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

[JemPD]

just another trick therapists have devised to ensure that they are always right and the patients always wrong, so needs their 'expertise'. Feeling bad? - you didn't do enough, feeling bad? - you did too much - you need to do what we say.

Exactly. Its just more of the same
Which basically equates to "You're wrong. Your thoughts are wrong, your feelings are wrong, your behaviour is wrong. It doesnt matter what your personality is, or what your feelings are, or what you do, it will always be, simply, WRONG regardless. And you need us therapists to correct you, because we, are always, RIGHT"

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?

But dont you know... it is a person's fear of spiders that makes them spend far too many hours in the arachnid house and covering themselves with spiders, that is what causes their arachnophobia

Never any questions about
“I tend to leave things half completed”
“I do more than I intended, but less than I needed”
“I usually stop myself before I’ve finished a task”

Well they dont need to do those studies, because it is 'well known' that we are all lazy & slovenly & need a kick up the backside. That is obvious, no studies required.
But no the patient cries, 'i try really hard'....
'Aha!' snaps the therapist 'you see, you are a perfectionist'.

Like I said... "You're wrong, whatever you do, say, think or feel, its wrong."

 

[Kitty]

Like I said... "You're wrong, whatever you do, say, think or feel, it's wrong."

Interesting, isn't it, that when people see a psychologist or counsellor to help them navigate a really difficult period, what they often find most helpful is the reassurance that their thoughts and feelings and reactions aren't wrong. That they'd be familiar to others who've gone through something similar, and that some find it helpful to join an online community to share experiences and lessen feelings of isolation.

Makes you wonder how pwME ended up with psychologists saying the exact opposite, really.

 

[MrMagoo]

Interesting, isn't it, that when people see a psychologist or counsellor to help them navigate a really difficult period, what they often find most helpful is the reassurance that their thoughts and feelings and reactions aren't wrong. That they'd be familiar to others who've gone through something similar, and that some find it helpful to join an online community to share experiences and lessen feelings of isolation.

Makes you wonder how pwME ended up with psychologists saying the exact opposite, really.

Psychology seems very paternalistic. BSP is in many ways abusive. The kind of hegemony which is smashed once people can form online communities, and easily speak to others who have the same issues, experiences and concerns.

They really shouldn’t rush to psychologise patients.

 

[Kitty]

They really shouldn’t rush to psychologise patients.

They don't even rush to psychologise some people with mental ill-health, especially when there were clear triggers for it. They help people gain perspective on what they're experiencing, understand that some of their feelings and responses are quite normal, and find strategies to help live with them.

So psychologists know how to not-psychologise, they just need to want to.

 

[Nightsong]

Find yourself needing to rest a lot? You're deconditioned, and that's a perpetuating factor. You do what you can when you can and rest when you must? You're a boom-and-buster, which is a dysfunctional adaptation maintaining your symptoms. Also, you're all hard-charging type A perfectionistic strivers, except, of course, when you're lazy deconditioned neurotic layabouts. And yes, of course, you can indeed be both; absolutely no contradiction there.

Heads the biopsychosaurus wins, tails the ME patient loses. It's insidious, and pernicious.

On a historical point, do we actually know who originally coined the term "boom and bust"? The concept dates from the early 1990s in CFS research, and back to the 1970s in the chronic pain field (using different terms such as the "overactivity-underactivity cycle" and the "activity-rest cycle"), but as to "boom and bust" itself the earliest papers using that precise phrase I've been able to find - after an admittedly quick search - are this Blenkiron et al. CFS-perfectionism paper from 1999 (and this JRSM one too from the same author).

 

[Amw66]

There was this study on gait
https://pubmed.ncbi.nlm.nih.gov/18505580/

Gait characteristics of subjects with chronic fatigue syndrome and controls at self-selected and matched velocities
Lorna Paul et al. J Neuroeng Rehabil. 2008.

Abstract


Background: Gait abnormalities have been reported in individuals with Chronic Fatigue Syndrome (CFS) however no studies exist to date investigating the kinematics of individuals with CFS in over-ground gait. The aim of this study was to compare the over-ground gait pattern (sagittal kinematics and temporal and spatial) of individuals with CFS and control subjects at their self-selected and at matched velocities.

