Re: You might find this article of interest

[Guest guest]

Hi Tom,

I would like to ask if you are sick, how severely, for how long, and do you have

ME/CFIDS/CFS or FM?

Comments on your post:

I majored in Child Psychology in College decades ago, and have work and Life

Experience in early childhood education, directly worked with young children and

adolescents, Have done Rape Survivor Counseling and Advocacy, Group Facilitator

at Rehab Center for Addicts and Alcoholics, and other experience in populations

of persons with Mental Illness, Ex-Convicts, Combat Veterans, Addicts and

Alcoholics, long term Homeless, and other trauma survivors.

Plus have survived several traumas myself.

Just to say that trauma and traumatised persons, the field of Psychology, and

the well being of children are not unfamiliar topics to me, and even are near

and dear to my heart.

There may very well be risks to health to survivors of trauma to the body and

mind.

There are some problems I have with your topic:

A) Theories of Psychological origins of CFS {Chidhood abuse and other}, is not

in any way whatsoever a new vista of study. The Psychological field has been the

recipient of the majority of funds and publishings on our disease for the last 2

decades...to the detriment, obscuring, and dismissing of hard, Biomedical,

Pathogen, and Chemical/Toxin findings by Prestigious Scientists of the US and

World.

The ACE studies which are a collaboration of Kaiser Permanente, the CDC, and

Emory University, have been going on for 7 years, and continuing, with such

follow-up planned as patients' " utilization of Pharamacies/Pharmaceuticals,

cause of death, and other surveliance.

C) The theories behind these studies include

1) " In other words, the ACE Study documents the conversion of traumatic

emotional experiences in childhood into organic diseases later in life. "

2) The adoption of HIGH RISK HEALTH *BEHAVIORS* by childhood and other truama

survivors as being the cause of disease later in life.

D) Psychologically based behaviors as cause and/or perpetution of ME/CFIDS/CFS

are the basis of Psychological Intervention...specifically Cognitive Behaviorial

Therapy (CBT) ...changing one's dysfunctional thinking....as treatment. AS a

matter of fact, studies that sing the praises of CBT, claim it to be the ONLY

effective and recommended treatment for ME/CFS.

E) With emphasis, and even total domination of funds, studies, and publishings

on behaviorial choices and interventions on the ME/CFS population, where does

this leave Virally and Chemical/Toxin induced ME/CFS?

The CDC recommends against most testing for CFS.

What kind of responsible Government and Medical Profession ignore Viral

Epidemics and Chemical Poisoning of it's population?

WHEN will the investigation and Accountability of these be fully funded,

enacted, and publicised?

F) I don't know what the ACE studies say about ME/CFS itself, but it all sounds

strangely familiar to the last 2 decades of Behavior-as-cause, Psychological

Intervention/CBT as-only-effective-treatment that we have been subjected to ad

nauseum. Exploding into larger than ever multi million dollar industry.

G) The CDC knowingly and willingly systematically ignored the Epidemic of ME/CFS

which peaked in the mid 80s, leaving 800,000 to 1 Million patients disabled,

severely suffering, and in some cases...dying...with NO MEDICAL INTERVENTION OR

TREATMENT, OR Public/Physician Education.

The CDC/Department in charge of CFS has been known to mock CFS patients, the

dedicated Physicians who have treated us, and (CDC) were found guilty in

Congressional Hearings of Misappropriation of Millions of dollars of CFS

Research funds, assuring that promising studies begun and not even begun were

and are dead in the water.

Some of the very same Employees remain in charge, and have also in recent times,

indicated that CBT is the promising treatment of choice planned for us.

H) The CDC has also ignored patient and Physician calls to change the name and

definition of CFS to the more accurate Myalgic Encephalomyelitis (ME). Or to

recognise the Canadian Case Definition of ME/CFS crafted by a team of

Internationally recognised experts.

Instead, have continued to systematically weaken and water down the CDC/CFS

Definition to a wide

umbrella of unrelated physical and psychological conditions.

That this research and recommendations come not only from them, but the HMO of

Kaiser Permanente, does not inspire confidence for my future health.

{Tho the true prevention of childhood abuse and other trauma, and medical

disease, is certainly a worthy endeavor}

I) In the above populations of traumatised persons, I have seen no higher

incidence of severe ME/CFIDS/CFS than the rest of the population. AS a matter of

fact, for whatever reason, the numbers afflicted appear to be lower.

Not that we have any way of officially knowing, as long as Psychological and

non- pathogen/chemical studies dominate the Research.

So, in all due respect, Tom, this is what I have to say about that.

Sincerely,

Katrina

Sudden Viral Onset ME/CFIDS/CFS/FM 1985 at age 36, w/multiple complications

following, none of which were present previously.

>

> There is a very large study going on that sheds some light on

> conditions like CFS and FM. It is called the ACE Study which stands

> for Adverse Childhood Diseases. The study looks at the correlation

> between unresolved traumas in childhood and adult health problems.

> What they discovered in this study of over 17,000 participants is that

> there is a graded correlation between the number of categories of

> Adverse Childhood Expereinces someone has experienced with a whole

> host of health problems in adult life. There is a facinating article

> of the study at -

> http://xnet.kp.org/permanentejournal/winter02/goldtolead.html.

