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

Boom and bust, another ME/CFS myth?

People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are often said to have an erratic activity pattern, where sudden bursts of activity are followed by prolonged bed rest. This ‘boom and bust’ pattern is thought to be the reason why ME/CFS patients experience frequent crashes and setbacks. Despite the popularity of this view, there is no evidence to support it.

Link: https://mecfsskeptic.com/boom-and-bust-another-me-cfs-myth/

 

Twitter summary here:

https://twitter.com/user/status/1826969055204426035


1) Boom and bust, another ME/CFS myth?

In this new blog post we look at the evidence behind the boom and bust theory and how it originated.

2) ME/CFS patients are often said to have an erratic activity pattern, where sudden bursts of activity are followed by prolonged bed rest. This ‘boom and bust’ pattern is thought to be the reason why ME/CFS patients experience frequent crashes and setbacks.

3) Despite the popularity of this view in the past 25 years, there is no evidence to support it.

4) The MAGETNA trial, for example, analyzed the activity pattern of 138 children and adolescents with ME/CFS and concluded that “a fluctuating active’ or ‘boom-bust’ physical activity pattern” […] did not emerge from the present analyses.”

5) A Dutch study had accelerometer data of 277 ME/CFS patients over a 12 day period. The authors wrote: “no indication was found that the CFS patients as a group were characterised by a high number of large day-to-day fluctuations in activity.”

6) A Belgian study had actimeter data of 67 ME/CFS patients and also found no boom and bust: “The present study was not able to confirm the hypothesis of a more fluctuating activity pattern in patients with CFS, nor during the day, nor during the registration period.”

7) So where does the boom and bust theory come from if it does not appear in the data? Psychiatrists seem to have picked up on the language of post-exertional malaise, but rather than thinking that the illness causes it, they assumed that the patient’s behavior was responsible.

8) One could argue that this is not a big issue because learning patients how to avoid crashes and stabilizing their activity levels is useful, even if based on a false premise.

The theory, however, incorrectly blames patients for the symptoms they experience.

9) Lastly, we discuss why a closer look at ME/CFS activity patterns might be useful. With large sample sizes, machine learning and labelling of patients when they are in a crash, it might be possible to find a PEM signature in the data, an objective signal of ME/CFS pathology.

 

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.

 

You have lost a K in the title @ME/CFS Skeptic!

 

Ah lol yes that was not the intention. Can't figure out how to change the title, hopefully one of the moderators can help out?

I briefly mentioned your idea for a study of ME/CFS activity patterns that might pick up on a PEM signature. I hope I didn't misunderstand and summarized it correctly. Feel free to point out if something needs changing or correcting.

 

As always, a well thought through blog post with some very important points.

 

Thanks again for another great and important blog, @ME/CFS Skeptic

Here's a link to the summary thread you posted on X that can be read everywhere:
https://threadreaderapp.com/thread/1826969055204426035.html

 

I thought the "bust" periods were the result of PEM. You feel a bit better one day, overdo it, and PEM reduces your activity. If you observed a car with a clogged radiator driving across a hot desert, you'd notice similar "boom and bust" cycles as the driver slows down or stops to let the engine cool down again. I could certainly see the BPS crowd blame the driver for not thinking positively enough or whatever.

 

I get repeat viral symptoms for no apparent reason. The first 'warning sign" is that I start feel a little better out of the blue. I can think more clearly and move better. Then wham a few days later the virus or whatever it is strikes

I thought originally that it could be a mini 'boom' as I was feeling better and doing more so I deliberately slowed down and just enjoyed the feeling without increasing activity to test that theory.

It hit me regardless.

This is totally different to PEM after activity. I get both.

 

I wonder if a small trial of an accelerometer study—in preparation a larger one—might be something that @Caroline Struthers could consider for her project?

It's exactly the sort of thing that would need in-depth patient input. Participation would be low risk (presumably people would be living their normal lives as much as possible), but because the setup and recording is potentially quite complicated, there might a decent case there for funding to trial the methodology.

 

Sorry, @ME/CFS Skeptic, I seem to have to deleted the first paragraph of the above post before I made it!

I've lost it now, but it was a big thank-you for another excellent—and important—blog.

 

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.

 

In my experience, there clearly is a pattern of doing too much for some days/weeks, then crashing for weeks. Early in the illness I also kept trying to maintain my old activity levels and kept crashing. It looked like several days of going to school, then a few days of crashing and rest at home.

This is probably what they thought was boom and bust. I'm not sure why this isn't visible in the accelerometer data. Maybe by the time patients get diagnosed, they have already learned to balance activity and rest enough for crashes to be too infrequent to be noticable.

I would also argue that it's not just the boom and bust construct but the entire approach to the problem that is patient blaming. The thinking really appears to be: the patient is to blame, and we just need to figure out how exactly. Or in other words, the illness is perpetuated by thoughts and behaviours and the therapist just needs to identify the causative thoughts and behaviours and persuade the patient to change them.

 

Thank you for writing this! It’s speaking to my soul. I don’t know if anyone has ever studied how many pwME had a catholic upbringing, butI’m default programmed to blame myself and fell “not good enough” and having the “boom and bust” exploded has made me feel lighter.
when I can do a bit more it’s because I feel like I can do a bit more. Due to the mechanisms of ME, inevitably that will end and I will become unwell*. It’s literally not my fault! NOT MY FAULT write it on my headstone.

*obviously I’m not going mad and running 5k, I’m doing a bit more housework and self care.

 

Am off on holiday for a couple of weeks tomorrow, but have made a note to explore this when I get back. I also contacted Karl Morton today on twitter and will follow that up too when I get back
https://twitter.com/user/status/1827007831742030118

 

The other problem with that term is that is also relates to the economic phenomenon, where people would have 'more' in the boom.

The issue is never of course that when getting ill people have 'more'. But it seems very reasonable, including for other illnesses they might have, that they would have discovered they were ill by continue to try and live as they have before getting ill, or if after a short illness, returning somewhat to their committments or previous life.

The nature of the illness is such that they sort of push through to achieve that one day but get a very punishing vs what they did level of illness in days after. Compared to some illnesses I don't know whether they either don't try and push through or can't or a combination of both.

ie I wonder how much of the whole thing is actually due to the poor attitude towards the symptoms that has been historical (I don't know for how long and where, is there a varied picture in the past before the CFS stuff?) and forced pwme into a situation like this, so it is a phenomenon somewhat 'manufactured' by itself.

The anecdote of the many years of the ferritin level for women vs men being set so much lower (without an anatomical reason for needing less, only a reason for why it might be more common) possibly being simply an acceptance of having a certain proportion of women deficient or anaemic rings in my ears here

 

Boom and bust has the air of irresponsibly doesn’t it.

 

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.

[Minor edits]