CFS Personality Type Survey

October 15, 2006

Adrienne > Kurt, I just wonder which kind of " genetic " you are

meaning. Jung used it but it was pretty clear that he did not mean a

physical transmission of characteristics. He seems to have meant a

genetics that was more spiritual, or soulish.

Well I can't speak for Jung, but I was referring to 'genetic' in the

general sense of how the brain is wired.

> I have never heard of any physical correlations of actual genes with

types. HAve I missed something?

I don't know why anyone would study that, although given what is

starting to appear about certain illnesses and personality, perhaps in

time someone will find a correlation. Of course the idea that actual

specific genes correlate with biological traits is certainly not new.

I suppose this comes down to whether or not the parameters measured

by the MBTI are due in part, or wholly, to biological traits. I tend

to believe they are at least influenced by biology, but perhaps it is

a nature-nurture type of interaction that creates the personality. If

that is true, then we should see at least SOME correlation, and that

is what we have in the survey results.

There must be an explanation for the survey results, becasue this does

not look random. To have a type (INFJ) present in only 1.5% of the

population be present in such large numbers of PWC can not be a

coincidence. So then the task is to find an explanation. I do not

believe that PWC have inherently unstable personalities that all

change to be INFJ when sick. Rather, I think there is something to be

learned here about the complex nature of CFS.

--Kurt

October 16, 2006

Hi, Kurt.

Thanks for doing this poll. I agree that the results are dramatic and think

your

speculation is largely on target.

It looks like to me those with the ...NFJ combination of dominant traits,

regardless of

extraversion or introversion, are distinctly vulnerable to CFS as a type, with

all those with

the NF combination not too far removed from this predisposition. I happen to

disagree

with tests that end up showing so many INFJs, regardless of CFS, and think that

this group

is predominantly ENFJ(ENFJ's have the most introverted feelings among all the

extrovert

types and the INFJ is among the rarist in typology is my reason for this

skepticism).

FWIW, Niednagel has found in his own data of several decades of professional

study in this

field that both the ENFJ and ENFP braintypes are most vulnerable to depression.

He says

the reason why is these two tend to get depressed when they don't see hope on

the

horizon, which is apparently not as a much a need for the other types in

maintaining their

emotional equilibrium.

Please let us know here the results you get from doing this poll with the

chronic lyme

group you have in mind. Those results could be very interesting.

" Kurt Rowley " <kurtrowley@...> wrote:

Incidentally, I may post a similar poll to a large Lyme group.

> Given the simliarities between conditions, I think this could be an

> interesting comparison/contrast.

>

> --Kurt

>

October 16, 2006

Hi, Adrienne.

" Adrienne G. " <duckblossm@...> wrote:

>

> Kurt, I just wonder which kind of " genetic " you are meaning. Jung used it but

it was

pretty clear that he did not mean a physical transmission of characteristics. He

seems to

have meant a genetics that was more spiritual, or soulish.

> I have never heard of any physical correlations of actual genes with types.

HAve I missed

something?

> Adrienne

***There has been a lot of misunderstanding of what Jung was doing way back in

his day.

But upon closer examination and with the inclusion of many insights about

genetics since

his time, it turns out the traits he observed are in fact completely genetic

when it comes to

those now assessed by Myers-Brigg(MBTI), Braintypes(BTI) or others variants that

have

Jung's original findings in this field as their origin.

***It's important to remember these are core temperment traits and the typing is

not

intended to represent the entirety of ones personality or more accurately said,

" persona " ,

which includes temperment but also has almost as equally a lot that is

influenced beyond

genetic contribution and can change. Check out http://www.braintypes.com as a

good

place that shows most clearly that this area of human typology is 100%

genetically

determined.

***It's really a stunner! Who would've thought president W. Bush and

former

pesident Bill Clinton share the exact same temperment or braintype(ENTJs both),

while

their personas are clearly different, never mind distinct political idealogies?

October 16, 2006

I think he has a way to go before he has proven anything by genetics. Says there

are people who don't want him to succeed so he is keeping the actual research

secret? Give me a break. I am always ready to be wrong, but sounds hokey to me.

Adrienne

Is this what you mean by the word you used? (This was Jung's meaning:)

3. persona The role that one assumes or displays in public or society; one's

public image, as distinguished from the inner self.

Re: CFS Personality Type Survey

Hi, Adrienne.

" Adrienne G. " <duckblossm@...> wrote:

>

> Kurt, I just wonder which kind of " genetic " you are meaning. Jung used it

but it was

pretty clear that he did not mean a physical transmission of characteristics.

He seems to

have meant a genetics that was more spiritual, or soulish.

> I have never heard of any physical correlations of actual genes with types.

HAve I missed

something?

> Adrienne

***There has been a lot of misunderstanding of what Jung was doing way back in

his day.

But upon closer examination and with the inclusion of many insights about

genetics since

his time, it turns out the traits he observed are in fact completely genetic

when it comes to

those now assessed by Myers-Brigg(MBTI), Braintypes(BTI) or others variants

that have

Jung's original findings in this field as their origin.

***It's important to remember these are core temperment traits and the typing

is not

intended to represent the entirety of ones personality or more accurately

said, " persona " ,

which includes temperment but also has almost as equally a lot that is

influenced beyond

genetic contribution and can change. Check out http://www.braintypes.com as

a good

place that shows most clearly that this area of human typology is 100%

genetically

determined.

***It's really a stunner! Who would've thought president W. Bush and

former

pesident Bill Clinton share the exact same temperment or braintype(ENTJs

both), while

their personas are clearly different, never mind distinct political

idealogies?

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

October 16, 2006

> the NF combination not too far removed from this

predisposition. I happen to disagree

> with tests that end up showing so many INFJs, regardless of CFS, and

think that this group

> is predominantly ENFJ(ENFJ's have the most introverted feelings

among all the extrovert

> types and the INFJ is among the rarist in typology is my reason for

this skepticism).

I also suspect that some of the INFJs here are actually ENFJs.

