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

This is a nice post that compliments the post on deconditioning well.

The quote that you included from the S4ME member really captured an important feature of these contradictory arguments (that the patient is either doing too much or too little which is provoking their symptoms).

The arguments seem more about blaming the patient for the symptoms and less about actually understanding what’s going on biologically.
 
Did the 'boom and bust' phrase partly evolve alongside GET clinics, I wonder? I didn't really 'live through' that time—I had ME but I wasn't aware (I'd never heard of it at that stage), so I'm hazy on the timelines.

Thing is, for mildly affected people and even some moderate ones, there is a momentum effect. Even now, after decades of experience, when I summon up enough energy to clean my floors I very often get up the next day and do more cleaning.

It's an activity that's challenging but manageable when I'm rested, so I haven't usually driven myself into deep PEM. I genuinely feel as if I can do more. Even on Day 3 I may still have enough energy to finish off, putting small items of furniture back in place and sticking the mop pads in a bucket of soapy, bleachy water to soak off some of the grime before they go in the machine. Sometimes I'm still on a little bit of a roll then and have to force myself to stop, other times I'm shattered.

But from experiences like that, I can see how GET 'worked' for some people. They'd probably have felt better after a bit of manageable exercise (it tends to lift you a bit even if you don't have depression), and if they were careful and rested in between, they could sustain it for a while. Until they couldn't, of course.

I'd like it if 'boom and bust' might have been an artefact of how people were taught to manage their ME, but I'm probably being overly hopeful. :D

[Minor edits]
We know exercise can release endorphins. A bit of exercise coupled with feeling ok and achieving something is going to boost the average mood.
 
The main point I wanted to make is that PEM and crashes are not caused by the activity pattern of ME/CFS patients which is not very different from that of healthy controls. They are a feature of the illness ME/CFS.

The boom and bust theory often makes it sound as if the patients' behavior is the reason why they crash and experience PEM.
Thank you for your terrific blogs @ME/CFS Skeptic and especially for this one.

When I read this paragraph I almost burst into tears. I've been doing all sorts of contortions trying to fit my experiences into the boom and bust pigeon-hole. I've diligently traced back my PEM periods ('crashes' lasting a few days to a few weeks in my case) to the last activities I did, no matter how minor, and linked them even when it made no sense to me. I've seen patterns where none existed. I have tried really hard to believe it because everyone says so. I've constantly felt as though I must be a fraud.

Reading your blog has reminded me to trust myself, so thank you.

Edited a few glaring mistakes
 
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I think I remember seeing some quoting the Evering et al. 2010 review on activity levels as a counter-argument against the boom and bust theory as it says:
The pooled mean coefficient of variation in patients with chronic fatigue syndrome was higher as compared to control subjects (34.3% versus 31.5%), but this difference did not reach significance
Source: https://pubmed.ncbi.nlm.nih.gov/20943713/

I didn't use this in the blog because I think this refers to variation within each group (how much one participant's value differs from its group mean), rather than the variation of activity levels within each participant, the fluctuations.
 
I think the boom and bust idea is wrong, as illustrated by the studies @ME/CFS Skeptic describes in this article which show that there is not an inherently different behaviour pattern practiced by pwME when not in PEM compared to healthy controls.

However, I don’t think that means the term many of us prefer, push and crash, is wrong. My understanding of push and crash is that every day there is a limit on how much exertion I can do without triggering PEM. I don't think it's something I can predict, as so many factors influence it such as quality of rest and sleep, sensory input, my current ME severity and exertion over previous days and weeks, and the cumulative effects of all exertions .

If I push past that elusive boundary today, I am likely to sleep badly 'tired but wired' and wake up the next day feeling totally crap, much sicker and much less able to function, and the crash/PEM is will last days or longer unpredictably.

Which is a longwinded way of saying that, usually with the benefit of hindsight, I can see that I have pushed and crashed.

When my ME was mild and I was still working, my activity patterns were, if anything, less erratic than before I got sick, in that I quickly found I had to cut out the 'boom' days such as strenuous days hiking or evenings dancing. My activity pattern was much more evenly spread by necessity.

Except when I pushed a bit for an hour a day, a week, probably barely registering as different from variation in a sedentary healthy person, but resulting in a crash/PEM that kept me off work and much less active for a week or more, some or all of that week confined to bed.

