Pacing - different meanings of the term pacing in ME/CFS and other conditions, and the problems this causes.

[Trish]

This topic has arisen in private conversation about the use of the term pacing and its equivalents for ME/CFS and for other conditions.

There is a useful article about this topic on MEPedia:
https://me-pedia.org/wiki/Pacing#In_other_conditions

Pacing for pain management
Pacing was first used in the context of pain management, where it is still used. This document from Oxford hospitals in the UK exemplifies this:
Pacing - how to manage pain and stay active.
In short, it summarises pacing as:
'Pacing is a planned approach to increasing your activity'.
It describes boom and bust cycles, flare ups, diary keeping, finding your baseline and gradually increasing activity in small increments.

Pacing for ME/CFS - history

The term pacing for ME/CFS was first coined by Ellen Goudsmit and was intended to mean staying within the activity levels that avoided PEM. Leonard Jason developed this with his 'envelope theory', and both Goudlsmit and Jason did some research on this sort of pacing showing it improved quality of life. They never claimed it is a treatment, rather it is a management strategy for coping with ME/CFS.
More on this in the MEPedia article linked above.

ME organisations describe pacing in the same way as Goudsmit and Jason.

But in the UK and some other countries clinicians made no distintion between pacing for pain and other conditions, and pacing for ME/CFS.

For example in the PACE trial the three treatment groups were described as:

Adaptive pacing therapy = APT
Simple incremental pacing = GET
Complex incremental pacing = CBT.

Current understanding of pacing by UK clinicians

The UK 2021 NICE guideline recommends 'energy management' that stays within the person's current limit to avoid PEM.

BACME, the UK clinicians group for ME/CFS, claims to support the NICE guideline. However, their documents still support a pacing-up version of pacing, as shown in these quotes:

QUOTE

BACME supports grading activity strategies when delivered by an ME/CFS specialist clinician to make increases and improvements in physical, cognitive and emotional function from an identified stable baseline. BACME does not support inflexible Graded Exercise Therapy (GET) built on a primary deconditioning model.

https://bacme.info/wp-content/uploa...-on-the-Management-of-ME-CFS-October-2020.pdf
________________-

The BACME Dysregulation model is explained in detail in this document which concludes:
https://bacme.info/wp-content/uploads/2022/05/BACME-An-Introduction-to-Dysregulation-in-MECFS-1.pdf

QUOTE
Initially the focus is on consistency and regulating, to support stability before increasing the level of demand. This should be done gradually allowing developmentof tolerance and adaption prior to any further increases in demand, to enable the body to rebalance.Therapy programmes should work on different phases of stabilisation and then building tolerance. It is important that any strategies are implemented after a careful assessment of the individual’s condition, and which aspects of dysregulation are most prominent and need to be addressed to support greater stability. Understanding how the body’s physiology can be affected by this illness is an important starting point to any therapy programme.
END QUOTE
___________

It is therefore apparent that some clinicians in the UK, and doubtless other countries, have not understood or do not accept that pacing, activity management or other such terms need to refer to a completely different management strategy for ME/CFS than for pain and other chronic problems.

I'll say more about some private correspondence with a UK clinician about this in my next post.

 

[Trish]

Early this year I had some private correspondence with a BACME therapist, questioning their recommendation of pacing-up.
I posted a version of one of my emails to that person on this thread:
Pacing up - why it's as harmful and unevidenced as GET

Later in that correspondence they explained to me that they had learned about pacing from a 'wise' colleague and had used it ever since successfully for their patients with other conditions such as arthritis and fibromylalgia. They also use it with their ME/CFS patients, claiming it is NICE guideline compliant because the incraases in activity they recommend once someone has reached their baseline are controlled by the patient and not fixed increments, so therefore not GET as defined by NICE.

By that stage in the correspondence it was clear to me that they were not interested in learning anything from me, and were only interested in persuading me that the pacing they use for pain patients and for ME/CFS patients, and is described in the BACME documents is ethical, and NICE guideline compliant.

I was so angered by this that I wrote this in my reply:

Spoiler: My reply

There's one huge problem with this. ME/CFS is specifically differentiated from those other conditions by post exertional malaise, which is not the same as the 'flare up for days after' that you describe from exercise with fibro and arthritis. They are completely different phenomena. Can you not see that?