Largely because of the social nature of these online groups. I don't

believe that the 'I' type participates on these lists as much, due to

the social exposure, although probably many are lurkers. In my own

case, I am INFJ, and I was very shy and reluctant to participate in

this or any other group, I lurked for a long time on several groups.

So if anything, I believe the INFJ is LESS likely to participate in a

group like this. What brings us here is a pressing need. But those

who are natively ENFJs, I can see that they would be more likely to

participate in a list like this, and given the CFS might score as an

INFJ.

> FWIW, Niednagel has found in his own data of several decades of

professional study in this

> field that both the ENFJ and ENFP braintypes are most vulnerable to

depression. He says

> the reason why is these two tend to get depressed when they don't

see hope on the

> horizon, which is apparently not as a much a need for the other

types in maintaining their

> emotional equilibrium.

Interesting. Not sure I agree with his explanation, people also get

depressed when their serotonin becomes depleted. But an interesting

correlation.

--Kurt

October 16, 2006

Interesting to play around with the concept of personality

associations.

But, in terms of causality, if the illness demonstrably shows the

capacity to ignore it completely,

it means the illness just plain doesn't care.

Examing personality is kind of like interviewing survivors of a

sunken ship to see if personality traits correspond to how well

someone treads water.

It probably does, but that has very little to do with how they

wound up in the water.

-

TESTIMONY BEFORE THE FDA SCIENTIFIC ADVISORY COMMITTEE

The National CFIDS Foundation

103 Aletha Rd, Needham Ma 02492

(781) 449-3535 Fax (781) 449-8606

February 18, 1993 by R. Cheney M.D.,Ph.D Charlotte, NC

My name is Dr. Cheney. I am a general internist by training.

I was invited by the CFIDS Association, a patient group of some

30,000 members, to present the perspective of a clinician in the

trenches treating chronic fatigue syndrome. It has now been over

eight years since I first became conscious of this disorder as a

distinct clinical entity. I watched in awe as over 200 cases

appeared over a span of six months in a small community on the north

shore of Lake Tahoe where I practiced in 1984. Since then I have

evaluated over 2500 cases of chronic fatigue of which over 2000

cases meet the CDC case definition.

I currently direct the Cheney Clinic in Charlotte, NC, (which, with

a staff of fifteen, is devoted entirely to the diagnosis and

management of CFS). We have carefully evaluated in the three years

of our existence over 1200 cases from 45 states and 6 foreign

countries or territories. 78% meet the CDC case definition. We have

seen the worst and the best of the range of scenarios that can

befall a patient with this disorder. At best, it is a prolonged post-

viral syndrome with recovery or improvement within one to five

years. At worst it is a nightmare of increasing disability with both

physical and neurocognitive components.

The worst cases have both an MS-like and an AIDS-like clinical

appearance. While CFS is not generally fatal, we have lost five

patients in the last six months. Two by suicide and three by

intercurrent infections. All were in a progressive, debilitated

state. The most difficult thing to treat is the severe pain. The

most frustrating is the fatigue. The most alarming is the neurologic

and neurocognitive elements of this disease. Half have abnormal MRI

scans, 80% have abnormal SPECT scans, 95% have abnormal cognitive

evoked EEG brain maps. Most have abnormal neurologic examinations.

(The most severe cases have neurologic findings which are striking

but at the extreme of a continuum of abnormalities which are subtle

in most cases.)

We have 155 cases with random CD4 counts below 500, 62 cases below

400, 21 below 300 and 3 below 200. An estimated two thirds of these

cases will persist below 500 on repeated determinations. Only a few

will meet the crurent case definition of ICL. None have shown

progressive CD4 depletion as seen in AIDS. (Many with low CD4 levels

are clinically quiescent and quite stable.) However, we have had

four cases of AIDS defining opportunistic infections including MAI

and pneumoncystis pneumonia and two cases of spontaneous esophageal

candidiasis. (One of these patients has had repeated bouts of

opportunistic infections but only one has CD4 depletion.) 40% have

impaired cutaneous skin test responses to multiple antigens. Most

have evidence of T-cell activation. 80% have an up-regulated 2-5 A

anti-viral pathway on a single determination.

From an economic standpoint, this disease is a disaster. 80% of the

cases evaluated at my clinic are unable to work or attend school.

The average length of illness at the time of presentation is 3.8

years. 90% have become ill since 1980. The yearly case production,

if plotted, is exponential. Most are already on or will shortly be

on some sort of disability plan, public or private. In a recent

survey of 20 consecutive patients at our clinic, the average dollar

figure spent on medical care before coming to our clinic was $15,000

with a range of from $2,500 to $50,000. Most patients had seen more

than ten physicians. (Very few were happy with their care or

treatment at the hands of ordinary physicians, but especially

medical specialists. The worst care is rendered by HMO's and

national diagnostic clinics. The best care is rendered by caring

family physicians.)

The most common reasons given to come to our clinic are 1)To obtain

a definite diagnosis 2)To seek treatment options and 3)To document

disability for subsequent social security disablity applications. We

are frequently depositioned for disablity and other types of

litigation. (Many cases involve divorce as we witness the

disintegration of the family unit. WE have seen litigation against

schools to force homebound teaching of impaired children with CFS.)

The medical legal aspects of our practice steadily grow as this

disease eats at the fabric of our communities.

We admit regularly to the hospital. The most common admitting

diagnoses are acute and chronic encephalopathy, uncontrolled head

pain and debilitating fatigue with inability to care for self. The

longest hospitalization is 5 months to date. That patient has

encephalopathy, seizures and apraxia and is currently awaiting

nursing home placement at the age of 37. Medicare/medicaid has to

date paid $150,000 to the hospital for her care which has exceeded

$250,000 since August 1992. Another patient, age 28 and also on

medicare, spent 8 weeks at Emory University Rehabilitation Hospital.

