Personality studies of the chronically ill may do more harm than good.

In their recent article, Nater et al. [1] compare the answers on two personality questionnaires [2,3] that were provided by Chronic Fatigue Syndrome (CFS) patients, controls with disruptive but less serious ‘insufficient fatigue’ (ISF) and healthy controls. Perhaps unsurprisingly, the two groups suffering from health problems agreed to statements such as “I expect other people to do favors for me even though I do not usually do favors for them” at a greater rate than healthy controls. This led to the diagnosis of personality disorders in 29% of CFS patients, 28% of ISF patients and 7% of well controls.

The impact that living with a chronic illness has upon an individual’s life could alter their assessments of themselves in many different ways. For example, Nater et al. report that a quarter of CFS patients are unemployed or on disability benefit; this might be expected to increase the likelihood of patients agreeing to the statement “I see myself as thrifty, but others see me as being cheap”[2], without being an indication of a greater prevalence of obsessive-compulsive personalities. The use of personality questionnaires to diagnose personality disorders amongst the chronically ill may lead to misleading results if such confounding factors cannot be accounted for. Nater et al. note (p316), “studies comparing CFS to other chronic illnesses, such as multiple sclerosis, did not find differences regarding the prevalence of comorbid personality disorders” and this result would seem to be repeated again here.

Coverage of Nater et al.’s work [4,5,6] followed a news release titled ‘Is Chronic Fatigue Syndrome A Personality Disorder?’[7], and promoted the notion that those suffering from CFS are liable to be suffering from severe personality abnormalities related to non-compliance with treatment suggestions. Given the design of the study and the manner of its presentation, such coverage is not surprising. While Nater et al. focus upon the possibility that it is CFS patients’ personalities which lead to a damaging lack of trust and confidence in health care professionals, it could be argued that these are reasonable responses to the negative stereotyping and stigmatization which patients already face [8,9,10], and which papers that casually emphasise the role maladaptive personality features may play in CFS are likely to worsen. Such problems are especially worrying given the concerns raised about the broad criteria the researchers used to define CFS, which appear to lack both sensitivity and specificity. [11,12]

While Nater et al. note many of the limitations of their work, and chose to include a control group suffering with health problems which was absent from their initial presentation of results [13], great care needs to be taken with the design and presentation of such studies in order to ensure meaningful results are gathered, and that they are not used to legitimise the crude profiling and stereotyping of patients. Otherwise, patients agreeing with the statement “Others will use what I tell them against me” [2] might be displaying prescience, not paranoia.

[1] Nater UM, Jones JF, Lin JM, Maloney E, Reeves WC, Heim C: Personality features and personality disorders in chronic fatigue syndrome: a population-based study. Psychotherapy and Psychosomatics. 2010;79(5):312-8

[2] Hyler SE: Personality Diagnostic Questionnaire-4+ (PDQ-4+). New York, New York State Psychiatric Institute, 1994.

[3] American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders, ed 4, text rev (DSM-IV-TR). Washington, American Psychiatric Association, 2000.

[4]‘Is Chronic Fatigue Syndrome A Personality Disorder?’ rehacare: http://www.rehacare.com/cipp/md_rehacare/custom/pub/content,oid,27211/lang,2/ticket,g_u_e_s_t/~/Is_Chronic_Fatigue_Syndrome_A_Personality_Disorder.html Accessed November 21, 2010

[5] ‘Is Chronic Fatigue Syndrome A Personality Disorder?’ Medical News Today: http://www.medicalnewstoday.com/articles/207006.php Accessed November 21, 2010

[6] ‘Tired and Tested’, Metro. November 9, 2010:27 http://e-edition.metro.co.uk/2010/11/09/ Accessed November 21, 2010

[7]‘Is Chronic Fatigue Syndrome A Personality Disorder?’ Journal of Psychotherapy and Psychosomatics, AlphaGalileo: http://www.alphagalileo.org/ViewItem.aspx?ItemId=89186&CultureCode=en Accessed November 21, 2010

[8] Drachler Mde L, Leite JC, Hooper L, Hong CS, Pheby D, Nacul L, Lacerda E, Campion P, Killett A, McArthur M, Poland F. The expressed needs of people with chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review. BMC Public Health. 2009 Dec 11;9:458.