Methods: Twelve individuals with CFS and 12 matched controls participated in the study. Each subject walked along a 7.2 m walkway three times at each of three velocities: self-selected, relatively slow (0.45 ms-1) and a relatively fast (1.34 ms-1). A motion analysis system was used to investigate the sagittal plane joint kinematics and temporal spatial parameters of gait.

Results: At self-selected velocity there were significant differences between the two groups for all the temporal and spatial parameters measured, including gait velocity (P = 0.002). For the kinematic variables the significant differences were related to both ankles during swing and the right ankle during stance. At the relatively slower velocity the kinematic differences were replicated. However, the step distances decreased in the CFS population for the temporal and spatial parameters. When the gait pattern of the individuals with CFS at the relatively fast walking velocity (1.30 +/- 0.24 ms-1) was compared to the control subjects at their self-selected velocity (1.32 +/- 0.15 ms-1) the gait pattern of the two groups was very similar, with the exception of both ankles during swing.

Conclusion: The self-selected gait velocity and/or pattern of individuals with CFS may be used to monitor the disease process or evaluate therapeutic intervention. These differences may be a reflection of the relatively low self-selected gait velocity of individuals with CFS rather than a manifestation of the condition itself.

2008.
Another let that sink in moment .
So much replication/ development needed

 

[Eleanor]

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.

How can you be "a bit" all or nothing?

And it's scored 0-4, so if you score 1 or 2 that means you're a bit "a bit" all or nothing?

 

[SNT Gatchaman]

@Eleanor

 

[Sid]

I tend to overdo things when I feel energetic

These geniuses. When I get an ounce of energy, I have to do the 100 things that piled up on the to-do list while I had low energy. It's a consequence, not a cause of the condition.

 

[ME/CFS Skeptic]

Another paper by Chalder and colleagues compared ME/CFS with rheumatoid arthritis (RA), seronegative spondyloarthropathy (SpA), and connective tissue disease (CTD). The rheumatic diseases had a mean for all or nothing behaviour around 8 and ME/CFS patients a mean around 10, so similar results to the ones above. The cohen'd effect size was moderate: 0.41.

So ME/CFS patients score a bit higher than most disease comparisons (likely because of words such as 'energetic' and 'crash' that are often used in ME/CFS community) but not extremely so: they score half of the maximum of the scale and similar to MS patients. The difference might have been due to higher fatigue/disability.
Fatigue and psychosocial variables in autoimmune rheumatic disease and chronic fatigue syndrome: A cross-sectional comparison - PubMed (nih.gov)

Just noticed that this paper did control for fatigue in a separate analysis (table 4, ANCOVA adjusted for fatigue, age and illness duration). As expected, the effect size dropped from 0.41 to 0.07 and the difference in all-or-nothing behavior between groups was no longer significant.

 

[Sean]

These geniuses. When I get an ounce of energy, I have to do the 100 things that piled up on the to-do list while I had low energy. It's a consequence, not a cause of the condition.

It is bizarre just how backwards they have it. After four decades of watching it in action it still takes my breath away.

Just noticed that this paper did control for fatigue in a separate analysis (table 4, ANCOVA adjusted for fatigue, age and illness duration). As expected, the effect size dropped from 0.41 to 0.07 and the difference in all-or-nothing behavior between groups was no longer significant.

Kinda seems relevant for a condition they have declared a 'fatigue' disorder.

 

[rvallee]

How can you be "a bit" all or nothing?

And it's scored 0-4, so if you score 1 or 2 that means you're a bit "a bit" all or nothing?

Well, I'm a bit of a 18' giant. I'm not 18'. Just a bit of it.

I'm also a bit of a billionaire. A very tiny bit.

 

[MrMagoo]

Well, I'm a bit of a 18' giant. I'm not 18'. Just a bit of it.

I'm also a bit of a billionaire. A very tiny bit.

I’m a bit consistent, except not always, but I am sometimes.