>

> After reading this article I contacted Dr. Felitti and have a lengthy

> meeting with him. During this meeting he mentioned that he felt that

> the ACE play a very significant role in FM. This study opens up a

> whole new vista of possibilites to be explored in finding ways to help

> people resolve the ACE.

>

> I hope you enjoy the article,

>

> Tom Stone

>

[Guest guest]

I didnt look at the stuff at the link but I do believe in my case

that the major stress I went throu as a child (I went throu a very

bad childhood) and throu out my early adult years..may of predisposed

me to CFS eg adrenal burn out or something. Making me more

susceptable to the EBV and the CFS which happened then many years

later.

Stress with this illness is my biggest trigger for major relapses

and why Im currently very sick again right now.

>

> There is a very large study going on that sheds some light on

> conditions like CFS and FM. It is called the ACE Study which stands

> for Adverse Childhood Diseases. The study looks at the correlation

> between unresolved traumas in childhood and adult health problems.

> What they discovered in this study of over 17,000 participants is

that

> there is a graded correlation between the number of categories of

> Adverse Childhood Expereinces someone has experienced with a whole

> host of health problems in adult life. There is a facinating article

> of the study at -

> http://xnet.kp.org/permanentejournal/winter02/goldtolead.html.

>

> After reading this article I contacted Dr. Felitti and have a

lengthy

> meeting with him. During this meeting he mentioned that he felt that

> the ACE play a very significant role in FM. This study opens up a

> whole new vista of possibilites to be explored in finding ways to

help

> people resolve the ACE.

>

> I hope you enjoy the article,

>

> Tom Stone

>

[Guest guest]

I think that its also quite probable that the psychological stressors in the

person's past may have been caused by the same stressors that caused the

disease.. for example, a toxin like toxic mold or lead or mercury in their

childhood home may have caused both a parent's illnesses (which caused them

to lose home or/and family to break up, siblings to die, etc) and the

person's later illness.. and none of it may have ever been properly

diagnosed..

Its all logical.. but the cause of these illnesses may be complex - but

doesn't it stand to reason that incredibly powerful poisons like

trichothecene or ochratoxin or endocrine disruptors or lead or mercury don't

mix well into environments where people unsuspectingly live? Even if poor

people have lived with them - things such as peeling lead paint - for a long

time, historically.

That they would have life-altering consequences for them...and their

families, that would stretch on for generations?

[Guest guest]

What I am getting at is that we seem to live, in a sense, by the law of the

jungle in that if you get sick, you lose your job, and then your health

insurance, and then any equity you have, then you go deeply into debt which

may in our society mean you fall off the edge of the cliff figuratively, you

might be ostracized by your old freinds or family, start drinking, or you

get divorced or break up, lose whatver means you have of supporting yourself

like your appearance or good teeth, your poverty and chronic illnesses may

prevent your children from getting educations which means they wont get good

jobs and might be forced to join the military and get killed in wars or have

their mind destroyed by the heartbreak of floating from one dead end job to

another or become alcoholics or drug addicts, or get involved with crime

because they could not find good, permanent work with benefits at any wage,

etc...

Sort of a vicious circle...

[Guest guest]

If there is any validity to the ACE study and CFS, that would be

*very* coincidental that so many of the residents of Incline Village

and Truckee had 'childhood trauma'. And let us be perfectly clear

that the kind of trauma that this study is referring to is

emotional, not physical as in an injury. Therefore, the obvious

treatment would be psychological or CBT, without addressing all the

proven immune, cardiovascular and other irregularities found in

CFS. Tom, I think if you continue this thread without pointing out

some concrete physiological abnormalities, you will find that it

upsets a lot of people.

The other thing is selection bias. Children who were traumatized

probably didn't have the same level of health care as in good diet,

quick treatment of infections, etc. that non-traumatized children

had, i.e., less parental concern. That could account for all the

correlation between ACE and later poor health. Without being harsh,

the parents who allowed ACE to occur were probably of lower IQ,

this is a controversial but probably a true statement,

and I have observed that there is a very high level of education on

this list. The ACE study is interesting, however, just not relevant

to CFS, IMO.

Mike C

>

> There is a very large study going on that sheds some light on

> conditions like CFS and FM. It is called the ACE Study which stands

> for Adverse Childhood Diseases. The study looks at the correlation

> between unresolved traumas in childhood and adult health problems.

> What they discovered in this study of over 17,000 participants is

that

> there is a graded correlation between the number of categories of

> Adverse Childhood Expereinces someone has experienced with a whole

> host of health problems in adult life. There is a facinating

article

> of the study at -

> http://xnet.kp.org/permanentejournal/winter02/goldtolead.html.

>

> After reading this article I contacted Dr. Felitti and have a

lengthy

> meeting with him. During this meeting he mentioned that he felt

that

> the ACE play a very significant role in FM. This study opens up a

> whole new vista of possibilites to be explored in finding ways to

help

> people resolve the ACE.

>

> I hope you enjoy the article,

>

> Tom Stone

>

[Guest guest]

" yakcamp22 " <yakcamp22@...> wrote:

And let us be perfectly clear

> that the kind of trauma that this study is referring to is

> emotional, not physical as in an injury. Therefore, the obvious

> treatment would be psychological or CBT, without addressing all the

> proven immune, cardiovascular and other irregularities found in

> CFS.