During her stay at Emory, she steadily worsened under standard

rehabilitation protocols and was eventually transferred to me for an

additional 1 month hospitalization. (She has been confined to a

wheelchair for 18 months with severe lower extremity extrapyramidal

motor neurnon disease.) Both of these cases are summarized in two

case reports for your review.

In summary, CFS is an emerging, poorly understood disorder with a

distinctive clinical presentation. I am not at all sure that it is

as heterogeneous as some would lead you to believe. (I am also not

al all sure that much of what I and others have been witnessing

since 1980 is necessarily and old disorder. Post-viral syndromes are

certainly old and certainly related but most CFS cases are much more

distinctive than that. The boundaries of this disorder are certainly

vague but htat is true of many otherwise distinctive clinical

entities.) This disorder is a socio-economic as well as medical

catastrophe that will not end. I believe that government and

university clinicians have spent too little time with or thought too

narrowly about these patients. This disease is too complex to rely

wholly on standard medical orthodoxy to explain it. When in doubt

listen to a thousand patients with an open mind. Failing that, then

listen to those who have spent countless hours with a thousand

patients. Most of us have some wisdom to impart and most of that

came from patients.

Thank you for listening

October 16, 2006

Hi, Adrienne.

" Adrienne G. " <duckblossm@...> wrote:

>

> I think he has a way to go before he has proven anything by genetics.

***I thoroughly disagree. You'd need to look into it more, perhaps reading one

of his

books on relationships or sports like I've done and you'd see what I'm talking

about, it

becomes self evident in his writings and how they immediately give you real

world access

to those what those initialized traits empirically mean when looking at people.

Says there are people who don't want him to succeed so he is keeping the actual

research

secret? Give me a break. I am always ready to be wrong, but sounds hokey to me.

***I've seen postings on the net by a jealous college professor who teaches

psychology

who was severely knocking what Niednagel describes as braintyping and it was

obvious to

me this guy had not given him or his observations proper review or respect for

some very

impressive results they produce. Envy happens to the best of us and I think

some may

be envious of the big dollars Niednagel gets paid by top athletes for

performance coaching

and sports organizations for his observations about athletes they're thinking of

signing

on, they know what he does works better than much of what different consultants

bring to

the table.

***He's come to be known as " The Brain Doctor " in the sporting realm.

> Is this what you mean by the word you used? (This was Jung's meaning:)

> 3. persona The role that one assumes or displays in public or society; one's

public

image, as distinguished from the inner self.

***Some what. I really mean the overall common adjectives people might often

use in

describing you and your qualities as well as your own fair assessment or

description of

yourself- overall perception rather than tuning into to core temperment as MBTI

or BTI

does.

> Hi, Adrienne.

>

> " Adrienne G. " <duckblossm@> wrote:

***It's important to remember these are core temperment traits and the typing is

not

> intended to represent the entirety of ones personality or more accurately

said,

" persona " ,

> which includes temperment but also has almost as equally a lot that is

influenced

beyond

> genetic contribution and can change. Check out http://www.braintypes.com

as a

good

> place that shows most clearly that this area of human typology is 100%

genetically

> determined.

>

October 16, 2006

> TESTIMONY BEFORE THE FDA SCIENTIFIC ADVISORY COMMITTEE

> My name is Dr. Cheney. I am a general internist by training.

It has now been over eight years since I first became conscious of

this disorder as a distinct clinical entity. I watched in awe as

over 200 cases appeared over a span of six months in a small

community on the north shore of Lake Tahoe where I practiced in

1984.

>

The reason I include Dr Cheney's testimony of " watched in awe " is

because, just like all other doctors, it was a phenomenon that they

often characterized as " never seen anything like it before " .

Dr Cheney and Dr were different from other doctors though,

because they believed what they saw.

But what this means is that if someone asserts that CFS was common

and had a high degree of prevalence prior to the 1980's, that they

are probably not seeing the same " CFS " as those people who stated

that the emergence and nature of this particular illness was

completely outside their realm of professional or personal knowledge.

-

October 16, 2006

Re: CFS Personality Type Survey

Hi, Adrienne.

" Adrienne G. " <duckblossm@...> wrote:

>

> I think he has a way to go before he has proven anything by genetics.

***I thoroughly disagree. You'd need to look into it more, perhaps reading

one of his

books on relationships or sports like I've done and you'd see what I'm talking

about, it

becomes self evident in his writings and how they immediately give you real

world access

to those what those initialized traits empirically mean when looking at

people.

Says there are people who don't want him to succeed so he is keeping the

actual research

secret? Give me a break. I am always ready to be wrong, but sounds hokey to

me.

***I've seen postings on the net by a jealous college professor who teaches

psychology

who was severely knocking what Niednagel describes as braintyping and it was

obvious to

me this guy had not given him or his observations proper review or respect for

some very

impressive results they produce. Envy happens to the best of us and I think

some may

be envious of the big dollars Niednagel gets paid by top athletes for

performance coaching

and sports organizations for his observations about athletes they're thinking

of signing

on, they know what he does works better than much of what different

consultants bring to

the table.

***He's come to be known as " The Brain Doctor " in the sporting realm.

> Is this what you mean by the word you used? (This was Jung's meaning:)

> 3. persona The role that one assumes or displays in public or society; one's

public

image, as distinguished from the inner self.

***Some what. I really mean the overall common adjectives people might often

use in

describing you and your qualities as well as your own fair assessment or

description of

yourself- overall perception rather than tuning into to core temperment as

MBTI or BTI

does.

> Hi, Adrienne.

>

> " Adrienne G. " <duckblossm@> wrote:

***It's important to remember these are core temperment traits and the typing

is not

> intended to represent the entirety of ones personality or more accurately

said,

" persona " ,

> which includes temperment but also has almost as equally a lot that is

influenced

beyond

> genetic contribution and can change. Check out http://www.braintypes.com

as a

good

> place that shows most clearly that this area of human typology is 100%

genetically

> determined.

>

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

October 16, 2006

Hi, Kurt.

" Kurt Rowley " <kurtrowley@...> wrote:

> I also suspect that some of the INFJs here are actually ENFJs.