[9] Patients with chronic fatigue syndrome are not treated properly BMJ. 2004 June 5; 328(7452): BMJ doi: 10.1136/bmj.328.7452.0-e

http://www.bmj.com/content/328/7452/0.6.full. Accessed November 21, 2010

[10] Newton JL, Jones DEJ. ‘Making sense of fatigue’ Occupational Medicine 2010; 60(5): 326-329

[11] Kindlon T. Criteria used to define chronic fatigue syndrome questioned. Psychosom Med. 2010;72:506-7 [12] Jason LA, Evans M, Brown A, Brown M, Porter N, Hunnell J, Anderson V, Lerch A. (2010). Sensitivity and specificity of the CDC empirical chronic fatigue syndrome case definition. Psychology. 2010;1:9-16.

[13] Nater UM, Jones JF, Lin JM, Maloney E, Reeves WC: Abstract 1747: The Role of Personality in Chronic Fatigue Syndrome: Findings from a Population-Based Study. 2009. American Psychosomatic Society 67th Annual Meeting.

You may find this recent article by Elinor Stein (an MD and a psychiatrist) helpful:
http://www.psychiatrictimes.com/print/article/10168/2123915

best,
Willow

Most people with ME or CFS do recognize that people with psychiatric-classified disease have real, biomedical diseases and suffer unfair stigma.

The “mental illness” that we say is not being treated as a real illness is the “you just need to get out more” stigma kind, as if we had cabin fever or boredom or some such thing that truly isn’t a biomedical disease. Sadly, this happens to real psychiatric-classified patients, too, I know (thus unfairly treating these diseases as if unreal also). Psychiatric-classified diseases have also gotten the short end of the stick because only a limited scope of research has been done and these diseases remain only partially treatable.

Another problem we face is that lots of people with fatigue from various undiagnosed causes, from lupus to major depressive disorder, are lumped together and called CFS patients and studied as if that would tell us something about CFS. Because MDD also doesn’t have an approved diagnostic marker, and because we get so much “must be depression” (when many of us aren’t depressed, but rather have muscle weakness and orthostatic intolerance and other such things that make activity difficult), and because of the obvious bias of certain investigators, it’s easy for some to assume there could be lots of MDD patients in the “CFS” groups when we know the researchers aren’t taking care to diagnose carefully. It’s not that MDD isn’t important–it is, and needs to be studied more thoroughly than it has so far–but studying MDD should be done to learn about MDD, not to learn about ME/CFS. Obviously (though it doesn’t seem so obvious to everyone, looking at how research is being done) we need to study ME and CFS patients to learn about ME and CFS.

all the best,
Willow

CFS sufferers (I was one) are passing the cruelty done to them by CFS-deniers or CFS=psych. contingent, by doing to the mentally ill what has been done to them.

You ask for compassion, yes you deserve it, but please give it to others who suffer too.

Your words are saying one thing. The Title of this article, on the other hand “The Personality of Chronic Fatigue” is saying something entirely different.

Are you suggesting that brain lesions (similar to those of AIDS patients) are caused by simply believing that you are ill? How extraordinary. I am a strong believer in the power of the mind but there is a limit to believability.

You have cited one case. Let me cite my own case. I was physically and mentally healthy – never had a day off work from a job that was wonderfully rewarding and kept me both physically and mentally active – when I was laid up in bed for 4 days – yes, 4 days, no deconditioning there then, with a mild flu-like illness, from which I recovered and returned immediatly to work.

In the following weeks i began to develop symptoms I had never before experienced, such as extreme muscle weakness, muscle aches, dizziness, sensitivity to light, noise and fumes and physical exhaustion unrelated to the level (my usual level) of physical and mental activity, which I now know to be called post-exertional malaise. I made light of these symptoms – laughed them off and did not seek medical advice until they had persited for several weeks, during which time I continued to work full-time, but had had to stop all out-of-work-hours activities, needing to sleep and rest, neither of which alleviated the symtoms.

The GP told me it sounded as though I had Post-Viral Fatigue Syndrome and that it would work its way out of my system in about a year. I believed this and continued to do as much as possible in the belief that it was just a matter of time before I resumed normal health and functioning.

That was 19 years ago.

Trust me, if severity of symptoms was simply a matter of belief, i would still be working full-time at a job I love, with an active social life and my usual exercise routine, instead of ill-health retired for 6 years, housebound for the past 2.

Go elsewhere with your home spun housewives tales.