• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Clements Sharpe Hawton 1996 CFS: A QUALITATIVE INVESTIGATION OF PATIENTS' BELIEFS ABOUT THE ILLNESS

Messages
13,774
Nothing important.

Was just reading this old paper, and thought that I'd pull out some quotes in case anyone is interested.

Abstract--The chronic fatigue syndrome is a disabling chronic condition of uncertain cause. Previous studies have found that patients seen in hospital clinics with the syndrome often strongly believe that their illness is physical in nature and minimize the role of psychological and social factors. There is also evidence that patients cope by avoiding activity. However, almost all of these studies have assessed illness beliefs only by questionnaire. The aim of this study was to explore the nature and origin of illness beliefs in more detail using in-depth interviews and a qualitative analysis of patient responses. Sixty-six consecutive referrals meeting Oxford criteria for chronic fatigue syndrome were recruited. Analysis of responses indicated that, whereas the most commonly described explanation for the illness was a physical one, more than half the patients also believed "stress" had played a role. Patients believed that they could partially control the symptoms by reducing activity but felt helpless to influence the physical disease process and hence the course of the illness. Patients reported that they had arrived at these beliefs about the illness after prolonged reflection on their own experience combined with the reading of media reports, self-help books, and patient group literature. The views of health professionals played a relatively small role. There is potentially a considerable opportunity to help patients arrive at a wider and more enabling explanation of their illness when they first present to primary care. © 1997

Physical attribution

The finding that patients make predominantly physical illness attributions is in
keeping with results from previous hospital-based studies using quantitative methods
[4-10]. Why is this finding of interest? First, the attributions of patients are different
from those of many of their doctors, and this discrepancy is a potential cause
of discord in the doctor-patient relationship [19]. Second, it has been found to be
predictive of a poor outcome [5, 11-13]. The reasons for this association remain unclear.
It may be that patients are correct in placing a strong emphasis on the physiological
component of their illness, although the wide range of biochemical and immunological
measures assessed do not support this interpretation [13]. It is also
possible that a strong physical belief acts as a marker for psychological processes,
such as specific personality traits, but there is as yet no good evidence to support
this idea. Finally the attribution itself may perpetuate illness by encouraging certain
ways of thinking about and responding to symptoms. This possibility is elaborated
below.

Complex causation

Despite the predominantly physical attribution almost half of the sample studied
believed that psychosocial stressors had played a role in the etiology of their illness.
This finding supports previous observations from unstructured inquiries [10, 20] and
implies that a simple physical versus psychological dichotomy used in some previous
questionnaires [7] is an inadequate reflection of patients' illness beliefs. It also offers
potential common ground for discussions between doctor and patient.

The cognitive behavioral model of CFS
The findings of this study are broadly consistent with the cognitive behavioral
model of CFS [25]. This model hypothesizes that CFS is perpetuated by a belief in
physical disease and that this physical attribution inhibits recovery by encouraging
the patient to make certain predictions. First, the patient may only regard passive
physical illness-oriented coping strategies as relevant. Second, the patient may interpret
activity-induced increases in symptoms as heralding a worsening of the illness
[26]. Third, it may encourage the patient to predict that nothing they do will
make any difference [27]. The consequence is that symptoms persist, predictions are
confirmed, and a vicious cycle is completed. Further tests of this model are required,
but it has already led to a new approach to treatment [25, 28]. Cognitive behavior
therapy, which focuses on broadening the patient's illness model so as to emphasize
control and reversibility, is associated with clinical improvement [29].
Emphasising control and reversibility, in the absence of evidence of control and reversibility for a patient's condition, is a bit repulsive.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Stress and psychogenesis
It was of interest that, despite the acknowledgment of the role of "stress," none of the patients mentioned psychological factors other than to express hostility to the
idea that such factors were relevant to their illness. Thus, patients rejected psychogenesis, a concept which is seemingly more readily accepted by patients who present
with depression [7]. This apparent contradiction between an acceptance of "stress" and a rejection of psychogenesis emphasizes the significance that certain ideas and
words may carry. Stress-induced illness is commonly seen as blameless, whereas labeling an illness as psychogenic may raise doubts about both the reality of the illness
and even the character of the sufferer [21]. Care in the choice of terms will be important both in the measures used by future quantitative studies of illness belief

The authors seem to be unaware of the difference between a complex set of bio-psycho-social events that may increase risk of developing a disease and maintenance of that disease. Suggesting that stress may have led to suppression of the immune system and perhaps increased severity of a viral illness is quite plausible. However, suggesting that stress is a primary maintaining factor is likely a mistake, when biological measures of psychological stress do not support this assertion.

Ironically, the study they cite (Lloyd/Hickie) that apparently disproves immunological effects didn't actually measure many immunological parameters and also states that CBT was ineffective for the patients in that study!
 
Messages
13,774
Thanks for the additional details SL, I thought the spin was amusing already.

Also 'stress' is a tricky one to define. Having a virus can be seen as a stress. Being depressed, having a genetic disorder, getting shot... any bad thing can be described as a stress, and it's not surprising that when people have 'bad things' this tends to be unhelpful for their health. Given that CFS is defined with somewhat arbitrary cut-offs and subjective measures, saying that 'stress' is a risk factor for CFS is almost a truism - but this provides us with very little information about the nature and cause of people's disability. I would have thought that, even if only to a minor degree, 'stress' would be a risk factor for all subjectively defined conditions.
 

Enid

Senior Member
Messages
3,309
Location
UK
"Beliefs" about illness - who are they trying to convince it's just all in mind still - as to stress it, well apart from the worry in meeting the blank faces of docs when tests reveal pathologies (high intense spots in the MRI brain scan) etc. and passings out who could blame us.

They should try it - unable to stand, think, heart racings, passings out, locked in, bowels just part of GI problems, polio symptoms, appearance of chicken pox - "beliefs" is utter nonesense. Even my Consultant Neurologist viewing all still sits on all his test abnormalities findings ready to release when Myalgic Encephalomyelits is better understood (viral he thought).