Boom and bust, another ME/CFS myth? - ME/CFS Skeptic blog

[bobbler]

A further thought. I watch a bit of sport. Tennis players and road cyclists who 'boom' to the level of total exhaustion one day, and return for more day after day, notably cannot do this every day. They are described as suffering exhaustion after a 2 week tournament or 3 week race and need some rest days during the event, so they can't compete every day or week of the year. In fact a perfect example of a boom and bust lifestyle. Yet they don't have ME/CFS.

Yep it was always awful blagger BS nonsense and not based on trying to help anyone at all. And yes I'm allowed to say that about people because if you aren't really listening and doing your job properly and not following up then it isn't help, so that person'd be the one with the problem if they believed that was what they were doing. And it takes a special though to not think of how awful and intimately intrusive even the suggestion is as a label nevermind trying to control people's lives with a can't win.

As you say most people know that deconditioning or health doesn't not happen because of rest days. And rest days are as vital to the heavy training and race days in the process of getting fitter and increasing performance for athletes, nevermind all the injury stuff. So the 'mother knows best' crud didn't even have basic logic.

It was outrageous it was allowed to just be picked out of thin air and repeated without proper methods behind it. And for systems to let people like that have control over others to the point they've probably significantly increased disability in number and severity to the level it makes a huge difference across the country for so many years. I smart that they might not be held responsible for that and still blag the sales pitch of claiming to be 'preventative medicine'.

Which is a phrase that should be interrogated very closely by anyone funding it just on the idea that its promise sounds feasible and 'good value'. The people underneath it vs those who offer 'preventative medicine' along the lines of good advice and support to stop things getting worse are a very different level of quality and honesty in how robust what they say is. Hence why/where it sounds like good value. Check the workings and the actual standard of the people behind it aren't the same old rebranded gravy train designed to suck funds 'at just the right rate' initially.

I would like to hope that one day these things will have whole sections of teachings and journals on them and operate as warnings of what can never happen again to people.

Thanks for this article @ME/CFS Skeptic this is so clearly written I even have half a hope that some who have the empathy or just common sense and justice for the fairness of academic success module will get angry that those people were allowed to control so many people lives and put out such life-controlling tropes for so long based on what turned out to be no homework.

I'm so angry/grumpy at the gall of that phrase of 'it is presumed that'. I mean really c'mmon. We've all been left like this because of someone not realising that and not asking the basic question properly of whether that person had properly even tested it.

Agree that the push and crash sounds more right because it isn't about 'getting boom' but it hurting. My fourth day in work during a peak time may or may not have involved adrenaline for some of it, doubtless caffeine until it was coming out of my ears, but I can assure them it wasn't perfectionism or adrenaline why I was there and doing it.

 

[bobbler]

From my own experience I feel sure this exists. It would be interesting to do it over different time periods.

There should certainly be a distinctive rapid-fatiguability-combined-with-PEM signature. If I wore devices on my right wrist and one of my ankles, I think it would show up as a 'barn door'. My Apple Watch offers to call the emergency services because the technology thinks it's detected a bad fall, when actually I was feeding the cat or something. It's because I throw my limbs instead of guiding them.

Yep when the cat accepts getting breakfast at 4pm because they feel so much empathy, even if I was too unwith it to notice, among plenty of other things they clearly spot then I'm sure there is something to be picked up.

 

[bobbler]

When I first got mild ME, one of the curious things that happened was that I was going through all of my socks on the ball of my foot. At first I thought it was my new Doc Martins, but it eventually transpired that I was scuffing my feet on the floor as I walked around the house. Something had changed in my gait.

In addition, I recently saw a video of a pwME online who has recovered from severe and bedbound to a state where he is able to stand for a while. When I saw footage of him moving around, his gait was very similar to mine when I walk around at the moment, even though he can stand and walk longer than me. This is not the first time I have observed that there is something distinctive about about the way pwME walk. I remember watching videos of people with long covid in 2021 and thinking the same thing.

I think there's definitely something in this.

I manage to lid the end of my big toe and not notice for about 15 seconds when walking outside the back door for a moment. I assume this was because I rarely was out there without shoes and inside the consequences weren't so dramatic, and just thought nothing unusual of the contact with the floor as I must do it a lot.

