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

I tried reading the whole article but had to stop as it was so distressingly judgemental and so unrelated to my own experience I found it unbearable. And unscientific.

So just a couple of comments on the abstract.

abstract said:
Chronic fatigue syndrome (CFS) is an illness characterized by disabling fatigue of at least 6 months duration.
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That's the old Oxford diagnostic criteria, not current, so therefore not relevant to today's diagnoses that require PEM as an important core feature. The Oxford definition deliberately included both post viral fatigue conditions of any sort, whether they included PEM or not, and also specified that it included psychiatric conditions such as mild to moderate depression and anxiety that caused fatigue.

abstract said:
CFS patients also tend to be hypervigilant to symptom information and to maximize the extent of their symptoms and the consequences of experiencing symptoms.
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That is such a judgemental set of statements I hardly know where to start. It should never have been allowed in a medical journal. Nobody but the patient can know whether they are over or understating the severity of their symptoms, since by definition symptoms are what the patient experiences, and all the clinician knows is how the patient describes their symptoms. They can't know whether my nausea, headache, muscle pain, are as bad as I say they are. The so called hypervigilance is the opposite of my experience, as my approach to symptoms has always been to ignore them until and unless they physically prevent me from 'acting normal'.

How dare she judge me and my fellow patients like this? I have already described on another thread my training in adolescence to act as if I'm not in any pain when I had period pains. As a teacher, I regularly acted normal in front of classes while feeling very unwell. I never told my colleagues I felt ill all the time, and my doctor didn't ask either, just signed me off for a week when I was too ill to drive to work or stand in front of a class.

Sorry to go on about this. It's just so wrong it makes me angry.

abstract said:
They are often fearful of the aftermath of over activity which is reflected in two characteristic ways of coping with the illness including a passive disengagement response or an all-or-nothing erratic pattern of behaviour. These beliefs and coping strategics are related to disability and fatigue.
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Again the negative characterisation of the normal response of pwME who know both from recent experience and current symptoms that the 'aftermath of activity' will be worsened symptoms, greater debility and the likelihood of a PEM. Why describe sensible pacing with sufficient rests to make PEM less likely as a 'passive disengagement response'? That's so insulting.
I am allergic to horses and some other animals. I know from experience that if I go near a horse or to the clothing of someone who has been horse riding, I wlll get an asthma attack. So I avoid such situations when I can. That's not a 'passive disengagement response', it's sensible behaviour based on experience. Why is my pacing not described similarly?

As for 'an all-or-nothing erratic pattern of behaviour', again worded in the most judgemental way, surely Moss-Morris and her colleagues should take some responsiblity for this. They have done their level best to publicise their judgement that we are lazy, scared, deconditioned malingerers who exaggerate what they consider normal healthy mild symptoms and refuse to exercise or work. So naturally we are left with no option to continue to try to work, support families, live normal lives, cover up our suffering, until we drop and are no longer able to do so, at which stage they leap in and change their story from erratic all or nothing to passive disengagement.

And all this based on false perceptions, not by the pwME, but by the clinicians spreading these unfounded falsehoods.

Sorry, that was a bit of a rant. I am fed up with having this old rubbish thrown in our faces again. It's wrong, unevidenced, insulting and very harmful.
 
CFS patients also tend to be hypervigilant to symptom information and to maximize the extent of their symptoms and the consequences of experiencing symptoms.

And yet Michael Sharpe insists that everything a patient says about their symptoms is reliable evidence for their state of health. And the trials rely on that assumption.

Yes, we were here before, a very long time ago now.
 
Utsikt said:
Dundrum, you really have to start being more specific.

‘Stress can cause physical symptoms’ doesn’t tell us anything meaningful.


Are you aware of Wyller’s clonidine study on adolescents with chronic fatigue (I believe it might have been Oxford)?

They chemically surpressed the stress response and the sympathetic nervous system, and the patients in the intervention group actually got slightly worse.

I can’t find the paper, but here is a short report in Norwegian:
Auto translated:

https://forskningsprosjekter.ihelse.net/prosjekt/2012048
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Yes, I'm aware of it. IIRC that drug suppresses the sympathetic response, but in ME/CFS the problem seems more likely to be hypoactive parasympathetic / HPA axis. The benzos work on a completely different way altogether from either.

