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

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"

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

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."

 

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.

 

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.

 

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).

 

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

 

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?

 

@Eleanor

 

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.

 

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.

 

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.

 

Carol Binks wrote the following which I thought explained it quite well. She gave me permission to share it with her name:
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"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."

 

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.

 

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.

 

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

 

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.

 

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.