The pathway from glandular fever to CFS: can the CBT model provide the map?

[oceanblue]

New research form the biopsychosocial fan club:

The pathway from glandular fever to chronic fatigue syndrome: can the cognitive behavioural model provide the map?
by: R. Moss Morris, M. J. Spence, R. Hou

Psychological Medicine First View, 1-9. URL http://dx.doi.org/10.1017/S003329171000139X

Apparently, developing CFS after glandular fever is down to patient attitudes:

Abstract

Background: The cognitive behavioural model of chronic fatigue syndrome (CFS) suggests that the illness is caused through reciprocal interactions between physiology, cognition, emotion and behaviour. The purpose of this study was to investigate whether the psychological factors operationalized in this model could predict the onset of CFS following an acute episode of infectious mononucleosis commonly known as glandular fever (GF).

Method: A total of 246 patients with GF were recruited into this prospective cohort study. Standardized self-report measures of perceived stress, perfectionism, somatization, mood, illness beliefs and behaviour were completed at the time of their acute illness. Follow-up questionnaires determined the incidence of new-onset chronic fatigue (CF) at 3 months and CFS at 6 months post-infection.

Results: Of the participants, 9.4% met the criteria for CF at 3 months and 7.8% met the criteria for CFS at 6 months. Logistic regression revealed that factors proposed to predispose people to CFS including anxiety, depression, somatization and perfectionism were associated with new-onset CFS. Negative illness beliefs including perceiving GF to be a serious, distressing condition, that will last a long time and is uncontrollable, and responding to symptoms in an all-or-nothing behavioural pattern were also significant predictors. All-or-nothing behaviour was the most significant predictor of CFS at 6 months. Perceived stress and consistently limiting activity at the time of GF were not significantly associated with CFS.

Conclusions: The findings from this study provide support for the cognitive behavioural model and a good basis for developing prevention and early intervention strategies for CFS.

An interesting comparinson with the Dubbo Studies, which found that developing CFS was predicted by the severtity of the initial illness rather than psychological factors.

"Enjoy"

 

[Esther12]

It would be interesting to see if they did measure severity of initial onset too.

You'd have thought the the severity of initial illness would be strongly correlate with "perceiving GF to be a serious, distressing condition, that will last a long time and is uncontrollable".


I wonder if they've ever done a study to see what affect promoting the notion that CFS patients are emotionally abnormal somatizers has upon patients? I find it rather stressful trying to stay clear headed while questioning my own sanity. Surely it adds something of a strain to our lives?

I've left this post a bit confused and stream of consciousness as I think it rather illustrates the effect that these kind of studies can have on a fragile mind. I really wonder if anyone's bothered to see how this sort of work affects CFS patients. I can't imagine they care.

ps: I think the idea of studying glandular fever patients at initial onset and then trying to understand what risk factors may lead on to CFS is a more sensible way of doing things though. It could be that the full paper for this has some worthwhile data.

 

[Sean]

I wonder if they've ever done a study to see what affect promoting the notion that CFS patients are emotionally abnormal somatizers has upon patients? I find it rather stressful trying to stay clear headed while questioning my own sanity. Surely it adds something of a strain to our lives?

Bingo!

I will bet there is a bunch of psych literature that looks at what happens to people when you put them under that kind of scrutiny, when their basic sanity is questioned, especially when it is done without much justification and in devious subjective double-bind ways, by so called experts with very serious authority over the subjects. I will also bet the results are not pretty for the ones on the receiving end, independent of their psycho-social-economic-physical status beforehand. And if you are already actually seriously physically ill, the results of that corrosive doubt would be even more devastating.

 

[oceanblue]

It would be interesting to see if they did measure severity of initial onset too.

You'd have thought the the severity of initial illness would be strongly correlate with "perceiving GF to be a serious, distressing condition, that will last a long time and is uncontrollable".

That's a very pertinent point. I might not be able to get hold of this paper before next week but will look more closely (and I agree that this type of study using GF as a model for CFS is potentially a good approach).

Certainly all these strident 'it's all down to patient's psychological problems' papers create a lot of stress, particularly as we then need to understand the papers to see if it's a real finding or just more self-deluded, second-rate science.

It would probably drive me to alcohol abuse if the illness hadn't made me alcohol intolerant.

 

[judderwocky]

That's a very pertinent point. I might not be able to get hold of this paper before next week but will look more closely (and I agree that this type of study using GF as a model for CFS is potentially a good approach).