I think if a study were to be done over a year instead of a week it would find, not boom and bust, but a pretty even level of exertion that had fluctuations caused by unavoidable activity increases dictated by events, and other variations maybe related to symptom variation with causes unrelated to exertion, and life in general.

Superimposed on that overall pattern, for a pwME there would be episodes of PEM, showing up as very significant drops in activity for a day or more, and recorded by the pwME as feeling much sicker.

What I think needs researching is whether these PEM episodes are linked in a measurable way to a change in activity pattern over preceding days. I think mine generally is. So for me the push-crash idea is correct, but boom-bust is not.

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.
 
This boom and bust phrase is also used when people are being treated for depression.
Tablets take a long time to work, and the person may need to try several, before finding one that does. Typically it takes 6 or more weeks, then when they do start working towards the end of that period, some days are better than others. It is very much a "bumpy" recovery.
So, not surprisingly, on days you feel a bit more normal, a person will want to catch up with stuff that needs doing. If the next day is not as good, that is just the nature of the beast, not because you have been doing an excessive amount. (This is not about Bipolar, which may be different)

So like ME, there is blame for not doing much when in the acute clinical depression phase and then blame for doing more on a day when the person can.

Seems that boom and bust is a broader psych approach, than just ME
 
But “boom and bust” as a reasoning for GET? And it’s CBT friend.

It just never made sense to me. Do some exercise, then do more of it the following week. Irrespective of how demanding all other elements of that week were. So even if I had a week in the office and the next week I was travelling to other offices around the country. I increase exercise because GET says so. So GET creates the boom and bust.
 
Boom implies that pwME have days when they feel a lot better than current normal, good, even recovered to pre illness levels of capacity. And so do a load of stuff or something big.

the reality is Push, if you’re mild, moderate as in my experience (I wouldn’t want to claim anything in my experience is also applicable to Severe or V Severe) and you have a must do activity (eg a recent experience I had going to a funeral)you unless you are in a crash will push to go. Even if you do feel your normal you are having to push to get there, pushing to get through it and have to call time by asking person who took you to take you home (when the adrenaline starts to fade) before other people have started to leave.

It’s not because I’m having a brilliant “boom” level of energy that I do things outside the house, it’s because I’m not crashing and it’s something that I’m willing or required to push to achieve.
 
Boom implies that pwME have days when they feel a lot better than current normal, good, even recovered to pre illness levels of capacity. And so do a load of stuff or something big.

the reality is Push, if you’re mild, moderate as in my experience (I wouldn’t want to claim anything in my experience is also applicable to Severe or V Severe) and you have a must do activity (eg a recent experience I had going to a funeral)you unless you are in a crash will push to go. Even if you do feel your normal you are having to push to get there, pushing to get through it and have to call time by asking person who took you to take you home (when the adrenaline starts to fade) before other people have started to leave.

It’s not because I’m having a brilliant “boom” level of energy that I do things outside the house, it’s because I’m not crashing and it’s something that I’m willing or required to push to achieve.
Exactly, none of us are going to Ibiza for a 48hour rave then going “ooopsie, might have overdone it a bit, silly me” these “booms” are just average activities for healthy people. Not even extreme activities for healthy people.

What booming are vs pwME doing? Opening their eyes? Eating twice in a day?
 
So for me the push-crash idea is correct, but boom-bust is not.
Just to clarify, I don't think there is a problem if people use boom-bust to describe their pattern of crashes and PEM following (too much) activity.

I mainly wanted to emphasise that this is not due some irregular, symptom-producing activity pattern than ME/CFS patients have compared to controls. Instead it is simply a feature of the illness, that happens with ME/CFS even when you have normal activity patterns.

Another way to state this, is that pacing is not so much about changing an “erratic” or “unhealthy" activity pattern to a normal one. Instead, it is more about changing a normal pattern to an abnormal one, one that is more evenly spread and structured than usual to avoid PEM.
 
Thanks!

