Symptom perceptions, illness beliefs and coping in chronic fatigue syndrome, 2009, Moss-Morris

Utsikt said:
I’m not an expert, but I’m pretty sure those hormones affect and are affected by plenty of other things than ‘stress’. So by themself, they mean pretty much nothing.
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Yeah. There’s a lot of pseudoscience oversimplification around hormones of sort of: dopmaine = happy, cortisol = stress, oxyctocin = love but in reality those are very gross oversimplifications that I would call dishonest.
 
dundrum said:
Yes. It's just a preprint for now (I thought it was just published properly today, but it's just a healthrising article). They do a literature review into parasympathetic suppression in patients:

"Patients with long COVID have lower HRV values at rest in the time-domain [8,19] or during sleep in the frequency domain [8], suggestive of parasympathetic inhibition and autonomic dysfunction. However, some studies even report higher HRV in the time-domain in long COVID patients [20,21]. A recent literature overview confirmed a lower HRV in patients with long COVID, although methodological quality was poor and measurements were very short and not related to specific daily life activities or sleep [22]. These findings suggest autonomic dysfunction, characterised by diminished parasympathetic activity, which may be a key feature in long COVID patients [8,19], but how HRV is related to the pathophysiology of ppost-exertional malaise in long COVID is currently unknown. Indeed, HRV in patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) remained lower shortly after exercise, while HRV increased in healthy controls [23]."
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Thank you. Do you mind crossposting your response to that thread so we can continue this particular line of questioning there?
 
rvallee said:
This is no different than arguing for vaccines causing autism and demanding it be studied again, again.
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dundrum said:
It's not like arguing that vaccines cause autism, as that is not based on any evidence.
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I believe the key element of comparison was the suggestion of studying something over and over even though we’ve already been down that path.
 
jnmaciuch said:
Again, I see a pattern of going between “stress reduction may be somewhat helpful in some people” vs. “ME/CFS is caused and maintained by ongoing stress and will be alleviated by stress reduction.” It’s either one position or the other, and the latter certainly isn’t supported by any strong evidence.

This forum isn’t hostile to the idea of stress reduction, that’s a perfectly great thing that everyone can probably benefit from. It’s pushing back on the idea that stress explains all (or even most) of our illness. There’s simply no strong evidence of that, and believe me, I’ve been looking. If you and I are on the same page about that, then there’s nothing further to discuss.
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The problem is that once the body gets into the hypoactive state, it might get stuck. See for example: https://pubmed.ncbi.nlm.nih.gov/19165314/

Also, many patients do report ongoing stress related to the illness itself.
 
dundrum said:
Adrenaline and cortisol are the two main stress hormones.
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I thought we had just decided it was parasympathetic, not sympathetic?

There is no consistency on cortisol data.

And being ill is presumably stressful.

None of this gets us anywhere. It certainly does not get us to the point of recommending clinical practice.

A lot of the people who defend psychological approaches are very critical of 'big Pharma', but at least Big Pharma has to do dose response studies and provide reliable evidence of efficacy in order to get a license. CBT was introduced to ME/CFS without trials even having been done. Wessely and Chalder wrote a paper describing the best way to do it before they had any data. Since NICE 2021 CBT has effectively been downgraded to 'Complementary Medicine' status. As in 'unproven medicine'. Until we have efficacy data, talk of stress and hormones is just armchair speculation.
 
Jonathan Edwards said:
I thought we had just decided it was parasympathetic, not sympathetic?

There is no consistency on cortisol data.

And being ill is presumably stressful.

None of this gets us anywhere. It certainly does not get us to the point of recommending clinical practice.

A lot of the people who defend psychological approaches are very critical of 'big Pharma', but at least Big Pharma has to do dose response studies and provide reliable evidence of efficacy in order to get a license. CBT was introduced to ME/CFS without trials even having been done. Wessely and Chalder wrote a paper describing the best way to do it before they had any data. Since NICE 2021 CBT has effectively been downgraded to 'Complementary Medicine' status. As in 'unproven medicine'. Until we have efficacy data, talk of stress and hormones is just armchair speculation.
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The discussion on stress hormones wasn't related to ME/CFS. I was just responding to a comment that "stress hormones are not a thing". Yes, there is no consistently on cortisol in ME/CFS. The somewhat confirmed findings are related to hypoactive HPA axis (CRH, which we can't measure directly in humans).
 
dundrum said:
And has it been disproven?
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dundrum said:
We know for certain that stress can cause physical symptoms. We can't say for certain if one person's symptoms are caused by stress.

I think it is a concept that should be further studied in ME/CFS, as we do have multiple studies showing the stress is a precipitating factor, and that stress hormones are affected.
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We’ve already addressed that ‘stress can cause physical symptoms’ means nothing.

The study you shared on stress as a precipitating factor does not back your claim because it can’t prove anything.

And as per above, ‘stress hormones’ doesn’t mean anything.

So in thirty odd years, nobody has found anything to indicate that ‘stress’ plays any meaningful role in ME/CFS.

So technically, it hasn’t been disproven. But at some point you might want to stop and consider if another path might be more fruitful.
 
Utsikt said:
So that implies that stress plays a causal role in their illness?