Certainly all these strident 'it's all down to patient's psychological problems' papers create a lot of stress, particularly as we then need to understand the papers to see if it's a real finding or just more self-deluded, second-rate science.

It would probably drive me to alcohol abuse if the illness hadn't made me alcohol intolerant.

LOL...

These guys are such IDIOTS.

Many of the disorders they are studying... like OCD are now known to be IMMUNE DISORDERS.

They refuse to admit that by studying a group of mentally ill people they are already studying an immune disorder.

They can CURE mice of OCD by giving them a bone marrow translpant and changing their immune profile.

The disorder disappears completely within 3 weeks.

So even if there is a connection to mental disorders... it doesn't even mean that the mental behavior precipitated the illness as they are suggesting.

ONCE AGAIN. Psychology is FAIL SCIENCE. ITS NOT REAL.

CBT is just an attempt to abridge this problem. In a scientific "looking" way.

Real scientists take measurements. THey don't sit around talk and interpret the feelings of bosons when they are around neutrinos. They don't ask electrons why they changed their mind. They measure protein and cell counts. You can't "count" emotions. It doesn't make any hermeneutical sense and a huge chunk of the post-modern philosophical movement, the modern scientific movement, and even ancient materialist philosophies and Buddhist religions would agree with me that emotions become open to interpretation. Trying to quantify this is about as effective as counting sunspots with the naked eye.

Oh and I get they think they have established research tools and models that get them around this. They're just silly mind games... the same kind people would use to prove that the world sat on the back of a turtle, or to prove the existence of fairies. They fit their particular, vaguely humanist conception of cosmology, and the entire personality and life history of the individual are appropriated into it through a series of overly simplistic rituals designed to make the psychologist look as though he has given and or developed insight in the patient.

The only people that are in denial about CBT are the psychologists. There are entire branches of psycholinguists and psychoanalysts and psychologists that are launching these criticisms against psychology themselves! Even they know it! The sad thing is, even their own acknowledge this!

And like most religions, they don't want to actually admit they are a religion. They just keep reiterating their belief that they are right.

Its modern mysticism... which is just Greek mysticism... repackaged for a humanist lifestyle. at best.

**COUGH*** CULT ***COUGH****

 

[Dolphin]

You can't "count" emotions. It doesn't make any hermeneutical sense and a huge chunk of the post-modern philosophical movement, the modern scientific movement, and even ancient materialist philosophies and Buddhist religions would agree with me that emotions become open to interpretation. Trying to quantify this is about as effective as counting sunspots with the naked eye.

I wonder could one say that measuring emotions is a bit like that problem from science (can't remember exact name and details) where can't know the position and velocity of an electron simultaneously (as the act of measuring alters it).

 

[Sean]

Heisenberg's Uncertainty Principle

 

[Dolphin]

Here is the CBT model for the illness which they present in the introduction:

The cognitive behavioural model of CFS provides a
possible explanatory framework for understanding
how an organic insult such as a virus precipitates a
cycle of psychological responses, which mediate between
the acute organic illness and the chronic syndrome
(Wessely et al. 1991; Sharpe et al. 1992; Sharpe,
1997). The model includes predisposing, precipitating
and perpetuating factors (Surawy et al. 1995). Predisposed
people are thought to be high on perfectionism
and prone to distress, basing their self-esteem and the
respect from others on their abilities to live up to certain
high standards. When these people are faced with
precipitating factors which affect their ability to per-form,
such as a combination of excessive stress and an acute
biological illness, their initial reaction is to press on and
keep coping. This behaviour leads to the experience of
ongoing symptoms which may be more closely related to
pushing too hard than to the initial infection. However, in
making sense of the situation, patients attribute the
ongoing symptoms to an infection. The common
response to a physical illness is rest. However, reduced
activity conflicts with achievement orientation and may
result in bursts of activity punctuated by the need to rest
up to recover, known as all-or-nothing behaviour (Spence
et al. 2005), in an attempt to meet expectations. These
periodic bursts of activity inevitably exacerbate
symptoms and result in failure, which further reinforces
the belief that they have a serious, ongoing illness. As
time goes by, e orts to meet previous standards of
achievement are abandoned and patients become
increasingly pre-occupied with their symptoms and
illness. This results in chronic disability and the belief that
one has an on-going incurable illness which is eventually
diagnosed as CFS.

