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

[Kitty]

I think there is a role for professionals, for people with real practical knowledge, so that every family doesn't have to learn everything about living with ME/CFS by trial and error.

I do too, but they have to understand it has very little to do with measuring or recording. I know there are a few pwME/CFS who use heart rate monitors, but it's likely the majority don't find recording of much practical use at all.

If your capacity levels are quite variable, it could all be confusing for someone newly ill. It also risks leading them into fixed ways of thinking, e.g. "I can usually do X and Y, but not Z". The reality is it all depends on what else happened, half of which won't have been in the plan.

We can all be our own worst enemies at times when it comes to pacing, but it's also an area where ingrained behaviours and attitudes can be important. Those who studied and/or worked before they got ill have a lot of personal discipline to unlearn, at the same time as learning a whole new one.

It's a big deal, and it's not surprising it leaves some people with depression. They may be unpicking their hopes and ambitions or feel they're surrendering skills and qualifications that were hard won.

 

[Sasha]

Do we have any numbers on how many of the specialist clinics are using this 'pacing up' approach (for example, from their literature)?

Have any of the charities challenged it by writing to BACME and/or to individual clinics?

If they haven't, should we?

 

[Peter T]

In the early stages, some would probably benefit from help with pacing down. I could have used it when first diagnosed; I'd already been ill for over 20 years, but I still struggled with feeling guilty or lazy when I took deliberate rest. It would have been nice to have it underlined, probably several times, that I was only ever comparing myself with people who weren't ill.

I still do it, specially when it comes to how untidy my sitting room is or grubby my floors get. But at least I do it knowingly now, meaning I can point the Finger of Idiocy when I catch myself at it.

I did some fifteen years ago have a course of CBT aimed at getting more comfortable with doing less. I always found pacing difficult for me psychologically. I struggled to leave things undone or not doing things at all. Unfortunately this, possibly cooccurring with a period of spontaneous improvement, resulting in me slipping into pacing up.

I think part of this for me was by avoiding PEM I could on average do more but only to a ceiling. Foolishly I took on more commitments and ended up after a year or so in a major crash that left me worse than I had been in the whole course of my ME.

Some people do experience sustainable improvement and anecdotally there are reports of recovery, however because we are talking about longer time scale than most ‘therapeutic’ interventions, and most health professionals (perhaps even including myself) are focused on rehab, it is very hard for many professionals to see improvement as potentially risky.

 

[Kitty]

Do we have any numbers on how many of the specialist clinics are using this 'pacing up' approach (for example, from their literature)?

I suspect not, because you'd have to go through the info and read between the lines. Some of them may claim not to, whilst doing it anyway because they haven't got a clue.

The mere fact that sessions at our local clinic last two and a half hours is indicative. Even for someone who doesn't live far away, it takes place at a hospital (hospitals would be the most disability inaccessible public buildings on earth if it weren't for bothies halfway up mountains) which means they are going to be out of the house for at least three and a half hours, once they've factored in trying to find a parking space or waiting for buses.

 

[Sasha]

The mere fact that sessions at our local clinic last two and a half hours is indicative. Even for someone who doesn't live far away, it takes place at a hospital (hospitals would be the most disability inaccessible public buildings on earth if it weren't for bothies halfway up mountains) which means they are going to be out of the house for at least three and a half hours, once they've factored in trying to find a parking space or waiting for buses.

You make an excellent point there! And the sheer size of a hospital makes it very hard to a PwME to get around it.

 

[Peter T]

You make an excellent point there! And the sheer size of a hospital makes it very hard to a PwME to get around it.

When I attended the nearest ME/CFS specialist services some twenty years ago, I had stopped work but was at the milder end of moderate. It was some twenty miles away so I had to arrange to have a key for a friend’s nearby house to rest after sessions and if need be stay over.

 

[Sasha]

When I attended the nearest ME/CFS specialist services some twenty years ago, I had stopped work but was at the milder end of moderate. It was some twenty miles away so I had to arrange to have a key for a friend’s nearby house to rest after sessions and if need be stay over.

I made myself permanently worse by travelling from my parents' home some distance away by train and then finding that the clinic would have let me do the session by phone. I have never been able to travel more than a few miles independently since. It was crucial for me to attend that first session one way or another to handle all the admin/benefits/financial side of being forced to leave work.