> Mike C

If the psych-theory doesn't encompass the facts, as in " But there

was no Childhood Trauma! " , psychologizers simply broaden their

definition until it does.

Like " Imagined Trauma " in which the child creates a " beliefsystem "

in which they believe themselves to be traumatized - regardless of

whether they were actually subjected to " empirically verifiable "

trauma.

You can't prove the child isn't " hiding " some internalized

perception of trauma, so the mere absence of " real trauma " is not

considered by psychologizers to be relevant or capable of disproving

the concept.

I can't believe that after all these years, these wild mental

meanderings from psycho-terroris... " theorists " are received with

anything but laughter.

-

[Guest guest]

Mike,

Whenever we get onto the topic of psychology we tend to think and

respond in " either/or " mode. Why can't we have a " yes/and " theory?

It has been shown that any childhood abuse, either emotional

and/or physical affects the adrenals adversely, usually for life.

This would ultimately affect the immune system, as we all know.

Then would open the person to all sorts of viral and bacterial

onsloughts. I am not saying that psychological treatment is the

answer nor necessarily indicated, but, that trauma in childhood

could be one stressor on the physical body setting some of us up for

CFS.

I totally disagree with your comment that children of abuse come

from families of lower IQ. Abuse and trauma occur at all levels of

financial and educational situations. Abuse and neglect know no

boundries. One can be fed quite well, yet suffer continual emotional

abuse.

Emotional abuse is more vicious than physical abuse in that there

are no scars for others to see. This results in a continual fight or

flight response which keeps the adrenals in stress mode. And the

recipient of such treatment often disbelieves their own perceptions,

causing more stress.

> >

> > There is a very large study going on that sheds some light on

> > conditions like CFS and FM. It is called the ACE Study which

stands

> > for Adverse Childhood Diseases. The study looks at the

correlation

> > between unresolved traumas in childhood and adult health

problems.

> > What they discovered in this study of over 17,000 participants

is

> that

> > there is a graded correlation between the number of categories of

> > Adverse Childhood Expereinces someone has experienced with a

whole

> > host of health problems in adult life. There is a facinating

> article

> > of the study at -

> > http://xnet.kp.org/permanentejournal/winter02/goldtolead.html.

> >

> > After reading this article I contacted Dr. Felitti and have a

> lengthy

> > meeting with him. During this meeting he mentioned that he felt

> that

> > the ACE play a very significant role in FM. This study opens up a

> > whole new vista of possibilites to be explored in finding ways

to

> help

> > people resolve the ACE.

> >

> > I hope you enjoy the article,

> >

> > Tom Stone

> >

>

[Guest guest]

Hi Mike,

You make some great points. however....

>>>Without being harsh,

the parents who allowed ACE to occur were probably of lower IQ,<<<<

This is a stereotype and myth. Abuse and neglect occur across all economic,

racial and educational lines.

So do stable family environments.

Katrina

> >

> > There is a very large study going on that sheds some light on

> > conditions like CFS and FM. It is called the ACE Study which stands

> > for Adverse Childhood Diseases. The study looks at the correlation

> > between unresolved traumas in childhood and adult health problems.

> > What they discovered in this study of over 17,000 participants is

> that

> > there is a graded correlation between the number of categories of

> > Adverse Childhood Expereinces someone has experienced with a whole

> > host of health problems in adult life. There is a facinating

> article

> > of the study at -

> > http://xnet.kp.org/permanentejournal/winter02/goldtolead.html.

> >

> > After reading this article I contacted Dr. Felitti and have a

> lengthy

> > meeting with him. During this meeting he mentioned that he felt

> that

> > the ACE play a very significant role in FM. This study opens up a

> > whole new vista of possibilites to be explored in finding ways to

> help

> > people resolve the ACE.

> >

> > I hope you enjoy the article,

> >

> > Tom Stone

> >

>

[Guest guest]

Hi Katrina,

I sure don't believe my childhood trauma " gave " me this disease, but- can't you

imagine that the constant stress, producing elevated cortisol year after year,

might jam up the body for good? A pediatrician I knew said there was a study

showing that once cortisol levels got elevated through trauma, they never went

back down to normal again.

As do many survivors, I engaged in plenty of high-risk behaviors-until I got

real sick, in fact. In fact, although it did not " give " me a disease either,

using LSD triggered the beginning of my downfall. The one thing it clearly did,

was mess with my metabolism big time-never mind the details. That's when I

became clearly symptomatic-in retrospect, of course. With the help of marijuana,

(it always immobilized me and made me not aware of and not caring about where I

was at healthwise, or function-wise), I immediately adjusted my lifestyle to

accommodate the weird limits I was experiencing, and so staved off full blown

disability for many years.

If anyone wants to say all this means I don't " really " have M.E, well too bad

for your poor mind. I really do, believe me. It is not something else, and it is

not AIMM.

Adrienne

Re: You might find this article of interest

Hi Tom,

I would like to ask if you are sick, how severely, for how long, and do you

have ME/CFIDS/CFS or FM?

Comments on your post:

I majored in Child Psychology in College decades ago, and have work and Life

Experience in early childhood education, directly worked with young children and

adolescents, Have done Rape Survivor Counseling and Advocacy, Group Facilitator

at Rehab Center for Addicts and Alcoholics, and other experience in populations

of persons with Mental Illness, Ex-Convicts, Combat Veterans, Addicts and

Alcoholics, long term Homeless, and other trauma survivors.

