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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. Kina

    Kina Moderation Team Lead

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    Making sweeping generalizations about a population of people is very dangerous.

    If I am reading you correctly, you seem to believe that people with CFS have no internal filters, can't engage in a rational exchange, have narcissistic tendencies, have a tendency to drone on and on, and are tone deaf and unable to let others speak. That seems quite insulting to me. I know people who don't have ME/CFS who have no internal filters, who go on and on about things, who won't let others speak -- it's not something that is unique to our population -- it's a human thing. I think it's unfair to further stigmatize our population with these sweeping generalizations. In the long run it hurts us because it just gives those seeking information to hurt us more ammunition to prove their negative opinions about people with ME/CFS.

    Being at a conference is a bit different than going to the doctors. If it is a conference for people with ME/CFS than those attending would understand what others are going through. One would be more likely to talk openly and freely about their symptoms etc when asked in this situation. Most of the patients I know go to the doctors armed with a list of prioritized symptoms and it's the doctor that starts banging on about stress, anxiety and all that crap. Generally, people with ME/CFS already have a reputation before even seeing a doctor if that doctor knows they have a diagnosis of ME/CFS and if you walk in with a prioritized list, you get the label of neurotic etc. And where do we get this reputation from: in part, from having all this negative stuff written about us and repeated over and over with absolutely no proof whatsoever.
  2. Esther12

    Esther12 Senior Member

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    That's a pretty open ended question, and if you've gone to a group for people to talk about CFS, you might find that people there have gone because they want somewhere to discuss the difficulties of CFS without feeling judged for it.

    When people ask me how I'm doing I just say 'excellent'. I've never been to a CFS group. But when I ask people 'how are you doing?' I'm quite interested to hear them explain in depth what problems they're facing and how that affects them, and appreciate them being honest with me (well - any topic can be made boring, but also most topics can be made interesting).

    I don't think it's safe to make generalised assumptions about people with CFS based upon the sort of experiences you describe, and think that there is a danger of promoting unreasonable prejudices which will make the lives of patients harder.

    PS: I was interested to read the comments of others on this paper. Thanks for letting us know what you think.
    Valentijn likes this.
  3. Valentijn

    Valentijn Activity Level: 3

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    I think there's a cultural factor there too. "How are you doing?" is often used as a greeting, or a conversational formality. In the US pacific northwest, people take it literally and give an honest answer which might be lengthy. But my experience has been that some people from the US east coast, for example, seem surprised (and a bit uncomfortable) if it gets more of a response than a simple "Hi" would get.
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  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I find it odd if people ask how you are and don't mean it. I tend to be literal in what I say and prefer others to do the same. Otherwise it makes conversation even more difficult than ME already makes it.

    I agree that it is wrong to generalise about a group of people in the way MishMash did, but perhaps people with ME do tend to have difficulty knowing when they are interacting normally or as expected - I certainly do. It's due to cognitive problems associated with the illness, affecting concentration and comprehension. Sometimes I will go completely blank, and sometimes to compensate for this I will blurt out a lot of stuff quickly so as to make sure I say it before a bout of brain fog sets in. I tend to forget what I am going to say if someone else starts talking just when I am about to speak, so sometimes find myself interrupting, whilst being uncomfortably aware that I may be coming across as rude and wishing my brain worked properly so that I could interact more normally.

    I do object to labels such as narcissism.
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  5. Xandoff

    Xandoff Michael

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    FROM: MISH MASH 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.
    --------------------------------------------------------------------------------
    OBVIOUSLY MISH MASH has never known the humility one experiences when a cognitive challenged ME CSF (er) enters a Doctors office full of people who think your crazy and that you "problem" is in your head.
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  6. MishMash

    MishMash *****

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    I'm not just talking about meeting people at conferences. I'm talking about the people I used to see every week, for years at a time, who had CFS, at support group meetings. If you don't like categorizations of human personalities, well, that's your irrational conclusion. The psychiatric field has put together a manual; and unless you are going to tell me the whole thing is b.s. then you would have to admit -- people can in no way be grouped according to tendencies and behaviors. That's rubbish. It's a bitter pill perhaps, for some out there, who believe it is just irrational "generalization" or "prejudice", but there is in fact real science behind it; whether you choose to believe it or not.