 

[Kitty]

And the sheer size of a hospital makes it very hard to a PwME to get around it.

I'm familiar with five very different hospitals, but they all have one thing in common: it's simply not possible for anyone with a significant mobility impairment to reach the location of their appointment unaided.

Even if you can find a parking space—which usually unfeasible even with a disabled parking permit, because half the people who need to be there also have a disabled parking permit—it's still 10 minutes' walk for an able bodied person. If you're unlucky enough to be attending the Northern General in Sheffield, you need a blister kit, two days' food, and an emergency tent.

 

[rvallee]

Professional guidance for pacing is for the professional's benefit ("See, I'm doing something to help the patient, and if it doesn't make them better, it's their fault for not trying hard enough."), not the patient's benefit.

 

[Sly Saint]

Do we have any numbers on how many of the specialist clinics are using this 'pacing up' approach (for example, from their literature)?

Have any of the charities challenged it by writing to BACME and/or to individual clinics?

If they haven't, should we?

I imagine that any of them who are guided by BACME, and those influenced by AfME as it is in their Pacing booklet.

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

Pacing A5 booklet Oct 2023 aw.indd

 

[rvallee]

I do too, but they have to understand it has very little to do with measuring or recording. I know there are a few pwME/CFS who use heart rate monitors, but it's likely the majority don't find recording of much practical use at all.

Ironically, this is also something that is more useful for professionals than patients, but they completely miss the forest for the giant void in space.

Heart rate is not supposed to jump to 140 getting up and walking a few meters, or brushing teeth. This is objective evidence of something wrong. And it has been confirmed in numerous studies that we are not deconditioned, to the point where psychobehavioral ideologues will literally argue that sometimes if GET doesn't work well enough it's because the patients are active enough. They see nothing wrong with the blatant contradiction, because it's entirely self-serving.

But instead it's completely dismissed and used to, somehow, argue it must be anxiety. Or fear. Or whatever. Which is absurd and ridiculous but here we are, decades later, at the exact same spot where this all began, making grand affirmations about this.

Otherwise it has some utility in confirming that you are going above the limit, but most of the time you can feel it anyway. So it's just another case of systemic professional failure leading to even more failure, because they choose to disbelieve the tools of their trade whenever those tools conflict with myths and beliefs.

 

[bobbler]

I did some fifteen years ago have a course of CBT aimed at getting more comfortable with doing less. I always found pacing difficult for me psychologically. I struggled to leave things undone or not doing things at all. Unfortunately this, possibly cooccurring with a period of spontaneous improvement, resulting in me slipping into pacing up.

I think part of this for me was by avoiding PEM I could on average do more but only to a ceiling. Foolishly I took on more commitments and ended up after a year or so in a major crash that left me worse than I had been in the whole course of my ME.

Some people do experience sustainable improvement and anecdotally there are reports of recovery, however because we are talking about longer time scale than most ‘therapeutic’ interventions, and most health professionals (perhaps even including myself) are focused on rehab, it is very hard for many professionals to see improvement as potentially risky.

A reminder of how the bps (and these allied hcp areas such as rehab) wanting to use the term recovery in a deliberately misleading ie opposite to what it’s normal meaning is for a physical illness sense is also incredibly dangerous and on its own irresponsible/ should come with liability.

it’s based on / justified on bigoted concepts that think people do less due to motivation or habits or behaviour NOT that there’s a health condition underneath. Which has been banned as a belief for those running clinics to have / be ‘treating’ (instead of the illness the guideline is for and that they should be treating) as per 2021 ME/CFS guideline.