I've added an extra caveat to the blog:
EDIT: On Twitter some argued that the boom and bust cycle may be present in ME/CFS patients but only at the very beginning of their illness when they do not yet fully comprehend what is going on.
I think the more relevant period is the one we have data on, when patients reach services and the like. One wants to know what a treatment therapy like CBT, GET, etc. can add to the management/treatment. It would be very much looking at the low hanging fruit to look at people in the very early stages of the illness, particularly if they are not diagnosed, and point out activity levels are erratic.
 
according to Royal Free
  • Relapse brought about by excessive activity, also known as ‘boom-bust’.
Fatigue service | Royal Free London

eta: not sure if you mentioned this paper

Patterns of daytime physical activity in patients with chronic fatigue syndrome, 2020, Chalder, Sharpe, White et al | Science for ME (s4me.info)

Results
124 (21%) of the participants were classified as pervasively inactive, 65 (11%) as pervasively active, 172 (30%) showed a ‘boom and bust’ pattern of activity, and 218 (38%) had an indeterminate pattern. Pervasively inactive patients were more physically disabled, those in the pervasively active group were more anxious, and those in the boom and bust group had more sleep disturbance.
 
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Just to clarify, I don't think there is a problem if people use boom-bust to describe their pattern of crashes and PEM following (too much) activity.

I mainly wanted to emphasise that this is not due some irregular, symptom-producing activity pattern than ME/CFS patients have compared to controls. Instead it is simply a feature of the illness, that happens with ME/CFS even when you have normal activity patterns.

Another way to state this, is that pacing is not so much about changing an “erratic” or “unhealthy" activity pattern to a normal one. Instead, it is more about changing a normal pattern to an abnormal one, one that is more evenly spread and structured than usual to avoid PEM.
Exactly. Very clearly stated.
 
Thanks, it's actigraphy data from the PACE trial at baseline, but they don't report anything about variability or a comparison to healthy controls. They just categorise patients into different groups based on their activity pattern.

They say that 30% showed 'boom and bust' pattern of activity but they had difficulty defining this pattern and fiddled around with it. Eventually, they choose 2 out of 4 criteria that best matched their own intuition.
We then determined which of the 4 criteria had the most overlap with our subjectively labelled BB participants
Contrary to their theory, the boom and bust patients did not report significantly more all or nothing behaviour
 
All the studies mentioned in the blog are 3-12 days long. Not sure if you can discern push/crash pattern in a such short observations. Good days are few and far in between for mecfs patients and it's not uncommon for them to do too much on good days and stay in bed for days afterwards.

The variations like weekday/weekend should also be accounted for health controls. And the amount of activities can't be averaged across the samples since that will flatten the patterns. But I'm sure they had taken care of such.

Let's suppose that they did longer, correct studies and still didn't find the difference in patterns. That could mean that health people also suffer from push/crash pattern. Which makes some sense. Healthy people are not immune to doing too much one day and then slow down in subsequent days. Then it would mean that the activity pattern of mecfs patients looks much like that of healthy people, at much reduced level. But it's difficult to make any conclusion because the studies were too short. I'd say at least an observation of a few months are needed.
 
The variations like weekday/weekend should also be accounted for health controls.
Yes I remember that some studies looked at this and for example only included the weekend if it showed a similar pattern.

Not sure if you can discern push/crash pattern in a such short observations.
The van der werf study had 277 patients and observed them for 12 says. So even if the boom/bust was only present in a minority over this period, a reasonable sized-effect would likely have been picked up because of the large sample size.

That could mean that health people also suffer from push/crash pattern.
I think they simply have variation in the activity pattern for other reasons. For example, a office work could be behind his computer all workday but perhaps on Thursday he has football training for 2 hours with friends, showing a sudden activity peak. Or in the weekend they go dancing in a club until midnight only to lie on the sofa with a hangover for most of the day afterwards watching some sports game.
 
I think they simply have variation in the activity pattern for other reasons. For example, a office work could be behind his computer all workday but perhaps on Thursday he has football training for 2 hours with friends, showing a sudden activity peak.
Externally imposed variations need to be controlled though. Come to think of it, mecfs patients could've had low variations than they should've because they were pacing. That will need to be controlled too since we are talking about push/crash in the absence of pacing.
 
Exactly, none of us are going to Ibiza for a 48hour rave then going “ooopsie, might have overdone it a bit, silly me” these “booms” are just average activities for healthy people. Not even extreme activities for healthy people.

Rather than "push and crash" perhaps it's more like "pull and crash". Ie the pull is the call to a normal life, the desire to do normal everyday activities.

Less hitting the accelerator, more failing to hold the brake.
 
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