Do your arthritis or fibro patients who have done a little extra exertion and have a flare up find themselves feeling like they have the flu, dizzy and nauseous, lying in darkened rooms for days or weeks unable to eat? Do they get crashing headaches, or throats too sore to swallow and swollen lymph nodes? Do they crash from cognitive exertion, or from exposure to light and sound? Are they unable to stand or sit upright because of orthostatic intolerance that gets a whole lot worse after seemingly unrelated exertions? Does an arthritis or fibro flare last indefinitely, affecting all aspects of their life, leaving them bed bound, unable to read, eat, wash, needing to crawl to the loo. Does it have the potential of leaving them much more seriously ill for years, all triggered by just doing a little bit more or their ordinary everyday exertion?

On what basis do you assume that pacing up that you say helps your arthritis and fibro patients is helpful and harmless for people with a completely different condition with a completely different post exertional outcome?

Do you have any clinical trial evidence that pacing up is better than pacing that stays well within the individual's limits? I have not seen any. Do you have any evidence that pacing up is any more effective or safer than GET as prescribed in the PACE trial with its heart rate contingent small increases in one activity, that patients could balance with less of other activities?

You say pacing up fits well with the patient being in control, but does it? We can only be fully in control if we are honestly informed about the possible consequences, and not given false hope.

People with ME/CFS coming new to a specialist clinic are likely to trust and believe what they are told, and do their best to follow advice given. We are all desperate for good advice on how to manage and will latch on to messages of hope that by following the therapists advice our health will improve. People with ME/CFS are keen to find ways to do more, frustrated at the limitations, and desperate to reach the 'up' part of pacing up.

My experience and that of everyone with ME/CFS I've encountered is that we need advice to hold back, not advice to find a baseline then try doing a bit more.

Seen in that light, exercise programs as described by NICE are, at their best, and I would hope as intended, about helping people to hold back, not to push forward. They are about someone feeling a bit better and more stable and thinking, great, now I'll be able to do more, and the clinician advising they cut back for a while first, then do a very limited increase in a single activity that stays within their overall daily baseline. If the baseline has really increased, great, then we naturally do more, but we need to be reminded not to overdo it, not to push the boundaries. We don't need to be encouraged to try to increase, and especially we shouldn't be told that we can improve our health if we keep pushing ourselves a little bit at a time. The desensitisation or whatever theory it is based on is unevidenced. It is simply wishful thinking, and has significant potential to harm.

My correspondence with that individual ceased, as I admitted we'd come to an impasse. If I had the energy, I would write to BACME about the difference between their approach and NICE and why their approach is wrong and not NICE compliant.

The difference between NICE NG206 ME/CFS guideline and BACME:

NICE NG206 ME/CFS, 2021

1.11 Managing ME/CFS​

Spoiler: Sections on managing and on exercise programs.

1.11.2​

Discuss with people with ME/CFS the principles of energy management, the potential benefits and risks and what they should expect. Explain that it:

• is not curative
• is a self-management strategy led by the person themselves with support from a healthcare professional in an ME/CFS specialist teamin an ME/CFS specialist team
• includes all types of activity (cognitive, physical, emotional and social) and takes into account overall level of activity
• helps people learn to use the amount of energy they have while reducing their risk of post-exertional malaise or worsening their symptoms by exceeding their limits
• recognises that each person has a different and fluctuating energy limit and they are experts in judging their own limits
• can include help from a healthcare professional to recognise when they are approaching their limit (children and young people in particular may find it harder to judge their limits and can overreach them)
• uses a flexible, tailored approach so that activity is never automatically increased but is maintained or adjusted (upwards after a period of stability or downwards when symptoms are worse)
• is a long-term approach − it can take weeks, months or sometimes even years to reach stabilisation or to increase tolerance or activity.

1.11.3​

Help people with ME/CFS develop a plan for energy management as part of their care and support plan. Support them to establish realistic expectations and develop goals that are meaningful to them. Discuss and record the following in the plan along with anything else that is important to the person:

• cognitive activity
• mobility and other physical activity
• ability to undertake activities of daily living
• psychological, emotional and social demands, including family and sexual relationships
• rest and relaxation (both quality and duration)
• sleep quality and duration
• effect of environmental factors, including sensory stimulation.

1.11.4​

Work with the person to establish an individual activity pattern within their current energy limits that minimises their symptoms. For example:

• agree a sustainable level of activity as the first step, which may mean reducing activity
• plan periods of rest and activity, and incorporate the need for pre-emptive rest
• alternate and vary between different types of activity and break activities into small chunks.

1.11.5​

Agree how often to review the person's energy management plan with them and revise it if needed.

1.11.6​

Advise people with ME/CFS how to manage flare-ups and relapses (see the section on managing flare-ups in symptoms and relapse).