 

[Sean]

I am a bit alive, though mostly just existing.

 

[Tom Kindlon]

Carol Binks wrote the following which I thought explained it quite well. She gave me permission to share it with her name:
---
"Many people have irregular activity patterns in life, hence the phrases ‘I’ve had a really busy day/week/month’ etc. but after a particularly active and tiring day healthy people have an early night (or maybe even two) and feel fine the day after. People with ME don’t.

After longer, exceptionally busy, periods of work healthy people might feel ‘run down’, go on holiday, and come back refreshed and re-energised. This doesn’t happen when people have ME.

We don’t just recover from a good night’s sleep and feel fine, or recover from a week or two on holiday, but healthy people do, so the ‘boom and bust’ theory doesn’t make any sense at all, because if we didn’t have ME we would recover from high energy activities or deviations from a ‘normal’ routine, as healthy people do.

The reason we don’t recover, often after *any* activity, in a regular or an irregular pattern, is because we have ME. Healthy people do recover."

https://twitter.com/user/status/1828741706864325039

 

[Robert 1973]

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.

I remember @dave30th writing about the contradiction between the boom and bust concept and fear avoidance behaviour way back. My imperfect memory tells me he also explained how the BPS enthusiasts try to account for the apparent contradiction. But I can’t remember how their argument goes.

 

[dave30th]

I remember @dave30th writing about the contradiction between the boom and bust concept and fear avoidance behaviour way back. My imperfect memory tells me he also explained how the BPS enthusiasts try to account for the apparent contradiction.

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.

 

[bobbler]

They don't even rush to psychologise some people with mental ill-health, especially when there were clear triggers for it. They help people gain perspective on what they're experiencing, understand that some of their feelings and responses are quite normal, and find strategies to help live with them.

So psychologists know how to not-psychologise, they just need to want to.

Oh they do.

It just isn't all of them. But the most (historically) female-heavy of them all: eating disorders, who knows what mixed bag of actual issues that could be tackled with a matched approach are going on there, yet instead we get personality-targeted tropes. Perfectionist label being just one example. Plus of course all sorts of stories rather than maybe listening to the situation someone might be in and medical checks

Addiction only slightly improved to now of recent times because eventually some recovered somehow managed to get the power to take it on themselves. And probably celebrities playing a part. I believe there used to be a different approach in some places before around the 80s? 90s? was influenced by certain ideas /ideologies.

but I’m not getting the sense the taking responsibility for and helping properly to pick up the pieces on the opioid thing where it was people given them by doctors as 'new gen' and told it wasn’t addictive has the sympathy level you could imagine you might feel it should if that were someone close to you.

a common thread there is the historical overlap with them turning up under medicine and the impact of them often ending up under behaviourism. And beliefs still commonly suggested are that ‘those with such are deceitful’ which isn’t wholesale accurate but will hugely affect relationships people might have had support from.

whether they actually are/were in many cases treating the real problem rather than coming up with a story to stick on them and the focus just being on behaviour and tropey ideas that don’t match or even ask the ‘individual’ what the ‘cause’ is hugely variable. Ideas put out re:watch out and early days things can be incredibly counterproductive as are media/ press cliches. What @hibiscuswahine describes in New Zealand might be quite different. But even more of a sense of a ban on laypersons saying these things than there is for ME.

the other commonality is vulnerability of those groups at certain points in time.

I’m seeing the recent backslide from what was starting to look better 20yrs ago in autism maybe only just now start to get changed back properly to what we understood then instead of a behaviourist veil. Probably because 5yrs ago it became so obvious via the press what had been going on and some of the worst collateral damage with kids who’d ended up trapped on wards unsuitable for them after falling thru a diagnostic system that no longer existed to help people early enough and I’ve heard about difficulties getting adjustment understood in schools still happening

And yet now we have the focus on psychologising parents and adult patients for ADHD diagnoses from certain sectors

tho tbf I also remember the 90s programmes from/on the USA about this and Ritalin etc

 

[bobbler]

I have managed to read the Blog now, having various other distractions. It is full of important points.

