May have accidentally stumbled upon the true intentions of the "Pacing-Up" Approach

[Elara Grey]

I accidentally came across a post on social media that may explain the aim of the 'CFS Recovery' and BACME-style version of pacing aka "pacing up".

The post read to me as yet another programme being sold for financial gain, and isn't my cup of tea.

However, it explains a lot. The words from the post are below (AI compilation from screenshots):

----- Start quotation:

BASELINE? PACING? NOT PACING?​

​

How seemingly conflicting advice sent me into a confusion spiral — and what I learned​

In 2026, after 7 years of chronic illness, I committed to one thing: stop the push-crash cycle, find my baseline, build slowly. But the crashes kept coming.​

​

A friend (Sue, recovered after 20+ years with ME/CFS) reminded me: the thing that helped most was baseline — having that structure.​

What baseline means: Reaching stability where you're not pushing and crashing. Learning what you can do without worsening symptoms. Stabilise for a few weeks, then increase activity by 5–10% at a time, each new activity at only 50% of capacity. Stabilise. Increase again.​

​

I thought that's what I was doing — until a Heal programme co-founder said they don't recommend pacing. I spiralled. Then I contacted him directly and discovered his definition of pacing was different to mine. What he recommended was essentially what I was already doing and calling pacing.​

​

The research rabbit hole led to a reframe:​

"Pacing" has historically meant stopping any activity that causes symptoms — which can lead to getting stuck, bedbound, and regressing. Avoiding symptomatic activity can reinforce the body's fear response and worsen symptoms over time.​

​

The reframe: It's not about pacing activity. It's about pacing the nervous system. Teaching the body it is safe again. Dr Naviaux's Cell Danger Response research describes how the autonomic nervous system, under sustained threat, can lock into a protective metabolic state long after the original danger has passed.​

​

So what now?​

The approach is the same — but the understanding is deeper. It's not about doing less or more. It's about how the nervous system feels while doing it. Building at a pace where the body feels safe, not pushed past its limits.​

"It's not back to square one. It's on to square one — with more tools, awareness, self-compassion, and acceptance than ever before."​

----- End quotation.

Bolding and underscoring mine for emphasis.
Source: @mind.body.heal on Instagram, publically available. Accessed 11th May 2026.
Link here if you don't mind messing your algorithm up.

Ahhh. So there you have it, folks. Perhaps this explains the same premise of the likes of the BACME approach? Or a similar premise? A premise that hasn't been explicitly written into their therapy guide or documents. But maybe this is it? Plausible deniability that "pacing up is not based on deconditioning".... If they have reframed pacing as "slowly teaching the nervous system it's safe".

There's the ick we all knew was there!

I still call it BS, and it's still a psychological approach at the end of the day, no matter how much it (BACME approach) is dressed up in borrowed biomedical language. It's still trying to train the 'nervous system' that the smoke alarm is a false alarm without having addressed the fire burning the building down.

 

[Alinda]

Its just the same as what I was teached in CBT and GET, like 0 difference. It's so dangerous.

 

[Elara Grey]

Its just the same as what I was teached in CBT and GET, like 0 difference. It's so dangerous.

Precisely.

 

[Trish]

That sounds like a variation on the BACME dysregulation model that is based on misapplying poor quality unreplicated research. They don't say their pacing up is based on deconditioning, but on desensitising and regulating various body systems by stabilising then increasing.

Initially the focus is on consistency and regulating, to support stability beforeincreasing the level of demand. This should be done gradually allowing developmentof tolerance and adaption prior to any further increases in demand, to enable thebody to rebalance.Therapy programmes should work on different phases of stabilisation and thenbuilding tolerance.

It's all nonsense. It sucks people in because the initial advice to reduce activity and stabilise symptoms feels good and gives a sense of control, so pwME believe the therapist that the next stage of increasing activity will improve their health, instead of which they keep crashing, and blame themselves for doing it wrongly.

 

[Jonathan Edwards]

I still call it BS, and it's still a psychological approach at the end of the day, no matter how much it (BACME approach) is dressed up in borrowed biomedical language. It's still trying to train the 'nervous system' that the smoke alarm is a false alarm without having addressed the fire burning the building down.

I agree that this is the BACME nonsense. However, it may well be that we will end up seeing ME/CFS as a false alarm problem. So far we have no evidence of anything burning down. It all seems in order. What is BS is the idea that if the nervous system is set to fire off alarms when it shouldn't that you can change that by keeping quiet and then sneaking up on it. There is zero reason to think that would work.

