NICE guidelines - Pacing

ME/CFS Skeptic

ME/CFS Skeptic

Senior Member (Voting Rights)
I would like to make the following point about pacing.

Like the previous NICE document, this guideline will probably mention pacing, perhaps not as a treatment but as something patients find helpful. I think it’s important to specify what is meant by this. Because pacing in the chronic pain literature means something very different than pacing as it used in the ME/CFS community.

In the context of chronic pain ‘pacing’ has a history of operant conditioning. Here it is seen as a strategy to achieve a goal, most often a planned and gradual increase of activity levels. It’s about breaking up tasks into manageable parts, doing things slow but steady, having enough rest periods in between, etc.

Pacing as used in ME/CFS draws upon energy conservation principles. It is not aimed at a goal such as increasing activity levels, but at avoiding relapses and post-exertional malaise. While pacing in the chronic pain literature can be time-contingent, a key aspect of pacing in ME/CFS is to listen to symptoms, for example by stopping an activity as soon as muscle cramps arise. It doesn’t rely on plans, targets or goals, but on how patients feel.​

The first definition is more common. When I speak about pacing to friends who work in the healthcare sector, they think they know what I mean but they don’t as they only have the first definition in mind (which is very much a soft form of graded activity). The research group of Deborah Antcliff is now using that definition in ME/CFS literature without making clear the difference with the form of pacing Ellen Goudsmit and Leonard Jason described. According to Antcliff a time-contingent graded increase in activity levels should be an essential element of pacing.

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. They might think ME/CFS patient don’t tolerate full blown GET, but instead prefer a slow and steady form of grading activity.

There is an easy solution to this, because Goudsmit & Jason have worked out a “consensus document” about pacing, specifying what they mean. So I think it’s important to put this on the table when the subject pacing is being discussed. I think some of the descriptions the CDC-website uses are also helpful as they emphasize that pacing is focused on learning to listen to your body and avoiding post-exertional crashes.
 
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I've seen chronic pain pacing conflated with ME/CFS pacing on some occasions. What is effectively GET is also sometimes labelled pacing, presumably to trick patients (for their own good of course).

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.
 
I think this is why heart rate monitoring is particularly useful for ME. Does
the Workwell foundation group have research on this that ties in with their 2 day CPET work? They do have 'exercise' regimes for strengthening and flexibility in very short bursts (up to 2 minutes at at time) that avoid aerobic exercise. I'll try to dig out the references and add them here.
Edit: Here's a list of links to all their videos and publications:
http://www.workwellfoundation.org/resources/
 
I believe that we don't have any reliable data showing that heart-rate monitor assisted pacing causes improvement in health.

Reliable data as in formal clinical trials that control for various factors that could cause the appearance of improvement. I don't believe there is any such reliable data for any exercise programs.

The lack of research is frustrating isn't it?
 
For the severely ill, pacing seems somewhat of a stretch. I am severe and get pem so easily. I spend alot of my day staring out the window but I have to eat, wash etc...so everyday I have pem inevitably.

One thing I do hope is covered in NICE guidelines is that mental activities like reading, tv, talking can bring on pem also. It's not just physical activity. This is a hugely disabling part of M.E. A phonecall at the wrong time or one that goes on too long can have bad repercussions for me. I can't tolerate visitors. I so hope the severe are well represented.
 
Michiel Tack said:
for example by stopping an activity as soon as muscle cramps arise
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I have never come across muscle cramps as a measure of overactivity. I need to stop way before it reaches that stage.

On the subject of heart rate monitoring, it's not new for NICE.
Note that the current guideline in the section on Graded Exercise says this:
Progressing with GET
1.6.2.17 When the low-intensity exercise can be sustained for 5 days out of 7 (usually accompanied by a reduction in perceived exertion), the duration should be reviewed and increased, if appropriate, by up to 20%. For example, a 5-minute walk becomes 6 minutes, or a person with severe CFS/ME sits up in bed for a longer period, or walks to another room more often. The aim is to reach 30 minutes of low-intensity exercise.

