Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Populat

justinreilly

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My problem is not only that this is a ridiculous study (thank you to all of you who have so eloquently pointed out the many reasons for its ridiculousness), but that CDC (or this little slice of it) apparently has no awareness of the clout and presumption of authority it has with the medical profession in the US and around the world when it comes to this disease, and the very real consequences its every action concerning ME/CFS has on all aspects of the already substandard quality of life of ME/CFS patients (in terms of quality (if not absence) of medical care, addressing financial burdens due to inability or limitations on ability to work due to disability, and lack of understanding by society at every level - friends, family, potential private donors to research/advocacy, employers, tax authorities, insurance companies, etc.).

Doesn't someone, somewhere in the government realize...
Shiso,

In the early years of ME, as you are in, it was very hard for me emotionally accept that CDC "CFS" program and NIH have been doing this intentionally to us consistently since the beginning. There is NO doubt the war on patients and science is intentional. The evidence is beyond overwhelming.

I think the very fact that the CDC is spending money studying so-called "personality disorders" at all in CFS in 2010 is a problem. One would think they would be past that by now, and that the money would be spent on research that can lead to discoveries that can lead to non-psychological treatment.
This has been their strategy since day one. Once they misappropriated millions they had to cast us as crazy and lazy so noone will believe us when we point out their crimes. This is what it all boils down to.

Feel free to PM me if you have any questions about this. I also really think you'd really enjoy Osler's Web (personally, it has helped me more than anything else).
 

justinreilly

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Good job ferreting those out, CBS!

That's what I was wondering. Journal of Psychotherapy and Psychosomatics? They probably call upon some of world's experts in the field, like Simon Wessely and Peter White.

Ever wonder why it's necessary for the ethics and advancement of science for the peer-reviewers to be anonymous? I think they should have to list the names of the reviewers the same way they list the names of the authors. And they should have to declare any conflicts of interest, too.

I was thinking that we should ask the CFS Advisory Committee to address this. There are so many holes in this research, and I think it's within the charge of the CFSAC to address the way the CDC is prioritizing its research. This is what they're spending the paltry sums allotted to ME/CFS on. Lenny Jason is a psychologist, right? Maybe we could ask him to point out the fallacies and ask the CDC to account for them. At least that would get it on the public record.

There should be SOME way to not let this go unchallenged. Somehow I have a feeling that the time for just ignoring them with a "sticks and stones" attitude has passed. I'm with dancer and her Patient Anti-defamation League. Maybe we need a patient advocasy organization...
A patient advocacy organization sounds like a good idea.

I wonder if CFSAC has subpoena power to get people down there to explain why this persecution is occurring. I would suspect that most of the CFSAC members wouldn't really want to do this though. Even Klimas is kind of a 'get along' not rock the boat type. I suspect only Jason would want to do this and that's really probably not enough. But maybe they could push it a little and have not just Unger and Mike Miller, but their boss and Anthony Fauci there to answer some real questions.
 

justinreilly

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Introversion v. Extroversion

I'm not a psychologist but have done some reading on personality in the past.

According to the MBTI personality test, which is widely used, introversion and extroversion refer to whether people are energized by being around groups of people vs. being alone or one-on-one. It does not refer to whether you are shy or outgoing. Someone can be outgoing when they want to be but find it tiring to keep up; thus they are an introvert. On the other hand, someone can be shy but once warmed up, are energetic around groups of people; thus they are an extrovert. It is a spectrum - most people are blends of both. The MBTI also does not make judgements about whether introversion vs. extroversion is bad or not; it's simply the way people are.

http://en.wikipedia.org/wiki/Introversion

I have not read the CDC paper though so they might be using extrovert and introvert differently.
Honestly, I'm surprised CDC said we were too introverted as I'm sure they wish we were alot more introverted (and kept our views to ourselves)!

These persecutor-people are so inventive! I have heard so many different (contradictory) unfounded explanations in the "literature" about psychology in ME. I read in one text on psychosomatic medicine that ME was very similar to somatization disorder, except that the personality type was very narcissitic and Type A; people who couldn't perform up to their own expectations so they blame doctors and insist there's something physically wrong with themselves though there isn't.

It was funny to me that someone quoted in Osler's Web responded to this type of argument with "I'd like to see the expression on Cher's face when CDC tells her that her 'CFS' was caused by unmet goals and poor coping skills."
 

justinreilly

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I do think we have to go forward with some sort of legal actions against the CDC and maybe even DHHS. We need to find an attorney who will take on a class action against the government (and/or) individuals within the government for deliberate malicious malfeasance or whatever the correct legal terms are. I fervently believe we have to do this. I believe that JustinReilyESQ was looking into this but if others with lawyer family members (or legal backgrounds) could also see what can be done, that too would be great. I think we do need to bring some sort of legal action to force the CDC to show their documents/data and to bring this whole thing to the attention of the public.
I'm not looking into this at this point, since my priorities now are trying to survive, getting better and getting help for us in general.