And if there is a false alarm it is not at a 'psychological' level but at a chemical level probably much further down the central nervous system than where anything is 'felt'. Maybe in the dorsal root ganglia cells or hypothalamus. Maybe in the vagus nerve.

We know of diseases where that sort of thing happens - familial Mediterranean fever, where the alarm signals are even further down in body tissues and familial episodic pain syndromes where I guess the alarm is in the sensory nerves. If there is a small fibre neuropathy in fibromyalgia that may well be where false alarm signals arise. And so on.

 

[Elara Grey]

That sounds like a variation on the BACME dysregulation model that is based on misapplying poor quality unreplicated research. They don't say their pacing up is based on deconditioning, but on desensitising and regulating various body systems by stabilising then increasing.

My thoughts exactly. I was wondering if BACME haven't written in precisely that it's based on "making the nervous system feel safe" on purpose. Writing it like that into their literature would be a dead giveaway that they're still following a BPS approach. However, writing it as 'regulating body systems to stabilise and then building tolerance' and going on about "dysregulation" is the same thing... But gives them plausible deniability through word choice.

But their clinics are full of talk about the nervous system...

So yeah, I think I was more trying to say that perhaps the whole dysregulation model approach is just specifically chosen words for "building nervous system safety". Linking with other discussions, the concept of the "dysregulation model" is basically unfalsifiable. No doubt that's on purpose.

I wonder whether they are really using that language as a cover for the above definition of pacing as "building nervous system safety"? Language matters, and had they written it differently, defining it like the above, then there may have been a way of establishing their premise as false.
Both are essentially the exact same thing... At least in my experience. And the same as CBT and GET.
All just cleverly worded in the dysregulation model so that it's difficult to falsify.

It's all nonsense.

Quite. Just nonsense that's difficult to dismantle the way BACME have chosen their language.

 

[Elara Grey]

However, it may well be that we will end up seeing ME/CFS as a false alarm problem

Sure, I understand that perspective from the way you're describing it and that may turn out to be a possibility one day. Perhaps not my best analogy using smoke alarms and fires... But yes, I get what you're saying.

What is BS is the idea that if the nervous system is set to fire off alarms when it shouldn't that you can change that by keeping quiet and then sneaking up on it.

Absolutely!

 

[Jonathan Edwards]

I wonder whether they are really using that language as a cover for the above definition of pacing as "building nervous system safety"?

I think you may be attributing a higher level of analysis than is needed. I think they have picked up on some nice sounding words. I am not sure there is more to it than that.

The error is to use the psychologists' assumption that once you have identified something wrong you can magically put it right by telling it how to go away. Telling TRPM3 how to go away isn't much good because TRPM3 doesn't speak English! And it probably doesn't take much notice of psychologists, or indeed a bit a gentle 'up pacing', anyway.

 

[BrokenBeaktheBrave]

So far we have no evidence of anything burning down. It all seems in order.

Wouldn't people dying from starvation because they can't swallow be evidence that something is going wrong? Do we know why very very severe MECFS lose their ability to swallow?

 

[Hutan]

What is BS is the idea that if the nervous system is set to fire off alarms when it shouldn't that you can change that by keeping quiet and then sneaking up on it. There is zero reason to think that would work.

I don't think the idea is obviously bullshit, I think there are reasons why people might initially think that could work. I think that is part of the problem, it seems plausible.

I don't even think that initially carefully trying symptom-contingent pacing up (without all the 'keeping in a place of psychological safety nonsense') is a terrible idea. Many of us, confronted with ME/CFS symptoms, at first did try something like pacing up. We thought if we gradually 'got fit' again, we would come right. There are the examples of phobias, where gradual careful exposure can stop physical responses to a trigger.

It's natural to think that making an effort to gradually getting back to normal might work. That's because so many of us have naturally recovered from significant infections before, and that coincided with being able to do a bit more over time (usually over a short time e.g. a few weeks). We think 'perhaps I just haven't tried hard enough this time'.

The problem is, it doesn't work for ME/CFS. It's sort of baked into the definition of ME/CFS - attempts to resume normality, no matter how gradual and careful, don't work.

The stupidity and the hubris is in suggesting that, if a patient is telling you that they have tried multiple times to get back to normal only to end up crashed, that they just aren't doing things right. And in believing that if lots of patients are telling you this, that the problem is that they are all lacking in the necessary commonsense and moral fibre to return to health, rather than they have a medical condition. And, in believing that the low quality BPS trials and the over-optimistic short term responses on end-of-treatment surveys provide evidence for this approach.

 

[rvallee]

Reads exactly like the same old BS to me. The random "bio" bit with the cell danger response will probably be a moving piece. There's always been some fake biological explanation allowed, but everyone can choose their own and whoever wrote that chose this one.

