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.

 

We know exercise can release endorphins. A bit of exercise coupled with feeling ok and achieving something is going to boost the average mood.

 

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

 

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:

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.

 

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.

 

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?

 

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.

 

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

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)

 

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.

Contrary to their theory, the boom and bust patients did not report significantly more all or nothing behaviour

 

They have the audacity of going to a social event.

 

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.

 

Yes I remember that some studies looked at this and for example only included the weekend if it showed a similar pattern.

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.

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.

 

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.

 

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.