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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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"Chronic Fatigue and Personality: A Twin Study of Causal Pathways and Shared Liabilities" (incl CFS)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jan 30, 2013.

  1. Dolphin

    Dolphin Senior Member

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    Abstract: http://www.springer.com/medicine/journal/12160

    If one clicks "look inside" one can see two pages, although it's just the introduction.

    The 54 references can be seen at: http://link.springer.com/article/10.1007/s12160-012-9463-5 - it includes quite a few on CBT and GET: I would guess they are being plugged, esp. given Dedra Buchwald is involved, although not sure there is research connecting personality with CBT and GET.

    *I've given each sentence its own paragraph
  2. Dolphin

    Dolphin Senior Member

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    This journal takes Letters to the Editor if anyone was so inclined:

    http://www.springer.com/medicine/journal/12160


  3. Dolphin

    Dolphin Senior Member

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    There is also an accompanying editorial, although none of the text is free.

    Here is what one can see for free, for what it's worth:


  4. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    But what is cause and what is effect. Having a fatiguing disease would make a person less extraverted. The nueroendrocrine aspects of ME/CFS can produce emotional instability. They need a study to figure that out?

    When I was going through my psychological phase, my therapist and I discussed the Myers-Briggs scale. I did not actually take the test. We rated me the same on all of the pairs, but one. I then realized that I was rating myself as I had been most of my life, while she was rating me as I was since she had known me. Unfortunately, I cannot remember on which pair we differed.
  5. Valentijn

    Valentijn Activity Level: 3

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    I think this is another problematic questionnaire for ill people. A full version (of an earlier form?) of the questionnaire is at http://www.personalitytest.net/ipip/ipipneo1.htm . Lots of questions about things that assume you have normal cognitive capabilities and are capable of being active.
  6. biophile

    biophile Places I'd rather be.

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    All I want for next Christmas is for research to stop using inappropriate psychometric questionnaires which conflate disease-related complications for evidence of psychopathology while the researchers confuse correlation with causation.

    I must have been too naughty last year because all I wanted for last Christmas was the PACE data on the original definitions of "recovery" and "positive outcome" (which the authors promised when accepting 8 million dollars of public money) and that never appeared under the tree either despite repeated FOI requests from UK citizens.
    Dolphin, SOC, ukxmrv and 1 other person like this.
  7. Valentijn

    Valentijn Activity Level: 3

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    A bit more info from the questionnaire used:
    Extraversion is broken down into the subcategories of friendliness, gregariousness, assertiveness, activity level, excitement seeking, and cheerfulness. Gregariousness (enjoying crowds), activity level, and excitement seeking are likely to be heavily impacted by having ME/CFS.

    Neuroticism is broken down into the subcategories of anxiety, anger, depression, self-consciousness, immoderation, and vulnerability. Self-consciousness can score high if you don't want to be the center of attention, and that as well as vulnerability would likely be impacted by having ME. High scorers in depression are defined to "lack energy and have difficulty initiating activities."

    So yeah. Another questionnaire proving that ME/CFS patients have ME/CFS symptoms :p
    Dolphin and SOC like this.
  8. Daffodil

    Daffodil Senior Member

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    are they linking MS and lupus to personality types too?

    are they total idiots and unaware of all our inflammatory cytokines that are through the roof??

    W T F
    Little Bluestem and Valentijn like this.
  9. MishMash

    MishMash *****

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    Daffodil

    The answer to your question is: yes, doctors think MS patients are emotionally unstable too. (I didn't check for lupus, but i'll bet the answer was yes.)

    BTW "prosody" means when you talk very loudly, appearing to sound upset. People with MS apparently do this.


    J Neuropsychol. 2012 Nov 5. doi: 10.1111/j.1748-6653.2012.02037.x. [Epub ahead of print]
    Perception of affective prosody in patients at an early stage of relapsing-remitting multiple sclerosis.

    The Perception of affective prosody in patients at an early stage of relapsing-remitting multiple sclerosis.
    Kraemer M, Herold M, Uekermann J, Kis B, Daum I, Wiltfang J, Berlit P, Diehl RR, Abdel-Hamid M.
    Source

    Abstract

  10. Dreambirdie

    Dreambirdie work in progress

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    Why don't they analyze these researchers. They sound like NARCISSISTS to me:

    The Diagnostic and Statistical Manual of Mental Disorders fourth edition, DSM IV-TR, a widely used manual for diagnosing mental disorders, defines narcissistic personality disorder (in Axis II Cluster B) as:[1]

