Role of overstress in CFS

[Woolie]

The problem with stress is that we can't rely on our retrospective recall to assess it. I'm sure most of us have thought a lot about the events going on during the lead-up to our illness, and what role they might have played. So the events are going to be salient in our minds, whereas we totally forget other times when we've been euqally stressed - or even more stressed - because they were without consequence. There's a recall bias.

Another problem is that in the early stages of the illness, many of us were trying to fight through it. So given the state of our health at the time, it felt like we were putting ourselves under a lot of stress trying to press on. But in this scenario, in stress isn't a clear cause, it sort of happened alongside the developing illness.

The third problem is that although stress can in principle be mental or physical (e.g. overexertion, sleep deprivation etc.), the two are almost always yoked together. So you're stressed about a work deadline (mental stress), but the result of that is that you stay up late, skp sleep, etc. (physical stress).

I wasn't under particular stress when I got ill (the stress started when I had to cancel stuff and explain why I could fulfill my responsibilities).

And paradoxcially, since then, some of the times of highest stress in my life have been the most symptom-free. Long-haul flights (which most people would think of as physically stressful) always gave me a few days' relief from illness after I landed. And one of my best periods of good health was the 12 months after my marriage broke up.

 

[Marky90]

Sounds like you were busy alright ! But if you were enjoying yourself then I don't think it would be as stressful as someone who lost their job or is going through a divorce or bereavement etc.

That`s probably correct. I think maybe it all just felt stressful in the last years, as my ME gradually developed. Really hard to assess..

 

[user9876]

The problem with stress is that we can't rely on our retrospective recall to assess it. I'm sure most of us have thought a lot about the events going on during the lead-up to our illness, and what role they might have played. So the events are going to be salient in our minds, whereas we totally forget other times when we've been euqally stressed - or even more stressed - because they were without consequence. There's a recall bias.

Another problem is that in the early stages of the illness, many of us were trying to fight through it. So given the state of our health at the time, it felt like we were putting ourselves under a lot of stress trying to press on. But in this scenario, in stress isn't a clear cause, it sort of happened alongside the developing illness.

The third problem is that although stress can in principle be mental or physical (e.g. overexertion, sleep deprivation etc.), the two are almost always yoked together. So you're stressed about a work deadline (mental stress), but the result of that is that you stay up late, skp sleep, etc. (physical stress).

I wasn't under particular stress when I got ill (the stress started when I had to cancel stuff and explain why I could fulfill my responsibilities).

And paradoxcially, since then, some of the times of highest stress in my life have been the most symptom-free. Long-haul flights (which most people would think of as physically stressful) always gave me a few days' relief from illness after I landed. And one of my best periods of good health was the 12 months after my marriage broke up.

I wonder if there is a further issue. As I see it ME could be seen as some sort of dynamic system that is affected by exertion. I would see stress as often leading to additional exertion and hence it could have an influence purely from that perspective. So someone doing ok but with mild symptoms may go through a stressful time leading to over exertion and sleep deprivation and this simply as exertion leads to a relapse and worsening of health. To look at such effects you would need to look at overall 'energy usage' for someone which I suspect would be next to impossible to calculate.

 

[MeSci]

Without knowing your specifics, I think in a lot of cases people look back and think they were under a lot of stress but I am sure there are plenty of people out there under much more stress who dont get sick.
It's hard to know.

I don't think anyone is saying that the same stressors (which can be all kinds of things including infections, physical traumas and exertion) will have the same effect on everyone. After all, we are all exposed to many things all the time, and only some of us get ill.

Myself - I was definitely exposed to many of the likely causal factors - I know, because I was keeping a health diary.

 

[MeSci]

That is why some of us can walk for an hour before the onset of PEM, but others can barely manage 5 minutes. At some point, a threshold is crossed and the body starts responding to the presence of raised cortisol as a pathogen rather than a normal response. Immune response ensues.

The real question is why? How did the body learn to get this way?

One of the ways to measure one's limit is to measure heart-rate, and most of us can ensure that we don't exceed the rate that sets off PEM for us, although the worst-affected people cannot even sit up in bed without exceeding this.

I'm not sure whether cortisol is involved in this. Do you have a link that says it is?

 

[Mij]

When I first became ill I had several immune profiles done and they were all very normal. I had a viral infection but everything else was ok and I was still able to continue school and work. The more I did after that though, the worse I became. The exertion after the initial onset was the point of 'no return".

My immune profile 11yrs later became abnormal

 

[sorin]

My immune profile 11yrs later became abnormal

What exactly in the "immune profile" was abnormal? And what specific tests did you perform to asses the "immune profile"?

 

[Mij]

@sorin I had several abnormal tests according to the virologist, but I was only able to get copies of my CD4, CD8 etc that all went down below normal range.

 

[MeSci]

When I first became ill I had several immune profiles done and they were all very normal. I had a viral infection but everything else was ok and I was still able to continue school and work. The more I did after that though, the worse I became. The exertion after the initial onset was the point of 'no return".

My immune profile 11yrs later became abnormal

I didn't have an immune profile done initially, but coincidentally had a metabolic profile done the year I consider the start of ME. I uploaded the results here (they are attached at the end of the blogpost), and had hoped that someone might be able to throw some light on them, but no one has so far! I'd like to know if they are as healthy as I was told they were.

4 years later, when I finally demanded a diagnosis, I was screened for the few things that are recommended in the UK (CMV, etc) to exclude things other than CFS, which were negative.