    Most people don't lapse into narcissism when they get CFS. But many of those people do. And they have a tendency to prattle on and preach to doctors in ways which ruin the relationship. That is not just me speaking. I know it is common practice to kick down any study showing common personality tendencies of CFS people; but guess what-- some of them are right on target. Forums like this are an echo chamber where people reinforce previously held beliefs. Whether its a belief in demethylation, mast cells, HHV6, people get obssesed and don't stop to listen to anybody else.

    I'm not sure why you, Kina, a mod has taken to lecturing people with valid points. You are a traffic cop, and not driver on the highway. I'm not sure it is at all ethical to interpose your personal beliefs into the discussions on these fora. Perhaps you should consider this before interjecting.
  7. Valentijn

    Valentijn Activity Level: 3

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    I think this is the third time I've asked - can you show me one of these studies? I've yet to see one which is persuasive, and even the CBT crowd has found to the contrary, though of course they don't like to cite to that.

    The biggest factor seems to be the quality of the questionnaires used, and the problems which some have in equating physical symptoms to psychiatric or personality disorders.
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  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Ah - but do we trust studies by those usual suspects...?

    In my many online conversations with sufferers there does seem to be a common theme of being highly-driven, hard-working, conscientious, etc., not to mention feeling a huge sense of responsibility towards others such as dependants, and desperately trying to care for these even when barely able to stand up.

    But any impression of narcissism may be due to cognitive impairment and sheer desperation after years - even decades - of having one's illness dismissed by others...just maybe the next one will listen...? People talk of their friends, families, employers, colleagues, and even health professionals trivialising their illness and just not 'getting it'. So it would be no surprise that, if someone asks them how they are, they grasp the opportunity to tell all, especially if it's at an event or location specifically related to the illness.

    Also, the first study you (Valentijn) cite says "No differences were found between CFS and RA patients..." As these are both (likely to be) autoimmune diseases, the same types of personality trait may predispose to both, or at least be associated with them in some way which may or may not be causal. My father had RA, for example.

    But in any case, if the issue is indeed personality traits, there is very little we can do about them short of having a brain transplant, a lobotomy or other drastic measure!
  9. user9876

    user9876 Senior Member

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    There may also be personaility trates that people with chronic illness develop as a coping mechanism. But some might be a reporting factor are people going to look back and say "when I was healthy I was really lazy" where as people who were working hard will, perhaps, just want to make that point to people who dismiss ME as a malingerers disease. Hence there is likely to be some bias in reporting.

    There is perhaps an interesting question as to what effect the immune system may have on personality. Drugs can certainly have a big effect. For example someone I knew on steroid reported feeling much more angry and anxious; the same person got very confused and I think a bit paranoid when given a particular (IV) antibiotic (it was a known side effect of the antibiotic). Hence if there is a correlation between personality and illness it shouldn't be assumed to be causal (which is the thesis from the biopsychosocial people) but it could be the otherway around.
    Dolphin likes this.
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Yes - after writing my last post I thought some more about things affecting personality, and drugs are indeed one. I have also found that the leaky-gut diet and supplements I am on have reduced my anxiety levels dramatically. It has made me wonder whether my lifelong anxiety, and adverse consequences of it, could have been avoided if I hadn't consumed so much sugar and grain. The same may be true for many people, not least children.

    A new study has concluded that 180,000 deaths worldwide each year are due to sugary drinks:

    http://newsroom.heart.org/news/180-000-deaths-worldwide-may-be-associated-with-sugary-soft-drinks

    I suspect that the number of deaths worldwide due to too much sugar and grain generally may be a lot more than that, not to mention the enormous burden of chronic disease of various kinds.
  11. Kina

    Kina Moderation Team Lead

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    Just because a person talks about their illness when asked doesn't make them a narcissist. It is unfair to start pasting psychiatric labels on people you meet at conferences that you really don't know except for that short period of time. It's not 'irrational' not to like categorizations of human personalities. Don't you see that is harmful to be lumping people with CFS under psychiatric labels. It adds to the already huge stigma of having a diagnoses of ME/CFS.