> Largely because of the social nature of these online groups. I don't

> believe that the 'I' type participates on these lists as much, due to

> the social exposure, although probably many are lurkers.

***I think you may be right about this.

In my own case, I am INFJ, and I was very shy and reluctant to participate in

> this or any other group, I lurked for a long time on several groups.

> So if anything, I believe the INFJ is LESS likely to participate in a

> group like this. What brings us here is a pressing need.

***This makes a lot of sense to my mind too. And that you come out INFJ seems

quite on

target now that you mention it(quite the rare bird you guys are and not

necessarily

chomping at the bit to be noticed given your predisposition, though I must say

the well

above ordinary level of conceptional volume you are able to take in and

comprehend,

given your brain's inherent make-up, and your concentration capacities with a

methodical

bent towards closure, aka, closing the deal on what's really going on in CFS and

what to do

about it, has much to contribute here).

***I've only personally met two INFJs in my life time that I am aware of(both

Ph.D.s in the

counseling biz and I think the author of the book, Prozac Backlash, Dr ph

Glenmullen

is one, given the way he expresses his ideas in writing and how he appeared to

me while

being interviewed on NBCs Today Show, FWIW). I used to think I was INFJ before

I looked

into braintyping and then saw for certain I have the ENFJ or FCAL braintype(It

actually

made a genuine difference to clarify this in this way).

But those who are natively ENFJs, I can see that they would be more likely to

> participate in a list like this, and given the CFS might score as an

> INFJ.

***Yes, I agree.

***

October 16, 2006

On 10/16/06, erikmoldwarrior <erikmoldwarrior@...> wrote:

>

> Interesting to play around with the concept of personality

> associations.

> But, in terms of causality, if the illness demonstrably shows the

> capacity to ignore it completely,

> it means the illness just plain doesn't care.

>

> Examing personality is kind of like interviewing survivors of a

> sunken ship to see if personality traits correspond to how well

> someone treads water.

> It probably does, but that has very little to do with how they

> wound up in the water.

> -

>

** OK, I read through the Cheney testimony, and I do not see support for

your statement that 'the illness demonstrably shows the capacity to ignore

it completely', with regard to personality associations. Unless Cheney or

someone else has run personality testing and attempt to correlate the

outcomes to CFS patients, the statement that 'the illness just plain doesn't

care' is unsupported. The fact that CFS is an awful and misunderstood

illness is clear from Cheney's statement, as well as our collective

experience. The fact that there are concrete physiological parameters

involving immune function is also clear. But physiological markers do not

rule out a personality association.

If CFS 'does not care' about personality, then we should see a normal

personality distribution among PWC. But that is not what the survey is

revealing among the group members. So the challenge is

not to try and debunk the data from the survey, the results are obvious. If

the survey just showed a small, marginal cluster, we could say it is

probably just measurement error. But the survey shows a huge clustering

that is over 20x higher than what is found in the general population (for

the INFJ type). So I think the challenge here is to try to explain these

results.

I am an open-minded patient-researcher and am not afraid of exploring ANY

relevant data that might shed light on the nature of CFS. I have explored

the mold hypothesis, and even am acting on it to the extent I can. I

explored the EMF hypothesis as well, and have acted on that. I have treated

Lyme. I am studying the methylation genetics / GSH depletion hypothesis.

Now there is a clear personality association and I plan to explore that as

well. In an illness as complicated as CFS I believe that a whole systems

approach is helpful, and the brain, and the way our brain responds to

illness, is certainly a relevant aspect of CFS. To the extent that

personality is correlated with brain genetics, there could clearly be

personalities that are more or less prone to certain illnesses. And that is

what some research is starting to show in a few other disease processes.

Consider for example the possibility that personality is partly determined

by the distribution of endorphin receptors in various parts of the brain.

This could set up differentiations in the reward sensation for different

ways of thinking, and could pre-dispose a person to utilize various regions

of the brain more and less frequently, producing respective personality

types. Now imagine that those same differences also influence

parasympathetic responses. And then add neurotoxins to that person's

nervous system. I don't know exactly how this type of bio-individuation

might lead to differential immune or detox or emotional responses, but

certainly there is a possible common basis for both a physiological and

personality response in the way the brain is genetically structured.

And regarding the sunken ship metaphor, how long someone can tread water may

make the difference between hanging on until help arrives, and drowning.

With CFS there may be a personality that simply is more vulnerable. Maybe

not everyone with CFS has that personality, but many may, and for those

people, strategies to help them 'tread water better' might make a big

difference.

--Kurt

October 16, 2006

" Kurt Rowley " <kurtrowley@...> wrote:

>

> If CFS 'does not care' about personality, then we should see a

normal personality distribution among PWC. But that is not what the

survey is revealing among the group members.

>

Participants in CFS groups - and the subset of those who respond to

the poll make this self selective group which possibly skews the

results. The epidemic cases have no such capacity to " self select "

and give a clearer indication of just who can fall prey to CFS.

The illness managed to target nine teachers using the same room and

half the girls basketball team in just one example of " not caring " .

There are many others, but this should not be necessary, as

the " exception disproves the rule " .

Now, what are the odds that an illness which inspires " awe " at

destroying peoples lives in a manner completely unfamiliar to

doctors and society can be driven or dependent upon a specific

personality type and yet find manifest in groups like this?

Why do people keep implicating stress, emotion, personality,

activity levels and individual " self inflicted " factors of negative

attitudes and/or drugs/alcohol abuse/smoking...

..when the illness that was called " CFS " managed to go through

groups of people and completely ignore these factors?

Didn't we learn from all the etiological examples in the past that

when an illness doesn't confine itself to temperament or character,

that these attributions to personality have always been mistaken?

Do we need research to determine if there is some kind

of " personality " that blames things on personality despite all the

exclusionary evidence that shows the illness easily transcends such

limitations?

Perhaps this is why emerging illness are always initially viewed as

psychological, no matter how many times history has shown that this

is the very last conclusion that people should be jumping to.