 

[Aurator]

The problem is that the medical definition of stress is the response to stimuli, not the stimulus itself. So running a marathon is not stressful if you and your body feel good about it. This confusion constantly occurs in discussions of stress. I suspect that in discussions of disease causation the term stress is pretty much useless.

I can see how stimulus and response sometimes don't get adequately distinguished.

One thing I'm still slightly confused about after reading your post is what you mean exactly by "if you and your body feel good about it". Is "you and your body" there intended as a hendiadys or are we dealing with two responders each with an individual role to play?

I ask this not to stimulate a mind/body discussion, but in order to find out if you're saying that how we think about what we do or experience, (whether before, during or after) is something that can substantially influence how our body reacts. My experience suggests an unpredictable/tenuous correlation at best.

A few months before I got ME/CFS (following a URT infection) I can remember doing a race that I felt really good about while I was warming up for it, but that my body, halfway through the event and for a couple of weeks afterwards, decided to feel terrible about. Rather than placing in the top 10% of the field, as I normally did, I came about halfway down. The body feeling terrible bit was not because I was coming down with a cold or food poisoning or something straightforward like that; I ended up having symptoms for a couple of weeks that were very similar in kind to PEM. The mystery is why my body decided not to feel good about it. This of course may be what you were driving at in your own post.

 

[Mij]

@MeSci I hope someone can interpret your test results. I was told many times by doctors that my tests were 'normal' many years ago, I started suspecting they weren't so I demanded copies.

What a terrible dog bite! my goodness How did you feel after the tetanus shot?

 

[MeSci]

@MeSci I hope someone can interpret your test results. I was told many times by doctors that my tests were 'normal' many years ago, I started suspecting they weren't so I demanded copies.

What a terrible dog bite! my goodness How did you feel after the tetanus shot?

I can't remember. I think I was still so traumatised by the life event that I didn't really care about my own health.

 

[sorin]

@sorin I had several abnormal tests according to the virologist, but I was only able to get copies of my CD4, CD8 etc that all went down below normal range.

Was any viral infection identified?

 

[Mij]

@sorin I don't know what viral tests were done when I first became ill (24yrs ago), I didn't ask questions back then. All I had was highly elevated anti-thyroid antibodies- felt horrible.

I did have reactivation of HHV6 and EBV around 11yrs ago after taking immune modulators.

During the time of the CD4, CD8 etc testing I had PCR for many viruses and lyme but all came back normal.

 

[slysaint]

When I was first ill with pneumonia I was put under a lot of pressure to return to work which resulted in me going back too soon and facing a huge backlog of work which everyone wanted sorting out immediately. I often wondered if I hadnt done this and taken more time to recover maybe I wouldn't have ended up with ME. I'll never know.

 

[Mij]

@slysaint I thought this too for many years. But now I believe it would not have made a difference.

 

[Skippa]

One of the ways to measure one's limit is to measure heart-rate, and most of us can ensure that we don't exceed the rate that sets off PEM for us, although the worst-affected people cannot even sit up in bed without exceeding this.

I'm not sure whether cortisol is involved in this. Do you have a link that says it is?

Cortisol and stress hormones are raised in response to both exercise and mental exertion, a quick google reveals several papers that show this.

I was trying to find a link between why mentally working too hard OR exercising too hard can both bring on PEM.

 

[MeSci]

Cortisol and stress hormones are raised in response to both exercise and mental exertion, a quick google reveals several papers that show this.

I was trying to find a link between why mentally working too hard OR exercising too hard can both bring on PEM.

I think a lot of us are looking for the answer to that one, and even more for the solution(s), so let us know if you find anything!

I looked at 2 possibilities in my blog here and here.

I currently think that, in my case at least, it is excess acidity in the blood, derived from the muscles (in the case of physical activity) and/or from the neurons (in the case of mental activity).

 

[BurnA]

@slysaint I thought this too for many years. But now I believe it would not have made a difference.

I agree, but even if we are wrong we can't blame ourselves for continuing on with our lives while sick. Most people barely take time off or if they do they get back to work fairly quickly and nearly all of these cases don't result in me/cfs. I do wonder if I had rested more during the acute infection if I would have me/cfs today but like I said there must be plenty of people out there feeling sick and not taking adequate rest. It might be a factor but there must be more to it.

 

[Jonathan Edwards]

I can see how stimulus and response sometimes don't get adequately distinguished.

One thing I'm still slightly confused about after reading your post is what you mean exactly by "if you and your body feel good about it". Is "you and your body" there intended as a hendiadys or are we dealing with two responders each with an individual role to play?

I ask this not to stimulate a mind/body discussion, but in order to find out if you're saying that how we think about what we do or experience, (whether before, during or after) is something that can substantially influence how our body reacts. My experience suggests an unpredictable/tenuous correlation at best.

A few months before I got ME/CFS (following a URT infection) I can remember doing a race that I felt really good about while I was warming up for it, but that my body, halfway through the event and for a couple of weeks afterwards, decided to feel terrible about. Rather than placing in the top 10% of the field, as I normally did, I came about halfway down. The body feeling terrible bit was not because I was coming down with a cold or food poisoning or something straightforward like that; I ended up having symptoms for a couple of weeks that were very similar in kind to PEM. The mystery is why my body decided not to feel good about it. This of course may be what you were driving at in your own post.

I agree. There is a further conflation of the basic autonomic stress response, like sweating and fast heart rate, and longer term stress responses involving corticosteroids, catabolic states etc. And higher mental function probably feeds in to these at multiple levels. Instead of you and your bod maybe I should have said all your various physiological response mechanisms, neural and otherwise.