Or maybe it's because these types of HCPs don't actually get involved with the medical treatment that other conditions have before they might try any of this, so they forget it's like they are treating someone with a broken leg pre-op and expecting it's all fine to default to their usual assumptions they use for all the people who come to them having had their broken leg treated. But to be fair that's the same thing as above, when it's your job to do one illness and it's not like they haven't had goodness knows how many years of reminders they choose to keep ignoring - which becomes callous indifference, after the first few times of forgetting and being reminded just like any other 'ism'.

in the health condition ie new normal guidelines paradigm it’s like saying people ‘recovered’ from ‘looking after their health condition - so people can be MORE ill and their condition worse but they say ‘recovered’ because’they aren’t restricting themselves from making this worse by behaving differently ti normal people’

so actually shockingly we STILL have a situation where what these people mean by ‘recovery’ is not only the opposite to most laypersons logic but also means ‘learning to stop managing your ILLNESS/health’ (they just use all this bs to kid themselves what they aren’t selling and believing us underneath it ‘tgat cfs is a belief you have an illness, me, that doesn’t really exist’ .. still embedded into all sorts of rotten devious ‘act normal , health magically becomes normal’ tosh). I

I think to me the more I explore this the more it underlines how psychiatry in particular, certainly the old psychosomatic and old guidelines believers , and deffo psychologists who’ve spent their time focusing on behavioural and ‘health anxiety’ niches need to be cast completely out of being near patients or speaking on us in any context. Because those who’ve put themselves into those niches aren’t going to change and don’t have the breadth to offer any illness that isn’t psychosomatic anything other than this ‘reframing of truth/ belief system to theirs’ type thing, as they don’t have (or want to develop) that string to their bow.

this is why terminology matters. And locus if who these clinics are sited under matters.

 

[Creekside]

I think there is a role for professionals, for people with real practical knowledge, so that every family doesn't have to learn everything about living with ME/CFS by trial and error.

I think it's one of those cases where an ideal professional could help, but will that be 1/1000 or 1/10000000000000 professionals? How do you determine which professional is perfect enough to actually help rather than harm?

If a non-profit organization creates a guide to pacing (edited after critiques from this forum ), that might be useful. For-profit professionals or self-proclaimed experts are less likely to be helpful. Client reviews would help identify who is actually worth trying, except how trustworthy are the reviews?

I agree that some PWME might benefit from professional assistance in pacing, but by the same token, some people benefit from buying lottery tickets ... but the majority just lose money.

 

[bobbler]

Ironically, this is also something that is more useful for professionals than patients, but they completely miss the forest for the giant void in space.

Heart rate is not supposed to jump to 140 getting up and walking a few meters, or brushing teeth. This is objective evidence of something wrong. And it has been confirmed in numerous studies that we are not deconditioned, to the point where psychobehavioral ideologues will literally argue that sometimes if GET doesn't work well enough it's because the patients are active enough. They see nothing wrong with the blatant contradiction, because it's entirely self-serving.

But instead it's completely dismissed and used to, somehow, argue it must be anxiety. Or fear. Or whatever. Which is absurd and ridiculous but here we are, decades later, at the exact same spot where this all began, making grand affirmations about this.

Otherwise it has some utility in confirming that you are going above the limit, but most of the time you can feel it anyway. So it's just another case of systemic professional failure leading to even more failure, because they choose to disbelieve the tools of their trade whenever those tools conflict with myths and beliefs.

Well of course if any of the HCPs who are attached to the clinic aren’t qualified to look at someone’s heart rate, take blood pressure ie ‘do healthcare’ as they are just there as staff who can only offer … well to be honest I’m not sure if there’s anything they even do do that really is what they are qualified for as it’s often physios wanting to tell people they have anxiety - which they aren’t really either trained or under registration to do either even if it wasn’t them doing that as cover for them not being for sure physical nurses or doctors who can check the illness and health markers

 

[Lou B Lou]

I imagine that any of them who are guided by BACME, and those influenced by AfME as it is in their Pacing booklet.

Pacing A5 booklet Oct 2023 aw.indd

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


Page 43
chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.actionforme.org.uk/uploads/pdfs/Pacing-for-people-with-ME-2022.pdf

' ... a 2019 survey of more than 90 NHS professionals working in pain/ fatigue management (not necessarily specialist M.E. services) found that 87% considered “gradually increasing activities” to be part of pacing.1

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.'

.

 

[Kitty]

I think it's one of those cases where an ideal professional could help, but will that be 1/1000 or 1/10000000000000 professionals? How do you determine which professional is perfect enough to actually help rather than harm?

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.

 

[Kitty]

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.'

Can you believe they missed off the last sentence? I'll put it right for them.

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. Note that it should never be used if the person has, or is suspected of having, ME/CFS.

