Pacing up - why it's as harmful and unevidenced as GET

[Hutan]

people early on trying to learn ‘how to manage their health’ - can we please stop using the term pacing as I don’t think it helps us to use a term they’ve made ambiguous at best and actually doesn’t reflect our lives/conundrum as a mental picture anyway - is medical advice and medical feedback

I think this is a good point. I believe that 'pacing' is a term used in rehabilitation, and 'pacing up' is part of the concept in that context. And of course the PACE trial really muddied the waters.

We have discussed before what the right term is, and I think a lot of people concluded that 'pacing' isn't ideal. Unfortunately, other potentially good terms like 'activity management' tend to have been taken and subverted by BPS proponents. I still like 'activity management' though.

Edit to add - here's google's AI summary of 'pacing for rehabilitation':

Pacing is a rehabilitation strategy that involves balancing activities with rest to manage symptoms and improve function. It's often used to treat chronic pain and fatigue, but can also be effective for other health conditions like cancer, HIV, and fibromyalgia.
The goal of pacing is to increase activity levels while avoiding pain, and to reduce the cycle of high and low activity levels. Pacing can help you: Do more of what's important to you, Experience fewer pain flares, and Feel more in control of your life.

Here are some tips for pacing:

• Start with small changes and try pacing one activity at a time
• Build up the task by doing it for a little extra time each day
• Always stop when you intend to, rather than keep going
• Use the goldilocks principle to gradually improve your tolerance to your goal

Pacing is a key component of pain management programs, and is often used in combination with graded exercise therapy and cognitive behavioral therapy (CBT).

I think that underlines the fact that, as long as we use the pacing term, many people will interpret that as gradually increasing activity.

 

[Trish]

AFME 2023 booklet guide to Pacing denies that Pacing Up is GET. Who do they think they are kidding?

These gradual increases, or “pacing up” following the establishment of a sustainable baseline, might incorrectly be referred to as graded exercise therapy (GET). GET is built on a deconditioning model but pacing up is pragmatic; it doesn’t depend on a theory. Pacing up can apply to all sorts of activities, not just physical, so it’s not correct to call it GET.'

Discussed on this thread, I assume it's the same version

'Pacing for people with M.E.' Action for ME booklet - revised and updated January 2020.

 

[alex3619]

I honestly think you need more than a year to establish a “bandwidth” baseline.

Decades of experiences teaches me that baselines are nonsense. One year its mostly about one level, another year it can be higher, then much lower, and so on. This also applies day to day, not just year to year. You cannot establish a solid baseline and pace. Pacing is adapting to current capacity, increasing or decreasing activity, according to current capacity.

There is a sense in which pacing up might have some limited validity, but in this sense pacing down also has validity. I often have trouble figuring out what my current capacity is. This means I might easily do too much, thinking its OK, or too little, thinking I cannot do more. Gentle testing of limits is how I get by.

Now to comment on my recent experiences on exercise. For months I have been doing resistance training now, limiting to 30s, never getting out of breath, not exercising if its a problem day, carefully switching and rotating exercises, with lots of long, long, long rests. i have gained kilograms of muscle. I am definitely stronger, and regained my trick of being able to instantly open any screwtop container. Yet my endurance, after months of training, is still kaput. I can boost strength, slowly, but not endurance, though to be fair I am not trying to boost endurance. This fits with the model I am using, in which short and not intense resistance training can work because there is limited engagement of mitochondria, but endurance training means engaging mitochondria, and that is when things go very wrong. This is based on an article on Health Rising talking about a German exercise physiologist, and how they can partially recondition LC patients, with ME patient reports pending.

Discussing exercise is not enough. What kind, and what purpose? Its likely many of us can boost strength, but only a small minority seem to be able to boost endurance. Pacing has a different focus with different kinds of activity. I even pace playing my computer games, but pacing up make no sense in that context.

 

[alex3619]

I think it's worth pointing out that many (most?) PWME want to be more active.

My biggest problem is not forcing myself to do more, its holding myself back from doing too much. Especially when there is need of more activity to engage with daily living. I really want to do more. I actually like exercise. But ME is like having a genie in a bottle, and it will let you exercise more but then beat you up each time. Its the experience of consequences that hold me back, but I always want to do more unless I am in a crash or having a bad day.