The theoretical basis for this model comes largely
from anecdotal clinical evidence and cross-sectional
and retrospective research (for a review, see Moss-
Morris, 2005). A handful of prospective studies have
shown that psychological distress at the time of the
initial virus and negative illness beliefs are predictors
of post-viral fatigue (Cope et al. 1994; Wessely et al.
1995; Hotopf et al. 1996; Candy et al. 2003; Petersen
et al. 2006). A limitation of these studies is the
selection of a small number of predictors for
investigation and no prospective studies have
investigated all aspects of the model or variables such
as perfectionism and all-or-nothing behaviour.

Using the cognitive behavioural model to guide our
choice of predictor variables, the purpose of this study
was to investigate the role of psychological variables,
alongside a clearly identifiable physiological variable,
GF, in the precipitation of and early perpetuation of
CFS. We chose to look at GF because there is good
evidence that it is a risk factor for the development of
CFS (White et al. 1995; Buchwald et al. 2000; Candy
et al. 2002). We were interested in looking at the contribution
of each cognitive, behavioural and emotional
risk factor individually as well as which of these may
be the most important risk factors. We hypothesized
that cases of CF identified at 3 months and CFS at 6
months post-GF would report higher levels of
depression, anxiety, somatization, negative perfectionism,
perceived stress, negative illness beliefs and
all-or-nothing behaviour at the time of their acute
infection.

 

[Dolphin]

I find their definition of somatisation symptoms questionable:

The baseline questionnaire incorporated questions
about demographics and current and past illness.
These included a checklist of symptoms associated
with GF (sore throat, loss of appetite, weight loss,
headache, fever, swollen glands, fatigue/tiredness,
rash) to determine the severity of the acute illness
and a number of non-specific symptoms (e.g. sore
eyes, loss of strength, dizziness, racing heart beat) as
a measure of general somatization. Specific details
about the acute illness were also gathered, including
the onset, treatment and advice given by the GP.
Questions regarding history of CFS and related disorders,
and serious physical illness were used to ex clude
people from the study.

Given how closely orthostatic symptoms are associated with CFS, it seems symptoms such as racing heart and dizziness shouldn't be seen as evidence of somatisation. Similarly loss of strength.

 

[Dolphin]

CFS is defined using either the Fukuda definition or the Oxford (Sharpe et al., 1991) definition:

Follow-up outcome questionnaire
Participants were sent two follow-up questionnaires
designed to identify those who met diagnostic criteria
for CFS at 3 and 6 months. Patients who met either
the Centers for Disease Control (CDC) (Fukuda et al.
1994) or British criteria (Sharpe et al. 1991) were
considered cases of CFS. As both definitions specify
that CFS should only be diagnosed after fatigue has
been experienced for a minimum of 6 months, we
have labelled people who met the criteria at 3 months,
cases of CF and those at 6 months, cases of CFS.

An initial screening question asked participants if
they were experiencing fatigue or excessive tiredness
so that those without fatigue could omit this section. If
a rmative, participants were asked to rate the severity
of their fatigue and answer a range of questions
derived from the CDC and British criteria for CFS.
Questions included the type of fatigue experienced
(physical or mental), the onset of fatigue (whether
there was a definite start to fatigue and length of time
since onset), the extent of fatigue (proportion of time a
ected by fatigue, and their ability to ignore it), any
moderating e ects experienced (i.e. impact of rest,
excessive exercise) and the impact of fatigue on their
daily activities.

The Oxford criteria basically only require fatigue. It would be interesting to know if the results would be different if they used a different definition (incl. Fukuda only) - maybe some of what they are picking up are people who have developed depression?

 

[Esther12]

Here is the CBT model for the illness which they present in the introduction:

That sounds like a fairly respectable and clear model (although not one that seems to tie terribly well to reality). I'm surprised they were willing to be so honest about it and make claims that allow us to make fairly strong predictions:

"Predisposed people are thought to be high on perfectionism and prone to distress, basing their self-esteem and the respect from others on their abilities to live up to certain high standards."

Did their study mention how many people developed CFS who fulfilled none of these critieria? If there were any, surely that would be a fairly significant blow to the CBT model, and would prevent them from concluding in support of the CBT model.

Something that worries me is that they could just have described the characteristics of those people who are likely to place themselves under greater strain than is normal, and that could increase susceptibility to all manner of illnesses. How clear cut is the association between these traits and CFS? If you don't have HIV, you don't have AIDS. If you don't have any of these traits, can you still have CFS? Are these traits associated will an illness like cancer?