1.11.7​

Make self-monitoring of activity as easy as possible by taking advantage of any tools the person already uses, such as an activity tracker, phone heart-rate monitor or diary.

1.11.8​

Refer people with ME/CFS to a physiotherapist or occupational therapist working in an ME/CFS specialist team if they:

• have difficulties caused by reduced physical activity or mobility (also see the sections on physical functioning and mobility and care for people with severe or very severe ME/CFS) or
• feel ready to progress their physical activity beyond their current activities of daily living (see the section on physical activity and exercise) or
• would like to incorporate a physical activity or exercise programme into managing their ME/CFS (see the section on incorporating physical activity and exercise).

Incorporating physical activity and exercise​

1.11.9​

Do not advise people with ME/CFS to undertake exercise that is not part of a programme overseen by an ME/CFS specialist team, such as telling them to go to the gym or exercise more, because this may worsen their symptoms.

1.11.10​

Only consider a personalised physical activity or exercise programme for people with ME/CFS who:

• feel ready to progress their physical activity beyond their current activities of daily living or
• would like to incorporate physical activity or exercise into managing their ME/CFS.

1.11.11​

Tell people about the risks and benefits of physical activity and exercise programmes. Explain that some people with ME/CFS have found that they can make their symptoms worse, for some people it makes no difference and others find them helpful.

1.11.12​

If a physical activity or exercise programme is offered, it should be overseen by a physiotherapist in an ME/CFS specialist team.

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.

1.11.14​

Do not offer people with ME/CFS:

• any therapy based on physical activity or exercise as a cure for ME/CFS
• generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
• any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4)
• physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.

Box 4 Graded exercise therapy definition​

Graded exercise therapy is a term used in varying ways by different services supporting people with ME/CFS.

In this guideline, graded exercise therapy is defined as first establishing an individual's baseline of achievable exercise or physical activity, then making fixed incremental increases in the time spent being physically active. This definition of graded exercise therapy reflects the descriptions given in the evidence that was reviewed, and it is this approach that the guideline says should not be undertaken.

An individualised approach that should be taken for people with ME/CFS who choose to undertake a physical activity or exercise programme is described in recommendations 1.11.10 to 1.11.13.

Picking out relevant parts of this:

QUOTES
Management
is a self-management strategy led by the person themselves with support from a healthcare professional

helps people learn to use the amount of energy they have while reducing their risk of post-exertional malaise or worsening their symptoms by exceeding their limits

Work with the person to establish an individual activity pattern within their current energy limits that minimises their symptoms

Exercise programs
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.

END QUOTES. My bolding.

Contrast this with the BACME approach which does not tell people to cut back before increasing, nor that any increases should say within their limits.
__________

BACME claims their approach is NICE guideline compliant. It's not.

NICE says do not offer:

• any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4)
• physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.

BACME claims pacing up is NICE complaint because it doesn't use fixed increments as in the NICE definition of GET and is therefore not GET. They conveniently ignore the part I've bolded and just focus on the part after that in the first bullet point.

BACME also claims to be NICE compliant because they don't use a deconditioning or exerclse avoidance model as in the second bullet point.

But NICE does not us any model. BACME uses a dysregulation and central sensitisation model and claims pacing up will enable improvement by desensitiation. This has no basis and is not NICE guideline compliant.

 

[Evergreen]

Here's a nice summary of pacing for ME/CFS by Goudsmit. I found this helpful in the early years. Or rather, when I came across it after figuring pacing out for myself, I thought, that's a really good summary of pacing. The pdf is dated January 2011 but the copyright is 2005, so the document has been around for 20 years.

Some excerpts (full document at link above):

Advice to pace activities is based on the observation that people with ME tire easily. It's one of the main characteristics of the illness. From the reports on people with Multiple Sclerosis, Parkinson's Disease and other medical conditions who also report profound fatigue, I thought that patients with ME might benefit from a similar approach. That was in the late eighties.

The assumption of improvement here is not helpful in my opinion:

The aim of pacing is to remain as active as possible but to avoid the relapses resulting from overexertion. As you improve (whether as a result of medication, other therapies, time or luck), your boundaries will increase and you will gradually be able to do more. If people want to increase their activity levels every few days, that's fine, as long as they remain, in the words of Dr Melvin Ramsay, "within the limitations which the disease imposes".

She's very clear about pacing's incompatibility with graded exercise/graded activity:

It should be obvious that pacing is not a type of treatment or therapy. It is simply a way of managing energy. Ideally, it should be part of a programme, which also includes medical care, emotional support, dietary advice etc. Indeed, it can be combined with cognitive behaviour therapy, counselling, in fact, everything except graded exercise.

