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

[Jonathan Edwards]

GET is built on a deconditioning model but pacing up is pragmatic; it doesn’t depend on a theory.

I wonder who wrote that. Pacing up depends on the theory that pacing up makes people better. It isn't pragmatic because nobody stopped to see if people were actually getting better for it.

This is exactly the false logic and unjustified belief in (absent) methodological understanding that needs to be weeded out.

 

[Kitty]

Wouldn't they get multiple mutually contradictory experiences, since PWME differ so much?

I don't think a counsellor would, especially one trained in supporting people with acquired disabilities to adapt to their circumstances. They understand that people are where they are, and all of them are totally different.

The nature of the disability isn't really the issue. It's understanding that individual's experience of it, and the counsellor learns about it from their viewpoint.

I haven't been through this process myself, but I know disabled people who have. If I thought it would still benefit me (I don't think that's the case, I've long since reached an accommodation with ME/CFS), the concerns about the BPS wing of the movement wouldn't put me off. It would just make me careful.


ETA:
The object of this type of therapy couldn't be more different from BPS approaches. It doesn't look to treat illness or reduce the impact of an impairment, the aim is to support people through the (sometimes prolonged) process of adapting to living with it. "It", the impairment, is accepted as a fact.

BPS theory regards "it" as a not-fact. Or at least, as something that would be negotiable if only people changed their attitude to it.

 

[alex3619]

Going out on a limb, way before there is sufficient evidence or I fully understand the claim, I could argue the Perikles hypothesis is basically PEM derives from both local hypoxia and systemic responses to hypoxia. So I might call it Systemic Hypoxia. Blood oxygen might be normal but that does not matter in these specific issues. Investigating a bit more the claim is our muscles get overwhelmed with hypoxia after 30s, hence his 30s rule, though there are exceptions such as thigh muscles on stairs being overwhelmed in just 10s. The brain can also be overwhelmed.

Further, our hypoxic tendences might be related to specific muscle groups, and even specific areas of the brain. Brain hypoxia, muscle hypoxia and hypoxic counter responses are an area in which I have long been interested. My first adventure in explaining ME was looking at hypoxia, in 1998. My mechanism was probably wrong though. OI might increase hypoxia too, and any mitochondrial suppression signal will make things worse. Also low blood volume is basically a form of anemia that regular anemia testing will not detect, you need nuclear medicine to determine the actual blood volume.

It might be tempting to point out that many different explanations are honing in on the same issues, but its far too premature to decide if any is correct or complete. We cannot yet see the source of the blaze, but we can smell smoke.

 

[Sean]

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

As Susan Sontag said (in Illness as Metaphor):

Theories that diseases are caused by mental states and can be cured by willpower are always an index of how much is not understood about the physical terrain of a disease.​

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.

Maybe do a video styled after the one by Chalder and Gerrada, but telling the truth this time.

 

[NelliePledge]

Great idea about the video @Sean

 

[bobbler]

As Susan Sontag said (in Illness as Metaphor):

Theories that diseases are caused by mental states and can be cured by willpower are always an index of how much is not understood about the physical terrain of a disease.​

Maybe do a video styled after the one by Chalder and Gerrada, but telling the truth this time.

Weird you say that because I had a dream last week of taking that video and doing a debunk which basically takes each misinformation point and does a big family fortunes giant cross and buzzer sound and points out why it’s untrue, what harms it will lead to etc

I think we need to make the advice on the what ‘to do’ as simple as it always should have been rather than all this pacing nonsense:

energy conservation . Identifying people have limits and the more ill they are (in many of this generation due explicitly to having been forced by this Gerada etc stuff to never take rests when normal people eg get ill or stressed - I say this because I’ve been on the receiving end where advice fir something else has changed from ‘remove from situations and rest’ to ‘no you mustn’t stop as you’ll get worse’ once they found out I had ‘cfs’) the more fragile those limits need to be

I think people just need to be reminded we are ill people like others they know who had something nasty - just the difference is those got treatment (and sadly if eg cancer treatment doesn’t work or other treatments don’t fit other things they get iller too) if they recovered and reminding people we instead got deliberately battered by the opposite in an intimidate everyday continual sense preventing us from ever getting ahead of it or getting our feet under gif a moment by deteriorating us fast than anyone could get adjustments even to ourselves realising how much iller we were than the two months before

I think the more basic and obvious we can make what we always needed the better. And point out the convoluted nature has been due to misguided ‘compromises’ with lunacy often

think how simple the 2021 guideline could and should have been if it was just experienced medics instead of having to appease the 200 kingdom builders who want to deny their mind twisting is harmful and has no place

that’s not the patients fault but when people think they are doing the right thing by compromising it leads to the straightforward becoming something even more convoluted than the loony bs on its own - because it would because of course two opposites can’t make sense together.

