[This post was originally posted at Hoyden About Town on April 27, 2009.]
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 -------------------------------------------------------------------------------
7 thoughts on “Psychiatrists see reasonable adaptations to CFS, label it “cause” and “maladaptation””
I can’t describe how angry that makes me. I would love to see any of those researchers last 5 minutes in my body, let alone 7 years.
My doctor sent me to be evaluated for depression. The questionaire may be fine for healthy individuals, but not for the chronically ill. They ask about sleep. Well, my sleep is broken, that’s part of my problem. They ask if you’ve given up activities you used to enjoy, but they don’t ask if you’ve replaced them with something else. I’m not hiking anywhere anymore, but I do enjoy video games and blogging. Almost every single question was skewed to make the chronically ill seem pathological.
I walked out.
I completely agree that this study right here is exactly why I have so much trouble believing that they are ever going to figure out CFS – because if all you’re looking for is something to prove that you are right, I am completely at fault for my illness, my own behaviors are to blame 1000%, then, of course, you’re going to find something. And the fact that they can’t see that they have contradicted themselves in their own study, just makes me want to do something really “maladaptive,” like banging my head against this same damn wall for 15 years.
Excellent post, love the new website: am wicked excited about having so many of my favorite bloggers in one place. 🙂
It’s a different verse to the same song, isn’t it?
“We have largely been healthy all our lives
It’s how we made it thru med school and still survive.
We grew up among the smartest kids in the room.
Even now if we don’t know the answer we just assume
That the question you ask is somehow wrong.
It’s not our fault if we don’t have the answer.
Unless your disease is strep throat, tooth decay or cancer
Unless you suffer from something we can test
Your problem is YOUR problem.
Maybe a lack of rest.
Or something you ate.
Or a parent you hate.
Or being picked last for gym.
Or malingering on a whim.
It’s certainly not our lack of knowlege.
For you see we have all been to a very good college
or two or three or four.
And we had an internship and seminars galore.
And everyone we know and see are perfectly well.
Obviously you are making up your petty hell.
Just take a walk and drop the gluten
Accept that you’re crazy and stop disputin’.
Cause we’ve been to Med school and studied for hours
And still have no answer for conditions like yours.”
.-= Coble´s last blog ..Lipstink =-.
I’m guessing that was one of the SPHERE tests, Personal Failure (how odd it feels addressing you that way!) I’ve been meaning to put together a blog post on that for a while now. The shortcomings have been described in the literature, but in my experience the pharmaceutical companies who market the test directly to doctors play them down.
I’m not sure if you’ve heard about this (I checked your Twitter and HAT), but researchers are now saying that there is a virus that may be the cause (or a correlation, but either way, that it’s physical!) of CFS that they have found in 67% of people with CFS in a study compared with 3% of people without CFS.
There are some problems with the article, but if it’s true, maybe this bullshit won’t happen.
Yes, I’ve heard of it, thanks. My thoughts are very similar to rb’s.
Every month or so the media crows that “Someone has Finally Discovered a Biological Basis for CFS for the First Time EVAH!!!. They Weren’t Really Making It Up! Who Knew??!” This has been going on for decades now. I’m not holding my breath for attitudes to suddenly change now.
Oh, I’m definitely not saying they will tomorrow. I was just wondering if you’d seen it because I thought the bits about the actual genetic changes were fascinating. I get plenty of helpful articles from people about my condition, for which there will never be a real “cure,” so I don’t want to be one of those people, and I’m sorry if I was.
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