-

October 16, 2006

> > If CFS 'does not care' about personality, then we should see a

> normal personality distribution among PWC. But that is not what the

> survey is revealing among the group members.

>

> Participants in CFS groups - and the subset of those who respond to

> the poll make this self selective group which possibly skews the

> results. The epidemic cases have no such capacity to " self select "

> and give a clearer indication of just who can fall prey to CFS.

> The illness managed to target nine teachers using the same room and

> half the girls basketball team in just one example of " not caring " .

> There are many others, but this should not be necessary, as

> the " exception disproves the rule " .

Of course, that is possible, that this group is self-selective for a

given personality. If that is true, then we should see the same

pattern in other similar groups. Also, a controlled scientific survey

among a random selection of PWC would show a more normal personality

distribution. But we do not have that data, what we have is an

interesting result to one unscientific poll. My point is simply that

this bears some further exploration.

> Now, what are the odds that an illness which inspires " awe " at

> destroying peoples lives in a manner completely unfamiliar to

> doctors and society can be driven or dependent upon a specific

> personality type and yet find manifest in groups like this?

The poll shows a correlation between CFS and personality, but does not

lead to the conclusion that CFS is driven by or dependent on a

specific personality type. Correlation is not causation. There could

be a common explanation for both the personality and the tendency to

acquire CFS under sufficient triggering conditions. For example, a

genetic brain structure that tends to produce a given personality

might also tend to produce a given illness under sufficient

conditions. The two results, personality and illness, might be

largely independent, but stemming from the same cause. And the trigger

for the illness could be a neurotoxin event in combination with the

personality type, in fact that seems quite logical. If that is the

case, then this is another possible explanation as to why not everyone

became ill.

However, in the case of the large numbers on the girls soccer team,

please clarify. Are you saying that half of the team became PWC, and

had the illness that we still have today? And are you saying that

they are all still sick? Or did they all simply get a nasty mold,

virus or bacteria exposure?

> Why do people keep implicating stress, emotion, personality,

> activity levels and individual " self inflicted " factors of negative

> attitudes and/or drugs/alcohol abuse/smoking...

> ..when the illness that was called " CFS " managed to go through

> groups of people and completely ignore these factors?

I don't believe a correlation between personality and CFS is

necessarily self inflicted. Have you read this entire thread? There

is emerging evidence that personality is partly or maybe even largely

a physiological phenomenon. So we are not talking behavior here, nor

psychology. This may be mostly about physiology.

> Didn't we learn from all the etiological examples in the past that

> when an illness doesn't confine itself to temperament or character,

> that these attributions to personality have always been mistaken?

I can not answer this, but believe that the pendulum swings back and

forth. The explanations for illness are continually changing, there

never seems to be a last word.

> Do we need research to determine if there is some kind

> of " personality " that blames things on personality despite all the

> exclusionary evidence that shows the illness easily transcends such

> limitations?

Touche.

There probably is a blaming personality. But I have not seen the

exclusionary evidence, although that would be fairly easy to collect.

A controlled study where the real MBTI was administered to random PWC

would accomplish that with regard to the personality issue.

--Kurt

October 16, 2006

Hi Kurt and all,

Kurt

Thank you for this personality survey study.

I would like to mention that I retook the test trying to guess how I would

answer before I got severely sick(bed ridden state). I changed form P to J.

It seems that being severely sick and the transformation it brought to me

have changed me in that aspect.

Another note. Having so many J's in this group might be the reason of

frequent somewhat hot discussions.

I found another site that might be interesting for some of you on tests.

http://similarminds.com/personality_tests.html

best wishes.

Nil

October 16, 2006

Kurt-what I was trying to say in an earlier post on this thread is that

I believe many of the responders would have responded differently

pre CFS. I mean, how many really sick PWCs seek large groups of

people to be in, want to be in the middle of the room, would rather

go to a party than read a good book, etc?

The purpose of the survey is meritorious, but I just don't think you

can take the results seriously because you are trying to determine

what the personality type was *before* CFS rather than during CFS.

My personality has changed dramatically and I am not nearly as sick

as some of the list members based on their message about being

bedridden, etc. I think you would get many more extroverts if you

were able to go back in time and have the poll done pre-illness.

Mike C

>

> > > If CFS 'does not care' about personality, then we should see a

> > normal personality distribution among PWC. But that is not what

the

> > survey is revealing among the group members.

> >

> > Participants in CFS groups - and the subset of those who respond

to

> > the poll make this self selective group which possibly skews the

> > results. The epidemic cases have no such capacity to " self

select "

> > and give a clearer indication of just who can fall prey to CFS.

October 16, 2006

" Kurt Rowley " <kurtrowley@...> wrote:

> Of course, that is possible, that this group is self-selective for

a given personality. If that is true, then we should see the same

> pattern in other similar groups. Also, a controlled scientific

survey among a random selection of PWC would show a more normal

personality distribution. But we do not have that data, what we

have is an interesting result to one unscientific poll. My point is

simply that this bears some further exploration.

>

> The poll shows a correlation between CFS and personality, but does

not lead to the conclusion that CFS is driven by or dependent on a

> specific personality type. Correlation is not causation. There

could be a common explanation for both the personality and the

tendency to acquire CFS under sufficient triggering conditions.

However, in the case of the large numbers on the girls soccer team,

> please clarify. Are you saying that half of the team became PWC,

and had the illness that we still have today? And are you saying

that they are all still sick? Or did they all simply get a nasty

mold, virus or bacteria exposure?

>

> I don't believe a correlation between personality and CFS is

> necessarily self inflicted. Have you read this entire thread?

There is emerging evidence that personality is partly or maybe even

largely a physiological phenomenon. So we are not talking behavior

here, nor psychology. This may be mostly about physiology.

>

The explanations for illness are continually changing, there

> never seems to be a last word.

> --Kurt

Other groups may " self select " for a number of different reasons

and result in an inconsistent pattern in its individuals.

