There’s a whole industry that involves measuring the survival techniques and truths of people with CFS, then pointing the finger at them for causing their own illness with their Scientifically! Proven! personality “deficits”.
Here’s the latest product of that industry. They took 38 Belgians with CFS, all non-pregnant non-depressed women, diagnosed using CDC definitions (which are very non-specific) and attending a hospital outpatient clinic for CFS. The fact that they’re attending a hospital suggests to me that these are women with moderately severe CFS, unlikely to be mild, unlikely to be housebound.
They were compared to 42 “healthy female volunteers”, recruited “via the hospital staff”, we know not how. They then were all run through a self-administered personality questionnaire. The “controls” were matched only for age and education, not for, say, poverty.
The Discussion section is a triumph of scientific inconsistency, contradiction, and interpreting the results whichever way makes the PWCFS look the worst. I haven’t read anything this intellectually dishonest in quite a while. (Though a quick flick through the The Academy of Psychosomatic Medicine’s annals might quickly put paid to that.)
This study shows that in the eyes of the psychosomatic True Believers, no matter how you react to your illness, you are wrong.
Use of the Temperament and Character Inventory (TCI) for assessment of personality in Chronic Fatigue Syndrome
Psychosomatics Vol. 50, #2, pp. 147-154
Date: March/April 2009
Elise Van Campen et al
The aim of this study was to examine the association between CFS and personality traits measured with the TCI self-report questionnaire. The main findings are that CFS patients scored higher on Harm-Avoidance and Persistence, and lower on Self-Directedness compared with healthy-controls.
The elevated Harm-Avoidance scores suggest that CFS patients tend to be more cautious, careful, fearful, insecure, or pessimistic, even in situations that do not worry other people.9
In situations that don’t worry volunteers with no illness, you mean. Sick people who have experienced over and over again trouble getting back to their car after an outing, sudden exhaustion meaning they have to lie down right away in a place they can’t lie down, pain crescendos that need immediate attention, people who have had to stop paid work and have seen their friends peel away one by one and their life savings disappear, people who have had to fight tooth and nail for disability payments and accommodations, people who scrimp every month to afford their medication: these people tend to be a bit careful in planning their activities, and overall feel a little less optimistic that life is coming up roses for them.
The higher levels of the subscales Anticipatory Worry and Pessimism and Fatigability and Asthenia explain more specifically the elevated scores on the Harm-Avoidance scale. The present finding of increased Harm-Avoidance in CFS is consistent with the results of Jiang and colleagues.13 Furthermore, Christodoulou et al.12 also found increased levels of Harm-Avoidance in CFS; however no elevated score on the subscale Shyness with Strangers was found in the present study.
There are no surprises here, are there? People with CFS scored around 6.4 on Anticipatory Worry compared with 4.4 for normals. I would have expected higher, actually, given how much PWCFS have to forward-look and arrange their lives to keep on functioning.
Anticipatory Worry is a functional adaptation in people who have to pace themselves in order to keep a modicum of physical stability. It is a component of listening to your body and adjusting your activities and expectations in a reasonable way.
The higher score of CFS patients on the Fatigability subscale was expected, since significant fatigue is the cardinal symptom of CFS.
SotBO (Statement of the Bleeding Obvious). In fact, the difference in Fatiguability was by far the biggest influence on the overall Harm-Avoidance scale differential.
Only later in a brief note about study weaknesses do the authors admit: “Harm-Avoidance scores, for instance, may be influenced by chronic diseases.”, and concede “this study lacks a comparison with any other chronic illness”. Noooooo. Really?
The elevated scores on the Anticipatory Worry and Pessimism subscale suggest that CFS patients tend to anticipate harm and failure and tend to have difficulties in getting over humiliating and embarrassing experiences.9
CFS patients who are quite sick anticipate harm and failure. Perhaps because they’ve experience harm and failure over and over and over again. This is called “being in touch with reality”. If PWCFS had normal scores for optimism and happy-go-luckiness and go-out-and-have-a-go-no-matter-what-the-cost, you’d be pathologising them for not being in touch with the realities of their illness, and for having unrealistic expectations.
Contrasting with results of other studies,12,13 these CFS patients had higher scores on Persistence than did the healthy-control subjects. Despite the lack of an exhaustive, specific genetic and neuroanatomical base, phenotypic factor-analysis shows that the Persistence factor is a fairly distinct temperament dimension of personality.10 On the other hand, there are doubts about the internal consistency of the Persistence scale.20
The increased score on Persistence suggest that CFS persons tend to be industrious, hard-working, and stable, despite frustration and fatigue. They tend to perceive frustration and fatigue as a personal challenge. However, when contingencies change rapidly, persistence becomes a mal-adaptive behavioral strategy.9 CFS sufferers have been described as “workaholic,” Type A-like,” “unable to set limits on demands of others,” and “high achievers.”27,28 It appears that in top competitors, overtraining can be a precipitating factor in developing CFS,29 and a premorbid “overactive” lifestyle frequently precedes the onset of illness in CFS patients.28,30
And…. snap. There it is. Find a positive characteristic, the stubbornness and persistence that PWCFS have had to develop in order to cope with their lives, and point the finger. How dare they tend to be hard-working! They brought this on themselves! How dare they be stable in the face of frustration and fatigue!