    A pervasive pattern of grandiosity (in fantasy or behavior), need for admiration, and lack of empathy, beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) of the following:
    1. Has a grandiose sense of self-importance (e.g., exaggerates achievements and talents, expects to be recognized as superior without commensurate achievements)
    2. Is preoccupied with fantasies of unlimited success, power, brilliance, beauty, or ideal love
    3. Believes that he or she is "special" and unique and can only be understood by, or should associate with, other special or high-status people (or institutions)
    4. Requires excessive admiration
    5. Has a sense of entitlement, i.e., unreasonable expectations of especially favorable treatment or automatic compliance with his or her expectations
    6. Is interpersonally exploitative, i.e., takes advantage of others to achieve his or her own ends
    7. Lacks empathy: is unwilling to recognize or identify with the feelings and needs of others
    8. Is often envious of others or believes others are envious of him or her
    9. Shows arrogant, haughty behavior or attitudes.
    http://en.wikipedia.org/wiki/Narcissistic_personality_disorder
  11. Valentijn

    Valentijn Activity Level: 3

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    Having skimmed the full paper, it involves two groups: chronic fatigue (6 months fatigue) and "CFS-like illness", which seems to be what they're calling CDC CFS. They're waffling a bit on language (CFS-like, used an algorithm based on ...) but seem to be saying that there has to be chronic fatigue plus 4 out of the 8 additional symptoms - so I'm not sure why they aren't just calling it CFS.
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  12. valentinelynx

    valentinelynx Senior Member

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    Perhaps you were meaning to make a joke, but this is actually kind of an interesting abstract. "Perception of emotional prosody" refers to one's ability to understand how the rhythm of a person's speech indicates what the speaking person is feeling. E.g. the tone and rhythm you use when you say, "Well, that's just great!" strongly affects the meaning. With a certain kind of cognitive dysfunction (common in Autism Spectrum Disorders) the ability to interpret prosody and other people's emotional states is impaired. The abstract is discussing a neurological problem found in young people with relapsing-remitting MS.

    Sorry if I misunderstood your emotional prosody... ;)
  13. Valentijn

    Valentijn Activity Level: 3

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    Twin-ness is entirely self-reported via mail. The question used to determine if they're identical twins is rather vague and weird: "As children, were you and your twin as alike as two peas in a pod, or of only ordinary family resemblance?" Leaves a lot of room for interpretation regarding appearance versus behavior or getting along with each other.

    CF and CFS are basically a self-diagnosis based on a mailed questionnaire. Maybe that's why they're frequently calling it CFS-like illness instead of CFS. Also, the entry requirement was only fatigue of undefined duration. Thus some twin pairs might have no members with CF or CFS, and this seems likely as the numbers never quite add up. It also looks like CF patients without CFS act as controls for the CFS patients (bigger control group for CFS patients than CF patients), but some CF patients mysteriously disappear from the CFS analysis, which doesn't make sense if the CF patients with CFS end up in the CFS patient group, and CF patients without CFS end up in the control group.

    They perform two types of analysis. One is comparing the CF or CFS twin of a pair to his/her corresponding twin that doesn't have the same symptoms. But they also compare the twins as a group ... all CF participants (includes the CFS participants) versus all non-CF participants, and all CFS participants versus all non-CFS participants. This second comparison would seem to lose much of the power that you get from a twin study, since twin pairs can be in the same group (both with CF, both with CFS, or both with neither), so that part sounds more like a typical comparison between patients and (healthy or fatigued) controls.

    Maybe someone understanding statistics and numerical analysis could take a look at the numbers, because it seems kinda weird.
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  14. Valentijn

    Valentijn Activity Level: 3

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    Looking more at the results now. Something interesting to keep in mind is that the average birth year is 1953 - these twins have an average age of 60 :eek: That probably opens up additional causes of fatigue which have nothing to do with ME/CFS.
    I'm not sure the "association between extraversion and CF" follows from the earlier statements. All they're really saying is that identical twins have the same results as each other, with or without CF, whereas non-identical twins have a bigger difference. The only reasonable conclusion from that is that identical twins are more likely to have similar "emotional instability" and extroversion compared to non-identical twins.

    It's also a bit annoying that they say they "differ" but not whether CF participants or controls do better or worse. Also no scores are provided, so impossible to tell how they compare to what is normal for the questionnaire used. If they're going to support their claim that being unstable and/or introverted contribute to developing CF or CFS, and identical twins will have the same predisposition, there should be some way to compare the twins' scores to normal scores.

    My impression is that they're saying they "controlled" for identical status (by basically removing the identical twins from the analysis), because there wasn't a correlation between fatigue and instability otherwise. Could this be a cute way of reducing the sample size without reducing the power of the results? Near the end they say "Despite the smaller number of DZ pairs, however, we found robust associations even in this subsample, suggesting that statistical power was not an issue." Sounds like they aren't sure if statistical power was an issue when effectively excluding the identical twins.

