Boom & Bust, where's the evidence?

Graded Exercise Therapy, at least in the UK, comes with the advice that 'Boom & Bust' cycles of activity are an obstacle to the rehabilitation of the MECFS patient.

After a week of Vøgt retweets in my twitter feed, I thought it would be productive to explore an idea from psychiatry that might be considerably wanting for evidence and demonstrate how there's not exactly a dearth of skepticism to be found on this side of the fence.

Assumedly, the first place you might look to develop the idea that Boom & Bust is a hinderence to recovery, is by looking at the rehabilation process patients suffering injuries and other diseases have gone through. In the cases of succesful rehabilitation, what overall effect did Boom & Bust behaviour have on the speed of recovery? Did the patient persist with Boom & Bust behavior despite it's hindering effects? If the patient is able to achieve results, despite inefficiences, what effect does this have on the claim that Boom & Bust is responsible for the failure of a treatment like GET?

It might well be argued from the psychiatric perspective that, the psychological cost of failure after a Boom & Bust cycle of activity is unique to the 'Oxford CFS' patient. While this might be argued, how exactly can it be proven?

After a Boom & Bust cycle of activity, patients experience 'relapses' where symptom severity is increased and new or uncommon symptoms may present at the same time. When it comes to data on relapse, such as 2 day exercise testing, there is actually substantial data that supports the idea of impaired recovery from exertion when compared to healthy controls. It is perhaps most notable that such studies do not seem to enjoy the level of replication in the UK as they do in the US.

The next hurdle is, how do you measure and attribute anxiety after a relapse? Anxiety due to poor health is reasonable behaviour. It would be extremely difficult to specifically prove that the anxiety following a Boom & Bust cycle is contributing to a behavioral pattern that re-enforces a sickness role in the absence of a persistent disease process. Given that medical science, while amazing, has much still to learn, how can you logically & ethically make the leap that the patient's described experience is unreliable and a diagnosis of abherrent behavior is appropriate and evidence based?

I'll leave it there for now, but I'm really interested to hear others thoughts on this and learn of any research that is relevent to these points.

 

These three papers might be of interest. From what I remember the evidence in all of them ends up challenging the boom-bust narrative. To me, the boom-bust story seems like just a BS myth used for spinning PEM into a justification for CBT/GET.

https://www.ncbi.nlm.nih.gov/pubmed/20943713

https://www.ncbi.nlm.nih.gov/pubmed/11164063

http://www.jpsychores.com/article/S0022-3999(11)00117-6/abstract

 

Yet in a way they are right. Trying to spread activities out (at whatever level you operate) helps to avoid unhelpful bodily reactions (PEM or whatever we want to call it) that could cause further relapse.

In that sense the concept of "Avoiding Boom and Bust" is not entirely a bad idea.

Yet what gets me is that this helpful pacing type strategy can get used to blame patients for either, not progressing, or for their relapses.

It is simply not possible to do the same amount each day.

It is also perfectly reasonable to budget energy quotas so that a somewhat more energetic day (eg my daughter's recent wedding) is intentionally sandwiched between other less active days.

Neither is it reasonable to make the leap that patients get into a cycle of Boom and Bust, and that somehow this depresses them, or makes them anxious, so much that they give up trying to get better. The anomaly here is surely that if this depression & anxiety were really a factor then the next "Boom" would never happen! Meaning the Boom & Bust cycle would be self correcting - depression would stop the Booms, so the Busts would also stop??

 

I don't think anything I do is exciting or lively enough to merit the word 'Boom'. More like dogged trudging with intermittent flailing. I'll come back to read the papers.

 

I think the boom and bust idea is way more nasty and insidious, @Keela Too. Its way more than a reasonable person trying to get things done when they have a good day.

The idea succeeds in somehow labelling any level of activity that a patient engages in as pathological. The patient cannot win. When the patient rests, they are being dysfunctional, and when they are active they are also being dysfunctional. In other words, whatever the patient is doing, its either too little or too much - else we woudn't be sick, or so the reasoning goes. The idea succeeds in holding us to blame for our ongoing illness, and feeds into the idea that we somehow need "correcting".

I was pretty astounded by that Wearden paper that came out last year, claiming they had operationalised "boom" and "bust" behaviour. It was ridiculous, because there was no operationalised definition of what would be a healthy "normal" level of activity. So naturally, all behaviours ended up being classified as "booms" or "busts" thereby fulfilling the study prediction. People got classified as engaging in "boom or bust" behaviours if they responded "yes" to questions like "When I have a good day, I try to get a few things done".

It is perfectly natural - and a very good strategy - to make the most of the good days. Like use the good periods to do essential tasks like shopping, or even - heaven forbid - just taking some pleasure in life. My own experience is that sometimes I don't get it exactly right, and regret it the next day. Sometimes, its because I mis-estimated how much I could get away with. Occasionally, its because I just had to do something, there just wasn't any choice.