Plus have survived several traumas myself.

Just to say that trauma and traumatised persons, the field of Psychology, and

the well being of children are not unfamiliar topics to me, and even are near

and dear to my heart.

There may very well be risks to health to survivors of trauma to the body and

mind.

There are some problems I have with your topic:

A) Theories of Psychological origins of CFS {Chidhood abuse and other}, is not

in any way whatsoever a new vista of study. The Psychological field has been the

recipient of the majority of funds and publishings on our disease for the last 2

decades...to the detriment, obscuring, and dismissing of hard, Biomedical,

Pathogen, and Chemical/Toxin findings by Prestigious Scientists of the US and

World.

The ACE studies which are a collaboration of Kaiser Permanente, the CDC,

and Emory University, have been going on for 7 years, and continuing, with such

follow-up planned as patients' " utilization of Pharamacies/Pharmaceuticals,

cause of death, and other surveliance.

C) The theories behind these studies include

1) " In other words, the ACE Study documents the conversion of traumatic

emotional experiences in childhood into organic diseases later in life. "

2) The adoption of HIGH RISK HEALTH *BEHAVIORS* by childhood and other truama

survivors as being the cause of disease later in life.

D) Psychologically based behaviors as cause and/or perpetution of ME/CFIDS/CFS

are the basis of Psychological Intervention...specifically Cognitive Behaviorial

Therapy (CBT) ...changing one's dysfunctional thinking....as treatment. AS a

matter of fact, studies that sing the praises of CBT, claim it to be the ONLY

effective and recommended treatment for ME/CFS.

E) With emphasis, and even total domination of funds, studies, and publishings

on behaviorial choices and interventions on the ME/CFS population, where does

this leave Virally and Chemical/Toxin induced ME/CFS?

The CDC recommends against most testing for CFS.

What kind of responsible Government and Medical Profession ignore Viral

Epidemics and Chemical Poisoning of it's population?

WHEN will the investigation and Accountability of these be fully funded,

enacted, and publicised?

F) I don't know what the ACE studies say about ME/CFS itself, but it all

sounds strangely familiar to the last 2 decades of Behavior-as-cause,

Psychological Intervention/CBT as-only-effective-treatment that we have been

subjected to ad nauseum. Exploding into larger than ever multi million dollar

industry.

G) The CDC knowingly and willingly systematically ignored the Epidemic of

ME/CFS which peaked in the mid 80s, leaving 800,000 to 1 Million patients

disabled, severely suffering, and in some cases...dying...with NO MEDICAL

INTERVENTION OR TREATMENT, OR Public/Physician Education.

The CDC/Department in charge of CFS has been known to mock CFS patients, the

dedicated Physicians who have treated us, and (CDC) were found guilty in

Congressional Hearings of Misappropriation of Millions of dollars of CFS

Research funds, assuring that promising studies begun and not even begun were

and are dead in the water.

Some of the very same Employees remain in charge, and have also in recent

times, indicated that CBT is the promising treatment of choice planned for us.

H) The CDC has also ignored patient and Physician calls to change the name and

definition of CFS to the more accurate Myalgic Encephalomyelitis (ME). Or to

recognise the Canadian Case Definition of ME/CFS crafted by a team of

Internationally recognised experts.

Instead, have continued to systematically weaken and water down the CDC/CFS

Definition to a wide

umbrella of unrelated physical and psychological conditions.

That this research and recommendations come not only from them, but the HMO

of Kaiser Permanente, does not inspire confidence for my future health.

{Tho the true prevention of childhood abuse and other trauma, and medical

disease, is certainly a worthy endeavor}

I) In the above populations of traumatised persons, I have seen no higher

incidence of severe ME/CFIDS/CFS than the rest of the population. AS a matter of

fact, for whatever reason, the numbers afflicted appear to be lower.

Not that we have any way of officially knowing, as long as Psychological and

non- pathogen/chemical studies dominate the Research.

So, in all due respect, Tom, this is what I have to say about that.

Sincerely,

Katrina

Sudden Viral Onset ME/CFIDS/CFS/FM 1985 at age 36, w/multiple complications

following, none of which were present previously.

>

> There is a very large study going on that sheds some light on

> conditions like CFS and FM. It is called the ACE Study which stands

> for Adverse Childhood Diseases. The study looks at the correlation

> between unresolved traumas in childhood and adult health problems.

> What they discovered in this study of over 17,000 participants is that

> there is a graded correlation between the number of categories of

> Adverse Childhood Expereinces someone has experienced with a whole

> host of health problems in adult life. There is a facinating article

> of the study at -

> http://xnet.kp.org/permanentejournal/winter02/goldtolead.html.

>

> After reading this article I contacted Dr. Felitti and have a lengthy

> meeting with him. During this meeting he mentioned that he felt that

> the ACE play a very significant role in FM. This study opens up a

> whole new vista of possibilites to be explored in finding ways to help

> people resolve the ACE.

>

> I hope you enjoy the article,

>

> Tom Stone

>

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.

[Guest guest]

yakcamp22@> wrote:

> that would be *very* coincidental that so many of the residents of

Incline Village and Truckee had 'childhood trauma'.