    Could you please point out to us a study that has shown people with ME/CFS are narcissists. You are making generalizations about people based on meeting people at conferences and then labeling them with a personality disorder. Slapping negative labels on a group of people is unsafe. In my nursing career, I met thousands of sick people, 'droning' on about themselves is not something that is unique to people with ME/CFS. After I asked a patient how they were feeling, I never entered into my nursing notes that the patient 'droned on for ages, they must be a narcissist'. That would have been ridiculous and substandard professional behaviour.

    Often the way we see people is a reflection of how we see ourselves - you don't seem to like people with ME much, maybe you should look a bit inward as to why.

    There you go again, making sweeping and negative generalizations about people with ME. What you are suggesting is that people with CFS somehow lapse into a personality disorder when they get CFS. Have you accompanied thousands of patients to the doctors office and watched them 'prattling' and 'preaching' in ways to ruin the doctor-patient relationship? You have referred to studies, please give some links. Most, if not all, of these studies are poorly designed and not replicated.

    An echo chamber? And here I thought Phoenix Rising was a forum where people sharing a common illness could come together and discuss what is important to them. Some come here to discuss one thing and it doesn't mean they are obsessed. You do like to label people with psychiatric labels.

    My moderator status has absolutely nothing to do with what I posted on this thread. I have some very strong opinions about the use of labels that do nothing but further stigmatize a group of people. My daughter has special needs and the stigma she has suffered at the hands of people using negative labels to describe a physical condition has been horrendous. I am not lecturing, I am offering my own opinions and I don't think it's valid to attach general negative psychiatric labels on people who have a physical illness because it is harmful. There is nothing unethical about that.

    It's interesting that when a member doesn't like what I am saying they start telling me I shouldn't post because I am moderator. I am not posting as a moderator. I am allowed to have personal beliefs. There is no rule here that moderators can't post opinions. If there was, I wouldn't moderate. You can't use my moderator status to shut me up especially when the topic has absolutely nothing to do with moderation. I am simply responding to some comments I found distasteful. Any moderator comments I make will be posted in blue.

    Now what was this thread about?
  12. Valentijn

    Valentijn Activity Level: 3

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    It is possible, but as I said - I haven't seen any proper studies showing that there is a personality disorder among ME patients. And most of the researchers interested in actual scientific research don't really give a damn about how we score on personality tests, so it's hard to find any quality research in that area.

    I think it's used more to blame the patient, excuse a lack of proper treatment, and promote CBT.
  13. biophile

    biophile Places I'd rather be.

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    I agree that chronic illness can influence apparent personality, either as a response to psychosocial implications, or a direct consequence of underlying pathophysiology. It may also exaggerate some pre-existing personality dispositions or characteristics. I only have limited experience with meeting CFS people, but as a group it did not strike me as much different than what could be expected from a random sample of the general population getting CFS and enduring difficult circumstances. I am not denying that some people may act as MishMash describes, but I doubt it is the majority of patients (something MishMash already conceded) or a defining characteristic of CFS per se.

    After a quick search, the first study I found with a relevant statistic for so-called "type A personality" was ~26% of Romanian students. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3019056. Suppose there are about 1 million CFS patients in the USA and about 1/4 are type A, that is about 250,000 stories potentially featuring a theme of pushing too hard and being highly stressed. That is more than enough for the confirmation bias of others to fuel strong stereotypes about CFS patients. Same problem could apply to any other relatively common personality characteristic which leaves an impression, and that is before considering the effects of illness on the apparent personality or behaviour of patients.

    Then we must consider case definition issues, broad CFS criteria notoriously overlaps with the physical symptoms of psychiatric diagnoses, and roughly only 1/200 people with "chronic fatigue" actually meets Canadian criteria.