My off the cuff opinion is I doubt any lawyer would really take this on yet since it would be hard work to explain this to a jury and they might not want to believe that the government would persecute us. But someone posted that some lawyers had contacted Dan Peterson when the Lombardi paper was published, so i certainly could be wrong on this.

I'm reading Betrayal of Trust and the Coming Plague- kind of an Osler's Web of emerging diseases and how CDC, WHO and other public health agencies are not preparing for them. Very interesting, definitely recommend. Anyway, the author, Laurie Garrett, wrote about the Swine flu scare back in 1976. A few hundred people got Guillain Barre (a neurological disease) from the swine flu vaccines and some died. They sued and between settlements and verdicts got i believe about $75M out of the Fed govt.

This was a case that had more going for it than us since it was very easy to show causation. I think we can show causation, but this is certainly an issue for any case for us. Our other big problem is sovereign immunity; but we may be able to get around it like the Guillaine Barre people did. Anyway, these are just thoughts. My personal feeling is we need political advocacy now to get us help more than we need legal action; but others could certainly disagree.
 

justinreilly

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one more quick note re personality disorders.....

by definition they have to have had an onset in adolescence or early adulthood.....so the question is if their survey and questionnaire were measuring current personality or if they were looking at people's youth and early adulthood, too
Personality Disorders are thought to be part of someone's 'character' so they are thought to usually last a very long time and be very hard to 'treat', so i'm not sure it would matter that much.
 

justinreilly

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"The maladaptive personality features that we describe interfere with the ability to follow directions and maintain the selfmotivation needed for cognitive behavioral therapy and graded exercise therapy to be effective."

If reviewers and editors did their jobs properly then such intellectually sloppy statements would not get published.

Wouldn't it be great if you read research told you new things about the illness, rather than about the views and shortcomings of the researchers? I know, just a dream.
Ha! That would be so refreshing!!
 

justinreilly

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CAA response to study?

And the CAA's thoughts on all this would be????
That it's a load of crap and has nothing to do with CFS or CFS patients. Although the staff would phrase that much better than I did. And CBS hit the killing blow with the references to the 2003 study comparing CFS and MS.
Can CAA please write a brief critique of the study and post it to the website and send it to the journal and CDC? Any critique would of course include the most glaring fatal flaw- the invalid Reeves definition of "CFS" upon which the study is based.

Sorry for posting one after another, just got to reading the thread.
 

justinreilly

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Can CAA please write a brief critique of the study and post it to the website and send it to the journal and CDC? Any critique would of course include the most glaring fatal flaw- the invalid Reeves definition of "CFS" upon which the study is based.

Sorry for posting one after another, just got to reading the thread.
Guess not.

Jennie- Any reason for not doing this? I'm talking about a two paragraph or so letter if time is pressed.
 

Tammie

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Validity of the Personality Diagnostic Questionnaire-Revised: a replication in an outpatient sample.
http://www.ncbi.nlm.nih.gov/pubmed/1544299

"The PDQ-R showed high sensitivity and moderate specificity for most axis II disorders. Although not a substitute for a structured interview because it yields many false-positives, the PDQ-R is an efficient instrument for screening outpatients with DSM-III-R personality disorders."
First of all, that truly only applies to healthy people - many, many of the questions have been shown to be invalid for people with chronic illnesses.....and second, the DSM-III-R is very outdated - they have already had a Iv and a IV TR and are working on the 5th version rt now....not to mention that the statement above re false postives shows that it is not supposed to be used as the sole assessment
 

Dolphin

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First of all, that truly only applies to healthy people - many, many of the questions have been shown to be invalid for people with chronic illnesses
Examples would be good for anyone trying to submit a letter (only person I heard of was CBS - don't know whether he has submitted anything, still seeing if he can see a particular questionnaire, decided not to do it, etc).
 

Esther12

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I alway get people's user-names mixed up, but I was trying to get the list of questions through a psychology academic I know. No luck unless we fancy coughing up the full commercial rate.

I bet that there are loads of inappropriate questions hidden away in there, but we can't get at them.
 

Dolphin

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I alway get people's user-names mixed up, but I was trying to get the list of questions through a psychology academic I know. No luck unless we fancy coughing up the full commercial rate.
Well done for trying. Sometimes if one gets a question or two, if one googles that one can find more or even the whole questionnaire. I've done that and found lots of different questionnaires over the years - people doing projects, theses, or whatever and they leave in the questionnaires. So if we could even get a few questions, we might find a list online.
But I wasn't thinking of you; CBS was going to try.

I bet that there are loads of inappropriate questions hidden away in there
Yes.
 

Esther12

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.
But I wasn't thinking of you; CBS was going to try.
Sorry, I wasn't very clear.

I could have been in contact with CBS myself. ComebackShane too?