Looking back one weird phenomena that never went away was that I suddenly (and never again was able to either) stopped being able to do the ball toss on a tennis serve. I could obviously throw the ball in the air (although sometimes obviously wonky) but the consistency and control to be able to even do this in line with whatever my body would then manage to do re: the stretch on the back circle part well I could just never ever in the entire time since do it again.

I thought it was a yip-like psychological phenomena until I observed the same thing with golf (putting/chipping etc) that as I got tireder (because golf clearly wasn't doing me the good I thought it was) the trained in ability to hold all those bits of the body which would include parts that dropped as they got exhausted just meant that rather than getting better over time it was like an ever-moving feast of what I assume was backward-forward integration trying to adjust the new mechanics to getting it to hit the ball right.

I'm aware some might take from this that I'm someone who doesn't learn my lessons fast enough.

 

[bobbler]

More importantly, the model is that we are afraid of activity. Where the hell would a 'boom' occur, then? Especially given that there is no such evidence, and this consists of normal activities of daily living in most cases?

Of course nothing in this model is intended to make sense, but even in made-up concepts consisting of 3 words, they manage to make 2 a lie and the other is a freaking conjunction.

Yeah and I slightly wonder whether there is confusion over 'having days where you manage to get lots of things done' being said (and that phrase being relative anyway) vs days where you try to do lots being the actual 'opposite' implicit/intended. It can be just as much work re-reading that same paragraph 25 times before realising it is never going to go in no matter how much you try and force your eyes and brain to work better vs when you can just read those 3 pages on a good day because everything 'just works'.

And to be honest what a shock when it suddenly does. And then the next thing just 'gets done' without all the disability crap too

Life isn't just nicer on the days where we are less disabled, there is a chance that it is actually more efficient to do the same task when everything is firing on all cylinders as it should be vs hopping on one leg with a dropped shoulder, dodgy eyesight and a migraine. And then you put the whole dishwasher on with no tablet in anyway, and didn't realise the filter needed emptying on the tumble dryer so it also only ran for 10mins so it was pointless. But there are only so many days like that where anyone takes that as an excuse.

Maybe that is one of the 'psychological lifts' pwme might have mentioned in the paper. When a task just takes the amount of time and energy that it used to for once can be a massive relief and actually 'worth writing home about' even. See various threads here. The big win when I've finally had a day where I've been well enough and washed my hair ...

 

[bobbler]

One thing that wasn't mentioned in the blog is that boom and bust is often equated with all-or-nothing behavior as measured with the Cognitive and Behavioural Responses to Symptoms Questionnaire (CBRQ) subscale which contains the following 5 statements:

• I tend to overdo things when I feel energetic
• I find myself rushing to get things done before I crash
• I tend to overdo things and then rest up for a while
• I tend to do a lot on a good day and rest on a bad day
• I'm a bit all or nothing when it comes to doing things

Each item is scored from 0-4 so that the total range of the subscale is 0-20.

In a 2023 paper Chalder and Moss-Morris report summary values of this CBRQ subscale for ME/CFS patients and other patient groups. ME/CFS patients had similar results as those with MS while patients with Haemodialysis, Inflammatory bowel syndrome and Chronic Dizziness have slightly lower values. I've made the following graph of the summary data:

View attachment 22899

The groups were not matched and had different ages and sex ratios. So this only provides a rough comparison, showing that ME/CFS values are not very abnormal.

Another recent paper by the Dutch research group of Knoop also reports some comparison values for this scale, showing similar results.
View attachment 22900

The PACE trial however found no relationship between all-or-nothing behavior and their definition of boom-and-bust pattern, so therefore I didn't go into this in the blog.

Pretty loaded wording isn't it.

Just goes to show that by now, given all the lessons they must have given some of the more talented in other generations in poor questionnaire design, there must be some who are interested and skilled enough to do a better job

This feels like the questionnaire itself is being used as a tool to train people in thinking it is their own fault by putting words in their mouth that mightn't be right.

Even healthy people have been there with that and felt annoyed, and yet this bunch have been allowed so much coercive power pwme must eventually internalise it by the time they've got to the end of what they are made to do as part of the diagnostic process that mightn't have needed any of that at all.