Pacing versus graded activity As I've noted before, pacing does not rely on plans. Indeed, if you see references to plans, goals or targets, you are probably reading about some form of graded activity.

Here Goudsmit differentiates her concept of pacing from "newer versions" that recommend increases:

7. Increase activity when you are ready When should you increase your level of activity? Newer versions of pacing advise a gradual increase every few days. This assumes that the previous level did not lead to a marked exacerbation and that medically, you are stable. However my concept of pacing means responding to your symptoms so if you feel OK, there's no reason to stop. If you want to increase your activity levels, you are free to do so as long as you don't over-exert yourself in the process. It's similar, except that I don't advise people to make plans, or aim at targets and goals.

Edited to add last part and sundries.

 

[Evergreen]

I don't think it's accurate to say that Goudsmit coined the term pacing. It was already in use, and she decided it could work in ME/CFS too, and introduced it to the field. This is from her paper with Nijs, Jason & Wallman:

The term ‘pacing’ was chosen by one of the authors (EM Goudsmit) since the advice for patients with ME/EN [26] resembled that found in books on coping with other chronic conditions. Although most of these did not use the word ‘pacing’ and definitions varied, one writer [27] described it as “identifying which activities one is able to do, how often, under what circumstances... pacing is not a static decision but necessarily fluctuates with the monitoring of the physiological imperative... rest is prescribed… for symptom control”. As advisor to support groups, Goudsmit promoted pacing in factsheets and other publications [26] and subsequently assessed a programme which included pacing in a controlled trial [16,21].

I think that paper really muddied the waters, as there's a lot in the paper about increasing activity and graded exercise, under the section headed "symptom-contingent pacing" and another "programmes combining time and symptom-contingent pacing". I remember reading that Goudsmit felt that in the years after that paper, Nijs changed his approach, but to me, his approach was already in the paper. Wallman was also researching exercise, albeit in a more patient-friendly way than others at the time.

 

[ME/CFS Science Blog]

The team of Deborah Antcliff is an example of researchers applying to chronic pain interpretation of pacing and applying it to ME/CFS as if it didn't have a different meaning there.

There is some discussion about it here:

Tack 2022 - Pacing: one term, many meanings

Testing a newly developed activity pacing framework for chronic pain/fatigue: a feasibility study | BMJ Open

Authors' response:

Testing a newly developed activity pacing framework for chronic pain/fatigue: a feasibility study | BMJ Open

 

[Trish]

Thank you for those links, @ME/CFS Science Blog, that's very helpful. I guess we've seen them before but I'd forgotten.

The response from the clinicians shows the same problem we are still seeing - when they consulted UK clinicians working with pwME, they used the same version of pacing as for pain and fatigue. They refused to acknowledge that there needs to be a difference because of PEM.

 

[Utsikt]

I think the section by NICE about exercise is terrible.

• 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.

There is no evidence whatsoever that physical activity at the level below what causes PEM can lead to an increase in their physical abilities in a way that would lead to an increase capacity to do things without experiencing PEM.

It’s actually absurd to even suggest that doing less than what you could usually do can lead to increased physical fitness. That would only be true in the case of over-training, but pwME/CFS are clearly not there.

Sure, if you stopped walking in stairs and instead spent that capacity on walking on flat ground, you might be able to walk slightly further. But that is a redistribution of physical capacity, not an absolute increase.

The whole thing assumes that lack of physical activity is a driver of PEM. That is completely unsubstantiated.

 

[Trish]

I agree the NICE section is pretty bad, but at least it does make it clear that any clinician advising a pwME about how to add exercise to their daily life should tell them to cut back on something else so the added activity doesn't take them over their current limit. I think for example of someone who wants to do some yoga, and asks for advice. The BACME therapist would probably say, if your ME/CFS is stable, go ahead and start adding yoga. The NICE guideline would say - what are you going to cut out to enable you to add the yoga and stay within your limits.

 

[Alinda]

But that is a redistribution of physical capacity, not an absolute increase.

All BPS people seem to not understand this. The only thing they are good at is making you stop doing anything fun or relaxing, and spend all of that energy on work/school.

"Wow you are so much better now!"

 

[Utsikt]

The NICE guideline would say - what are you going to cut out to enable you to add the yoga and say within your limits.

They say that at first but are then open to the possibility that redistributing your physical activity can create an improvement in PEM.

There is no basis for that claim anywhere.

