Re: You are responsible for your own illness

April 22, 2005

sir, I couldnt agree with you more. Patients should heed what youre

saying.

I know youre an epidemic man from Incline. I'm a slow-onset dude, and

those of my stripe had even more chance to psychologize their illness,

since neurosis and subjective stress can be the earliest developing

symptoms - and can seem like theyre gradually self-intensifying.

Myofascially-caused chonic pelvic pain syndrome was my first

non-neurotic sx, and struck when I was still very physically fit and

only a little depressed/batty. So I attributed alot of my brewing

vague systemic illness to being driven nuts by the terrible pain -

even tho it was improving thanks to the Stanford treatment, and the

rest of me was getting worse month by month. Then I started bruxing

really hard at night, " obviously " because of stress, and thenceforth

attributed alot of on-and-off malaise to consequent poor sleep

(bruxism may not in fact impact sleep quality, I dono).

Astonishingly, I even managed to psychologize a brief clonic seizure -

marked mental confusion with light convulsions.

All along I told my doctors it was all ongoingly eminating from

stress, especially the stress of the pain, and thats what they

recorded in my charts. Despite being aware of my muscle twitching,

outlandish bruises, and weird blood counts.

But then I got *really* sick...

<erikj6@e...> wrote:

>

> That's what we get told, even though the illness raged through the

> community and didn't seem to care if it hit athletes or lazies, health

> nuts or junk foodists.

> Every time someone tells me they contributed to their own illness by

> over-exercsing or failure to live a stress free life, or perhaps ate a

> few too many twinkies, I can't help but wonder " Don't they see that

> it hit others who took the best possible care of themselves?

> The illness just plain didn't care! "

>

> The fundamental basis of research denial is that there is nothing to

> research since the illness results from your own failure to take

> responsibility for your health.

> If the illness could not be avoided, controlled or cured in those who

> were ALWAYS monitoring these " factors " then how relevant are they?

> Dr Cheney and Dr could see that these were not significant

> factors in acquisition, perpetuation or resolution of the illness.

> Why can't all CFSers see this?

> -

April 22, 2005

, if you want to find the CAUSE of what happened at Incline Village,

just find the stressor that was unique to all those who succumbed, and

not present in the other people. If we knew the answer it would

probably be simple - sort of like the Ergot poisoning causing the crazy

folks in Salem Mass in the 1600s, imagine the lengths people went to to

explain that, hundreds of years of misunderstanding, but it was so

simple in the end, just a bad fungus in the crops. When I look at the

lengths we are going to to try and understand CFIDS sometimes I just

groan, we are unraveling so many details when the truth will probably

turn out to simply be some weird parasite or maybe a spirochete, bugs

that mediate an oversensitivity to stress, among other things.

I think it is only fair to point out that disease-causing stress may

just mean stress under conditions of infection. Whereas without

infection the same stress may be benign. I think this is the problem

with stress discussions. Emotional stress is the one we usually think

of when we hear the word 'stress.' That seems to be the topic on this

list usually. But there is also metabolic stress (like HPA trouble),

and biological stress (like an infection triggering fibrin deposits for

example), and physical stress (like over-exercising). ANY of these can

lead to adrenal exhaustion, HPA problems and disease. The adrenal

system does not care which type of stress it has, it must respond the

same to all of them. Personally I think we probably agree on the main

points here, I do believe that there is an infection behind this, and

that mediates our stress sensitivity. And we need help with both stress

management and infection management.

BTW, being in great shape and/or being emotionally stress-free does not

exclude stress as an important co-factor in CFIDS. When someone says

they had just worked up to their highest level of exercise EVER, and

were feeling GREAT. Then my response is - OK, then they had LOTs of

those great exercise-induced endorphins pumping around, and felt like

Rocky Balboa. been there, done that, it is a great feeling. BUT does

that mean they had low stress? NO WAY, they are massively under stress,

PHYSICAL STRESS. And that can certainly cause some problems. They may

not have felt emotionally 'stressed' and I agree, in that context

emotional stressors had nothing to do with the eventual adrenal

break-down, but the physical stress had everything to do with it. The

adrenals don't care about the cause of stress, and a high exercise level

produces a real physical stress that hammers the adrenals, particularly

if there are underlying infection loads.

When I got sick I was at the peak of my life and career. I was

jet-setting around the world presenting at scientific conferences. Had

a great family life, a wonderful job, had money finally (after grad

school anything was welcome). I had low to almost no emotional stress,

I could handle anything, or so it seemed. I exercised (swam) whenever I

could. BUT all of that activity WAS stress, it was just a different

form and I did not realize that just because I felt no emotional stress.