It's flagged to me just how much we need to be highlighting all of these issues with clinics and 'measurement' tools that actually influence and brainwash by forced repetition combing with the associated exhaustion and need to get home leading to just giving in. It's pretty bad when you think about what it's doing.

eg The effects of repetition frequency on the illusory truth effect | Cognitive Research: Principles and Implications | Full Text (springeropen.com)

but there are more specific references to questionnaires specifically if used repetitively eg can impact people's thoughts etc. imagine if you are continually having to select something that isn't quite accurate week in week out about yourself.

 

[Robert 1973]

Ha! I remember at least a couple of times that there was some contradictory about "booming" if you're petrified of activity. But if I had some explanation for how they tried to massage away this contradiction, I can't say I remember.

I think it is splitting patients up in relatively active patients and passive patients.

That's what the Dutch group of Bleijenberg et al. did. The focus for the active patients is then on stabilising their activity pattern and avoiding boom and boost while the focus for the passive group is on building up activity levels.

I may be misremembering. It may not have been Dave who tried to explain how they try to massage away the contradiction. It could have been a discussion on here or somewhere else.

My best guess is that they might argue that boom and bust behaviour leads to fear avoidance (ie they are not concurrent).

Their argument might be that it is because patients have unhelpful illness beliefs, catastrophise, focus too much on symptoms etc., that they need to increase activity levels gradually. Doing too much too quickly may result in normal physiological responses following physical exertion (stiff muscles etc), which patients misinterpret as evidence of ongoing pathology. This results in fear avoidance behaviour which leads to excessive resting and further deconditioning.

In some cases, when frustration exceeds fear, perhaps as they recover from what they perceive to be PEM, patients may try to push themselves to do too much again (ie “boom”) and the vicious cycle repeats.

NB I’m not suggesting that this explanation is true, or even that it makes sense, I’m just trying to figure out what the BPS thinking might be.

The more they are scrutinised the more it appears that BPS ideas are not so much scientific theories as superficially persuasive narratives – much like Freud’s fanciful “theories”.

Like all BPS narratives (and many prejudices), the boom and bust and fear avoidance ideas have enough truth in them to make them seem plausible. It is natural to try to push yourself before you understand your PEM, and even then it is natural to get frustrated and try to test or push one’s limits.

Similarly, it is rational to try to avoid PEM, particularly if/when one learns that that is the best way to maximise activity and minimise symptoms in the long term. Ironically, those who have greater fear of PEM, may fare better than those who are fearless and keep pushing.

 

[Robert 1973]

NB I’m not suggesting that this explanation is true, or even that it makes sense, I’m just trying to figure out what the BPS thinking might be.

Maybe I’m just giving them too much credit and the contradiction never occurred to them. Or maybe it did and they didn’t care.

I’m reminded of Gottlob Frege’s introduction to the appendix of his 1903 Volume 2 of The Basic Laws of Arithmetic:

"Hardly anything more unfortunate can befall a scientific writer than to have one of the foundations of his edifice shaken after the work is finished. This was the position I was placed in by a letter of Mr Bertrand Russell, just when the printing of this volume was nearing its completion"
​

If only BPS theories were constrained by such adherence to reason.

 

[MrMagoo]

I may be misremembering. It may not have been Dave who tried to explain how they try to massage away the contradiction. It could have been a discussion on here or somewhere else.

My best guess is that they might argue that boom and bust behaviour leads to fear avoidance (ie they are not concurrent).

Their argument might be that it is because patients have unhelpful illness beliefs, catastrophise, focus too much on symptoms etc., that they need to increase activity levels gradually. Doing too much too quickly may result in normal physiological responses following physical exertion (stiff muscles etc), which patients misinterpret as evidence of ongoing pathology. This results in fear avoidance behaviour which leads to excessive resting and further deconditioning.

In some cases, when frustration exceeds fear, perhaps as they recover from what they perceive to be PEM, patients may try to push themselves to do too much again (ie “boom”) and the vicious cycle repeats.

NB I’m not suggesting that this explanation is true, or even that it makes sense, I’m just trying to figure out what the BPS thinking might be.