    I also agree with Valentijn that there are no well-conducted convincing studies showing a major association between CFS and personality (at most there may be a minor association but nothing which justifies the ongoing psychobabble at large). We have a right to question the artifacts produced from inappropriate questionnaires and the methods of diagnosis. These sort of discussions always remind me of the alleged relationship with chronic pain and personality, there are better more recent sources but the sentiment is basically summarized on Wikipedia:

    http://en.wikipedia.org/wiki/Chronic_pain#Personality

    "Some investigators have argued that it is this neuroticism that causes acute pain to turn chronic, but clinical evidence points the other way, to chronic pain causing neuroticism. When long term pain is relieved by therapeutic intervention, scores on the neurotic triad and anxiety fall, often to normal levels.[35][36][37][38] Self-esteem, often low in chronic pain patients, also shows striking improvement once pain has resolved. [38]"
  14. Enid

    Enid Senior Member

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    Sorry don't agree illness affects personality - yes to the extent one cannot participate as one once could in family and friends affairs but I found a definite "personality" persistance in my own thoughts and some empathy for the groping medics trying to understand. Especially two personal letters of apology from my Neurologist.
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  15. Esther12

    Esther12 Senior Member

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    Haven't they dropped personality disorders from the new DSM? I've seen lots of psychiatrists argue that diagnoses based on 'personality' traits are bullshit, and fail to account for the abnormal experiences of some people's lives. Have you been watching how the DSM is compiled? I see little reason to have faith in it.

    Much of the research I've seen on personality and CFS is, when one looks at the evidence, just not very good. If they're not using controls who face similarly difficult and uncertain health problems, then they are likely to detect 'abnormalities' which simply reflect the fact that patients with CFS lead different lives to healthy controls. Of the studies I'm aware of that do use those with health problems are used as controls, then no differences are found.

    I think that 'personality' is an area where some like to believe we have much more understanding than we truly do. I'd have thought that, given the nature of CFS as a diagnosis, then would need to be some association between some personality traits and a likelihood of receiving the diagnosis, but our ability to meaningfully assess 'personality' does not seem able to pick this up, and I do not think that this need indicate that 'personality' plays any role in causing or perpetuating disability.

    Your views about CFS patients seem very likely to be a reflection of the settings in which you saw other patients - at a support group for an illness, people are rather more likely to talk about their illness than the latest hot political issue. Given the biopsychosocial manner in which many doctors think it is acceptable to manner patients without consent, I do not think it is sensible to assume that hostility which then occurs in a doctor-patient relationship is a result of the abnormal way in which patients behave. Patients with CFS are commonly ill treated.

    Lots of CFS patients can become attached to one particular view or other. So can all other people. It's a widespread human trait, particularly in the face of great uncertainty. You're not accounting for confounding factors, and I think that this is misleading you.

    There may be a tendency towards certain 'personality traits' in CFS patients. There may be in black people. There may be in Jews. While the evidence is so tenuous in these area, assertions about these matters is typically a reflection of prejudice, and should not be treated with more respect when targeted towards those with CFS than any other group.
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  16. Dreambirdie

    Dreambirdie work in progress

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    You really should educate yourself before making such sweeping and erroneous statements. You're using the word "narcissist" much too casually and very inaccurately.

    NPD (narcissistic personality disorder) is a Cluster B personality disorder, with Cluster B including BPD (Borderlines), ASPD (Sociopaths), and HPD (Hysterics). Cluster B PDs are known as "erratic and dramatic," and as the most toxic and abusive of the PDs.

    People do not just "lapse into" NPD. In fact, NPD (like most personality disorders) usually manifests in adolescence, due partly to genetics (there is one study that indicates 64% of NPD is inherited), and partly to interpersonal environmental factors. NPD is considered a "spectrum disorder," which means that there are varying degrees of it, and it can become a lifelong disorder, due in large part to the fact that most of those with NPD are not generally willing to get psychotherapy. That would mean an admission that they are "flawed," and most NPD types cannot stomach that idea.

