Boom & Bust, where's the evidence?

I’ve found this thread useful to get my head around the terms since having undergone pacing and then GET at a CFS clinic I’ve always had mixed feelings about how I received my “treatment”

When I first went to the clinic I was in a right pickle and couldn’t walk the few yards to the letter box to post my sick note to my employer. The clinic did help me understand proper pacing and the boom and bust description was helpful at the time to get me to baseline. They also described the delayed reaction and the principle of preemptive pacing quite well. I will be grateful for that.

I was always told that I was such a good receptive patient so didn’t need any CBT and at the time I didn’t have any concept of the Politics/PACE trial etc. I was just relieved I had a diagnosis and was receiving treatment. How stupid was I?

Once I was pacing properly I could do more. The GET when it went beyond baseline was bloody obvious that it wasn’t working so I decided not to continue and returned to pacing. The therapist was at a loss as to what to do..it was all going so,well up until that point.

I guess what I’m saying (in far too many words) is that for proper pacing boom and bust ...it’s an ok description...it described what was happening to me without pacing. So I did find the terms useful to help me to accept and manage pacing. It seems obvious now that this was designed for a different purpose but it did help me when no other help was available. I guess when psychiatrists and their cronies will twist words for as long as people listen to them. I wonder what is a better way of describing pacing and baseline to a novice?
 
arewenearlythereyet said:
I guess what I’m saying (in far too many words) is that for proper pacing boom and bust ...it’s an ok description...it described what was happening to me without pacing. So I did find the terms useful to help me to accept and manage pacing. It seems obvious now that this was designed for a different purpose but it did help me when no other help was available. I guess when psychiatrists and their cronies will twist words for as long as people listen to them. I wonder what is a better way of describing pacing and baseline to a novice?
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I see what you're saying, @arewenearlythereyet. But would you have got the same benefit from just having had pacing and delayed PEM explained to you - the idea of having to establish what you can do each day without too much payback later?

Instead of having your behaviours caricatured, would you have preferred at the time for someone to have acknowledged that its perfectly psychologically normal to want to do stuff, and that refraining from activities is hard and requires enormous self-discipline? That they themselves probably would also struggle with this in your situation?

I know myself, that's what would have helped me early on. In the early years, I was very upset by the insinuations ringing all around me that somehow I was at fault, for not reacting "normally", not doing it right.
 
Woolie said:
I see what you're saying, @arewenearlythereyet. But would you have got the same benefit from just having had pacing and delayed PEM explained to you - the idea of having to establish what you can do each day without too much payback later?

Instead of having your behaviours caricatured, would you have preferred at the time for someone to have acknowledged that its perfectly psychologically normal to want to do stuff, and that refraining from activities is hard and requires enormous self-discipline? That they themselves probably would also struggle with this in your situation?

I know myself, that's what would have helped me early on. In the early years, I was very upset by the insinuations ringing all around me that somehow I was at fault, for not reacting "normally", not doing it right.
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I didn’t feel at the time that my behaviours were being charicatured and they did acknowledge that this wasn’t my fault but part of how to manage things and that I would have to manage this indefinitely unless I recovered. They did say that there was a good chance I would recover (which I found out later was based on nothing but bullshit) and they did reference once the “high achieving” nomsense which I quickly turned around to heavy workload and got her to help letter bash my employer who really was taking the piss at the time.

I may have been manipulated by an extremely proficient master of illusion, but it didn’t feel like that at the time. I certainly didn’t feel blamed or insulted or in any doubt that the condition was biological after attending the sessions. I may have had a good clinic of course?

I guess we all look at these things through a lens clouded with BPS drivel ...it just feels we are focussing here on something that isn’t that important and slightly overanalysing meaning when I think the words were probably plucked out of the air and used because we had just had an economic downturn or something of that nature? I may be naive in this but there is a massive dose of stupid in the PACE trial as well as devious manipulations to cover up incompetence and of course their corrupt cosying up to the insurance companies and DWP. Let’s not credit them with too much intelligence?

I will never know whether I would have paced better with a different treatment, but I would say having help in the early stages from a sympathetic ear who could explain what was happening to me worked to get me out of the crash crash crash cycle. I don’t know where I would be if I hadn’t slowed down to a crawl and slowly crawled back up to baseline over 5 months or so. The important thing here is the result..not necessarily how they did it ...our focus should be on GET and Inappropriate use of CBT not pacing.
 
TiredSam said:
They seriously think we can't tell the difference? How patronizing. Why did I suddenly stop being able to tell the difference at the age of 47, having been sporty all my life and greatly enjoyed the sensation of having exerted myself too much up to that point? What happened in my brain when I suddenly started mistaking the enjoyable feeling of having exerted myself after weight training for feeling as if I'd been run over by a truck, buried in a lead coffin, and come half back to life as a zombie with kidney pains and a stabbing headache? Was it all just silly old me getting a bit confused?
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Haha, this!!

Barry said:
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.
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Definitely! It feels the same for me too. I think I'm spending more energy on the same tasks than other people, but I'm also getting my energy back rather slow.

With the accumulation, I mean that sometimes I spend energy one day and then the next day I still feel "ok" and then I could spent some more. I would get sick after three days and I wouldn't get why.
I can spend some energy on one day, as long as I rest the next one or two days. I never do something two days in a row, however well I feel.

I think with severe people, just the energy of keeping your body working, might send them into PEM all the time. They just can't get out of their deficit.
 
It would be interesting to know how often, and in how wide a group of patients, the phenomenon of the complete boom and bust cycle has been observed by those who opine on the subject.

It is hard to see how a rational person in possession of the evidence could come to a psychiatric explanation of the illness.
 
Barry said:
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.
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The CPET testing explained this.