I'd like to see some of those psyc's walk the tightrope we walk every day, and see how well they do. And they think they can somehow share their incredible wisdom with us and stop us from being so dysfunctional, its really arrogant.

(Edited to fix error)

 

Agree @Woolie - they have turned what could be a useful concept for long-term management of a fluctuating condition into something totally different. Used as an accusation it becomes a perfect Catch 22 of blaming the patient for whatever they do. There is NO right answer.

I wrote a piece about trying to even out activities once. http://www.sallyjustme.blogspot.co.uk/2014/09/play-up-and-lay-up.html

At the time I didn't realise that the BPS lot were engaging in this Boom & Bust Blame Game.

 

I agree with the blame thing. Just because youmake a decision to do an important activity like traveling for a medical appointment for example knowing it will result in PEM and even though you try to mitigate that as much as possible. Does not make it our fault if we have a bad episode of PEM. What choice do we have. If we are just about able and there is any benefit in doing something we will do important stuff. The problem is these people are thinking about it in terms of GETSET Julie

 

I’ve never compared living with ME to walking on a tightrope before....that’s exactly what it’s like.

And, yeah, there is blame whatever you do.

Ah, I’d forgotten about GETSET Julie!

 

Boom and bust theory is about the biggest nonsense ever.... The funny thing is that a normal training effect is actually training and then "resting" for a day or two. So if they are really going for the deconditioning-theory, then training would not be "doing the same thing every day". Proper training does consist of training and rest-days.

When I was still mild, I was doing the (pretty physical) work I did before getting ill, but only three days a week and limited hours. I had the same thing were the doctors simultaneously tried to tell me I was doing boom and bust ánd I was deconditioned. I think when I added the physical activity of those three half days, I was still doing physically more than a healthy person with a desk job. How could I be deconditioned??

When I started rehabilitation (GET) and I hád to do something everyday, I quickly deteriorated. I had a crash, couldn't do anything for a while. I tried for a year now to "do the same thing every day", but it hasn't gotten me anywhere. I have recently started using the energy I have to do something and then force myself to total rest the day after. Works a lot better. I can actually do some stuff and I feel I am getting a bit of my strength back.

The most important thing about pacing (for me) is the cumulative effect. I can do something one day, only not the day after and the day after. I actually think the boom and bust pattern is an adaptation to this illness and is beneficial.

 

Right enough @unicorn7 - When training the horses for endurance we certainly didn't aim for the same amount every day. Used by the psychiatrists the boom & bust idea is certainly not helpful.

 

I would think boom and bust is an extreme of peaks and troughs - peaking as high as the PwME can manage, and dropping into very low troughs as a consequence. Pacing is about levelling out the peaks and troughs as best as possible, and must I'm sure be a very individual juggling act for each PwME. Keeping the peaks well short of anticipated maximums, so the troughs are much less acute. I would think anything other than pacing still means significant disparities between the highs and the lows. If real physical capabilities were to be graphed over time, I imagine it would show some form of oscillatory trace, the peak-to-peak amplitude reducing the better the person paces.

And of course pacing, at least for someone mild/moderate such as my wife, is not just about aiming for the absolute minimum disparity between high/low, because she also balances that against doing stuff she wants to as best her limited capabilities will allow. So she tolerates some degree of feeling really cr*p in the troughs, so she can achieve some of what she aspires to in the highs.

 

The 'do the same every day' thing has little to do with an appropriate response to deconditioning. As @unicorn7 & @Keela Too said, thats not how genuine fitness training is done. It strikes me that it's all part of their operant conditioning based approach - so it's designed to train us out of the idea (derived from lived experience), that exertion causes symptoms, supposedly reduces anxiety about how much we're doing & tries to disconnect the experience of what we think of as PEM from the 'PE' in PEM, thus revealing to us that we are not organically ill. They want us to think "oh my pain is worse today but i didnt do any more than usual yesterday, perhaps something else (ie anxiety, conversion disorder etc) is causing my symptoms, just like they said at the clinic".

This. Oh_ So _ Much_ THIS!

This too (my bold). I think this that @Barry said best describes my own approach.

I think people who use boom & bust terminology healthily, mean it in this way. I sometimes use the phrase to people who dont understand why i'm stopping *before the point of utter collapse.

 

No, what they think is that after a "boom" we don't enjoy the sensation of having exerted ourselves too much - we confuse that very normal set of sensations with having a disease - so we crawl back into bed.

Its exercise as a phobia. So, if you had a spider phobia, you probably shouldn't try to get over it by jumping into a tank full of spiders, that will be terrifying and will heighten your fear in future. So you should start small - with a picture of a spider. Get comfortable with that first, then one in a jar, and so on.

