2b although I would like to hope 1a applies as well I don’t think we can say it with certainty. 2c I dislike boom and bust terminology as it is used to blame patients for crashes and I think it’s more sensible to talk about efficient use of available energy than about increasing activity.

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]

 

[NelliePledge]

[QUOTE="

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.

.[/QUOTE] pacing is a patient generated approach patients have the experience not researchers it should be led by patient views

 

[ME/CFS Skeptic]

it should be led by patient views

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.

 

[NelliePledge]

It was. I think both Goudsmit and Jason developed the principles of pacing (indepentely of each other) on the basis of patient input and in collaboration with patient organisations .

I don’t think anyone’s got a copyright on it though

 

[Invisible Woman]

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.

 

[ME/CFS Skeptic]

I don’t think anyone’s got a copyright on it though

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. “

 

[NelliePledge]

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. “

Do Goudsmit/Jason discuss heart rate monitors if not that’s not sufficient

 

[Invisible Woman]

Do Goudsmit/Jason discuss heart rate monitors if not that’s not sufficient

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.

 

[Barry]

I agree, but if they are to convince the BPS people on the committee they will need evidence. I'm sure they know that, but if we can dig up any more evidence, that may be useful for them.

Yes, in this context it is about evidence.

 

[Trish]

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.

Thank you for raising lots of important points to consider on this. I realise I'm a bit overenthusiastic about heart rate and step monitoring because they have helped me pace and crash much less often.

It's good for me and for all of us to be reminded that our own anecdotal evidence is not relevant for NICE guidelines - they need to be based on research evidence.

 

[Ravn]

So I hope the NICE document doesn’t simply mention that ME/CFS patients find pacing helpful without specifying what it is, as this might be misinterpreted by many healthcare professionals.

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.

Goudsmit & Jason have worked out a “consensus document” about pacing, specifying what they mean

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.

It might be good to come up with a new name for pacing, with a descriptive name that distinguishes it from the other pacing and makes it difficult to conflate GET with it.

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?

three groups: trying to stop things getting worse, make the most of what we have got or facilitating improvement

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...

I believe that HR monitors may be very useful for some people.

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.

Are we prepared for PIP, WCA or a benefits tribunal to require you to wear a monitor? Or deny benefits based on the readings?

No and no.

 

[Hoopoe]

The CDC uses the term activity management.

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

 

[Unable]

So improvement in the sense of reduced symptom burden is possible. Not to be confused with improvement in the sense of increased total activity,

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.

 

[Unable]

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.

 

[Invisible Woman]

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 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.

 

[Invisible Woman]

For me pacing is primarily about symptom reduction.

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

 

[Russell Fleming]

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

Appendix D: Definitions used in this guideline

Activity

Any task or series of tasks that a person performs. A task may have physical, emotional, cognitive and social components.

Activity management

A person-centred approach to managing a person's symptoms by using activity. It is goal-directed and uses activity analysis and graded activity to enable people to improve, evaluate, restore and/or maintain their function and well-being in self-care, work and leisure.

---

Cognitive behavioural therapy (CBT)

An evidence-based psychological therapy that is used in many health settings, including cardiac rehabilitation and diabetes management. It is a collaborative treatment approach. When it is used for CFS/ME, the aim is to reduce the levels of symptoms, disability and distress associated with the condition. A course of CBT is usually 12–16 sessions. The use of CBT does not assume or imply that symptoms are psychological or 'made up'.

Pacing
https://www.nice.org.uk/guidance/cg...itions-used-in-this-guideline#ftn.footnote_12
The report of the Chief Medical Officer's working group [12] defined the principles of pacing, and these are supported by people with CFS/ME and patient groups. Many of the principles are included in this guideline's recommendations on CBT, GET and activity management. Examples include spreading activities over the week, breaking tasks down into small manageable parts, interspersing activity with rest and setting appropriate, realistic goals for increasing activity.

In this guideline, pacing is defined as energy management, with the aim of maximising cognitive and physical activity, while avoiding setbacks/relapses due to overexertion. The keys to pacing are knowing when to stop and rest by listening to and understanding one's own body, taking a flexible approach and staying within one's limits; different people use different techniques to do this.

However, in practice, the term pacing is used differently by different groups of people. One understanding of its meaning is as adaptive pacing therapy, which is facilitated by healthcare professionals, in which people with CFS/ME use an energy management strategy to monitor and plan their activity, with the aim of balancing rest and activity to avoid exacerbations of fatigue and other symptoms.

Another understanding is that pacing is a self-management strategy, without specific intervention from a healthcare professional. People with CFS/ME generally support this approach.

Rest periods

Short periods when a person is neither sleeping nor engaged in physical or mental activity. Rest periods are a core component of all management approaches for CFS/ME.

Setback/relapse

An increase in symptoms above the usual daily fluctuations, which may result in a reduction in function for a time.

---

 

[Evergreen]

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:

When symptoms improve, patients experience less weakness and fatigue during the day so following the principles of pacing, their tolerance for activities should increase. Regular reviews to ascertain how energy is used in daily life can assist in reprioritising tasks and optimize daily functioning [57,67] If increases in activity do not result in symptom flare-ups for three months and patients feel that they are close to about 60 to 70% of their former functioning, they may wish to change to a gentle form of graded exercise therapy (GET), starting at a low level and increasing incrementally in duration and intensity to further increase their fitness and tolerance thresholds [18].

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:

One symptom-contingent graded exercise programme has been evaluated in a randomized controlled trial (RCT)[48]. Increases in exercise were advised only when patients felt that they were coping with their current activity levels as determined by average scores on a perception of effort scale. Moreover, patients were allowed to stop if they experienced a relapse or if symptoms became worse…. In addition, 91% of the participants rated themselves as ‘better’ in respect to their overall health, while no one felt that the exercise/pacing programme made them worse. Perceived fatigue scores fell by 30% in the exercise group compared to 15% in the relaxation/flexibility controls. This trial of pacing is particularly noteworthy because it did not include additional interventions such as relaxation exercises, counselling or CBT….There have been no other controlled trials of symptom contingent 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

some patients who felt relatively well reported feelings of boredom, isolation and depression during the periods of pre-emptive rest

The solution?

As a result, patients are now advised to limit these periods to 30 minutes, two to four times a day and to follow each with an enjoyable activity…the duration of pre-emptive rest should be limited to prevent rumination and excessive focusing on symptoms as these may have adverse effects on outcome [16,73]

.

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:

Based on experience and the available evidence, we recommend pacing as a first-line strategy to manage activity levels for individuals who report marked fluctuations in symptoms [13,19,22,23] and/or where there is sound evidence of an underlying disease process that may be aggravated by a time- contingent exercise programme [34,36,38,40,50,77–82].

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?

Pacing is also appropriate for the many patients with ME/CFS who have tried a graded activity programme but were not able to increase their activity levels due to PEM.

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:

Pacing is appropriate for those who operating near or at their maximum level of functioning

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.