Stress is an adrenal issue and is far more complex than it looks. My

adrenals were maxed-out by my life, and I believe that is why I

succumbed to CFS after acquiring some co-infection. My adrenals were

probably at their limit, and I got a case of bronchitis first, that

started my decline. But probably there was some underlying parasite or

other co-infection (Borrelia probably) that was sapping my adrenal

strength below the surface. Maybe I had a lower genetic adrenal

capacity than others, or maybe I was just unlucky and had concurrent

infection overload, I don't know. But I could certainly claim 'it

wasn't stress' if I only considered emotional stresses. But when I look

at 'adrenal stress' the story is a bit different.

I believe that THIS is the story we need to be telling. How yes, we

have a disease where our symptoms interact with our stress levels, but

we can not eradicate the disease with stress treatments alone. Or

something to that effect.

--Kurt

SPAM-LOW: You are responsible for your own

illness

That's what we get told, even though the illness raged through the

community and didn't seem to care if it hit athletes or lazies, health

nuts or junk foodists.

Every time someone tells me they contributed to their own illness by

over-exercsing or failure to live a stress free life, or perhaps ate a

few too many twinkies, I can't help but wonder " Don't they see that

it hit others who took the best possible care of themselves?

The illness just plain didn't care! "

The fundamental basis of research denial is that there is nothing to

research since the illness results from your own failure to take

responsibility for your health.

If the illness could not be avoided, controlled or cured in those who

were ALWAYS monitoring these " factors " then how relevant are they?

Dr Cheney and Dr could see that these were not significant

factors in acquisition, perpetuation or resolution of the illness.

Why can't all CFSers see this?

-

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.

_____

April 22, 2005

Kurt,

I use the term " stress " in the same way you have described it. It

is whatever causes a response by the nonspecific stress response

systems in the body, and that can include stress caused by physical,

chemical, biological or psychological stressors.

Rich

> , if you want to find the CAUSE of what happened at Incline

Village,

> just find the stressor that was unique to all those who succumbed,

and

> not present in the other people. If we knew the answer it would

> probably be simple - sort of like the Ergot poisoning causing the

crazy

> folks in Salem Mass in the 1600s, imagine the lengths people went

to to

> explain that, hundreds of years of misunderstanding, but it was so

> simple in the end, just a bad fungus in the crops. When I look at

the

> lengths we are going to to try and understand CFIDS sometimes I

just

> groan, we are unraveling so many details when the truth will

probably

> turn out to simply be some weird parasite or maybe a spirochete,

bugs

> that mediate an oversensitivity to stress, among other things.

>

> I think it is only fair to point out that disease-causing stress

may

> just mean stress under conditions of infection. Whereas without

> infection the same stress may be benign. I think this is the

problem

> with stress discussions. Emotional stress is the one we usually

think

> of when we hear the word 'stress.' That seems to be the topic on

this

> list usually. But there is also metabolic stress (like HPA

trouble),

> and biological stress (like an infection triggering fibrin

deposits for

> example), and physical stress (like over-exercising). ANY of

these can

> lead to adrenal exhaustion, HPA problems and disease. The adrenal

> system does not care which type of stress it has, it must respond

the

> same to all of them. Personally I think we probably agree on the

main

> points here, I do believe that there is an infection behind this,

and

> that mediates our stress sensitivity. And we need help with both

stress

> management and infection management.

>

> BTW, being in great shape and/or being emotionally stress-free

does not

> exclude stress as an important co-factor in CFIDS. When someone

says

> they had just worked up to their highest level of exercise EVER,

and

> were feeling GREAT. Then my response is - OK, then they had LOTs

of

> those great exercise-induced endorphins pumping around, and felt

like

> Rocky Balboa. been there, done that, it is a great feeling. BUT

does

> that mean they had low stress? NO WAY, they are massively under

stress,

> PHYSICAL STRESS. And that can certainly cause some problems.

They may

> not have felt emotionally 'stressed' and I agree, in that context

> emotional stressors had nothing to do with the eventual adrenal

> break-down, but the physical stress had everything to do with it.

The

> adrenals don't care about the cause of stress, and a high exercise

level

> produces a real physical stress that hammers the adrenals,

particularly

> if there are underlying infection loads.