Same difference. Recycling the same nonsense with tiny distinctions (though no differences) has always been the game. The whole "calming the nervous system" did get some traction in the LC community, so that might be the fashionable thing for a while. Until it cycles back to another old thing, then maybe a tiny variation on other things.

Alternative medicine pseudoscience, basically, aka bullshit.

 

[MrMagoo]

The level of deception and weaponised misunderstanding of language in relation to pacing, and ME/CFS in general, is very wearing.

Pacing is the name of a strategy to manage (imagine I put manage in bold, caps, underlined etc) symptoms, in the absence of any firm knowledge, understanding or treatment.

Yet it is constantly misinterpreted. As are the symptoms of ME, the lived experienced and the research.

Things were more truthfully authentic under Chairman Mao in China, I imagine. It would make a fascinating psychological study.

Maybe all these people who have worked out how to recover would be so good as to band together and fund a study to show how they did it, and publish a paper on it, instead of cluttering up insta/TikTok/newspaper comments etc

 

[Elara Grey]

I didn't land my original point clearly enough, here's hopefully a more coherent attempt.

My idea was with regards to previous discussions that BACME's theory and guide to therapy are basically unfalsifiable. What I was trying to point to earlier was not really about providing a theory that their language was carefully chosen on purpose to avoid saying the exact words the social media post used. What I was trying to get at, through brain fog, is that BACME’s unfalsifiability (through vague language) is actually a gift to us, and not a dead end.

That social media post accidentally stated the underlying premise in plain English exactly. Which is: "teaching the nervous system it's safe" (through a corrupted definition of pacing)....

Although that hasn't come from BACME, it made something else click in my head. Basically, it handed us (well, me) a Rosetta Stone. A translation tool. It unwittingly deciphered BACME's imprecise language into a plain statement that can be examined.

Seeing it stated so plainly made something else jump out for me. The way BACME have written their literature relies on vague language. On purpose! The vague language is the glue holding it together and making everything unfalsifiable. It needs the imprecision in order to survive.

The moment you state the premise plainly, the questions it cannot answer become blindingly obvious.
And, those unanswerable questions arise straight out of the contents of BACME's own documents.

Their dysregulation document describes structural pathology, although they also state uncertainty. They talk of mitochondrial dysfunction, immune activation post-exertion, dropping anaerobic thresholds.

Then, their therapy proposes behavioural intervention. The important catch of what's missing is that there is not a single sentence anywhere connecting the two with a demonstrated mechanism. We have looked at each document separately, but not both together and how they would work in conjunction with each other. (They don't).

The plainly stated translation of their pages and pages of verbostity, made this stand out like a sore thumb:
"teaching the nervous system it's safe" doesn't address mitochondrial dysfunction. It doesn't restore anaerobic threshold. Their own (poorly described) biology says so.

The unfalsifiability is the point, not the obstacle! And it's handed to us on a silver platter. It is BACME’s greatest weakness, not our stumbling block in trying to disprove their model and therapy programme.

A model deliberately constructed to be immune to the evidential standard required of every other medical intervention is doing the opposite of demonstrating scientific rigour! They're avoiding it, by design.

We don't need to falsify their model or the therapy approach. The burden of proving or disproving anything isn't on us.

I haven't gone through the thread about it more recently, but I'm sure I recall these veins of thought being said and/or alluded to. So I apologise if I missed anyone else pulling it all together! I haven't had the capacity to be on here much recently.

But, back to my point: BACME are proposing an intervention. Their own documents acknowledge biological abnormalities worsened by exertion. Their intervention increases exertion.

For genuine informed consent, patients would need to know:
- That BACME's own described biology predicts that the intervention could worsen the identified pathology
- That no mechanism connects their model to their treatment
- That the intervention is structurally identical to GET despite their denial
None of that is in what patients receive! Why would they explain it to patients? The gap exists in their own published documents.
There's an additional ethical point in amongst that, that potentially could be drawn out as an argument against them, too.

So, to approach it differently, perhaps we could ask them publicly:
“What is the specific biological mechanism by which your intervention addresses the pathology your own documents describe?” And, not the pathology described vaguely as "dysregulation." The very pathology they claim to acknowledge in their documents. (They talk of all sorts).
What exactly does “tolerance” mean at the level of "mitochondrial function"? (Their included words that they have left a gap in linking).
How does gradually "increasing demand" restore a "dropping anaerobic threshold"? (Also their own words used, with a gap in linking treatment to biology.)

If they can answer specifically, it can be tested. If they can't, and I don't believe they can, that absence confirms the vague language was never covering a precise answer.