Cunning idea with google. I don't think we've got anything to get started on though.
 

Dolphin

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First of all, that truly only applies to healthy people - many, many of the questions have been shown to be invalid for people with chronic illnesses.....and second, the DSM-III-R is very outdated - they have already had a Iv and a IV TR and are working on the 5th version rt now....not to mention that the statement above re false postives shows that it is not supposed to be used as the sole assessment
Although that poster referenced research on version iii, which is interesting, the paper itself used version iv (ref 20) and part of iv-tr (ref 21):

Personality Diagnostic Questionnaire, 4th edition. The Personality
Diagnostic Questionnaire, 4th edition (PDQ-4) [20] , is a
100-item, self-administered, true/false questionnaire that yields
personality diagnoses consistent with the DSM-IV diagnostic criteria
for axis II disorders. In the current study, the participants
completed the instrument on a computer during their clinical
evaluation. The PDQ-4 assesses the 10 personality disorders of
the DSM-IV, and 2 additional personality disorders described in
the appendix B of the DSM-IV [21] . The PDQ total score provides
an index of overall personality disturbance and is calculated by
summing up all the pathological responses. A total score of 6 30
indicates that the respondent likely has a personality disturbance.
The PDQ-4 was designed for high sensitivity at the expense of low
specificity.
20 Hyler SE: Personality Diagnostic Questionnaire-
4+ (PDQ-4+). New York, New York
State Psychiatric Institute, 1994.

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

Dolphin

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Sorry, I wasn't very clear.

I could have been in contact with CBS myself. ComebackShane too?
Yep

Cunning idea with google. I don't think we've got anything to get started on though.
Starter questions would be useful so if anybody can help with that, it'd be great. One can still get there sometimes if necessary e.g. search around for where they talk about a particular questionnaire; sometimes they give sample questions. Then google these sample questions and then one may find the whole questionnaire. Or would might just find places where one finds a few more sample questions. Some sample questions can help more than others as sometimes a phrase can be used frequently in other contexts.
 

Esther12

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I did spend quite a lot of time on google trying to track down the questionnaire last time. Maybe I'll have another go, focusing on student projects etc this time. Last time it always seemed to lead back to being charged a fee for it.
 

Dolphin

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Good news: PDQ-4 questionnaire and scoring!

One person (not sure they want to be named?) has sent me a PM to say they found the PDQ-4.
Also the scoring (so one can see what one score oneself if one wants).
This should help people, particularly novices like myself, to get a grip a bit more on the area of personality disorders:

http://www.cure-international.org/PDQ4Test.html

http://www.cure-international.org/f/PDQ-4_Questionnaire.pdf (105KB)

http://www.cure-international.org/f/PDQ_Excel_Self-Scoring_Sheet.xls (23KB)

As one can see, the files are quite small.
 

Esther12

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Excellent work whoever managed this.

It could well be worth saving a copy, as I don't think that this are meant to be publicly available.
 

Dolphin

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Some questions that possibly might change because of ME/CFS?

Here are a few that occured to me *might* change because of somebody's ME/CFS - there could be other ones and/or perhaps some of these wouldn't change anybody's answer for that question?
3. I often get lost in details and lose sight of the “big picture.”- cognitive problems?

7. Others have complained that I do not keep up with my work or
commitments.
- health/disability

22. I would rather do things by myself than with other people.- can't cope with too much stimulation/don't have enough energy?

24. I often wonder whether the people I know can really be trusted- invisible illness so they may not see how disabled you are in general or at any one point?

28. I have many shortcomings.- some might say being disabled leads to shortcomings?

32. I often wonder who I really am.- disabling illness makes one question

34. Sex just doesn’t interest me.
- fatiguing/pain illness with low testosterone etc?

35. Others consider me moody and “hot tempered.”
- illness probably doesn't do much for one's moods

39. I am more sensitive to criticism or rejection than most people.
- ME/CFS makes one more sensitive?

40. I find it difficult to start something if I have to do it by myself.- if disabled?

56. I worry a lot.- disabling illness with unknown prognosis that often leads to a lack of sufficient support

57. I expect other people to do favors for me even though I do not usually do favors for them.
- being disabled can cause that

65. When alone, I feel helpless and unable to care for myself.
- if very disabled perhaps

68. Some people think that I take advantage of others.- if disabled with an invisible illness

69. I feel that my life is dull and meaningless.- perhaps some people with a disabling illness

74. By looking at me, people might think that I’m pretty odd, eccentric
or weird.

- sometimes people can have things to avoid stimulation e.g. dark glasses?

77. I complain a lot about my hardships.- maybe people with a disabling, misunderstood illness?

79. Some people are jealous of me.- ??because don't work??

81. I see myself as thrifty, but others see me as being cheap.
- because of a lack of money??

88. I am terrified of being left to care for myself.- if very disabled?