 

[bobbler]

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


Page 43
chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.actionforme.org.uk/uploads/pdfs/Pacing-for-people-with-ME-2022.pdf

' ... a 2019 survey of more than 90 NHS professionals working in pain/ fatigue management (not necessarily specialist M.E. services) found that 87% considered “gradually increasing activities” to be part of pacing.1

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.'

.

this is just 101 in reframing that black is white cognitive dissonance? And using as much ambiguity as possible to make no concrete points there to stymie just debunking each one by one?

I think the thing is these areas and people have demonstrated they want their field to stick to its knitting.

we now just have the equivalent of where I’ve seen companies being accused of being focused on ‘jobs for x,y,z ‘ rather than offering the right thing.

there might be some professionals like physios for me and workwell foundation who are able to listen and develop understanding from studying and listening to experienced patients in this context - they don’t come from this behavioural ‘not thinking critically but learn a story by rote deliver one-way’ skill set either.

I think Jonathon put his finger in it with that line (about professions/professionals that are encouraged and able to think critically)


Of course we've people who want that area to exist and have the jobs and money they want for doing what they want to exist. It’s only in ME/CFS where people don’t get called out on it.

I’d be interested in who this person was - if it’s one of those making a career in it or a medic being sold to by them or someone who says they think they are a patient who recovered from what they think was the same thing as others who didn’t

but it’s somewhat a distraction of revolving that same conversation so we still don’t get basic healthcare access just so people can fester in denial who at worst might have to change their job a bit vs people dying. But people tend to not have that perspective if not being the hardest done by and use that ‘reframing’ nonsense to convince themselves what they want to believe is true (as if it all works for everyone if only patients wouldn’t get worse…. Ahh that’s the solution they just need to stop getting ill when they do it then everyone’s happy)

 

[bobbler]

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.

Nah

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 - what they need/reasonably expect and assume they are getting when referred to a medical clinic, is medical advice and medical feedback

the problem with GET was that it told GPs to lie to patients that as their health was getting worse it was actually getting better and they were just going mad.

that’s the same principal this person wants to continue with whatever new term.

Most healthy people get fit in sport by doing whatever training and watching their ability to do x get easier and then being better

most ill people with any other condition are offered honest safe medical care that might do blood tests or pressure or whatever before an appointment, assess their health at the appointment (how’s the last six months been) . And the says either what they are doing is working, needs to be tweaked or they need investigation because ‘something else’ seems to be complicating the picture


Not only has this feedback been removed because those people we are sent to aren’t qualified but are pretending they are (to me no different to the objection to if physician associates appointments were given pretending someone was seeing a gp)

but these people are also misleading patients by giving feedback not based on medicine or health or understanding the condition … but their beliefs. And an old model of a different opposite fictional illness from unicorn days.

if you imagine the experience cliche of 10,000 hours for learning a skill. And the counter intuitive nature of me/cfs.

the old staff have zero as they’ve been learning old stuff and mostly closing their ears to patients.

I divided 10,000 by 24hrs and it comes up with 416 days (if that was 24hrs if learning - but then maybe it’s less than that if we aren’t learning when we sleep but then that’s part of the illness is the affect on sleep) . So maybe we are looking at at least a year and a bit just to get used to your new body.

gaslighting will interfere with this. Talking to others who are honest and not using mind reframing will be useful not just for emotional but to help ‘compare that what you observed was consistent’

I mentally can’t finish this thought experiment in full right now but hope you get the gist of trying to think

Everyone in other stuff is happy to sometimes learn from others mistakes or experiences if they feel they get enough detail and context (to know how the situations compare)

At schools and unis there are often mentors and buddies now who are a year or two ahead , similar with some workplaces

 

[Kitty]

I’d be interested in who this person was

I imagine some of them are people who're not in a position to change policy themselves, and would face disciplinary action if they tried to plough their own furrow.

It's no excuse for not trying, assuming they understand that what they offer is less than ideal (some won't), but in large organisations policy and procedure often comes before common sense and humanity. Public services are worst of all for it—staff trying to get round a problem have to use solutions straying into the realm of farce because It's Policy.

There could even be boards or trusts that think their policy is in line with the NICE guideline, even though it isn't. Or some that would like to introduce updates but have been denied funding to retrain their staff, or can't retrain them because there are no certified training materials.

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