1.6.2.18 When the duration of low-intensity exercise has reached 30 minutes, the intensity of the exercise may be increased gradually up to an aerobic heart rate zone, as assessed individually by a healthcare professional. A rate of 50–70% maximum heart rate is recommended.

1.6.2.19 Exercise intensity should be measured using a heart rate monitor, so that the person knows they are within their target heart rate zone.

1.6.2.20 If agreed GET goals are met, exercise duration and intensity may be increased further if appropriate, if other daily activities can also be sustained, and in agreement with the person with CFS/ME.
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pages 29-30 NICE guideline 2007
 
Michiel Tack said:
Pacing as used in ME/CFS draws upon energy conservation principles. It is not aimed at a goal such as increasing activity levels, but at avoiding relapses and post-exertional malaise.
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Yes, it's much more about energy budgeting. For each PwME there is only so much energy available over any given period of time. As for financial budgeting, it may be all too easy to 'over spend' energy prematurely, not realising it will be needed later to avoid going overdrawn. The major difference is that financial spending is invariably more tangible than energy spending.
 
I have confidence that the two patient committee members we know from this forum will be able to articulate pacing effectively including the role of heart rate monitoring. I have shared Sally Burch excellent blogs on the topics widely on other groups I’m involved in. I haven’t tagged her as obviously she’s not now able to participate in this discussion.
 
NelliePledge said:
I have confidence that the two patient committee members we know from this forum will be able to articulate pacing effectively including the role of heart rate monitoring. I have shared Sally Burch excellent blogs on the topics widely on other groups I’m involved in. I haven’t tagged her as obviously she’s not now able to participate in this discussion.
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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.
 
The need to set goals for increased activity is fundamental to the psyche of many if not most health and care workers. (I say that as a former health care worker, albeit one who worked predominantly with irreversible and degenerative conditions.)

Pacing was sold to me as a means of increasing my average activity levels by avoiding PEM/crashes by an OT at a UK NHS ME/CFS clinic some fifteen years ago. This included the idea that avoiding cycles of boom and bust was a main target, but there was also a clear suggestion that by efficiently managing activity I would avoid a downward spiral and encourage an upward spiral.

Do we have a language to describe what pacing may and may not be achieving and any consensus what we believe it is doing, in the context of an underlying condition that could be independently spontaneously improving, deteriorating or oscillating (relapsing and remitting)?

Which if any of the following would we regard as true?
- pacing helps minimise avoidable crashes improving quality of life
- pacing helps minimise avoidable crashes resulting in more efficient use of a fixed amount of available energy
- pacing helps avoid exacerbation of the underlying condition, minimising exertion triggered deterioration
- pacing helps minimise 'boom & bust cycles' enabling higher average activity levels
- pacing by ensuring sufficient rest and avoiding over exertion facilitates spontaneous recovering
- pacing by retraining activity patterns leads to increased sustainable average activity levels (approaching a BPS explanation?)

I am not sure if this is clearly enough worded or anywhere near an exhaustive list, but they do seem to divide into three groups: trying to stop things getting worse, make the most of what we have got or facilitating improvement.

Do others feel it useful to come up with a common language and an idea of what different people might feel is happening with pacing?

I feel pacing is a positive thing in my life, but can I articulate what I believe it is doing?

My previous activity recording suggested by reducing crashes and avoiding over exertion my average activity levels increased, but I believe this reflected more efficient energy management rather than an improvement in the underlying condition, which improves or deteriorates in its own cycles. The danger of pacing for me is that it encourages a false belief that any improvement is permenant, meaning I am too slow to adapt to spontaneous deterioration/relapses.

I do have the beliefs that rest facilitates recovery (but don't fully know if I think this is recovery from avoiding over exertion or an improvement in the underlying condition) and that over exertion will reduce any energy currently available (and potentially worsen my underlying condition).
 