Note that these researchers did not measure personality traits before illness, only after. They have no idea what these people would have measured before they got sick.
Consistent with these findings, exaggerated persistence may predispose to CFS. In the long run, maladaptive persistence may lead to physical overburdening by a negligent attitude toward the needs of the body, musculoskeletal overuse or strain, and/or sleep deprivation. Overburdening by physical and emotional stressors may, in susceptible individuals, lead to neuroendocrine and immunological dysfunction, paving the way for various stress-related disorders, including CFS.31
Aha, so PWCFS should listen to their bodies and adjust their activities and expectations in a reasonable way? Didn’t we just blame them for doing just that? I can’t keep up.
A tendency to exceed physical limits (in work or sports) to support reward can be a way of coping in order to maintain self-esteem. A focus of psychotherapy, therefore, could be to help patients to better recognize and respect their limits and substitute their previous “overactive” lifestyle with a more balanced activity/rest schema.
You just told us that PWCFS who do that score an excess in Harm Avoidance, and that this makes them Broken. Make up your damn mind.
These therapeutic strategies may enable CFS patients to reduce chronic stress by making more realistic and priority-based life choices, learning more adequate ways of dealing with negative life events and distressing emotions, basing their self-esteem not solely on achievement-oriented activities, working less obsessively and perfectionistically, responding more assertively to the others’ demands and expectations, and expressing their own needs more directly and explicitly.30
Well, we NEVER would have thought of that on our own. Thank goodness we have the Academy of Psychosomatic Medicine to tell us poor self-deluded chumps how to manage our lives.
CFS patients displayed a reduced Self-Directedness, as compared with healthy control subjects, although the levels of significance for Self-Directedness did not withstand Bonferroni correction for multiple testing. Nan Jiang and colleagues13 also reported a negative correlation between Self-Directedness and CFS. The subscales 1 (Responsibility versus Blaming) and 5 (Congruent Second-Nature versus Bad Habits) more effectively explain the decreased Self-Directedness score.
Individuals who score low on the Responsibility subscale (Subscale 1) tend to blame other people and external circumstances for what is happening to them. They feel that their attitudes, behavior, and choices are determined by influences outside their control or against their will.9
…because they often are. I can’t just make a Choice to go skiing next month. I know that’s not going to happen. This choice is determined by influences outside my control. There’s that whole unspoken Accepting That Reality Is Real subscale, on which I seem to score quite high.
Individuals who score high on the Congruent Second-Nature versus Bad Habits subscale (Subscale 5) have developed a spectrum of goal-congruent good habits, so that they automatically act in accord with their long-term values and goals.9 This is achieved gradually, as a result of self-discipline, but eventually becomes automatic (“second-nature”). The low scores on this subscale in the CFS group suggest that CFS patients experience themselves as individuals who manifest habits that are inconsistent with and make it hard for them to accomplish worthwhile goals.9 Van Houdenhove33 suggested that CFS patients suffer from a fundamental discrepancy between what they want to do and that what they are able to do. Unrealistic goals may explain this fundamental imbalance.
This is around the point at which my head met my desk. There’s a discrepancy between what I want to do and what I’m able to do? NO REALLY TELL ME AGAIN. I can’t get enough of that shit.
Shorter Van Campen: People with CFS worry about what’s going to happen to them, avoid activities that harm them, and set their sights too low. This is maladaptive. People with CFS also don’t worry enough about what’s going to happen to them, persistently engage in activities that harm them, and set their sights unrealistically high. This is maladaptive.
Both of these sets of maladaptive traits, obviously, are causing and perpetuating their illnesses. We psychotherapists can work on this. See me every week for the rest of your life. Ka-ching.
Here are the data, in case you want a peek yourself.