 

[alex3619]

Just clarifying my thoughts on baselines. If an activity program uses a baseline its probably not an adaptive process, but a graded one. If exercise is part of it then it is definitely GET.

 

[Sean]

A physiotherapist’s view Pete Gladwell, Clinical Specialist Physiotherapist, says: “Pacing is about balancing physical and mental activities with rest. Effective pacing can provide more stability, control and sustainable levels of activity. This can also offer, if you choose, a firm foundation for ‘pacing up’ (see p 43), which involves a considered plan to try and nudge up the level of an activity or exercise

That is appalling. Besides being wrong overall, it places the responsibility for success and blame for failure right back on the patient.

They are never going to give up their rehab and recovery framing, nor take any blame for it not working.

I think it's one of those cases where an ideal professional could help,

Mostly by getting out of the way.

It's hard to overestimate the sheer inertia and built-in stupidity of institutions like the NHS.

Don't rule out some malice towards patients at successfully exposing the ignorance and incompetence of the pros.

I think this is a good point. I believe that 'pacing' is a term used in rehabilitation, and 'pacing up' is part of the concept in that context. And of course the PACE trial really muddied the waters.

We have discussed before what the right term is, and I think a lot of people concluded that 'pacing' isn't ideal. Unfortunately, other potentially good terms like 'activity management' tend to have been taken and subverted by BPS proponents. I still like 'activity management' though.

The BPS club have been very successful at hijacking and perverting the terms and concepts we use, all while papering it over with a sickly saccharine sweet language about caring and working with patients.

It makes no difference what words we use, they are going to do that anyway.

There is a sense in which pacing up might have some limited validity, but in this sense pacing down also has validity.

This.

 

[Trish]

The term pacing is fraught with unspoken assumptions on both its meaning and therapists unfounded confidence that:
a) they know better than patients how they should do it
b) it can't cause harm
c) baselines exist and can be controlled by the patient
d) any program of activity and rest can be labelled pacing, and therapists can tell which version is right for which patient
e) if pwME pace as advised by a therapist their health will improve

None of which is evidence based.

Hence we have:
pacing-up
A trial called PACE (I'm sure deliberately)
APT - adaptive pacing therapy in the PACE trial
GET - also called simple incremental pacing in the PACE trial with fixed or flexible increments
CBT - also called complex incremental pacing in the PACE trial
symptom contingent (symptom guided) pacing
schedule contingent pacing
...

I didn't understand at first why the NICE guideline didn't use the term pacing and chose instead energy management, which makes it clear it's intended as a management strategy, not a treatment. Once I re-read the PACE trial, and spotted those multiple uses of 'pacing', and read about pacing-up, I could see why pacing is to dangerous a word for pwME.

 

[Sly Saint]

And of course the PACE trial really muddied the waters.

a reminder
https://www.s4me.info/threads/action-for-me-has-joined-s4me.2944/page-14#post-60515

 

[MrMagoo]

In fairness to AfME Sonia did say recently that all materials will be reviewed and they aren’t going to be written by Gladwell? After the care plan disaster.

 

[Ash]

It's a good point. I know how you train that professional: you get input from people living with ME/CFS.

You tell them to forget everything they previously learned about rehab, just as people with ME/CFS had to unlearn it. And yes, most of us found it every bit as hard to truly believe it as therapists do, because it runs counter to everything in our previous life experience. Sick people gaslight themselves for years, sometimes decades, because it makes so little sense.

To go back to my previous hobby horse about changing habits and attitudes as part of learning pacing, that doesn't need an ME/CFS specialist. It needs a counsellor who believes people's own testimonies, and they may not be so hard to find. They'll probably have encountered other people struggling to change the standards they've always lived by, but need to do so because of illness or disability. The skill is in helping them get it into proper perspective, instead of feeling they're relinquishing a lot of things that are crucial to their sense of identity.

If I could be where I was 40 years ago, I'd seriously consider a few sessions with a counsellor who supports people with acquired disabilities, because it would save me a lot of time and PEM. It might have to be one who knows bugger all about ME/CFS, just in case.