    No difference between sets of identical twins regarding instability, only for non-identical twins, in sets were one but not both have CF and both don't have CFS.

    Significant differences in extroversion between twins in sets where they don't both have the same CF or CFS. Not surprising, since we can't go out and do stuff. o_O And their conclusion reflects that:
    But then they seem to suggest that "curing" the introversion will help cure the fatigue:
    So basically extroversion is more common in CF and CFS patients, but they admit it's a result of CFS, not a cause, even though they propose treating the extroversion to cause improvements in fatigue.

    And emotional instability levels are more similar in identical than non-identical twins, and might or might not be statistically significant when comparing non-identical CF or CFS participants to their twins without the same diagnosis.
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  15. vamah

    vamah Senior Member

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    I can tell you right now, if indentical/fraternal twins are identified only by questionaire then this study is bullshit. Any good study will do genetic testing to determine. There are twins who are so obviously fraternal (different eye and hair color) that this is unnecessary, but you need genetic testing to see if very similar twins are actually identical. Just as a side note, there is also a phenomenon of "semi-identical" twins, where twins are genetically identical but one of the X chromozomes "turns off" (this can only happen in girls) so that one twin only actually has the genes from one parent. (This is the kind of weird trivia that parents of twins know ;).)
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  16. Simon

    Simon

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    Unfortunately this study tells us nothing about CFS as they failed to diagnose according to any recognised criteria:
    Think that might have been a typo for 'abused'. The CDC '94 criteria requires a full clinical examination, full clinical history and an appropriate in-person psychiatric examination. And specified blood tests. None of these were done, hence no patients had confirmed CFS.

    75% (118/158) of twins discordant for Chronic Fatigue were also discordant for CFS-like illness, which should have been a red light to the researchers since it suggests that CFS is very common relative to CF - it isnt. I'm too lazy to check the details, but the large Reyes CFS prevalence study used a similar questionnaire approach to screen for CFS-like illness. However, Reyes and colleagues went on to clinically assess the CFS-like patients and I think something like 80% of them turned out not have CFS. On this basis, it seems likely only a small fraction of CFS-like patients in this Twin study had CFS.
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  17. Enid

    Enid Senior Member

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    I feel and must add that anything to do with personality types and ME is a pie in sky, when will this lot get real.

    "Liability" - a joke, I've spent 12 years mostly bedbound, going through potential loss of living and home trying not to be a liability on family and friends. I suggest this lot try it.
    Shell likes this.
  18. MishMash

    MishMash *****

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    Yes, sorry, you are right. Prosody is more a neurological impairment. But I do notice that many patients with CFS are completely tone deaf when comes to being quiet and letting others speak. I think this happens in doctors offices every day. Some take any second of silence to drone on and on about their condition, achievements, life sufferings. I can see why some practioners would think there is narcissistic personality disorder mixed in there. Or various personality disorder. (Not saying this with you in mind, Valentinelynx, pls dont' misconstrue )..
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  19. Valentijn

    Valentijn Activity Level: 3

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    Well, maybe that's your personal experience, but my own experience and what I hear from patients on the forum is usually quite different. Generally we forget half of the symptoms we need to have dealt with, and many ME patients don't bother with doctors at all anymore.

    On the rare occasion that I do get to see a specialist, I'm often given a lecture or recommendation about exercise by someone that has no idea what ME/CFS is and I can barely get a word in edgewise to explain the effect that exercise has on me. I know that specialist is useless and will never see me again, so I don't bother trying explain anything in detail, usually just "Exercise makes me much worse." They look a little shocked or doubtful, and then we shake hands and I leave.

    I also think it's rather nasty to characterize patient explanations as being "tone deaf", not "letting others speak" and taking "any second of silence to drone on and on". A lot of doctors have no idea what ME/CFS is and think "oh, fatigue. Antidepressant and/or sleeping pill." If they are not understanding the actual symptoms patients need help with, then I think some explaining is certainly warranted. Unless that antidepressant is all you really want.
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  20. MishMash

    MishMash *****

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    Years ago I used to talk to many CFS patients, at various meetings and conferences I used to go to. They do exhibit a bit of narcissism and tend to drone on and one. All you have to do is ask is: so how are you doing? The result is a ten minute monolog and exclamation of victimhood. There is no internal filter on what might be too much information for a given situation. It prevents a rational exchange over what might be wrong with the patient. To patients visiting doctors: I have suggested they prepare a prioritized list of symptoms and not just unload, sometimes out of emotion, overwhelming a doctor, with myriad, sometimes contradictory symptoms. This will certainly get you the reputation you so fear in your previous post.

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