" Why didn't everyone become ill " is a question that presumes

everyone had the same exposure. Why doesn't everyone get Malaria,

TB, AIDS, or anything else? Who would speculate that if a cluster

of people in a building got E Coli or Hepatitis that any who did not

must have had some mental factors that made the difference?

Wouldn't people say it was just common sense that the sick

individuals were the ones who had the exposure?

As you say: " correlation is not causation " , but the epidemic

cohorts show that at least under certain conditions, there is no

correlation of personality traits to be found..

The Truckee teachers and basketball team members are still sick -

as Dr noted in his 1999 " original CFS cohort study " that

was reported on CNN, although some have had " substantial

improvements " .

I believe that there is no lack of exploration into the " CFS

personality " from any possible physiological changes or gene

alterations.

Professor Wessely, Kings College and the Nijmegen School of

Psychiatry have long been very intent on demonstrating such a

correlation on the presumption that despite protestations of people

claiming that they simply became ill - that such a connection must

surely exist.

I believe that when it comes to attributions of " hysteria " and

concepts of behavioral maladaptative processes that have been

historically applied inappropriately to emerging illnesses,

no " last word " is necessary to know that diseases that now have an

identifiable etiology can no longer be categorized as mental

illnesses as they once were - but never should have been.

In retrospect, there never was suitable evidence to formulate that

hypothesis, let alone pursue it with such vigor.

-

October 17, 2006

" Kurt Rowley "

> Also, most PWC today were not involved in a cluster. I believe

clusters have stronger triggers than what most PWC experience, so

clusters may not be good models for all forms of CFS in the

population today. Clusters are probably homogeneous triggers, such

as sick building syndrome, or a particularly nasty virus, a strong

EMF exposure, a communicable bacterial infection, etc. But what we

see on these groups seems to be the result of heterogeneous triggers

acting on a common genetic weakness.

>

People can't use the cluster cohorts as a model for illness only

when it suits them and then just dismiss them whenever they don't

fit their theory.

That is unless they make it clear the the " CFS " they are discussing

is " Unlike Original CFS " which was based upon people from these

cohorts.

How could a genetic weakness could have been so rare that nobody in

our experience had ever seen any illness like this before,

yet suddenly the same genetic weakness is suddenly so prevalent that

CFS bursts out in people of all ages in an epidemic.

This is kind of like Mendel crossing wrinkly peas with round peas

and having all of his peas turn round - including the old parent

peas that used to be wrinkly until the " YupPEA Flu " came through.

> > wrote: As you say: " correlation is not causation " , but the

epidemic cohorts show that at least under certain conditions, there

is no correlation of personality traits to be found..

> >

>Kurt wrote: Again, this is opinion. Unless you measure the

personality traits (actually we are talking about MBTI, which is a

temperment measure), there is no way to know whether this opinion

that there was no correlation with personality traits is correct.

Also, there could be common genetic factors in the subset of the

Truckee teachers and team members who have remained sick. And those

genetic traits could

> translate into both immunological and temperment groupings.

>

If everyone in a group gets sick, they don't have the opportunity

to insert personality profiles into the reason for being there.

The illness hit everyone in the group regardless and shows that CFS

is not subject to restrictions inherent to the hypothesis.

Despite intense scrutiny to find such a correlation, the teachers

and students were found to be just like all the other teachers and

students with no outstanding character differences.

Even if some personality type were somehow found to be genetically

susceptible - one would still have to ask why these genotypes failed

to manifest in an epidemic before if they had prior possession of

this weakness and were susceptible to so many disparate triggers.

> Correlation of MBTI type with an illness is not

> 'categorizing as mental illness'. Rather I believe it is a

> progressive exploration that supports a physiological, brain-based

> basis of CFS.

> --Kurt

What basis is there to even suspect that a heretofore unknown

illness no one recognized in any ancestral lines that can hit people

in groups regardless of gender, age, activity or stress levels would

target people whose susceptibility is manifested in a particular

personality type?

I thought this was beaten to death twenty years ago with the " Type

A " concept, which was shown to be utterly without foundation.

Is there some reason to investigate this based on any observation?

-

October 17, 2006

Hi, Kurt.

" Kurt Rowley " <kurtrowley@...> wrote:

.... I am running the MBTI survey right now on a large Lyme group, partly to

> address this issue, and so far the results mirror the responses from

> this group. That supports my idea that the MBTI score is consistent

> with a genetic typing that is over-represented in PWC and apparently

> PWL for some reason. I also asked a friend to take the online MBTI.

> He has CFS and is not involved in any kind of internet groups, no

> support groups for CFS, etc., and his MBTI was INFJ, which is the

> dominant group on this list so far. I admit this is not a lot of

> evidence, but it is something, and does suggest the finding here is

> not a fluke.

***Very very interesting. These poll results are now impressing me as a likely

significant

genetic and physiologic finding for CFS, particularly given that you see these

two different

groups results side by side and they mirror each others dramatic indication that

the INFJ

trait combination in the MBTI view(or the ENFJ trait combination I suspect most

would be

shown to be in the BTI view) are most susceptible to these neurotoxic

injury/glutathione

status effected chronic illnesses.

***It strikes me that Jon Neidnagel of BTI would be interested in seeing this

data despite

its not being a controlled scientific study. Upon seeing this data, I have the

hunch that he

might be willing to share his empirical findings in braintyping that may be

potentially

relevant to this area of investigation for CFS, even including his data on

population

distribution percentages for all 16 types.

***According to the braintypes.com website, he has recently sponsored or been

integral to

at least three brain mapping studies connected to individual cerebral traits and

another

study he is supporting appears to be looking for serum protein biomarkers that

can

distinguish each braintype. I suggest you email or mail him these polls

results with a

request for general feedback or answers to specific questions you might have of

him.