A counsellor isn’t a rehab therapist though.

You get many great counsellors and many not so great counsellors. They are people. With their own ideology prejudice and personal failings. As full of misapprehension and harmful ideas about and behaviours towards disabled people as anyone else.

However counsellors are trained to support people. Simply that. How to help people safely express vulnerability during the uncertainty of dealing with unexpected impossibly sad or traumatic events.

So it would be a counsellor, depending on the individual their professional organisation, and on access which is doubtful for many reasons, who could help. There is potential.

A rehab therapist is by definition goal oriented and so it would be antithetical to their role to expect them to perform the deprogramming of an individual patient, out of the very paradigm that they were are and (probably always will be) trained to work under. It’s just not a reasonable ask.

A medical professional-who is relatively accessible to a patient albeit within an inaccessible system-that has the opportunity perform the role of encouraging rest is someone who’s done it before, who for decades back, centuries back, into the professions history, has advised rest, is a general practitioner. A doctor. If you’re lucky enough to see a specialist physician as well, the more the merrier.


I see no reason why a GP now who is supposed to be your everything blocking access to all other services, can’t do at least this much for you. It’s firmly in their professional tradition. Something they could be reminded of. Their word with their professional status carries more weight than that of a therapist.

 

[Ash]

Decades of experiences teaches me that baselines are nonsense. One year its mostly about one level, another year it can be higher, then much lower, and so on. This also applies day to day, not just year to year. You cannot establish a solid baseline and pace. Pacing is adapting to current capacity, increasing or decreasing activity, according to current capacity.

There is a sense in which pacing up might have some limited validity, but in this sense pacing down also has validity. I often have trouble figuring out what my current capacity is. This means I might easily do too much, thinking its OK, or too little, thinking I cannot do more. Gentle testing of limits is how I get by.

Now to comment on my recent experiences on exercise. For months I have been doing resistance training now, limiting to 30s, never getting out of breath, not exercising if its a problem day, carefully switching and rotating exercises, with lots of long, long, long rests. i have gained kilograms of muscle. I am definitely stronger, and regained my trick of being able to instantly open any screwtop container. Yet my endurance, after months of training, is still kaput. I can boost strength, slowly, but not endurance, though to be fair I am not trying to boost endurance. This fits with the model I am using, in which short and not intense resistance training can work because there is limited engagement of mitochondria, but endurance training means engaging mitochondria, and that is when things go very wrong. This is based on an article on Health Rising talking about a German exercise physiologist, and how they can partially recondition LC patients, with ME patient reports pending.

Discussing exercise is not enough. What kind, and what purpose? It’s likely many of us can boost strength, but only a small minority seem to be able to boost endurance. Pacing has a different focus with different kinds of activity. I even pace playing my computer games, but pacing up make no sense in that context.

Yes to all this about the baseline.

What is the article do you mind?

 

[Kitty]

baselines exist and can be controlled by the patient

This seems to be a very widespread myth.

I wonder if we patients haven't helped much by talking about concepts like energy envelope? It's fiendishly difficult to express that there are limits, but we have very little understanding of where they are.

We have some sense of them, because people with ME/CFS tend to have a hard ceiling that persists for years. That's what we describe as our severity level, and it's usually consistent enough to allow a degree of management.

It's the soft ceilings, the ones where it's possible to breach them but there will be consequences for doing so. These can be anything from a day of feeling off colour to a career-ending crash, and there's no way to be sure which of those risks you're gambling with.

The only thing we can say for sure is that it IS gambling, and it can wipe our future health and economic prospects.

Therapists should think about that before they start casually throwing advice around. If they did, they might understand it's the equivalent of recommending people try toxic chemotherapy drugs because a couple of studies suggested they may improve earache. Or at least made people forget about their earache, and that's a positive, isn't it?

 

[alex3619]

What is the article do you mind?

https://www.healthrising.org/blog/2024/06/21/anaerobic-exercise-long-covid-chronic-fatigue-oxygen/

There are further links inside the article, and I need to follow up on them.

 

[Peter T]

It's a good point. I know how you train that professional: you get input from people living with ME/CFS.