 

[poetinsf]

This is a well written response, Trish. "Pace up" should really be called "adaptive GET" since it has more to do with GET than pacing. I used to hold out hope for GET in the early stage of my sickness. All I remember is dropping like a fly hitting the brick wall every time I try to increase duration/intensity of my walk. That went on for years till I finally decided that GET doesn't work once and for all. There just isn't evidence of GET improving the baseline.

If that envelope expands due to unknown good fortune, then of course people will naturally start doing a bit more.

I'll agree with that. I hear so much about this fear of PEM limiting activities, but it appears to me that most of ME/CFS patients are doing more, not less, than they should. They'll naturally know when the baseline goes up and do more accordingly. That was my experience at least, when I was suddenly able to sit up more back in 2016. A flurry of activities till the improvement faded away a few months later.

 

[poetinsf]

I recommend against exercise. But I am also open to this being a situation where the poison is also part of the treatment.

Consider electrolytes in cholera.

My analogy was something like peanut allergy. You gradually increase your exposure to peanut protein to build up tolerance. The problem with analogies is that they merely suggest possibility rather the evidence, or even likelihood. In case of GET, it's been tried and trialed and they yielded no evidence so far. To me, continuing to hold out hope for GET is like holding out hope for antivirals despite the failure for decades. I think sometimes it's better to chuck it entirely than keep digging, hoping that there is a nugget in there somewhere, if the effort failed to yield evidence for so long.

 

[poetinsf]

Being fitter doesn't cure my me/cfs but it does push out my pem threshold because what counts as exertion is more and more.

It sounds like GET does seem to work for you, at least to some extent. Perhaps you are much more careful than others? I'd love to hear more about your experience. Mine consisted mostly of walking and increasing just a few more steps per minute had been enough to knock me out. I was never able to get past 90 steps per minute and stay safe. Listening to other patients' experience has been the best value I've been getting from forums like this and it would be great to hear about your exercise regimen.

 

[Utsikt]

My point is those who do manage to increase activity levels it's likely that improvement came first, then enabled them to do more.

This tracks with my understanding of PEM after 3 years of LC and now ME.

The rule is simple: don’t cause PEM, wait for a stable improvement (weeks), and use at most half of that improvement.

 

[Utsikt]

Going out on a limb, way before there is sufficient evidence or I fully understand the claim, I could argue the Perikles hypothesis is basically PEM derives from both local hypoxia and systemic responses to hypoxia. So I might call it Systemic Hypoxia. Blood oxygen might be normal but that does not matter in these specific issues. Investigating a bit more the claim is our muscles get overwhelmed with hypoxia after 30s, hence his 30s rule, though there are exceptions such as thigh muscles on stairs being overwhelmed in just 10s. The brain can also be overwhelmed.

Further, our hypoxic tendences might be related to specific muscle groups, and even specific areas of the brain. Brain hypoxia, muscle hypoxia and hypoxic counter responses are an area in which I have long been interested. My first adventure in explaining ME was looking at hypoxia, in 1998. My mechanism was probably wrong though. OI might increase hypoxia too, and any mitochondrial suppression signal will make things worse. Also low blood volume is basically a form of anemia that regular anemia testing will not detect, you need nuclear medicine to determine the actual blood volume.

It might be tempting to point out that many different explanations are honing in on the same issues, but its far too premature to decide if any is correct or complete. We cannot yet see the source of the blaze, but we can smell smoke.

I like his theory because it focuses on something they found to be wrong, and then they try to work around it. It might not be what’s wrong with you, but I’ve heard personal anecdotes about significabt improvements from this method. Although I’ve never heard about major improvements for anyone with POTS and PEM.