We don't need to prove intent or anything else, and we don't need to disprove anything either. We need to ask the questions that their choice of vague language was designed to avoid!

PS. Sorry for any poor flow or poor grammar. I'm tired now!

 

[MrMagoo]

I didn't land my original point clearly enough, here's hopefully a more coherent attempt.

My idea was with regards to previous discussions that BACME's theory and guide to therapy are basically unfalsifiable. What I was trying to point to earlier was not really about providing a theory that their language was carefully chosen on purpose to avoid saying the exact words the social media post used. What I was trying to get at, through brain fog, is that BACME’s unfalsifiability (through vague language) is actually a gift to us, and not a dead end.

That social media post accidentally stated the underlying premise in plain English exactly. Which is that the underlying premise is: "teaching the nervous system it's safe".

Although that hasn't come from BACME, it made something else click in my head. Basically, it handed us (well, me) a Rosetta Stone. A translation tool. It unwittingly deciphered BACME's imprecise language into a plain statement that can be examined.

Seeing it stated so plainly made something else jump out for me. The way BACME have written their literature relies on vague language. On purpose! The vague language is the glue holding it together and making everything unfalsifiable. It needs the imprecision in order to survive.

The moment you state the premise plainly, the questions it cannot answer become blindingly obvious.
And, those unanswerable questions arise straight out of the contents of BACME's own documents.

Their dysregulation document describes structural pathology, although they also state uncertainty. They talk of mitochondrial dysfunction, immune activation post-exertion, dropping anaerobic thresholds.

Then, their therapy proposes behavioural intervention. The important catch of what's missing is that there is not a single sentence anywhere connecting the two with a demonstrated mechanism. We have looked at each document separately, but not both together and how they would work in conjunction with each other. (They don't).

The plainly stated translation of their pages and pages of verbostity, made this stand out like a sore thumb:
"teaching the nervous system it's safe" doesn't address mitochondrial dysfunction. It doesn't restore anaerobic threshold. Their own (poorly described) biology says so.

The unfalsifiability is the point, not the obstacle! And it's handed to us on a silver platter. It is BACME’s greatest weakness, not our stumbling block in trying to disprove their model and therapy programme.

A model deliberately constructed to be immune to the evidential standard required of every other medical intervention is doing the opposite of demonstrating scientific rigour! They're avoiding it, by design.

We don't need to falsify their model or the therapy approach. The burden of proving or disproving anything isn't on us.

I haven't gone through the thread about it more recently, but I'm sure I recall these veins of thought being said and/or alluded to. So I apologise if I missed anyone else pulling it all together! I haven't had the capacity to be on here much recently.

But, back to my point: BACME are proposing an intervention. Their own documents acknowledge biological abnormalities worsened by exertion. Their intervention increases exertion.

For genuine informed consent, patients would need to know:
- That BACME's own described biology predicts that the intervention could worsen the identified pathology
- That no mechanism connects their model to their treatment
- That the intervention is structurally identical to GET despite their denial
None of that is in what patients receive! Why would they explain it to patients? The gap exists in their own published documents.
There's an additional ethical point in amongst that, that potentially could be drawn out as an argument against them, too.

So, to approach it differently, perhaps we could ask them publicly:
“What is the specific biological mechanism by which your intervention addresses the pathology your own documents describe?” And, not the pathology described vaguely as "dysregulation." The very pathology they claim to acknowledge in their documents. (They talk of all sorts).
What exactly does “tolerance” mean at the level of "mitochondrial function"? (Their included words that they have left a gap in linking).
How does gradually "increasing demand" restore a "dropping anaerobic threshold"? (Also their own words used, with a gap in linking treatment to biology.)

If they can answer specifically, it can be tested. If they can't, and I don't believe they can, that absence confirms the vague language was never covering a precise answer.

We don't need to prove intent or anything else, and we don't need to disprove anything either. We need to ask the questions that their choice of vague language was designed to avoid!

I have recently been thinking on these lines, the recent ones I recall are
1. The open letter to BACME which several members wrote. It can be somewhat distilled to “show me what science you are basing this on?” And further “it appears this is based on X, Y, Z which was debunked by A, B, C studies.

2. Paul Garner giving a talk on his brilliant recovery on the same bill as Trudie “pace trial” Chalder giving a talk on her brilliant research. Except Paul didn’t get better following Trudie’s advice, so that’s that debunked.

It’s here
Thread 'An Open Letter to BACME re ME/CFS Guide to Therapy 2025'
https://www.s4me.info/threads/an-open-letter-to-bacme-re-me-cfs-guide-to-therapy-2025.48904/

 

[Jonathan Edwards]

Wouldn't people dying from starvation because they can't swallow be evidence that something is going wrong? Do we know why very very severe MECFS lose their ability to swallow?