>

The indications are that people who believe their illness was caused

by stress are making the same flawed association that persisted so

many years with ulcers.

The chronic inflammation from the infection lowered the threshold of

stress tolerance until it appeared that even mild forms of stress were

devastating, even to the point where people claimed that such things

as having a " bad job " could " cause ulcers " .

And psychologizers were ever-present and ready to reinforce this

reversed cause-effect relationship.

When ulcers showed up in children of parents who had ulcers,

the " genetic " buzzward was invoked, with similar careless disregard

for the simple concept that infections can be passed in families.

Once the association is firmly fixed, only extraordinary " proofs " are

capable of dislodging the entrenched dogma, and even then, acceptance

of the accurate paradigm takes many years, as Max Planck observed.

All it takes for these unfounded associations to persist as " truths "

is the willingness to disregard all the exceptions as " flukes " .

-

[Guest guest]

Hi ,

>>>>Whenever we get onto the topic of psychology we tend to think and respond in

" either/or " mode. Why can't we have a " yes/and " theory?<<<<<

We have serious questions with

Emotions/behaviors-as-cause/perpetuation-of-ME/CFS theories, because they never

result in " yes/and " treatment.

They lead to one place and one place only. The attempt to catagorize the disease

and it's course as ruled by emotions/behavior, never pathogens, chemicals,

environment, and needing one treatment...Cognitive Behavorial Therapy...changing

your thinking that you have a serious disease at all; plus Graded Exercise

Therapy...in a manner that is totally contraindicated by our own previous

attempts, and the advice of true ME/CFS experts.

The Psychologising of ME/CFS has been done in the UK in a more blatent and

extreme manner. For those who doubt this, ask a UK patient, or go to

MEActionUK@..., for excellant evidence in the last few months, or

read the words of Simon Wessely, White, Sharpe (the " Wessely

School " ). They are considered the ME/CFS experts, receive most of the research

funds and they are all Psychiatrists.

But the history, current work, and future plans in the US also reflect these

beliefs. And these very same specific Psychiatrists are now and have been since

the beginning, an integral part of the CDC's definition, policies, and

recommendations.

All of this is chronicled in black and white, some is in " Osler's Web " and is

well known by informed CFS activists.

Why do you think that majority of our Doctors know virtually nothing about our

illness, and have been known for 2+ decades to refer us to Psychs, minimise our

symptoms, deny us testing, or treatment, or refuse to see us at all?

I came into this illness with a strong mind/body, not either/or belief system.

AS a matter of fact, I would say that some form of it, and Spirituality, is what

has assisted me in surviving it at all. People in my life recently have again

strongly observed this regarding my approach daily.

But this is in addition to studying the hard Science, participating in treatment

and support groups, avoiding chemical and other toxins, extreme discipline in

energy output, education of others, and following complex, medical, anti-viral,

and other protocols. All of which would be seen by CFS-Psychologisers, not as

any dogged survival actions, but as dysfunctional-illness-perpetuating-behavior.

To be corrected by Congnitive Behavorial Therapy.

By the way, as many of our population deny the focus and purpose of many of the

studies and reports, CBT grows merrily along into a Mass Industry enacted on the

rest of the population, too. It is now the darling of Talk Therapy, and used for

others who are ill, in the same manner.

I have a friend with HIV, going through " the system " , trying to get back into

school and work.

In seeing a Psychiatrist for assistance in the transition, what began as

excitement at CBT ( " yes/and " ?) tools being used, has now resulted in being

pressured to enter full time employment immediately, forego daytime resting,

(HIV and HIV drugs are very fatiguing), and take a stimulant which jangles him,

in addition to several psych and other drugs. At the same time, being denied

some treatments that would mitigate the significant damage caused by the HIV

drugs, themselves.

He has run out of funds to pay out of pocket, or use much of any

non-pharmaceutical treatment.

Our population could benefit from and deserve help with Psychological

issues...whether resulting from the ME/CFS experience, or those we came into it

with. I believe this would help us greatly in making our decisions for self

care, enacting them, and healing.

But any official theories, and policies I have seen that lead to Psych field,

are to the detriment and denial of hard Science, testing or medical treatment.

Katrina

> > >

> > > There is a very large study going on that sheds some light on

> > > conditions like CFS and FM. It is called the ACE Study which

> stands

> > > for Adverse Childhood Diseases. The study looks at the

> correlation

> > > between unresolved traumas in childhood and adult health

> problems.

> > > What they discovered in this study of over 17,000 participants

> is

> > that

> > > there is a graded correlation between the number of categories of

> > > Adverse Childhood Expereinces someone has experienced with a

> whole

> > > host of health problems in adult life. There is a facinating

> > article

> > > of the study at -

> > > http://xnet.kp.org/permanentejournal/winter02/goldtolead.html.

> > >

> > > After reading this article I contacted Dr. Felitti and have a

> > lengthy

> > > meeting with him. During this meeting he mentioned that he felt

> > that

> > > the ACE play a very significant role in FM. This study opens up a

> > > whole new vista of possibilites to be explored in finding ways

> to

> > help

> > > people resolve the ACE.