I've not read the paper, but from what I have read of papers similar I'm afraid that I cannot expect much from it.

 

[Dolphin]

ILLNESS PERCEPTION QUESTIONNAIRE (IPQ-R) questions

All the questions of the ILLNESS PERCEPTION QUESTIONNAIRE (IPQ-R) can be seen at the end of:
http://nari.mednwh.unimelb.edu.au/publications/pdf_docs/Pedometers_and_diabetes.pdf
(Appendix 4d, pp. 65-69). Also how it is marked.

 

[Dolphin]

Behavioural Responses to Illness Questionnaire (BRIQ) questions

Behavioural Responses to Illness Questionnaire (BRIQ):
All questions etc at:
http://researchspace.auckland.ac.nz...2/5225/101017S0033291704003484.pdf?sequence=1

This is from the Methods section of the glandular fever paper:

Behavioural measures
The Behavioural Responses to Illness Questionnaire
(BRIQ; Spence et al. 2005) was used in order to
deter-mine the e ect of specific behavioural
responses at the time of acute illness. The limiting
subscale measures the extent to which patients rest
and reduce activity in response to illness. Items
include ‘I have gone to bed during the day’ and ‘I
have avoided my usual activi-ties’. The ‘all-or-nothing’
scale measures a pattern of over-activity and then
rest and includes items such as ‘I have overdone
things, then needed to rest up for a while’ and ‘I have
pushed myself as hard as ever until I cannot push
myself any more’. The all-or-nothing scale has been
shown to be an important predictor of the onset of
irritable bowel syndrome following an episode of food
poisoning (Spence & Moss-Morris, 2007). Cronbach’s
a in this study was 0.87 for the limiting subscale and
0.82 for the all-or-nothing sub-scale, confirming that
the scale has excellent internal reliability.

Glandular Fever=infectious mononucleosis (mono)

 

[Dolphin]

I'm not sure I have the time to think this through but I'm wondering what they really showed in this study.

All-or-nothing was all one is left with after multivariate logistic regression (if it is above 0.05 it is not considered statistically significant although they don't make this clear in the text):

Behavioural Responses to Illness Questionnaire

(Items are scored on the following scale : Not at all, Rarely, Some days, Most days, Every day)

All-or-nothing behaviour

I have overdone things, then needed to rest up for a while
I have pushed myself as hard as ever until I can not push myself any more
I have carried on with things as normal until my body can not cope any longer
I have felt obliged to carry out all my responsibilities, no matter how bad I feel
I have tried to do too much and felt even worse as a result
I find myself rushing to get everything done before I crash

These seem like the sort of things people with CFS might do in the early days when they don't know too much about it and still could have lots of responsibilities (job, demanding course, children, etc.).

ETA: what I'm trying to say is that people with post-exertional malaise might have satisfy the criteria above, but people who were just fatigued might not i.e. they found that people who had "CFS" at 6 months were more likely to have the CFS symptom of post-exertional malaise/payback at the start.

Also, some people might say the opposite of the CBT model, is the listening-to-your-body and pacing yourself model. I'm not sure this has been disproved in this study.

 

[Esther12]

"I have carried on with things as normal until my body can not cope any longer"

Hold on.... my doctor told me to try to carry on with things as normal!!

That's not a sign of an 'all or nothing' mentality, it's a reflection of the widespread belief amongst the medical community that fatigue is the result of an acceptance of sickness behaviors and requires the patient to make the effort to return to health and the fact that many patients are stupid enough to trust them (myself included).

ps: Thanks for providing these exerts.

 

[oceanblue]

I'm not sure I have the time to think this through but I'm wondering what they really showed in this study.

All-or-nothing was all one is left with after multivariate logistic regression

... These seem like the sort of things people with CFS might do in the early days when they don't know too much about it and still could have lots of responsibilities (job, demanding course, children, etc.).

Good point. And I wonder if they had properly validated that all-or-nothing scale?

But even if the finding were true, the raw BRIQ All-or-nothing measure (not the Factor they then created) had an Odds Ratio (OR) of 1.14 for CFS. If I understand things right, that is a tiny effect - especially at they had only 17 'CFS' cases to go on. The authors cite a separate study looking at All-or-nothing attitudes in a similar prospective study of IBS, quoting and OR of 1.09, which again looks small.

Now, if I calculated this right - and I admit am way out of my depth - this study shows an OR of 8:1 for the effect of being female on developing CFS. [16/17 CFS cases female, 126/217 non-cases female]. But if that is vaguely right it suggests that a demographic factor is far more important than any attitude in predicting CFS. However, I may be a non-mathematician going under here...