>

> When I got sick I was at the peak of my life and career. I was

> jet-setting around the world presenting at scientific

conferences. Had

> a great family life, a wonderful job, had money finally (after grad

> school anything was welcome). I had low to almost no emotional

stress,

> I could handle anything, or so it seemed. I exercised (swam)

whenever I

> could. BUT all of that activity WAS stress, it was just a

different

> form and I did not realize that just because I felt no emotional

stress.

> Stress is an adrenal issue and is far more complex than it looks.

My

> adrenals were maxed-out by my life, and I believe that is why I

> succumbed to CFS after acquiring some co-infection. My adrenals

were

> probably at their limit, and I got a case of bronchitis first, that

> started my decline. But probably there was some underlying

parasite or

> other co-infection (Borrelia probably) that was sapping my adrenal

> strength below the surface. Maybe I had a lower genetic adrenal

> capacity than others, or maybe I was just unlucky and had

concurrent

> infection overload, I don't know. But I could certainly claim 'it

> wasn't stress' if I only considered emotional stresses. But when

I look

> at 'adrenal stress' the story is a bit different.

>

> I believe that THIS is the story we need to be telling. How yes,

we

> have a disease where our symptoms interact with our stress levels,

but

> we can not eradicate the disease with stress treatments alone. Or

> something to that effect.

> --Kurt

>

> SPAM-LOW: You are responsible for

your own

> illness

>

> That's what we get told, even though the illness raged through the

> community and didn't seem to care if it hit athletes or lazies,

health

> nuts or junk foodists.

> Every time someone tells me they contributed to their own illness

by

> over-exercsing or failure to live a stress free life, or perhaps

ate a

> few too many twinkies, I can't help but wonder " Don't they see

that

> it hit others who took the best possible care of themselves?

> The illness just plain didn't care! "

>

> The fundamental basis of research denial is that there is nothing

to

> research since the illness results from your own failure to take

> responsibility for your health.

> If the illness could not be avoided, controlled or cured in those

who

> were ALWAYS monitoring these " factors " then how relevant are they?

> Dr Cheney and Dr could see that these were not

significant

> factors in acquisition, perpetuation or resolution of the illness.

> Why can't all CFSers see this?

> -

>

> 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.

>

> _____

>

April 22, 2005

Thanks for point out the different types of stress. Isnt illness by definition

due to the over 'stressing' of some biological process? At some point something

breaks down - whether it is the immune system, heart, the nervous system,

whatever, somehow the formerly healthy state in not maintained and the body is

in a race to return itself to normal or fall apart.

I dont think there has to be one reason for CFS. CFS has been around for a

long, long time. The Incline Village outbreak may have gained such notoriety

because in that situation CFS was caused by some pathogen that swept through the

area debilitating people. In other cases it may be due to toxins, or adrenal

exhaustion or even overtraining. Talk about physical stress - its is uncanny

how similar the symptoms of overtraining are to CFS. Probably lots of ways to

get CFS - the ones that stand out are the ones that are dramatic; ie a whole

community gets ill. I would think that would probably be caused by an

infectious agent.

rvankonynen <richvank@...> wrote:

Kurt,

I use the term " stress " in the same way you have described it. It

is whatever causes a response by the nonspecific stress response

systems in the body, and that can include stress caused by physical,

chemical, biological or psychological stressors.

Rich

> , if you want to find the CAUSE of what happened at Incline

Village,

> just find the stressor that was unique to all those who succumbed,

and

> not present in the other people. If we knew the answer it would

> probably be simple - sort of like the Ergot poisoning causing the

crazy

> folks in Salem Mass in the 1600s, imagine the lengths people went

to to

> explain that, hundreds of years of misunderstanding, but it was so

> simple in the end, just a bad fungus in the crops. When I look at

the

> lengths we are going to to try and understand CFIDS sometimes I

just

> groan, we are unraveling so many details when the truth will

probably

> turn out to simply be some weird parasite or maybe a spirochete,

bugs

> that mediate an oversensitivity to stress, among other things.

>

> I think it is only fair to point out that disease-causing stress

may

> just mean stress under conditions of infection. Whereas without

> infection the same stress may be benign. I think this is the

problem

> with stress discussions. Emotional stress is the one we usually

think

> of when we hear the word 'stress.' That seems to be the topic on

this

> list usually. But there is also metabolic stress (like HPA

trouble),

> and biological stress (like an infection triggering fibrin

deposits for

> example), and physical stress (like over-exercising). ANY of

these can

> lead to adrenal exhaustion, HPA problems and disease. The adrenal

> system does not care which type of stress it has, it must respond

the

> same to all of them. Personally I think we probably agree on the

main

> points here, I do believe that there is an infection behind this,

and

> that mediates our stress sensitivity. And we need help with both

stress

> management and infection management.