> > >

> > > I hope you enjoy the article,

> > >

> > > Tom Stone

> > >

> >

>

[Guest guest]

OK, I retract the statement I made about emotional abuse coming

more from the lower socio-economic population. But the big 'laugher'

of the ACE theory is it's inability to account for the cluster CFS

outbreaks.

Mike C

> >

> > If there is any validity to the ACE study and CFS, that would be

> > *very* coincidental that so many of the residents of Incline

Village

> > and Truckee had 'childhood trauma'. And let us be perfectly

clear

[Guest guest]

There is also the undeniable factor that the lower your socioeconomic

status, the more likely you are to be exposed to environmental toxins of all

kinds. In your home, work, water, air, etc. They effect your health. Also, a

lot of other things effect yur health. Even something as simple as not being

able to get enough exercise because its unsafe to go outside. In the US, I

think that your life expectancy changes by an average of more than ten

years, all other things being equal, based on your family income..

Also, the amount of time a parent gets to spend with a child during the

early brain development and what they do, is very important. Environmental

toxins like lead also are very important. Simply living in some counties

where lead used to be mined lowers your IQ by seven points. (Cleaning

doesn't seem to matter that much, either, indicating that very fine

particles are pervasive)

Many of these toxins often individually have been proven to effect IQ, so

imagine the combined effect of many of them together, on IQ, stress level,

etc. Its considerable.

[Guest guest]

Oops, I forgot one.. Noise.. Noise also has the potential to damage your

health substantially if its pervasive.. and it has a significant effect on

IQ, school performance, etc. This is according to lots of research..

Here is a reference that gives lots of background on this..

http://www.hc-sc.gc.ca/ewh-semt/pubs/noise-bruit/01hecs-secs256/index_e.html

[Guest guest]

LiveSimply <quackadillian@...> wrote:

>

> There is also the undeniable factor that the lower your

socioeconomic status, the more likely you are to be exposed to

environmental toxins of all kinds.

>

Then wouldn't you expect CFS to be rampant in places of economic

deprivation and virtually nonexistant in fancy upper-class hoity-toity

snooty rich-folk pristine mountain resort places like Incline Village?

-

[Guest guest]

Look , I appreciate that many people in Incline Village have CFS, and

that the people you met at CFS doctors and support groups were largely

middle class of affluent. But the fact that you were going to a doctor and

going to support groups (or chatting on a computer) were self-limiting

factors in that poor people often only go to the doctor when they are VERY

sick (at least the poor people I know- people who don't have insurance, end

up only getting medical care when they have some kind of medical emergency,

like appendicitis... etc.. ) So, can you see how statistically, your

impression might be skewed?

Look at the cross section of people we see on the mold list.. Lots of

regular folks, many are renters, many are condo livers, many are

homeowners.. But, I don't think that many are that well off.. if so, very

few..

The rich don't spend weeks cleaning off their belongings painstakingly, they

just throw it all out and sue.. They can afford to. Most people can't.

Just like most CFSers I am sure, have little time for support groups, etc.

When they get sick, they are doing everything they can to prevent

homelessness.. Many don't succeed..

All of us, when we get sick, our lives fall apart... How many of us have a

safety net, really.. not many..

[Guest guest]

Re: You might find this article of interest

" ... And let us be perfectly clear

that the kind of trauma that this study is referring to is

emotional, not physical as in an injury. Therefore, the obvious

treatment would be psychological or CBT, without addressing all the

proven immune, cardiovascular and other irregularities found in

CFS. Tom, I think if you continue this thread without pointing out

some concrete physiological abnormalities, you will find that it

upsets a lot of people. "

I didn't read the study, did you, Mike? I mean, that you are sure it excludes

physical trauma?

I also think it is inappropriate to inform people they are liable to upset

many others. That is intimidating. We don't need that.

Adrienne

[Guest guest]

The fact that the likely truth about the effects of trauma is being misused to

serve truly evil ends, doesn't mean that the truth should be denied or thrown

out. Suppressing the truth creates much evil of its own-maybe not specifically

for us, but in general. I think spirituality must include the idea that the

truth sets us free.

Adrienne

Re: You might find this article of interest

Hi ,

>>>>Whenever we get onto the topic of psychology we tend to think and respond

in " either/or " mode. Why can't we have a " yes/and " theory?<<<<<

We have serious questions with

Emotions/behaviors-as-cause/perpetuation-of-ME/CFS theories, because they never

result in " yes/and " treatment.

They lead to one place and one place only. The attempt to catagorize the

disease and it's course as ruled by emotions/behavior, never pathogens,

chemicals, environment, and needing one treatment...Cognitive Behavorial

Therapy...changing your thinking that you have a serious disease at all; plus

Graded Exercise Therapy...in a manner that is totally contraindicated by our own

previous attempts, and the advice of true ME/CFS experts.

The Psychologising of ME/CFS has been done in the UK in a more blatent and

extreme manner. For those who doubt this, ask a UK patient, or go to

MEActionUK@..., for excellant evidence in the last few months, or

read the words of Simon Wessely, White, Sharpe (the " Wessely

School " ). They are considered the ME/CFS experts, receive most of the research

funds and they are all Psychiatrists.

But the history, current work, and future plans in the US also reflect these

beliefs. And these very same specific Psychiatrists are now and have been since

the beginning, an integral part of the CDC's definition, policies, and

recommendations.