 

My daughter does not have ME, but POTS. When the symptoms showed their ugly heads, she got told it is just some OI, pretty normal in adolescent females and the remedy would be sports. She was still very active, pretty fit compared to the average adolescent female, and tried hard to keep up her schedule for over 2 years. No GET, just staying at the same level. It did not work out, no booms but small busts and she declined slowly. Later we found out she has POTS and against the opinion of doctors, for her to be able to go regulary to school, she has to cut down on sports.

Besides normal activity only training while sitting with legs up or laying down. Pushing boundaries leads only to missed classes. It seems, as if there is a limit. Not a fixed one but going up and down, like a moving target. Standard POTS medication has helped her to stay active and function a lot. For luck we have found a doctor, who accept that sports is not the cure, even for POTS.

 

Exactly @TiredSam !! This is what i have been saying for years Do they think we are all utterly stupid? even a person with a severe intellectual disability can tell that a bicycle and a horse are not the same thing.

I can tell the difference between the experience of... anxiety.... not enough sleep... the bodily sensations of having done much more than one is used to. I am not stupid & have experienced those things multiple, multiple times in my almost 5 decades of life.
If the 'sensations' i experience were the same as any one of those 3 things either separately or combined, I wouldnt have reported it to a *!$@!** doctor as abnormal. I have also experienced having the flu'infections many times in my life & am capable of comparing & contrasting & so when i say thats how it feels, thats because it's how it feels.

I am NOT so utterly dense that i started somehow confusing the experience of having the flu/other infection with the experience of being tired. They are not at all the same and it makes me furious that they cannot believe i am reliable witness to my own experience.
It's like my telling them something tastes like cheese only to be told 'no it doesnt it tastes like blueberries'.

Just sod off.
If i tell you it tastes like every bite of cheese i've ever had, then thats what it ruddy well tastes like. Why cant you just accept that & behave accordingly. Just cos you cant taste the cheese doesnt mean i must have suddenly, overnight become unable to differentiate.

Sorry for the rant, but yeesh, this aspect of the aberrant beliefs nonsense makes me SO angry

 

I think the cumulative effect is more of a "negative accumulation". A healthy person can replenish their energy reserves quickly, so what they use today will be pretty well restored by tomorrow after a good night's sleep. But a PwME seems to only replenish their energy reserves very slowly - I suspect the more severe the person is, the more restricted their energy conversion rate is. So they might use up X joules of energy during a day, and it might then take many more days for them to then convert their food back into X joules of readily available energy.

When I see my wife during this process, I tend to feel that PEM might be the double-edged sword of severe energy drain, whilst trying desperately to convert energy under such conditions; the very process of energy conversion must itself consume energy - I've no medical knowledge but given nothing is 100% efficient then this surely has to be the case.

And as I write this the thought occurs to me: could it be that for PwME, their energy conversion is screwed both ways, when discharging as well as when charging? Just an idle and totally uninformed thought.

 

About sums it up for my experience Barry, and what I think you are describing is fatigability. This is not the same as simply feeling tired, and as one would experience pre-illness. As I've mentioned in times past, feeling tired is most definitely not my central issue, and feeling tired does not stop me undertaking activity, nor do my muscular/skeletal issues which result in a world of hurt, nor other issues, come to that.

My take on fatigability, as follows:

1. The clearly abnormal rate at which energy levels are used up (to the point of physical and mental exhaustion at its worst), even with trivial levels of repeated activity. Fatigue is an 'end state' for want of a better expression; fatigability is a process which leads to fatigue?
2. The clearly abnormal rate of recovery and/or ability to access available energy levels, until activity can again be undertaken. Again, I think it possible that fatigability is the impeding factor in this abnormal rate of recovery, rather than fatigue?

As fatigability relates to my experience of PEM, as follows:

1. I can experience an increase in all major symptoms, both during and immediately following activity, even when I think I am within my perceived 'energy envelope', at any given point in time or day. When it is just one or two major symptoms in play, then all good; when all major symptoms are in play, I'll not describe, except to say seriously unpleasant.
   
2. If I go beyond my 'energy envelope' - all too often, despite my best efforts - I will experience a delayed, and sustained increase in the severity all major symptoms (24hrs+ later), more often than not.
   
3. If I have gone beyond my 'energy envelope' due to a cumulative effect over the course of 2-6 weeks - and this aspect is the most difficult to get any 'purchase' on - I will definitely experience a sustained increase in the severity of all major symptoms. Likewise, I will experience a much more significant delay in recovery, such that I can get back to my prior baseline of activity levels. Unfortunately, I'm now at a point where I have been unable to get back to my prior baseline since December, following a significant relapse at that time, but no worries!

Not entirely convinced if I've made any sense Barry, but all I've got right now .. coming up to 10 years, living with this bloody awful disease, and hope of some help.

As an aside, When last I spoke to an OT in 2012, it was suggested that I do not use the word "relapse"; would be much more helpful for me to me to say "setback" .. did put a smile on my face at the time. I might try "flare up" should there ever be a next time on meeting an OT.

Wishing everyone improved health and every happiness, John

 

Yes, does make sense thanks John.