‘Stress can cause physical symptoms’ doesn’t tell us anything meaningful.
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It does. The point I was making is that a physical symptom doesn't indicate an organic cause.
 
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Trish said:
There is a world of difference between a precipitating factor and a perpetuating factor.

I know of no evidence that stress of any kind perpetuates ME/CFS, nor that stress reduction cures it. I can understand that for some people stress reduction may help to make living with ME/CFS more bearable, but I have seen no clinical evidence that stress is an ongoing causative factor once ME/CFS is triggered.
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Here is a review of perpetuating factors, which are mostly cognitive:

https://www.sciencedirect.com/science/article/abs/pii/S0022399910000632
 
Utsikt said:
What do you base that claim on?
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The study you just posted showing that reducing sympathetic activation doesn't help patients, and the studies showing hypoactivation of the HPA axis and lower HRV (especially after intense exercise...see the study published today by Ruijgt et al.).
 
dundrum said:
Here is a review of perpetuating factors, which are mostly cognitive:

https://www.sciencedirect.com/science/article/abs/pii/S0022399910000632
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That narrative review does not in any way say that perpetuating factors are cognitive. It says that they may be, based on what is essentially a collection of opinions and interpretations of data from psychosomatic researchers and their studies.
Conclusion
Three different cognitive processes may play a role in the perpetuation of CFS symptoms.
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dundrum said:
I think it is a concept that should be further studied in ME/CFS
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Already has been for the last 30 years. It even continues to this day, with exploratory studies that never build on anything. Just pilot study after pilot study.

You are missing decades of history here, arguing for things to happen that have already been done to death.

All of this has already been done, most of it 10x at least. This is no different than arguing for vaccines causing autism and demanding it be studied again, again. It already has, and it's always done the same way: take any random correlation and argue for it. Like 'stress' hormone, which is not a thing. It's been argued to be highly significant, but studies are all over the place, some showing higher, some showing lower.

This has all been done. All of it poorly. This is why we have no patience for what has only become sea-lioning.
 
Eddie said:
We can measure certain chemicals in the blood, check heart rate and blood pressure, the presence of sweating, and conclude that these symptoms probably result from their current stressful situation
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We can check those things, but in reality it's no more useful than the old polygraph. Polygraphs were for a long time asserted to be reliable, because some needle moved. They aren't. Not in the slightest. There are multiple explanations for all of those things, which is exactly the reasoning used to assert that there is nothing wrong with us.
 
Utsikt said:
Dundrum, you really have to start being more specific.

‘Stress can cause physical symptoms’ doesn’t tell us anything meaningful.
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Something that can explain anything, explains nothing.

This idea of any and all symptoms is the point where medicine abandoned science and went all in on superstitious mumbo jumbo. It simply replaced the old divine explanations for everything, shifting the authority inward, to a profession that was barely getting started, and turning it into a traditional belief system.
 
rvallee said:
Already has been for the last 30 years. It even continues to this day, with exploratory studies that never build on anything. Just pilot study after pilot study.

You are missing decades of history here, arguing for things to happen that have already been done to death.

All of this has already been done, most of it 10x at least. This is no different than arguing for vaccines causing autism and demanding it be studied again, again. It already has, and it's always done the same way: take any random correlation and argue for it. Like 'stress' hormone, which is not a thing. It's been argued to be highly significant, but studies are all over the place, some showing higher, some showing lower.

This has all been done. All of it poorly. This is why we have no patience for what has only become sea-lioning.
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It's not like arguing that vaccines cause autism, as that is not based on any evidence. I'm not sure what you mean that "stress hormone is not a thing". Adrenaline and cortisol are the two main stress hormones. It is actually a thing, but not a biomarker in ME/CFS. What does seem to be somewhat consistently found is hypoactivation of the HPA axis, although the difficulty is that it's not possible to measure that directly in humans. Here is a review:

https://pubmed.ncbi.nlm.nih.gov/24959566/
 
Utsikt said:
Do you have a link? Is it this?
https://www.s4me.info/threads/weara...onal-malaise-in-long-covid-2025-ruijgt.43236/
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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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