------------------------------------------------------------------------------- TCI Dimension CFS Patients Control Subjects p (n=38) (n=42) ------------------------------------------------------------------------------- Novelty-Seeking 17.87 (4.46) 18.29 (5.72) 0.382 Harm-Avoidance 22.89 (6.07) 14.93 (6.23) 0.001 Subscale 1: 6.45 (2.09) 4.38 (2.50) 0.001 Anticipatory Worry Subscale 2: Fear of 4.95 (1.68) 4.24 (1.82) 0.092 Uncertainty Subscale 3: Shyness With 4.24 (2.42) 3.36 (2.06) 0.104 Strangers Subscale 4: Fatigability/ 7.26 (2.11) 2.95 (1.85) 0.001 Asthenia Reward-Dependence 18.84 (3.34) 18.62 (3.39) 0.735 Persistence 5.45 (1.54) 3.67 (1.82) 0.001 Self-Directedness 31.29 (7.12) 34.60 (5.47) 0.028 Subscale 1: Responsibility 5.61 (2.14) 6.57 (1.71) 0.033 vs. Blame Subscale 2: Puposefulness 5.82 (1.83) 6.21 (1.41) 0.392 Subscale 3: Resourcefulness 3.55 (1.48) 3.90 (1.17) 0.379 Subscale 4: Self-Acceptance 8.11 (2.17) 8.26 (1.94) 0.796 Subscale 5: Congruent 8.21 (2.58) 9.64 (1.94) 0.007 Second-Nature Cooperativeness 35.13 (4.87) 35.64 (5.16) 0.422 Self-Transcendence 10.03 (6.17) 10.26 (6.47) 0.965 -------------------------------------------------------------------------------
Categories: Science, social justice
Head, meet desk.
annaham’s last blog post..I Can’t Be More Articulate Than…
Yeah, what annaham said.
Argh! The stupidity! It burns! I feeling stupidest for have reading that.
It’s amazing how healthy people so often have such a hard time understanding sick people. I do not suffer from CFS but from something that is psychological and all too likely to be chronic – I betcha, if I go to social gatherings and my issues are triggered by it I’d be maladapted and if I stay away from people and thus remain asocial but comfortable I’d also be maladapted.
Geez, people with chronic illnesses of one kind or the other will obviously adapt their lives to their illness so life will be tolerable and manageable. But at the same time we also all have hopes and dreams and so sometimes we will push ourselves – just a little – and take some risks in order to actually try and fulfill just a tiny fraction of those dreams – just once in a while. Is that really so strange?
Wow… what you just took apart there is such an obvious self-contradiction that even laypersons ought to be able to see that. Next time I need a psychiatrist I think I’ll just go ask my neighbour instead – chances are she’ll understand more than a trained professional it seems.
Oh Lauredhel, you must be livid. Well, I can see you’re livid, obviously. I mean, you have greater than usual reason to be livid.
Unrealistic goals… hmm. When you have a variable fatigue condition (which makes it impossible to predict what state you’re going to be in after an hour, let alone a week) how exactly can you tell WHAT goals are going to be friggin’ realistic longer term?
I don’t know if I can maintain lividity all the time – I mean, we’re soaking in this. It’s _everywhere_. But I can hold forth about it in public, and summon my hordes of lividity. Fly, minions, fly!
[eta: Not “minions” as in “below me”, obv. But there’s no good dramatic movie-ish quote for “allies”. Is there?]
I don’t mind being a minion. I mean, not if you’re the minion-leader! 😀
ARG! ARG! This reminds me so much of the conversations I’ve had with “friends” about Don. If he doesn’t go out, he’s anti-social. If he takes his drugs to go out, he’s stoned, and it’s more difficult to have a conversation with him. Going to visit Don is difficult because his house is messy because of his energy-budget. Thus, Don is a difficult friend to have. Obviously.
Damned if you do, damned if you don’t.
It’s incredible to watch the mental twisting, the oh so obvious effort to find something in this data-point or that one that explains why these people are only hurting themselves. They couldn’t be logical and realistic people, reacting reasonably to factors they cannot control. No, they are whiners and complainers, silly old biddies who just don’t know how to deal with life (implication: Like We Do).
Honestly, I definitely see an element of the medical establishment’s lack of trust in women here. They just can’t bring themselves to acknowledge that women’s complaints might have basis in reality. They must struggle to find some way to dismiss women’s explanations of their life and impose their very own special jargon-filled Medical explanation which is obviously far more credible.
Holy freaking god.
I somehow had imagined that skewed, bigoted research like this would at least be internally consistent. Clearly I set my expectations too high.
“CFS sufferers have been described as “workaholic,” Type A-like,” “unable to set limits on demands of others,” and “high achievers.”27,28 ”
I’d be interested to know what these references are. Who described these PWCFS that way? Was it a study, or just someone’s opinion?
I also wonder if Persistence might be high simply in the PWCFS they were able to involve in the study compared to PwithoutCFS.
Someone who committed to participate in the study but encountered difficulties completing it would be likely to drop out unless they have a high Persistence score. PWCFS are more likely to encounter difficulty in completing the study. So the PWCFS that participated may be selected for those with higher Persistence.
Ah thankyou for your really insightful analysis of this study and how its findings are worded. Sometimes I have difficulty with reading this sort of thing, as it pushes my guilt buttons for still having the damn illness after all this time.
<blockquote cite=”Van Houdenhove33 suggested that CFS patients suffer from a fundamental discrepancy between what they want to do and that what they are able to do. Unrealistic goals may explain this fundamental imbalance.”
Of course. Because having a chronic illness that affects what you can and cannot do has nothing whatsoever to do with “this fundamental imbalance.”
Holy epic fail.