All of this is chronicled in black and white, some is in " Osler's Web " and is

well known by informed CFS activists.

Why do you think that majority of our Doctors know virtually nothing about our

illness, and have been known for 2+ decades to refer us to Psychs, minimise our

symptoms, deny us testing, or treatment, or refuse to see us at all?

I came into this illness with a strong mind/body, not either/or belief system.

AS a matter of fact, I would say that some form of it, and Spirituality, is what

has assisted me in surviving it at all. People in my life recently have again

strongly observed this regarding my approach daily.

But this is in addition to studying the hard Science, participating in

treatment and support groups, avoiding chemical and other toxins, extreme

discipline in energy output, education of others, and following complex,

medical, anti-viral, and other protocols. All of which would be seen by

CFS-Psychologisers, not as any dogged survival actions, but as

dysfunctional-illness-perpetuating-behavior. To be corrected by Congnitive

Behavorial Therapy.

By the way, as many of our population deny the focus and purpose of many of

the studies and reports, CBT grows merrily along into a Mass Industry enacted on

the rest of the population, too. It is now the darling of Talk Therapy, and used

for others who are ill, in the same manner.

I have a friend with HIV, going through " the system " , trying to get back into

school and work.

In seeing a Psychiatrist for assistance in the transition, what began as

excitement at CBT ( " yes/and " ?) tools being used, has now resulted in being

pressured to enter full time employment immediately, forego daytime resting,

(HIV and HIV drugs are very fatiguing), and take a stimulant which jangles him,

in addition to several psych and other drugs. At the same time, being denied

some treatments that would mitigate the significant damage caused by the HIV

drugs, themselves.

He has run out of funds to pay out of pocket, or use much of any

non-pharmaceutical treatment.

Our population could benefit from and deserve help with Psychological

issues...whether resulting from the ME/CFS experience, or those we came into it

with. I believe this would help us greatly in making our decisions for self

care, enacting them, and healing.

But any official theories, and policies I have seen that lead to Psych field,

are to the detriment and denial of hard Science, testing or medical treatment.

Katrina

> > >

> > > There is a very large study going on that sheds some light on

> > > conditions like CFS and FM. It is called the ACE Study which

> stands

> > > for Adverse Childhood Diseases. The study looks at the

> correlation

> > > between unresolved traumas in childhood and adult health

> problems.

> > > What they discovered in this study of over 17,000 participants

> is

> > that

> > > there is a graded correlation between the number of categories of

> > > Adverse Childhood Expereinces someone has experienced with a

> whole

> > > host of health problems in adult life. There is a facinating

> > article

> > > of the study at -

> > > http://xnet.kp.org/permanentejournal/winter02/goldtolead.html.

> > >

> > > After reading this article I contacted Dr. Felitti and have a

> > lengthy

> > > meeting with him. During this meeting he mentioned that he felt

> > that

> > > the ACE play a very significant role in FM. This study opens up a

> > > whole new vista of possibilites to be explored in finding ways

> to

> > help

> > > people resolve the ACE.

> > >

> > > I hope you enjoy the article,

> > >

> > > Tom Stone

> > >

> >

>

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.

[Guest guest]

Not if there are clusters of abuse- and there are.

Adrienne

Re: You might find this article of interest

OK, I retract the statement I made about emotional abuse coming

more from the lower socio-economic population. But the big 'laugher'

of the ACE theory is it's inability to account for the cluster CFS

outbreaks.

Mike C

> >

> > If there is any validity to the ACE study and CFS, that would be

> > *very* coincidental that so many of the residents of Incline

Village

> > and Truckee had 'childhood trauma'. And let us be perfectly

clear

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.

[Guest guest]

> >

> > There is a very large study going on that sheds some light on

> > conditions like CFS and FM. It is called the ACE Study which stands

> > for Adverse Childhood Diseases. The study looks at the correlation

> > between unresolved traumas in childhood and adult health problems.

> > What they discovered in this study of over 17,000 participants is that

> > there is a graded correlation between the number of categories of

> > Adverse Childhood Expereinces someone has experienced with a whole

> > host of health problems in adult life. There is a facinating article

> > of the study at -

> > http://xnet.kp.org/permanentejournal/winter02/goldtolead.html.

> >

> > After reading this article I contacted Dr. Felitti and have a lengthy

> > meeting with him. During this meeting he mentioned that he felt that

> > the ACE play a very significant role in FM. This study opens up a

> > whole new vista of possibilites to be explored in finding ways to help

> > people resolve the ACE.

> >

> > I hope you enjoy the article,

> >

> > Tom Stone

> >

>

>

>

>

>

> 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.

>

[Guest guest]

Adrienne,

You wrote:

>>>I didn't read the study, did you, Mike? I mean, that you are sure it excludes

physical trauma?<<<<

Perhaps you did not read all my post. I provided this quote, from ACE pages, in

my first response

>>>>In other words, the ACE Study documents the conversion of traumatic

emotional experiences in childhood into organic diseases later in life. " <<<<<

see also, " Conversion Disorder " , which is listed under Mental Illnesses,

neurosis, hysteria, etc.

{Hysteria being the field igniting the passion of Simon Wessely, ME/CFS

" expert " , spokesperson, Psychiatrist. In medical school, he found actual

Medicine to be " boring " .