In Norway, some of the pwLC use what they’ve dubbed «the 30-second method» as a way of reducing the energy cost of any given activity. If anything, it gives your frequent breaks where your can properly assess your symptoms and limits, and a natural stopping point. Training yourself to stop frequently might also make it easier to stop when you have to. So you can use the method without «pacing up».

 

[Utsikt]

Is it fair to say that this is a good rule of thumb?:

You can’t force an improvement, you have to wait for it while avoiding deterioration.

This goes for any intervention. So far, I’ve yet to see any evidence of anything that can guarantee an improvement for any given patient, including proper pacing.

There are probably measures your can take to try and make it possible to have an improvement, but there are no guarantees. This seems to go against how most healthcare workers want the world to be, but it’s quite common for many chronic conditions. Maybe the terrible QoL and FC of pwME makes it harder to accept that you can’t do anything for them, and therefore it nudges them towards any kind of «solution». Wanting to help becomes a drawback if helping is only about making someone better, and failing to make someone better means that you or the system has failed.

Apologies for multiple replies, I’m still getting used to this..

 

[MrMagoo]

I think if I were reading about how to pace, I’d have needed someone to tell me it’s a coping mechanism not a cure. It’s nice to “even out” energy expenditure so that you’re not pushing yourself then recovering, but just being on an even keel, whilst it has its benefits, it still hurts, I’m still tired, I don’t feel much “better”. Not mentioning this, then dangling the “pacing up” as a carrot is just cruel.

 

[Murph]

It sounds like GET does seem to work for you, at least to some extent. Perhaps you are much more careful than others? I'd love to hear more about your experience. Mine consisted mostly of walking and increasing just a few more steps per minute had been enough to knock me out. I was never able to get past 90 steps per minute and stay safe. Listening to other patients' experience has been the best value I've been getting from forums like this and it would be great to hear about your exercise regimen.

I'm happy to answer this but I don't want anyone to think I'm recommending this for them. I've had mild me/cfs for 22 years now and I know my body and this is what works for me:

Walking has usually been the worst idea for me. I can walk a bit - I'm mild. But there's a hard limit and I can't increase my walking by walking.

Where I can improve steadily is strength. The best kind of strength for me is recumbent strength. Situps are something I can do just fine, slowly increasing the number. I also do plank and i've added in some upper body strength exercises too with small weights. And recently a few squats as well. I have POTS and there's some evidence that increased leg muscle can improve blood pooling in pots. So I feel this is a good investment of my limited energy. I even got my bike out of the shed in 2024 and did a few bike rides, building up slowly. My first effort was a 2 minute, 800m bike ride on flat ground followed by a 5 day rest. After 4 months of slow progress I got to the point of being able to ride 3km without stopping.

The gym bros talk about "training to failure" meaning lifting heavy weights until you can't, and that's not the way for me. I train to a slight strain then stop. And I use achievable weights and probably manage in 6 months the amount of strength and muscle gain a healthy person can get in one month. But I notice big upside from it.

(However this whole program is always on a knife-edge. Even with my years of experience and my gentle approach I can get PEM. for example I fell apart over xmas and I feel super fatigued and am currently doing no exercises, just resting! I hope to rest my way back to a place where I can start exercising again soon. This is why I think exercise is likely too risky for people who are moderate or severe or who have a history of multi-week/multi-month PEM.)

edit: there's actually five other things I do to make exercise a success that I should mention.
1. do it in the early evening. I'm one of those people who often feels a bit better around 6pm. I use that window to exercise and that is notably less likely to lead to PEM than morning or afternoon exercise.
2. Take paracetamol. At first I found paracetamol eased brain fog during fatigue. I started taking it earlier and earlier in PEM until I began using it prophylactically, i.e. before exercise. Paracetamol, research says, can prevent microglial activation. Is that why I perceive this works? or is it mere superstition!?
3. Eat enough. low blood sugar = mega PEM. And I do seem to need to eat a lot.
4. start slow. If I go to my max output in the first minute I get PEM. Even if I go for a walk I always start in the downhill direction.
5. whey afterward. This is the armstrong-Mella theory that the body preferentially uses amino acids. My doctor (the late Dr Lewis) suggested hydrolysed whey protein isolate and I think it makes a difference to recovery/chance of PEM.

hopefully this emphasises that I'm not just blithely straining myself no matter how I feel. I'm creating a defined set of conditions in a very narrow window and doing a very limited amount during that window.

