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

Hutan

Hutan

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2009 study
https://www.tandfonline.com/doi/abs/10.1080/09638230500136548
Rona Moss-Morris

Abstract
Chronic fatigue syndrome (CFS) is an illness characterized by disabling fatigue of at least 6 months duration. The purpose of this article is to review the empirical literature on the role of illness and symptom perceptions and coping in CFS. The studies reviewed provide good support for the cognitive behavioural formulation of CFS.

There is evidence that people who go on to develop post viral chronic fatigue have a tendency to label a wide range of everyday symptoms as physical in nature, negative beliefs about their experience of the illness and an all-or-nothing coping response. There is also evidence that people who have had CFS for some time, attribute a wide range of symptoms to their condition, believe the illness is largely physical in origin, and has very serious consequences.

CFS patients also tend to be hypervigilant to symptom information and to maximize the extent of their symptoms and the consequences of experiencing symptoms. 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.

The implications of these findings for treatment are discussed together with the directions for future research.


paywall, I think
Edited to add: SciHub
 
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The thing that Rona seems to miss from that abstract is that if someone is actually suffering from a debilitating physical illness, it would not be at all surprising if they attribute their symptoms to a physical cause and say that it is not pleasant. And CBT would be less likely to sway them into saying that they are well.

Someone suffering from a debilitating physical illness but who is not believed is likely to be paying close attention to their symptoms in order to find the clue that will allow them or their doctors to find out what is wrong with them.

The reported characteristics fit either scenario (real physical illness or hypochondriac exaggeration). The abstract of this paper at least is not science, it is propaganda.

CBT to correct false-illness beliefs has since been found to be of no use in ME/CFS, with the studies that Moss-Morris mentions found to have the problems that all of those studies that have since been labelled as low quality have. So, time has not been kind to this paper. I think it will become even more obvious with time that this paper was prejudiced nonsense.
 
Hutan said:
The thing that Rona seems to miss from that abstract is that if someone is actually suffering from a debilitating physical illness, it would not be at all surprising if they attribute their symptoms to a physical cause and say that it is not pleasant. And CBT would be less likely to sway them into saying that they are well.

Someone suffering from a debilitating physical illness but who is not believed is likely to be paying close attention to their symptoms in order to find the clue that will allow them or their doctors to find out what is wrong with them.

The reported characteristics fit either scenario (real physical illness or hypochondriac exaggeration). The abstract of this paper at least is not science, it is propaganda.

CBT to correct false-illness beliefs has since been found to be of no use in ME/CFS, with the studies that Moss-Morris mentions found to have the problems that all of those studies that have since been labelled as low quality have. So, time has not been kind to this paper. I think it will become even more obvious with time that this paper was prejudiced nonsense.
Click to expand...

I think you're missing the point that patients don't know what is happening in their bodies. Stress and infections, for example, can cause very similar physical symptoms. In the case of an infection the symptoms are mostly produced by the body itself.
 
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.
Click to expand...
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.
Click to expand...
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.
 
hibiscuswahine said:
I have not heard of a mainstream psychological therapy that advises their clients to say they are safe, in their mind, and this "retrains" their limbic system to stop symptoms
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Treatment for severe phobias would probably be the closest to this? The fear response can be quite intense in some cases, certainly a lot of autonomic response: shaking, sweating, dizziness, tachycardia, and so on.

Do you know the state of research in this? Basically this should be the gold standard they can refer to, it certainly should involve the same ideas, techniques, and assessment? I mean if it's all about fears, surely phobias must be the 'ground truth' process here. But I don't think I've noticed any of this yet, at least not on the forum.
 
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