NICE are describing exercise as an intervention that might improve your disease.

 

[Trish]

Good point. I agree NICE is seriously flawed. My main point is that the BACME approach to pacing is even worse.

 

[Sean]

Pacing for pain management
Pacing was first used in the context of pain management, where it is still used. This document from Oxford hospitals in the UK exemplifies this:
Pacing - how to manage pain and stay active.
In short, it summarises pacing as:
'Pacing is a planned approach to increasing your activity'.
It describes boom and bust cycles, flare ups, diary keeping, finding your baseline and gradually increasing activity in small increments.

That explains a lot.

The whole thing assumes that lack of physical activity is a driver of PEM. That is completely unsubstantiated.

Contradicted even by the actual evidence.

 

[Mij]

They certainly don't advise 'pacing up' for persons with vestibular dysfunction, they advise pacing and resting to recover because it's a condition that can be tested for.

 

[StellariaGraminea]

This topic has arisen in private conversation about the use of the term pacing and its equivalents for ME/CFS and for other conditions.

Are you thinking we should get rid of the term pacing?

I've found people, incl. doctors make automatic assumptions about what I mean when I've said I'm "pacing". I saw someone online using the term "energy rationing" and have tried to use that instead of pacing because (1) I think it makes the person think "Ooh, that's a new term, must be a concept I don't know about and it's a gap in my knowledge base that I need to learn more about" - new vocab for something new to them - as well as (2) it being more accurate and getting away from the whole annoying focus on physical exercise where sensory, cognitive, social exertion etc are often forgotten about or mentioned in a tokenistic way.

 

[Jonathan Edwards]

Are you thinking we should get rid of the term pacing?

I am certainly wondering about abandoning the term pacing. The trouble with energy management is that as far as we know this isn't about managing some stuff called energy that there is a limited supply of. It may feel like that but there is no obvious scientific basis for it.

The MEA sheet on pacing is written by Charles S and a physio and I suspect the physio wrote the bits about energy management. Physios like to think they know about energy physiology. I worry that any term that includes energy legitimises the physio-type analysis.

 

[JemPD]

I'm not well enough to read past the OP today, but its a subject thats bothered me a lot recently, so glad we have a new thread for it.

For example in the PACE trial the three treatment groups were described as:

Adaptive pacing

A small thing but I wanted to just point out that IIRC in the PACE trial they called it Adaptive Pacing Therapy, not just Adaptive Pacing - thus APT, CBT, GET

 

[Jonathan Edwards]

A small thing but I wanted to just point out that IIRC in the PACE trial they called it Adaptive Pacing Therapy, not just Adaptive Pacing

And of course we should not forget that the APT arm did not even look as if it had a measly effect. It was exactly the same as SMC. So the idea that since re-evaluating PACE BACME should shift from GET to APT is bonkers. That sort of pacing should be even deader than CBT and GET.

Maybe it is a pity I never got a place on the Guideline Committee. The patients did great stuff but the on-side clinicians seem to have caved in to total gibberish.

 

[StellariaGraminea]

I am certainly wondering about abandoning the term pacing. The trouble with energy management is that as far as we know this isn't about managing some stuff

I don't like the term energy management, rather had used "energy rationing"... as it communicated a finite supply of ability to exert, and avoids the whole idea that it can be expanded by me beyond limits this illness imposes. I can see the issue with "energy" though from what you say. Not sure how to get around that when we don't have an answer yet re what it is exactly that limits us. Subjectively "energy" seems to fit.

 

[Alinda]

I think a different word would be ideal, but I think it will be very difficult to find something that both  feels correct but also avoids making assumptions (things with "energy", for example) or has different meanings (like pacing)

On the other hand, I wonder whether we need this explained so deeply at all. It should be rather obvious to anyone who is not biased, that if exercise is making you (more) sick for weeks/months or forever it is something to avoid. We shouldn't need a fancy term or explanation for that!

 

[Utsikt]

Good point. I agree NICE is seriously flawed. My main point is that the BACME approach to pacing is even worse.

Having dealt with the NICE approach for the better part of a year I’d say it’s also atrocious and in some sense it might even do more harm because it will keep the patients at it for longer if they are lucky and have some positive fluctuations at the same time.

Then it will be «it stopped working for a while» or «I had a setback» while their entire life is consumed by detail management from hell by invasive HCPs and a constant guilt about maybe doing too much or too little or not using your extremely limited capacity to do the most optimal thing.

Sorry for the rant, it’s not directed at you or anyone here. I agree that all of the doing more interventions are terrible.