As any person today if they are stressed. Most will say they are. Yet they don’t have ME/CFS.
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Yes, but we can't predict who will develop PTSD, for example. It likely requires a certain level and duration of stress, possibly combined with genetic factors. More than just worrying about a high phone bill.
 
dundrum said:
The problem is that once the body gets into the hypoactive state, it might get stuck. See for example: https://pubmed.ncbi.nlm.nih.gov/19165314/

Also, many patients do report ongoing stress related to the illness itself.
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This doesn’t address the point I’m making in the quote at all.

In my view, the ongoing issue across all the responses I’ve seen from you is a lack of clarity and consistency on what your position is. Perhaps it would be helpful to get a clear answer as to the following:

1) in your view, is all ME/CFS caused by an initial period of chronic psychological stress?
2) in your view, is all ME/CFS maintained by ongoing chronic psychological stress?
3) in your view, will all pwME be able to recover from their illness if they effectively utilize stress reduction?

If you answer “no” to all these questions, then you are on the same page as the vast majority of people on the forum, who readily acknowledge that stress might possibly contribute to either the onset of illness or might worsen (but not explain) the symptoms of ME for some individuals.

We will also readily acknowledge that there have been some findings linking HPA axis function, cortisol levels, etc. to ME/CFS, which are of varying quality and which still would not provide any useful explanation of disease etiology even if some of those findings were actually robust.

[edited for grammar]
 
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Utsikt said:
We’ve already addressed that ‘stress can cause physical symptoms’ means nothing.

The study you shared on stress as a precipitating factor does not back your claim because it can’t prove anything.

And as per above, ‘stress hormones’ doesn’t mean anything.

So in thirty odd years, nobody has found anything to indicate that ‘stress’ plays any meaningful role in ME/CFS.

So technically, it hasn’t been disproven. But at some point you might want to stop and consider if another path might be more fruitful.
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It depends what you mean by fruitful. If patients are using this information and recovering, then I would call it fruitful, and we should be doing more research. The "stress hormones" comment was unrelated to ME/CFS. Stress hormones are not a factor in ME/CFS. We don't need to completely "prove" something to make a useful contribution to patient care. Think of lithium in bipolar disorder. Nobody really knows how it works.
 
jnmaciuch said:
This doesn’t address the point I’m making in the quote at all.

In my view, the ongoing issue I see across all the responses I’ve seen for you is a lack of clarity and consistency on what your position is. Perhaps it would be helpful to get a clear answer as to the following:

1) in your view, is all ME/CFS caused by an initial period of chronic psychological stress?
2) in your view, is all ME/CFS maintained by ongoing chronic psychological stress?
3) in your view, will all pwME be able to recover from their illness if they effectively utilize stress reduction?

If you answer “no” to all these questions, then you are on the same page as the vast majority of people on the forum, who readily acknowledge that stress might possibly contribute to either the onset of illness or might worsen (but not explain) the symptoms of ME for some individuals.

We will also readily acknowledge that there have been some findings linking HPA axis function, cortisol levels, etc. to ME/CFS, which are of varying quality and which still would not provide any useful explanation of disease etiology even if some of those findings were actually robust.
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I'd prefer to discuss the evidence rather than my own views (which are really just based on the evidence). But my answer to all 3 questions above would be NO, as that is what the evidence suggests. So I guess we are all on the same page.
 
dundrum said:
It likely requires a certain level and duration of stress, possibly combined with genetic factors.
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This is, again, the fallacy of explaining disease on the basis of normal control mechanisms.
I have had the stress of having a spouse fall ill with a serious and potentially incurable, and also in the context of UK health care, potentially fatal, psychotic illness, for about a year. Is that enough stress for you? I was very sad but never got any signs of ME/CFS.

Normal stress responses do not explain ME/CFS. That is plain as a pikestaff.

There might indeed be genetic risk factors but that is a different hypothesis and one without data as yet.

Can you not see that you are arguing exactly the way Popper criticised Freud for arguing - in terms that are untestable because they don't actually make any useful predictions?
 
dundrum said:
Yes, the hypoactive HPA is related to ME/CFS. It is one of the few mostly replicated findings in ME/CFS as mentioned above.
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Hang on. The data we have is not well replicated. We have been analysing these things here for ten years. 'Mostly replicated' isn't any use to us I am afraid. And you said that we could only know with a CRH test you cannot do in humans so that cannot provide any evidence on ME/CFS. So what exactly are you arguing.
 
dundrum said:
I'd prefer to discuss the evidence rather than my own views (which are really just based on the evidence). But my answer to all 3 questions above would be NO, as that is what the evidence suggests. So I guess we are all on the same page.
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Great! Then I would love to see good quality evidence that chronic psychological stress is the driving factor of illness for some, or even most, pwME.

I have looked at all the evidence you shared, most of which I have already read previously. I actually started looking into it several years ago because I was trying to figure out how my specific illness might have arisen from a period of stress.

I am a big proponent of the virtues of rest, relaxation, and mitigating psychological stress in general. But needless to say, I was disappointed with how little existing research on “stress” is able to robustly explain any part of ME/CFS etiology or pathophysiology [added:] or to offer any curative (or even moderately effective, frankly) treatments on the basis of stress reduction.

At this point, I can confidently say that I have not seen a single study that can provide more than vague, heavily confounded conclusions on the role of “stress” in ME/CFS.

If you agree, then we’re on the exact same page about “the evidence” as well [added:] which seems to be only anecdotes.
 
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