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Trish said:
I have never come across muscle cramps as a measure of overactivity
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Muscle cramps may be an inadequate term, but this is how the consensus document describes it:

"Minor and transient symptoms which do not make the person feel unwell may be ignored. Typical cues that patients have exceeded their ‘limits' include the onset of muscle weakness, muscle stiffness, pain, dizziness, headache and a flu-like malaise."
​
In another document, Goudsmit describes it as follows:

"Although a gradual increase in activity levels is permitted, the rule is that they should stop when the initial mild fatigue turns into a more unpleasant sensation, or where arms or legs begin to feel weak."​

In an overview she made for WAMES advises "to rest at the first sign of muscle weakness".
 
Peter Trewhitt said:
The need to set goals for increased activity is fundamental to the psyche of many if not most health and care workers. (I say that as a former health care worker, albeit one who worker predominantly with irreversible and degenerative conditions.)

Pacing was sold to me as a means of increasing my average activity levels by avoiding PEM/crashes by an OT at a UK NHS ME/CFS clinic some fifteen years ago. This included the idea that avoiding cycles of boom and bust was a main target, but there was also a clear suggestion that by efficiently managing activity I would avoid a downward spiral and encourage an upward spiral.

Do we have a language to describe what pacing may and may not be achieving and any consensus what we believe it is doing, in the context of an underlying condition that could be independently spontaneously improving, deteriorating or oscillating (relapsing and remitting)?

Which if any of the following would we regard as true?
- pacing helps minimise avoidable crashes improving quality of life
- pacing helps minimise avoidable crashes resulting in more efficient use of a fixed amount of available energy
- pacing helps avoid exacerbation of the underlying condition, minimising exertion triggered deterioration
- pacing helps minimise 'boom & bust cycles' enabling higher average activity levels
- pacing by ensuring sufficient rest and avoiding over exertion facilitates spontaneous recovering
- pacing by retraining activity patterns leads to increased sustainable average activity levels (approaching a BPS explanation?)

I am not sure if this is clearly enough worded or anywhere near an exhaustive list, but they do seem to divide into three groups: trying to stop things getting worse, make the most of what we have got or facilitating improvement.

Do others feel it useful to come up with a common language and an idea of what different people might feel is happening with pacing?

I feel pacing is a positive thing in my life, but can I articulate what I believe it is doing?

My previous activity recording suggested by reducing crashes and avoiding over exertion my average activity levels increased, but I believe this reflected more efficient energy management rather than an improvement in the underlying condition, which improves or deteriorates in its own cycles. The danger of pacing for me is that it encourages a false belief that any improvement is permenant, meaning I am too slow to adapt to spontaneous deterioration/relapses.

I do have the beliefs that rest facilitates recovery (but don't fully know if I think this is recovery from avoiding over exertion or an improvement in the underlying condition) and that over exertion will reduce any energy currently available (and potentially worsen my underlying condition).
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Hi @Peter Trewhitt it would help with comments if you could number your bullet list. Cheers
 
The point I wanted to make was that pacing in ME/CFS is very different from pacing in the chronic pain literature. It was not intended to define pacing as used in ME/CFS, as I know there is not a general agreement on the subject. I think we should not try to redefine pacing according to our personal experience and expect NICE to implement this in their guideline. Instead I think we should refer to pacing/energy envelope theory as it is used in the scientific literature and as it is described in the consensus document by Jason, Goudsmit, Nijs & Wallman.

This doesn't necesssary describe the techniques I personally find usefull. We should be carefull not to confuse pacing with all the behavioral interventions ME/CFS patients report to be helpful. Some people for example prefer doing less than their capable of, believing that this restores their health. The 70% rule is an example of this strategy which we could preemptive rest. This is interesting, but it's contrary to the form of pacing described and studied by Goudsmit and Jason, where the patient is encouraged to strive for the maximal energy expenditure that does not cause post-exertoinal relapses. I don't know which strategy is most helpful (although pacing is studied more) but for clarity's sake I propose to distinguish the two concepts.