And has said: " ME is a belief. The belief that one has a disease called ME " . }

Katrina

>

>

> Re: You might find this article of interest

> " ... And let us be perfectly clear

> that the kind of trauma that this study is referring to is

> emotional, not physical as in an injury. Therefore, the obvious

> treatment would be psychological or CBT, without addressing all the

> proven immune, cardiovascular and other irregularities found in

> CFS. Tom, I think if you continue this thread without pointing out

> some concrete physiological abnormalities, you will find that it

> upsets a lot of people. "

>

> I didn't read the study, did you, Mike? I mean, that you are sure it

excludes physical trauma?

> I also think it is inappropriate to inform people they are liable to upset

many others. That is intimidating. We don't need that.

> Adrienne

>

>

>

>

[Guest guest]

Add to the list of stigmatized illnesses diabetes. They too were

institutionalized as crazy because if you've ever been around a person with it

as I have they act very bizaarly when their blood suger is low. Like crazed

drunks with attitude. This thread is bunk to me. A CFS personality,....give me

a break.

Re: You might find this article of interest

> >

> > There is a very large study going on that sheds some light on

> > conditions like CFS and FM. It is called the ACE Study which stands

> > for Adverse Childhood Diseases. The study looks at the correlation

> > between unresolved traumas in childhood and adult health problems.

> > What they discovered in this study of over 17,000 participants is that

> > there is a graded correlation between the number of categories of

> > Adverse Childhood Expereinces someone has experienced with a whole

> > host of health problems in adult life. There is a facinating article

> > of the study at -

> > http://xnet.kp.org/permanentejournal/winter02/goldtolead.html.

> >

> > After reading this article I contacted Dr. Felitti and have a lengthy

> > meeting with him. During this meeting he mentioned that he felt that

> > the ACE play a very significant role in FM. This study opens up a

> > whole new vista of possibilites to be explored in finding ways to help

> > people resolve the ACE.

> >

> > I hope you enjoy the article,

> >

> > Tom Stone

> >

>

>

>

>

>

> 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.

>

[Guest guest]

LiveSimply <quackadillian@...> wrote:

> Look , I appreciate that many people in Incline Village have

CFS, and that the people you met at CFS doctors and support groups

were largely middle class of affluent. But the fact that you were

going to a doctor and going to support groups (or chatting on a

computer) were self-limiting factors in that poor people often only

go to the doctor when they are VERY sick (at least the poor people I

know- people who don't have insurance, end up only getting medical

care when they have some kind of medical emergency, like

appendicitis... etc.. ) So, can you see how statistically, your

> impression might be skewed?

>

Our community was a microcosm, remote and small enough to witness

the effect when this phenomenon emerged.

We did not come together and statistically " self select " .

This was a relatively fixed data set in a small town.

We did not " meet at CFS doctors " - they did not yet exist.

A significant number of inhabitants acquired an illness that no one

had seen before.

Dr Cheney and Dr were the only doctors who took the problem

seriously.

When we had clusters of illness in certain buidlings, Dr

finally grew alarmed and called the CDC.

The CDC wasted three years calling it " hysteria " before they finally

convened a committee to give the phenomenon a name:

" Chronic Fatigue Syndrome " .

You have invented an explanation to support your concept which is

not based upon the circumstances.

-

[Guest guest]

A-re-read what I said. What I meant was that whenever the cause of

CFS is said to be psychological, people get upset. I don't think you

or anyone else can disagree w/ that. I also further stated that

Tom needed to tie in childhood emotional trauma to actual physical

symptoms like adrenal stimulus so that there is some sort of

experimental treatment perhaps. I certainly didn't mean to be

intimidating, I was just stating what I thought would happen and

pretty much most people who responded to Tom were somewhat upset

or dismayed.

Mike C

--- In , " Adrienne G. " Tom, I

think if you continue this thread without pointing out

> some concrete physiological abnormalities, you will find that it

> upsets a lot of people. "

>

> I didn't read the study, did you, Mike? I mean, that you are

sure it excludes physical trauma?

> I also think it is inappropriate to inform people they are

liable to upset many others. That is intimidating. We don't need

that.

> Adrienne

[Guest guest]

And we haven't heard fom Tom since. Is he a patient? Perhaps the post was an

experiment itself, to see how patients would respond to ACE applied to CFS, FM.

Katrina

>

> A-re-read what I said. What I meant was that whenever the cause of

> CFS is said to be psychological, people get upset. I don't think you

> or anyone else can disagree w/ that. I also further stated that

> Tom needed to tie in childhood emotional trauma to actual physical

> symptoms like adrenal stimulus so that there is some sort of

> experimental treatment perhaps. I certainly didn't mean to be

> intimidating, I was just stating what I thought would happen and

> pretty much most people who responded to Tom were somewhat upset

> or dismayed.

>

> Mike C

>

>

>

>

> --- In , " Adrienne G. " Tom, I

> think if you continue this thread without pointing out

> > some concrete physiological abnormalities, you will find that it

> > upsets a lot of people. "

> >

> > I didn't read the study, did you, Mike? I mean, that you are

> sure it excludes physical trauma?

> > I also think it is inappropriate to inform people they are

> liable to upset many others. That is intimidating. We don't need

> that.

> > Adrienne

>