 

[Sean]

I would like to see the end of the idea that specific dedicated exercise is some separate thing from daily life. The artificial separation of exercise from normal life is one the problems with exercise advice, as it removes the meaning or value from the activity, and for many is an inefficient use of their limited time and energy.

Sweeping the floor, cleaning the bathroom, doing the washing or shopping, preparing meals, etc, all involve real meaningful physical effort, comparable in effect to 'exercise'.

The only area I think specific dedicated exercise has a role is for specific problems, such as a torn rotator cuff, or recovering from a hip transplant, etc, and only as part of the picture.

The only exception to that I can think of is going for a walk or bike ride, as it gets you out of the house, and helps break up the daily routine a bit. Even then they can be incorporated into more practical activities, like shopping.

 

[MrMagoo]

I would like to see the end of the idea that specific dedicated exercise is some separate thing from daily life. The artificial separation of exercise from normal life is one the problems with exercise advice, as it removes the meaning or value from the activity, and for many is an inefficient use of their limited time and energy.

Sweeping the floor, cleaning the bathroom, doing the washing or shopping, preparing meals, etc, all involve real meaningful physical effort, comparable in effect to 'exercise'.

The only area I think specific dedicated exercise has a role is for specific problems, such as a torn rotator cuff, or recovering from a hip transplant, etc, and only as part of the picture.

The only exception to that I can think of is going for a walk or bike ride, as it gets you out of the house, and helps break up the daily routine a bit. Even then they can be incorporated into more practical activities, like shopping.

Good point. When first diagnosed, I was working in Central London and a friend of a friend was a consultant. They mentioned I had been diagnosed. He asked if I travelled on the tube to work? As that was plenty enough “exercise” and not to feel the need to do any extra.

 

[Trish]

Walking has usually been the worst idea for me. I can walk a bit - I'm mild. But there's a hard limit and I can't increase my walking by walking.

Where I can improve steadily is strength.

Thanks for sharing your experience, @Murph. I think your description demonstrates key points about attempting to increase exercise.

In ME/CFS there are limits on how much exertion we can do without triggering PEM, however fit we are. But some people with mild ME/CFS may have sufficient capacity before hitting that limit to do some strength training.

That's not the case for many of us who are already stretched to our limit with necessary activities of daily living, so have nothing left for strength training. I tried recumbent strength training very gently when my ME was mild, it crashed me every time.

 

[Turtle]

In the last century I tried my own pacing up/GET, more pwME friendly.
My first attempt on a normal bike got me stranded after 400 m on a very small (1 meter) bridge, I had to be pushed home.
So later I tried a hometrainer (no need to push home) starting at 50 meters en every 5 days adding 50 m, if possible.
I got stranded everytime I reached 800-900 meters, muscles exploding with lactate.
After 3 tries I stopped, I concluded: not helpful, but harmful.
Why can't professionals get that?

 

[Utsikt]

After 3 tries I stopped, I concluded: not helpful, but harmful.
Why can't professionals get that?

It’s difficult to change your mind without strong incentives (like PEM).

And some just want to be of help, so they end up focusing too much on trying to force or create an improvement.

 

[Kitty]

I would like to see the end of the idea that specific dedicated exercise is some separate thing from daily life.

This.

It seems to be ingrained at every level of healthcare, even when it's obviously nonsense.

We had a right old palaver when the community physio decided my 85-year-old mam needed to do seated leg exercises to keep her muscles strong. She couldn't always remember to do them, which to them was a problem. They tried setting an alert on her mobile, but if she wasn't wearing her hearing aids she couldn't hear it. Oh dear, another problem that's such a risk to her wellbeing it needs a really elaborate solution.

All the time they knew she had an overactive bladder. She got up out of her chair a dozen times a day, walked to the bathroom, sat down on the toilet, stood up again, walked back. What's more, she never forgot to do it. But it doesn't count as exercise unless someone has to be paid to teach you how to do it.