It might raise that possibility but we have not found anything to explain it other than the intolerability described by patients. And that would be very consistent with an alarm signal mechanism. It there was actual muscle failure or motor neuron failure then we would expect other problems - as in a bulbar palsy patient. From a clinical analysis point of view things fit much better with an alarm signal problem than an organ failure problem.

I don't think the idea is obviously bullshit, I think there are reasons why people might initially think that could work. I think that is part of the problem, it seems plausible.

But isn't that what BS is - something initially plausible that has no evidence base?

 

[Hutan]

But isn't that what BS is - something initially plausible that has no evidence base?

I don't think something that is bullshit has to be initially plausible.

"a rude word for complete nonsense or something that is not true:"

 

[BrokenBeaktheBrave]

It might raise that possibility but we have not found anything to explain it other than the intolerability described by patients. And that would be very consistent with an alarm signal mechanism. It there was actual muscle failure or motor neuron failure then we would expect other problems - as in a bulbar palsy patient. From a clinical analysis point of view things fit much better with an alarm signal problem than an organ failure problem.


But isn't that what BS is - something initially plausible that has no evidence base?

That's really helpful - thanks for taking the time to answer.

 

[Trish]

"Teaching the body and nervous system it's safe" is presumably the rationale for much of what physiotherapists do in rehabilitation after injuries. It reminds me of the physio I had after a minor fracture which made moving my shoulder excruciatingly painful. I was advised to push through the pain in incremental steps from keeping it immobilised to small passive movements all the way up to full range of active movement against resistance over several weeks. So I was regaining full movement and strength through teaching my nervous system it didn't need to keep giving me pain signals. And the physio was helping by teaching me it was safe to push through the pain.

In my attempt to discuss the difference between pacing to restore function after injuries, and pacing for ME/CFS, a physio who runs an fatigue, pain and ME/CFS clinic simply refused to accept that this same pacing up approach is neither evidence based nor effective in ME/CFS and is potentially harmful. He seemed to have an unshakable belief that we could train our bodies back to health in incremental steps, with all the hedging around it to pretend it was NICE compliant.

I think the deception in his case was self deception. He really believed he was telling the truth to patients and his guidance with diaries and baselines and incremental increases really worked. And of course he didn't do any follow up with patients after their short courses, with the excuse that it not funded. The lack of curiosity is astounding.

 

[Sly Saint]

Heal programme

what's this?

Dr Naviaux's Cell Danger Response research describes how the autonomic nervous system, under sustained threat, can lock into a protective metabolic state long after the original danger has passed.

This theory has been hijacked on numerous occasions eg:

Thread '(not a recommendation) ME/CFS and Freeze: using Naviauxs research to explain the role of trauma'

Sep 18, 2018

September 14, 2018 Veronique Mead, MD, MA

This post introduces the relationship between chronic fatigue syndrome aka ME/CFS and freeze and similar death-like states such as hibernation.

You’ll learn how recently identified metabolic changes are regulated by the autonomic nervous system to cause symptoms. And why they are real and not psychological. You’ll also hear about the well supported science of polyvagal theory, the social nervous system and the dorsal vagal state that make sense of symptoms and why some of us with ME/CFS are more purely exhausted (or...

• Sly Saint
• naviaux
• Replies: 36
• Forum: Other treatments

• 

 

[Utsikt]

In my attempt to discuss the difference between pacing to restore function after injuries, and pacing for ME/CFS, a physio who runs an fatigue, pain and ME/CFS clinic simply refused to accept that this same pacing up approach is neither evidence based nor effective in ME/CFS and is potentially harmful. He seemed to have an unshakable belief that we could train our bodies back to health in incremental steps, with all the hedging around it to pretend it was NICE compliant.

I think the deception in his case was self deception. He really believed he was telling the truth to patients and his guidance with diaries and baselines and incremental increases really worked. And of course he didn't do any follow up with patients after their short courses, with the excuse that it not funded. The lack of curiosity is astounding.

This is my experience as well.

I’ve been repeatedly told I was not willing to listen or let them help me. They were apparently not getting through to me.

They say they can help me, even though I’ve said I rarely get serious PEM nowadays so there’s not much to help with if they want to help me pace.

In reality they believe they can «help me get better». But that’s claiming to be able to treat someone, which requires evidence. All they have is their «experience», which somehow contradicts all reliable studies done so far.

The road to hell is paved with good intentions, decorated with hubris and delusion.