***Here are some comments from a BTI webpage and it's url, where the comments

are

made in their original context, that lead me to suggest that the BTI might be

quite

receptive to this CFS data:

" ... Brain mapping/imaging (both invasive and non-invasive) and biomechanical

studies on

the various Brain Types (BT) continue and are providing significant

results....BT will have

an appreciable future impact on how brain scans and neurological data are

interpreted....A

hindrance to making comprehensive sense of brain-mapping/imaging in the 21st

century

has been the lack of awareness as to individual cerebral differences. "

http://www.braintypes.com/btispring06.htm

***If there is any further input I might be able to provide in supporting such a

communication to the BTI should you chose to do so, please don't hesitate to

ask. I have

been studying braintyping, readily applying it for four years with striking

outcomes, one

example being that I observed that Dr Cheney is an INTP and that Rich V. is an

INTJ(both

types noted for consistent, exceptional, and sometimes history making

contributions in

the hard sciences, which said to me that they may be good horses with better

odds than

ordinary to bet on that some of their observations about CFS may be right on

target, this

aside the fact that they both have Ph.D.s and are well into years of experience

enough not

to fear them being completely " green " ).

October 17, 2006

That link to BTI is interesting, particularly the information about

differential brain usage by brain type. So given the fact that we

know that CFS often involves brain lesions, if those lesions tend to

be patterned in a specific area of the brain, then people with a brain

or MBTI type that heavily uses that area would probably suffer the

most. Makes sense.

And yes, I am definitely interested in pursuing this further. If you

have contacts with BTI, that may be quite helpful, thanks for the

offer. Please feel free to backchannel me about that.

--Kurt

> ... I am running the MBTI survey right now on a large Lyme group,

partly to

> > address this issue, and so far the results mirror the responses from

> > this group. That supports my idea that the MBTI score is consistent

> > with a genetic typing that is over-represented in PWC and apparently

> > PWL for some reason. I also asked a friend to take the online MBTI.

> > He has CFS and is not involved in any kind of internet groups, no

> > support groups for CFS, etc., and his MBTI was INFJ, which is the

> > dominant group on this list so far. I admit this is not a lot of

> > evidence, but it is something, and does suggest the finding here is

> > not a fluke.

>

> ***Very very interesting. These poll results are now impressing me

as a likely significant

> genetic and physiologic finding for CFS, particularly given that you

see these two different

> groups results side by side and they mirror each others dramatic

indication that the INFJ

> trait combination in the MBTI view(or the ENFJ trait combination I

suspect most would be

> shown to be in the BTI view) are most susceptible to these

neurotoxic injury/glutathione

> status effected chronic illnesses.

>

> ***It strikes me that Jon Neidnagel of BTI would be interested in

seeing this data despite

> its not being a controlled scientific study. Upon seeing this data,

I have the hunch that he

> might be willing to share his empirical findings in braintyping that

may be potentially

> relevant to this area of investigation for CFS, even including his

data on population

> distribution percentages for all 16 types.

>

> ***According to the braintypes.com website, he has recently

sponsored or been integral to

> at least three brain mapping studies connected to individual

cerebral traits and another

> study he is supporting appears to be looking for serum protein

biomarkers that can

> distinguish each braintype. I suggest you email or mail him these

polls results with a

> request for general feedback or answers to specific questions you

might have of him.

>

> ***Here are some comments from a BTI webpage and it's url, where the

comments are

> made in their original context, that lead me to suggest that the BTI

might be quite

> receptive to this CFS data:

>

> " ... Brain mapping/imaging (both invasive and non-invasive) and

biomechanical studies on

> the various Brain Types (BT) continue and are providing significant

results....BT will have

> an appreciable future impact on how brain scans and neurological

data are interpreted....A

> hindrance to making comprehensive sense of brain-mapping/imaging in

the 21st century

> has been the lack of awareness as to individual cerebral differences. "

>

> http://www.braintypes.com/btispring06.htm

>

> ***If there is any further input I might be able to provide in

supporting such a

> communication to the BTI should you chose to do so, please don't

hesitate to ask. I have

> been studying braintyping, readily applying it for four years with

striking outcomes, one

> example being that I observed that Dr Cheney is an INTP and that

Rich V. is an INTJ(both

> types noted for consistent, exceptional, and sometimes history

making contributions in

> the hard sciences, which said to me that they may be good horses

with better odds than

> ordinary to bet on that some of their observations about CFS may be

right on target, this

> aside the fact that they both have Ph.D.s and are well into years of

experience enough not

> to fear them being completely " green " ).

>

October 18, 2006

Hi, Kurt.

" Kurt Rowley " <kurtrowley@...> wrote:

>That link to BTI is interesting, particularly the information about

> differential brain usage by brain type. So given the fact that we

> know that CFS often involves brain lesions, if those lesions tend to

> be patterned in a specific area of the brain

***The lesioning seems to be predominantly in the right brain- in, near and

around the

right basal ganglia and right hippocampus. Even a respected London hospital in

the UK

found such evidence in studying ME/CFS sufferers, though their enthusiasm for

the

physical finding was clearly muted, given I suspect from HHS policy and the UKs

attitude

toward this diagnosis in general.

, then people with a brain

> or MBTI type that heavily uses that area would probably suffer the

> most. Makes sense.

***I literally agree, but to add a bit more insightful detail in intepreting

this I think its

important to remind that your two polls using MBTI show a very large number with

the " J "

trait having CFS and CLD. " J " means left brained dominance while " P " means

right brained

dominance in the BTI view.

***So I suggest, given the evidence of predominant right side brain injury and

dysfunction

in CFS and this area of the brain considered as weaker or the one with the least

efficient

pathways according to braintyping, in left brain dominant individuals, CFS may

be a

pathology that takes advantage or renders dysfunction in our neuroanatomic weak

spot,

never mind biochemistry for a moment.

***And just to add a bit of caution and though we on these lists who do these

polls are

quite sick and badly suffering, it could be those with right brain dominance who

have CFS

or CLD are more often not healthy enough to be online or clear thinking enough

when on

to participate in these polls. I have reason to believe, given the greater

efficiency in their

right brains, those with right brain dominance might be more resilient to CFS or

CLD, but

the evidence that this pathology is hitting precisely where they live and what

this might do

should not be overlooked.

