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

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.

 

Thank you. Do you mind crossposting your response to that thread so we can continue this particular line of questioning there?

 

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.

 

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.

 

And has it been disproven?

 

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.

 

What do you mean by this?

 

They worry that their body is broken (e.g. damaged mitochondria). They struggle with people (family and doctors) not believing them. They struggle to work, or do everyday activities.

 

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).

 

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.

 

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.

 

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.

 

So no evidence in relation to ME/CFS.
I cannot follow the argument.

 

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]

 

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.

 

Yes, the hypoactive HPA is related to ME/CFS. It is one of the few mostly replicated findings in ME/CFS as mentioned above.

 

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.

 

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?

 

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.

 

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.