Way back in the last century when I was still working, I set up training courses on feeding for social service staff working with adults with physical disability along with the people who needed feeding support. We got to the point where the people with disability lead the courses themselves, without me present. We did not quite got to the point where they then got paid for this, but at least the time it became mandatory training for all staff in that area.

By altering the power dynamic I felt it altered the impact of the training, though we did not evaluate this beyond feedback forms which are brilliant if you want only positive feedback, but hopeless for any objective analysis.

Hopefully if we produce good materials here on such as pacing, this will also alter the power dynamic making it harder for clinicians to subvert the message.

 

[Mij]

From alex's link above:

"David Putrino’s autonomic rehabilitation program emphasizes breathing, and a very slow ramp up of exercise using anaerobic exercise at first and, if the patient is able to tolerate them, eventually aerobic exercise activity. (See a Health Rising blog for more.)"


This is similar to what Dr. Svetlana Blitshteyn is suggesting but using a different type of language.

 

[Kitty]

Hopefully if we produce good materials here on such as pacing, this will also alter the power dynamic making it harder for clinicians to subvert the message.

Absolutely agree, but seeing real people describe trying to manage their capacity, and what happens when they fail, probably has more power than written information to make an impact. And to stay in the memory, of course.

I'd love to see a training course that makes use of Dialogues for a Neglected Illness-type video content, in addition to inviting local people with ME/CFS to have an input in a face-to-face session.

 

[MrMagoo]

I know we would all like todo more than we can, but the important and difficult part is doing less. There’s no support or input for that, I suppose it’s too difficult. But increasing/pacing up etc, it gets so much attention and discussion yet it’s putting the cart before the horse. Zero attention on things like radical rest. Always the “baseline/pacing/improvement” narrative. It’s harmful.

 

[Ash]

Absolutely agree, but seeing real people describe trying to manage their capacity, and what happens when they fail, probably has more power than written information to make an impact. And to stay in the memory, of course.

I'd love to see a training course that makes use of Dialogues for a Neglected Illness-type video content, in addition to inviting local people with ME/CFS to have an input in a face-to-face session.

What they see when we fail is fatigue. What they see when we succeed is less fatigue. Nothing more.

To volunteer one’s self to give patient feedback, at a time like this and on their terrain, is to walk into the den and stick one’s head in the lion’s mouth.

I think the only way to come out more in one piece than less, is remote engagement. With a paper trail. Letters from individuals and even better give feedback on mass and publicly, open letters, articles, petitions, advocacy projects.

No cozy group chats and answering phones calls soliciting feedback. Where your words can be appropriated to fit their narrative or used as cover to protect them from accusations of a lack of patient engagement.

It’s all an extra layer of exploitation.

I would say I’d also really like them to watch a video series like Dialogues. But, I’m also more than a bit concerned that they’d simply smirk at the pain people are in.

 

[rvallee]

I think that underlines the fact that, as long as we use the pacing term, many people will interpret that as gradually increasing activity.

And adding to this is the problem that if, by some miracle, we managed to get a new, better, term adopted, one that perfectly fits the spirit and intent of what it actually means, it would be coopted within a year and turned upside down. As it always happened. I'm pretty sure that pacing originally meant the way we use it, and it ended up being useful for the ideologues to capture it for themselves. Their own literature is filled with them saying clearly how they propagandize and coopt language to deprive it of meaning. They call it something else but the goal and intent are the same.

It's the same problem we see in politics: language as a weapon. Because this is entirely political at its core. Whoever holds the balance of power can utilize language to mean anything they want, and destroy and deprive of all meaning anything the powerless come up with. It's why controlling all sources of information in a society is important to destroy a civil society. And in health care, only professionals have a say in the sources of information, a de facto dictatorship that isn't hesitant about abusing its power for their own egocentric purposes.

 

[Creekside]

I know how you train that professional: you get input from people living with ME/CFS.

Wouldn't they get multiple mutually contradictory experiences, since PWME differ so much? One gets PEM from moving their arms, but can talk for hours, while another can do handwork for hours but gets PEM from talking a few sentences. If you get input from enough PWME, I think the advice would boil down to "Pay attention to what makes your symptoms worse, and avoid doing those things.", which we don't need to have a professional tell us.