> And yes, I am definitely interested in pursuing this further. If you

> have contacts with BTI, that may be quite helpful, thanks for the

> offer. Please feel free to backchannel me about that.

***Will do.

***

<davidhall@> wrote:

another study he is supporting appears to be looking for serum protein

> biomarkers that can

> > distinguish each braintype. I suggest you email or mail him these

> polls results with a

> > request for general feedback or answers to specific questions you

> might have of him.

October 18, 2006

> " Kurt Rowley "

> > Also, most PWC today were not involved in a cluster. I believe

> clusters have stronger triggers than what most PWC experience, so

> clusters may not be good models for all forms of CFS in the

> population today. Clusters are probably homogeneous triggers, such

> as sick building syndrome, or a particularly nasty virus, a strong

> EMF exposure, a communicable bacterial infection, etc. But what we

> see on these groups seems to be the result of heterogeneous triggers

> acting on a common genetic weakness.

On 10/17/06, erikmoldwarrior <erikmoldwarrior@...> wrote:

> >

>

> People can't use the cluster cohorts as a model for illness only

> when it suits them and then just dismiss them whenever they don't

> fit their theory.

Why? Why is sporadic illness - that satisfies, e.g. the Canadian

Guidelines - different than cluster illness? It might argue a

different cause but the end-state looks the same.

> That is unless they make it clear the the " CFS " they are discussing

> is " Unlike Original CFS " which was based upon people from these

> cohorts.

I thought we were discussing ME, which is recognized in both epidemic

and sporadic forms.

> How could a genetic weakness could have been so rare that nobody in

> our experience had ever seen any illness like this before,

> yet suddenly the same genetic weakness is suddenly so prevalent that

> CFS bursts out in people of all ages in an epidemic.

See http://www.name-us.org/ResearchPages/ResEpidemic.htm#M.E._Epidemics -

52 oubreaks prior to 1984. Yes they are epidemics - no, this disease

was not unknown in 1984. In '88, Parrish, Hyde and Shekelov agreed it

was ME and walked out of the Holmes defintion when Strauss insisted on

the name CFS. Kurt has made a good hypothesis above to cover

epidemics that hit lots of people (still not everyone, though - what

about the other half of that basketball team?) and sporadic cases that

might be pickier.

> If everyone in a group gets sick, they don't have the opportunity

> to insert personality profiles into the reason for being there.

Kurt addressed this , as quoted above.

, I am sorry that you've gotten big doses of AIYH over the years,

but that doesn't mean that mental/emotional factors must be completely

ignored. They just have to be in their rightful place - a possible

co-factor in a disease that is ultimately dysfunction of neurological,

immune, and endocrine systems.

- Bob Niederman

October 18, 2006

" bob niederman " wrote:

> Why? Why is sporadic illness - that satisfies, e.g. the Canadian

> Guidelines - different than cluster illness? It might argue a

> different cause but the end-state looks the same.

>

> I thought we were discussing ME, which is recognized in both

epidemic and sporadic forms.

>

> , I am sorry that you've gotten big doses of AIYH over the

years, but that doesn't mean that mental/emotional factors must be

completely ignored. They just have to be in their rightful place -

a possible co-factor in a disease that is ultimately dysfunction of

neurological, immune, and endocrine systems.

>

> - Bob Niederman

>

I didn't say sporadic was different than cluster illness.

I said that if you formulate a hypothesis that depends on individual

characteristics of extreme rarity - that automatically excludes the

cohorts in which such a phenomenon would be astronomically

improbable. The very clue that led Polly Murray to bring attention

to Lyme disease.

And these cluster outbreaks were the very people used as prototypes

for CFS.

So if a hypothesis depends upon and can only be reconciled with

individualistic factors, it excludes itself from CFS.

Again, Polly Murrays observation of " genetic JRA " that hit Lyme

Conn. in " impossible " numbers.

When I say CFS, as an Incline survivor, you may be assured that I

am describing " original CFS " or ME/CFS Canadian.

Any degree to which this illness may be corrected by

mental/emotional factors is the degree to which it IS a

mental/emotional illness.

The ME/CFS phenomenon that I observed is a horrifying physiological

illness that has emotional lability as a consequence - not as a

cause. Yes I can ignore all assertions of mental causality, they

have no place in this illness.

When I say this illness was unknown, I mean it was unknown by all

who saw it. The statements of Dr Cheney, Dr , Dr Bell, Dr

Rhyll and all who saw this indicate clearly that this was completely

outside their experience and knowledge.

Royal Free was similarly unknown at the time.

We had people crossing the world and finding no one who could

express the circumstances of the illness to them.

Doctors didn't know it. Our families didn't know it. The CDC/NIH

didn't know it. Our Grandparents had never seen anything like it.

After all these years, the number of doctors in the U.S. who have

since expressed their familiarity can almost be counted on one hand.

It has been amazing to see years of " CFS can't exist because no one

has ever seen anything like this - and it could not have gone

unnoticed " replaced with the amazing concept that " CFS has always

existed and is so common that it is unnoticeable as being anything

out of the ordinary " .

We are talking about schoolchildren who CANNOT STAND UP.

Not something you forget.

-

October 18, 2006

It seems to me that the reason this illness and many others weren't known by our

grandparents, or even our parents really is because they were living in a time

without the toxic overload we experience now. In the civil war more soldiers

died of infection from wounds than the actual wounds themselves. In other words

the body was bombarded and opportunistic illness set in. Then it was a matter

of a different bombardment. Now its metals, chemicals, fumes, plastics and the

list goes on. We're wounded and illness follows. I'm sure there's a genetic

component to it as pointed out about people that can ward off HIV. I have

friends that have Hep C for example. She is very ill and going through the

interferon treatment while her partner of 25 years who obviously contracted it

from her or vise versa has the antibodies, but no viral load AT ALL. His immune

system just tossed it out. Believe me her personality is changing as she

becomes progressively worse. Being this sick can wack you out.

Edy