 

[judderwocky]

I wonder could one say that measuring emotions is a bit like that problem from science (can't remember exact name and details) where can't know the position and velocity of an electron simultaneously (as the act of measuring alters it).

No. I understand why you are saying that, but they are nothing alike.

The heisenberg uncertainty principle is a derivable, provable, mathematical fact. Its more like a defined ratio between certain mathematical variables within quantum.

There is nothing "defined" about emotions. There is nothing in inerently mathematical in their definition or relation to one another. Different cultures call emotions different things, and have often times, different names for different "colors" of emotions.

How many different words for love are there in Greek? There is no way to quantify the meaning or relationships of these "categories" of emotions.

http://en.wikipedia.org/wiki/Uncertainty_principle

contains a list of several ways to derive the formula...

its kind of difficult to explain without the experiments, but it is a physical and measurable phenomena.

 

[oceanblue]

"I have carried on with things as normal until my body can not cope any longer"

Hold on.... my doctor told me to try to carry on with things as normal!!

That's not a sign of an 'all or nothing' mentality, it's a reflection of the widespread belief amongst the medical community that fatigue is the result of an acceptance of sickness behaviors and requires the patient to make the effort to return to health and the fact that many patients are stupid enough to trust them (myself included).

Great point. Actually I've had a relapse following the exact same advice from a full-blown psychiatrist no less, a CFS specialist, who thought listening to your body was a very bad thing indeed.

 

[Dolphin]

No. I understand why you are saying that, but they are nothing alike.

The heisenberg uncertainty principle is a derivable, provable, mathematical fact. Its more like a defined ratio between certain mathematical variables within quantum.

There is nothing "defined" about emotions. There is nothing in inerently mathematical in their definition or relation to one another. Different cultures call emotions different things, and have often times, different names for different "colors" of emotions.

How many different words for love are there in Greek? There is no way to quantify the meaning or relationships of these "categories" of emotions.

http://en.wikipedia.org/wiki/Uncertainty_principle

contains a list of several ways to derive the formula...

its kind of difficult to explain without the experiments, but it is a physical and measurable phenomena.

I suppose I should have made clearer that I wasn't summarising what you were saying, just making a point that questionnaires are an indirect way of measuring emotions and the act of filling in a questionnaire might not translate to a state that is being reported. The wiki page for the uncertainty principle looks quite complicated and I think I'll give it a miss. I only got as far as Newtonian physics/mathematical modelling.

But like you say, there can be other problems with the idea of emotions.

Analogies with the physical world are rarely accurate e.g. momentum in the physical world has a very specific meaning and follows certain laws. But in lay speech, one might say something has momentum e.g. a candidate's election campaign has momentum, but it doesn't necessarily follow any of the same laws. Analogies are using inaccurate - with momentum, it can take a lot to stop something with a lot of mass which has some velocity but things in the non-physical world which have "momentum" could come to a stop with something small, etc.

 

[Dolphin]

But even if the finding were true, the raw BRIQ All-or-nothing measure (not the Factor they then created) had an Odds Ratio (OR) of 1.14 for CFS. If I understand things right, that is a tiny effect - especially at they had only 17 'CFS' cases to go on. The authors cite a separate study looking at All-or-nothing attitudes in a similar prospective study of IBS, quoting and OR of 1.09, which again looks small.

Now, if I calculated this right - and I admit am way out of my depth - this study shows an OR of 8:1 for the effect of being female on developing CFS. [16/17 CFS cases female, 126/217 non-cases female]. But if that is vaguely right it suggests that a demographic factor is far more important than any attitude in predicting CFS. However, I may be a non-mathematician going under here...

Table 4 (Table 4. Multivariate logistic regression analyses of the psychological factor scores on CF/CFS outcome at 3 and 6 months fol lowing GF) might be more useful to look at.

The odds ratio for gender (for CFS at 6 months) is 6.46 (95% C.I. 0.77-54.10) p=0.09.
For All-or-nothing behaviour it's 1.92 (1.07-3.39) p=0.03*

What they say, that gender isn't an issue, seems to me to be debatable. It looks numerically that it is likely to be a big factor (female gender increases risk a lot) but they don't have a big enough sample to be sure. While they can be more sure All-or-nothing behaviour is a factor but it's not as big a factor (odds ratio is lower so less than double the risk).