Normal healthy people AND sick people get their energy from aerobic respiration. It is so hard for them to move into the "emergency" anaerobic respiration they have to go to a gym. Anaerobic respiration is an inefficient "dirty" way of making energy, imagine having to dig out a paraffin heater to deal with a power cut. It is also the body's signal to make more mitochondria so that next time you need that amount of energy you can do it aerobically which is what we call getting fitter (or, confusingly, aerobic exercise)

Turns out, people with ME have to use anaerobic respiration to carry out their activities of daily living. Their aerobic systems are broken to an individual level. If MS patients have a disease that means individual nerves don't work we have a disease where individual energy systems don't work. I think where we are mild or severe depends on how much of our systems are broken and so how quickly we slip into anaerobic respiration.

The kicker of it all is that it is the aerobic system that clears the waste products of anaerobic respiration. This is fine if you just use it to run for a bus, you pant a bit with what is called an oxygen debt and then are back to normal. So our broken system needs days to get us back to normal as we are also using the precious unbroken bits of the aerobic system to help us live. This is the only work I have seen that explains the 3 day delay in PEM that is classic to ME.
 
Mithriel said:
This is the only work I have seen that explains the 3 day delay in PEM that is classic to ME.
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How does it explain that? (the delay before PEM specifically).

It may just be me being stupid but the above matches explanations I have seen for why pwMEhave less energy and take so long to recover, what it does not explain, as far as I can see, is why the delay before PEM kicks in.
 
It may just be my confused brain, but it looks like it could be 0 day max available 100% which I use because I am overdoing it so next day I only have 70% but I am not doing so much so I don't notice

Then 2nd day post overdoing it I only have 40% of the original as the maximum I can do but I know I have to rest so I am taking it easy BUT I do not realize I am using the maximum available energy to achieve that.

Then bang, next day the 3rd, as it has been for years, the maximum available to me is so low that I can't even get out of bed.
 
Esther12 said:
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.
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I'll also add this study:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3079947/

Sleep. 2011 May 1; 34(5): 671–678.
Published online 2011 May 1.
PMCID: PMC3079947
PMID: 21532961
Sleep-Wake Behavior in Chronic Fatigue Syndrome

Results:
Ratings of symptoms, disability, sleep disturbance, and pain sensitivity were greater in patients with CFS. No between-group differences were found in the pattern or amount of sleep, activity, or cortisol secretion. Afternoon activity levels significantly increased evening fatigue in patients but not control subjects. Low nocturnal heart rate variability was identified as a biological correlate of unrefreshing sleep.
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unicorn7 said:
I actually think the boom and bust pattern is an adaptation to this illness and is beneficial.
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Examining the objective evidence, it is clear there is no "boom". Calling it a boom is unfair and deliberately mischaracterises our experience. "Boom" suggests higher than normal activity (for a healthy person). The healthy doctor or layman reads this and asks, oh I feel bad after doing above normal activity, how is what CFS patients experience any different to what I experience? They think, oh I get tired after such exertion too, therefore I experience PEM. This is a problem of interpretation.
 
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I have a theory about how this term "boom and bust"comes to be in use in descriptions of ME. It may be false. If one takes 1989 as the year of introduction of the term to ME parlance there was at that time much use of the phrase in connection with economic affairs and in particular the Nigel Lawson/Margaret Thatcher inspired boom and bust. As I remember it the words were hardly ever out of the news at the time. It looks like a bit of lazy borrowing of a popular term without any attempt to determine whether any analogies were appropriate.

This is probably political and so should be expunged.
 
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Snow Leopard said:
Examining the objective evidence, it is clear there is no "boom". Calling it a boom is unfair and deliberately mischaracterises our experience. "Boom" suggests higher than normal activity (for a healthy person). The healthy doctor or layman reads this and asks, oh I feel bad after doing above normal activity, how is what CFS patients experience any different to what I experience? They think, oh I get tired after such exertion too, therefore I experience PEM. This is a problem of interpretation.
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I agree there is a very misleading use of the terminology, and in the way used gives out all the wrong signals.

I think the notion does still have relevance for pwME, but cycling above and below what would be the pwME's own ideal pacing level; potentially just a theoretical level. For some that level will be so low that the very act of living moves them into the boom region, and must then be inevitably followed by bust.
 
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Boom & bust seems to be the lay term. For example all-or-nothing behavior is used in papers. All-or-nothing behavior sounds like - when I am not able to run a marathon then it's not worth to get up. ;) People with ME would never accidentally adopt this term for fluctuations between good and bad days.
There is evidence that all-or-nothing behavior, in which bursts of intense activity when feeling relatively well are interspersed with periods of extended rest in response to symptoms, is associated with the initial persistence of fatigue symptoms and onset of CFS after glandular fever (Moss-Morris, Spence, & Hou, 2011). There is less evidence that all-or-nothing behavior is involved in the maintenance of symptoms, although reduced all-or-nothing behavior did mediate a small proportion of the effects of cognitive behavior therapy (CBT) and graded exercise therapy on fatigue in one study (Cella, White, Sharpe, & Chalder, 2013; Chalder, Goldsmith, White, Sharpe, & Pickles, 2015). Therefore, all-or-nothing behavior is regarded as a potentially unhelpful management strategy. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5327891/
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I, jokingly, call my activity “boom and bust”, sometimes you have to be practical.

Of course, there is no actual boom, but a very very small tiny boom, the bust is hours of rest before and after.

My choices are between working two hours a day four days a week, or working 4 hours in two days. I have tried it a hundred times, but I get less crashes when I work four hours two days and then have an absolute rest day the say after, so I am pretty sure that “doing the same thing every day” is in no way useful for me. Although every doctor and physio I ever talked to, has tried to convince me otherwise...

I don’t think these choices can, in any way, be the enormous “boom” these people are thinking of?
 
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