Likewise the consensus document explicitly says pacing should not be seen as a treatment but more as a coping strategy or a helpful tool in energy management. I don't think we should strive for NICE to describe it differently as there is no good evidence for pacing as a succesful treatment.
 
Michiel Tack said:
Muscle cramps may be an inadequate term, but this is how the consensus document describes it:
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Ah, OK, in that case I agree with you.

Cramp is a specific term usually only applying to a specific type of painful muscle spasm.
Medical Definition of cramp. 1 : a painful involuntary spasmodic contraction of a muscle a cramp in the leg. 2 : a temporary paralysis of muscles from overuse — see writer's cramp.
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I only have short experience with attempting pacing so no expertise. But I would say only the first two points in @Peter Trewhitt bullet list definitely apply. The rest depend on individual experience. I don’t believe we should be over claiming the benefits of pacing.
 
On muscle cramps/weakness isn’t the point with pacing that if you get to that point you’ve over exerted so although you should definitely rest if that happens really need to take breaks to stop getting to that point rather than relying on that as a signal. Hence the value of heart rate monitoring to help identify risk sooner.
 
NelliePledge said:
Hi @Peter Trewhitt it would help with comments if you could number your bullet list. Cheers
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@NelliePledge, I had made a deliberate decision not to number the list in the comment above as I felt it incomplete and that it could possibly be better organised, however here is a version with numbers:

Which if any of the following would we regard as [describing our experience]?

1. Stop things getting worse: (damage limitation/preventative intervention)
1.a. pacing helps avoid exacerbation of the underlying condition, minimising exertion triggered deterioration

2. Make the most of what have got: (symptom management)
2.a. pacing helps minimise avoidable crashes improving quality of life
2.b. pacing helps minimise avoidable crashes resulting in more efficient use of a fixed amount of available energy
2.c. pacing helps minimise 'boom & bust cycles' enabling higher average activity levels
2.d. pacing by breaking what we do into smaller chunks avoids exertion and enables as a result higher average activity levels (does not work if more severe as it may not be possible to break up some activities, eg going to the toilet)
2.e. pacing helps train self awareness of exertion levels and facilitate self monitoring, so pacing becomes an automatic internalised ongoing behaviour

3. Facilitating improvement: (treatment)
3.a. pacing by ensuring sufficient rest and avoiding over exertion facilitates spontaneous recovery
3.b. pacing by retraining activity patterns leads to increased sustainable average activity levels (approaching a BPS explanation?)
3.c. 'pacing' misused to incrementally increase activity (eg GET)

[It is also important to note that this may be happening against a background of ongoing deterioration, spontaneous recovery or a relapsing/remitting condition.]
 
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NelliePledge said:
I only have short experience with attempting pacing so no expertise. But I would say only the first two points in @Peter Trewhitt bullet list definitely apply. The rest depend on individual experience. I don’t believe we should be over claiming the benefits of pacing.
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I agree we have little objective evidence on what pacing is achieving, that we can not present objective facts only subjective views and anecdotal reports, but if we are wanting to say to NICE that there is strong patient support for pacing, do 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.
 
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Peter Trewhitt said:
@NelliePledge, I had made a deliberate decision not to number the list in the comment above as I felt it incomplete and that it could possibly be better organised, however here is a version with numbers:

Which if any of the following would we regard as [describing our experience]?

1. Stop things getting worse: (damage limitation/preventative intervention)
1.a. pacing helps avoid exacerbation of the underlying condition, minimising exertion triggered deterioration

2. Make the most of what have got: (symptom management)
2.a. pacing helps minimise avoidable crashes improving quality of life
2.b. pacing helps minimise avoidable crashes resulting in more efficient use of a fixed amount of available energy
2.c. pacing helps minimise 'boom & bust cycles' enabling higher average activity levels

3. Facilitating improvement: (treatment)
3.a. pacing by ensuring sufficient rest and avoiding over exertion facilitates spontaneous recovering
3.b. pacing by retraining activity patterns leads to increased sustainable average activity levels (approaching a BPS explanation?)
Click to expand...
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.
 
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