    The most striking and malignant trait of those with NPD (besides their grandiose self image, their attitude of entitlement, and their need for constant admiration) is their TOTAL LACK OF EMPATHY for other people. Narcissists are incapable of comprehending how another person might feel. Because they are so overly concerned about their self image, they might become good at acting the part of the "nice person" and pretending to have empathy, but there is absolutely no sincerity behind that act. Narcissists are out for themselves, and exploit others to get where they think they need to go. If a narcissist is ever called out for behaving in a way that is inconsiderate or abusive, s/he will most often blame and even blacklist the victim. There is no mercy in the heart of a true narcissist. Anyone who's been subjected to an NPD type will tell you how nasty, demanding, vengeful and vicious they can be.

    Add to all this the fact that those with NPD gravitate towards professions where they are given a lot power and admiration, (like doctors, lawyers, religious leaders, politicians), and you have a personality that is a far cry from the average CFS patient. Needing to prattle, due to cognitive impairment and isolation, does NOT make someone a narcissist. Get it straight please.

    http://en.wikipedia.org/wiki/Narcissistic_personality_disorder
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  17. MishMash

    MishMash *****

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    You totally contradicted yourself by posting the wiki article. You categorically state above that narcissists totally lack empathy, which is, of course, total nonsense. Almost all narcissists have some empathy, some more, some less. Very few have NO empathy. Read the article, then reassess what you just wrote.

    And of course, your article says narcissim can be negative or of no consequence. It can be barely negative or extremely negative. It can be useful for a leader or businessman who has to give orders and make decisions without hesitation. General MacArthur was an extreme narcissist; but he helped win WWII. In the case of CFS patients, who exhibit narcissim, it can be extremely negative vis-a-vis family, friends, and most certainly doctors.

    The patient cannot tolerate his/her environment's lack of understanding of their incurable/unsolvable disease. As a result, many CFS patients have neuroticism which breeds narcissim concerning one's health. Or quite posssibly, as your article says, there is an organic illness or genetic basis causing it. This leads to certain behaviors when visiting doctors. Hence the lack of internal filter when discussing ones' health and a lack of ability to listen. Eventually leading to living in a fantasy world of the patient's own making. Gathering with other narcissists, in person or virtually, reinforces the narcissitic tendencies.
  18. Dreambirdie

    Dreambirdie work in progress

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    "Lacking empathy and disregarding the feelings of others" is one of the main criteria for diagnosing NPD. It's listed in the "symptoms" in that article. Any good shrink or psychotherapist will validate that fact.

    And yes, I said NPD is a SPECTRUM DISORDER, which means there are varying degrees of it. That's what spectrum disorder means. :rolleyes:

    Some narcissists can be VERY successful in regard to their worldly achievements, mainly because they (like MacArthur--aka Dugout Doug by his troops, who mostly despised him) are so good at tooting their own horn. If money, power, prestige, grandiosity and lack of empathy are what you value most, then those with NPD would be a good choice of compadres for you.

    The rest of what you wrote is conjecture based on your own negative opinions of CFS patients. It makes me wonder why you are even here on the forum. Why bother spending time with people who annoy, irritate and bore you so much with their alleged obsessions and supposed endless unfiltered prattling. Sounds like a stupid idea to me.
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  19. Enid

    Enid Senior Member

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    I cannot believe anyone participating here giving any credence to personality and ME. I will not read this stuff having 4 specialist Docs in my own family (Neurology, Radiology, Paediatrics). REAL DOCS. I must ask why when so much pathology (excluding personality) is discovered now this is of any interest. It's a dead end and contributes nothing to the growing reaearch/findings in the biomedical pathologies involved.
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    This is certainly true of my own encounters with doctors. I have been extremely polite with them, but have been treated with dismissal, disbelief and rudeness. It's one of the (many) reasons I avoid doctors as much as possible, as it is exhausting and stressful to have to metaphorically 'walk on eggshells' to avoid hurting the doctor's ego at the same time as struggling to explain one's symptoms and take in what the doctor is saying.

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