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

I think I’d go for wax and wane. The energy comes, the energy goes, as sure as the moon grows and shrinks in the sky, and sometimes there’s an eclipse and it dominates or disappears altogether.

I’m not failing to hit the brake, the brake hits me!

 

I'm not 100% convinced that the term boom and bust is pejorative; to me it's merely one way of describing pem. And I'm for anything that centres pem in discussion of me/cfs.

 

My concern is that it is only meaningful for the very mild who are the only people with ME served by most specialist services, for every one else it is ‘bust and more bust’ with nary a ‘boom’ in sight.

 

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.

 

From my own experience I feel sure this exists. It would be interesting to do it over different time periods.

There should certainly be a distinctive rapid-fatiguability-combined-with-PEM signature. If I wore devices on my right wrist and one of my ankles, I think it would show up as a 'barn door'. My Apple Watch offers to call the emergency services because the technology thinks it's detected a bad fall, when actually I was feeding the cat or something. It's because I throw my limbs instead of guiding them.

 

Really valuable blog, @ME/CFS Skeptic , thanks so much.

Exactly.

 

When I first got mild ME, one of the curious things that happened was that I was going through all of my socks on the ball of my foot. At first I thought it was my new Doc Martins, but it eventually transpired that I was scuffing my feet on the floor as I walked around the house. Something had changed in my gait.

In addition, I recently saw a video of a pwME online who has recovered from severe and bedbound to a state where he is able to stand for a while. When I saw footage of him moving around, his gait was very similar to mine when I walk around at the moment, even though he can stand and walk longer than me. This is not the first time I have observed that there is something distinctive about about the way pwME walk. I remember watching videos of people with long covid in 2021 and thinking the same thing.

I think there's definitely something in this.

 

Sometimes I can find no reason at all for bad days. I even stopped looking for the reason why it happened.
Maybe it is just an unhelpful thought we picked up from the CBT/GET crowd.

 

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.

 

I call it the ME shuffle.

 

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 think the boom must be our perfectionist/type A personality aka neuroticism. If we exercised without overthinking negative thoughts, we’d be fine.

 

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.

In a 2023 paper Chalder and Moss-Morris report summary values of this CBRQ subscale for ME/CFS patients and other patient groups. ME/CFS patients had similar results as those with MS while patients with Haemodialysis, Inflammatory bowel syndrome and Chronic Dizziness have slightly lower values. I've made the following graph of the summary data:



The groups were not matched and had different ages and sex ratios. So this only provides a rough comparison, showing that ME/CFS values are not very abnormal.

Another recent paper by the Dutch research group of Knoop also reports some comparison values for this scale, showing similar results.


The PACE trial however found no relationship between all-or-nothing behavior and their definition of boom-and-bust pattern, so therefore I didn't go into this in the blog.

 

For a fair comparison, one should control not only for age and sex but probably also for fatigue (or some other measure of disability).

 

I wouldn't characterise the first four items as 'all or nothing' behaviours. They're part of chronic illness, and some of them are an inevitable part of living with it. None of them are unique to ME/CFS.

The final item is a carefully set up leading question, and answers to it can't be regarded as reliable anyway.

 

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)

 

The first four questions are basically the same question?
And I’d only term it “overdoing things” because I’ve been conditioned by BSP to see it’s “overdoing”.
I sometimes tend to do more than average, when I have energy and I can foresee a crash so I need to get done quickly and out of the way.

 

“I tend to overdo things and then rest up for a while”
If you have PEM, it’s adaptive rather than maladaptive to rest a bit more.

And if you have PEM, whatever you did to bring it on could be defined as overdoing it, even if most people wouldn’t call it overdoing it and also it might not even be overdoing it for you on another day.

 

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”