The more they are scrutinised the more it appears that BPS ideas are not so much scientific theories as superficially persuasive narratives – much like Freud’s fanciful “theories”.

Like all BPS narratives (and many prejudices), the boom and bust and fear avoidance ideas have enough truth in them to make them seem plausible. It is natural to try to push yourself before you understand your PEM, and even then it is natural to get frustrated and try to test or push one’s limits.

Similarly, it is rational to try to avoid PEM, particularly if/when one learns that that is the best way to maximise activity and minimise symptoms in the long term. Ironically, those who have greater fear of PEM, may fare better than those who are fearless and keep pushing.

See, it’s so easy to just invent BPS nonsense!

 

[dave30th]

Like all BPS narratives (and many prejudices), the boom and bust and fear avoidance ideas have enough truth in them to make them seem plausible.

I think this is true. But again it's another version of interpreting association with causation. Of course people are cautious because of their PEM experience. That is not "catastrophizing."

 

[Hoopoe]

NB I’m not suggesting that this explanation is true, or even that it makes sense, I’m just trying to figure out what the BPS thinking might be.

What they are thinking: we need to psychologize this some more for our job security and career.

I would be willing to bet that the way they approach this is to examine the illness from all angles to find opportunities to insert a psychosomatic narrative. They probably think of their job to be "holistic" and "pay attention to psychosocial factors" and view themselves as enlightened elite that can see the psychosomatic causation that most cannot see or want to deny. At least some of them realize they're frauds.

 

[Sean]

Pretty loaded wording isn't it.

Just goes to show that by now, given all the lessons they must have given some of the more talented in other generations in poor questionnaire design, there must be some who are interested and skilled enough to do a better job

This feels like the questionnaire itself is being used as a tool to train people in thinking it is their own fault by putting words in their mouth that mightn't be right.

Even healthy people have been there with that and felt annoyed, and yet this bunch have been allowed so much coercive power pwme must eventually internalise it by the time they've got to the end of what they are made to do as part of the diagnostic process that mightn't have needed any of that at all.

It's flagged to me just how much we need to be highlighting all of these issues with clinics and 'measurement' tools that actually influence and brainwash by forced repetition combing with the associated exhaustion and need to get home leading to just giving in. It's pretty bad when you think about what it's doing.

That is my view of what they are doing, and it is appalling beyond words.

The more they are scrutinised the more it appears that BPS ideas are not so much scientific theories as superficially persuasive narratives – much like Freud’s fanciful “theories”.

To the extent they can be called experts at anything it is at exploiting popular prejudices and bigotries, and the myriad flaws within governance and quality control processes.

And they really are some of the very best at that.

Ironically, those who have greater fear of PEM, may fare better than those who are fearless and keep pushing.

In which case, of course, it can hardly be called 'fear'. It is, in fact, a highly rational and practical response to an extremely novel, opaque, and adverse situation.

Of course people are cautious because of their PEM experience. That is not "catastrophizing."

I am in my early 60s, have been driving since I was 16, and have driven a wide range of vehicles in that time. I recently drove a car I was completely unfamiliar with that had the touchiest brake pedal I have ever experienced, apparently this model is well known for it. The distance between gentle braking and hard emergency level stopping was about 3-4 hairbreadths. Even for this experienced driver it was a very steep learning curve, requiring a lot of caution and recalibration.

At the time it struck me as a good analogy to the situation for a patient trying to learn how to deal with PEM.

The problem is not with the patient's perceptions and responses, it is with the extremely novel, opaque, and adverse situation they are trying to understand and deal with.

What they are thinking: we need to psychologize this some more for our job security and career.

Yep. The psychosomatic club are just trying to hang onto their empires, reputations, careers, status, egos, and, of course, well above average incomes.

And, sadly, they are doing a good job of it so far. Still flogging the psycho-behavioural rehabilitation angle with considerable success. For the patient NICE 2021 might well not have happened for all the practical difference it has made so far to our lives.

(I don't mean NICE 2021 is not important or necessary, it most certainly is and I am very grateful to all those who helped bring it about. But it has yet to translate into substantive meaningful benefits in our lives, mainly because a small group of powerful ruthless people with gargantuan conflicts of interests are doing everything they can to prevent that happening.)

Sometimes hard cynicism is the right response.