I had not understood, but I am sure it is the case the Boom and Bust is just another trick therapists have devised to ensure that they are always right and the patients always wrong, so needs their 'expertise'. Feeling bad? - you didn't do enough, feeling bad? - you did too much - you need to do what we say.

And I had missed that B and B is of course incompatible with the BPS psychological perpetuation gambit. Boom would only Bust if there was a non-psychological reason. It amazes me that Wessely associated himself with stuff as transparently nonsensical as this.

I note I am quoted! There are two things that interested me about altimetry. One was whether you could pick up 'movement signatures' in people with ME/CFS, which you ought to be able to do over a period of a week or so. I see that some studies have actually tried to do this, to an extent. The other was to document the push and crash relation, which would need monitoring over months. They would address two quite different questions.

I see that non-linear dynamic analysis has been used and people have extracted things like fractality. I was not aware that things had been taken that far. However, I think it is worth comparing this with the apps for birdsong recognition. The Merlin app uses this sort of complex dynamic analysis to identify maybe 5000 different species specific calls and songs mostly with great reliability. A few errors occur when the calls really are pretty much indistinguishable by ear.

In these apps not only are non-linear features analysed but they are put into recognition algorithms. I don't see that being done yet for ME/CFS but I think it has been done for Parkinson's. I suspect the problem is that those who have studied activity in ME/CFS have focused on functional significance rather than looking for a 'signature'. One or two studies do seem to hint at signatures but of course there need to be other disease controls.

Whether or not one needs huge cohorts I am not sure. Maybe so, maybe not. Another thing is that I think it would be good to look for a signature of activity that was very specific but need not be that sensitive for ME/CFS. Not everyone with Parkinson's will show a particular change in movement on starting to walk but when it is there it is instantly recognisable.

Very interesting material @ME/CFS Skeptic, and assiduously documented.

I think that this one sounds like a very interesting approach. Given it does need to be comparing individuals 'to themselves' - and PEM is a funny old beast which as the blog says involves some sort of over-threshold, normally exertion which might be cumulative. And might be PEM-on-PEM where people over-exert several days in a row pushing through on adrenaline, and then have a super-effect.

I'd also be intrigued to see if there are any indicators when PEM (the whole cycle) starts and ends. This is an issue we struggle to get believed. And the idea that cumulatively overdoing /being over-exerted a bit results in a decline months later, with symptoms that many years in you might recognise as 'riding the wave' at the time but many might feel like they are managing to walk that line and happy about it.

So I'd like to start seeing the same thing 3, 6, 12 months later to identify anyone who has actually dropped in health (I think if I overdo it for 6months, then I'll decline slowly over the next 6months) and then look retrospectively at what those patterns of exertion-rest might have been vs those who didn't.

I spotted the following article, and whilst I think I tried to read it but at the time didn't feel like I was getting on top of it did like the idea that due to what I assume is a robotic version of a proesthetic, or something that can attach to functioning limbs (to eg improve sustained performance in military), they have also been looking at these measuring gait for signs of fatigue/fatiguability (is 'fatigue' where a fatiguable muscle exhausts?) Wearable sensor technology and medical robotics for fatigue assessment using electromyography signal processing, 2024, | Science for ME (s4me.info)

I particularly like the idea they might have data of the fatigue patterns across all sorts of healthy people and their individual differences.

Anyway, I think one issue with people just measuring behaviour crudely short-term rather than for some other measure looking at the actual 'paying for it', is ceiling and floor effects for many pwme where their threshold (ceiling) is actually often less than their environment/commitments they can't avoid (floor). If you need the loo then there is a limit to how much you can avoid that walk just because you are tired. It might even be the case that the healthy controls have more liberty to reduce their floor below what pwme can simply because it would be 'unusual' and they know they can rearrange or catch up more easily.

Can'ts only become can'ts we don't even try and become unstuck with normally after a long period of bargaining (whether kidding ourselves or not having much leeway), doing despite because the alternatives are nudged away from by other issues, and spreading things out more or trying them in different ways.

 

[ME/CFS Skeptic]

But I can’t remember how their argument goes.

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.