>

> BTW, being in great shape and/or being emotionally stress-free

does not

> exclude stress as an important co-factor in CFIDS. When someone

says

> they had just worked up to their highest level of exercise EVER,

and

> were feeling GREAT. Then my response is - OK, then they had LOTs

of

> those great exercise-induced endorphins pumping around, and felt

like

> Rocky Balboa. been there, done that, it is a great feeling. BUT

does

> that mean they had low stress? NO WAY, they are massively under

stress,

> PHYSICAL STRESS. And that can certainly cause some problems.

They may

> not have felt emotionally 'stressed' and I agree, in that context

> emotional stressors had nothing to do with the eventual adrenal

> break-down, but the physical stress had everything to do with it.

The

> adrenals don't care about the cause of stress, and a high exercise

level

> produces a real physical stress that hammers the adrenals,

particularly

> if there are underlying infection loads.

>

> When I got sick I was at the peak of my life and career. I was

> jet-setting around the world presenting at scientific

conferences. Had

> a great family life, a wonderful job, had money finally (after grad

> school anything was welcome). I had low to almost no emotional

stress,

> I could handle anything, or so it seemed. I exercised (swam)

whenever I

> could. BUT all of that activity WAS stress, it was just a

different

> form and I did not realize that just because I felt no emotional

stress.

> Stress is an adrenal issue and is far more complex than it looks.

My

> adrenals were maxed-out by my life, and I believe that is why I

> succumbed to CFS after acquiring some co-infection. My adrenals

were

> probably at their limit, and I got a case of bronchitis first, that

> started my decline. But probably there was some underlying

parasite or

> other co-infection (Borrelia probably) that was sapping my adrenal

> strength below the surface. Maybe I had a lower genetic adrenal

> capacity than others, or maybe I was just unlucky and had

concurrent

> infection overload, I don't know. But I could certainly claim 'it

> wasn't stress' if I only considered emotional stresses. But when

I look

> at 'adrenal stress' the story is a bit different.

>

> I believe that THIS is the story we need to be telling. How yes,

we

> have a disease where our symptoms interact with our stress levels,

but

> we can not eradicate the disease with stress treatments alone. Or

> something to that effect.

> --Kurt

>

> SPAM-LOW: You are responsible for

your own

> illness

>

> That's what we get told, even though the illness raged through the

> community and didn't seem to care if it hit athletes or lazies,

health

> nuts or junk foodists.

> Every time someone tells me they contributed to their own illness

by

> over-exercsing or failure to live a stress free life, or perhaps

ate a

> few too many twinkies, I can't help but wonder " Don't they see

that

> it hit others who took the best possible care of themselves?

> The illness just plain didn't care! "

>

> The fundamental basis of research denial is that there is nothing

to

> research since the illness results from your own failure to take

> responsibility for your health.

> If the illness could not be avoided, controlled or cured in those

who

> were ALWAYS monitoring these " factors " then how relevant are they?

> Dr Cheney and Dr could see that these were not

significant

> factors in acquisition, perpetuation or resolution of the illness.

> Why can't all CFSers see this?

> -

>

> 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.

>

> _____

>

April 22, 2005

Actually I am viewing stress as anything that causes eventual adrenal

exhaustion. This can include the triggers Rich mentions. Those all can

lead to adrenal exhaustion. The importance of the adrenal exhaustion

angle is that it is the mechanism that produces the three-stage model of

disease progression identified by Hans Seyle (General Adaptive Syndrome,

G.A.S.), and also is nearly identical to the three stages that Cheney

spoke of for CFS a number of years ago, and also promoted by Teitelbaum.

But I think you are talking about an even broader view of stress than

what I am trying to discuss. I would not call every trigger that breaks

a biological process a stress, or over-stress, although maybe some are

stressors in a technical sense. Many of these disease triggers involve

errors, such as introduction of genetic problems, or auto-immune

responses, etc. I suppose though that in some ways the definition could

be as broad as we like, particularly where physical organ damage is

involved.

I think you make a good point about multiple reasons for CFS, and also

the one possible infectious agent. That agent could also be a

combination of a few co-infections, perhaps one is in the community to

begin with, and when the other it's a few people, they get the disease.

I am reading about polyparasitism right now, a sub-discipline in

parasitology where they explore the generation of new diseases from

combinations of parasite-like organisms and other pathogens. Right now

many researchers in this field are focusing on how HIV and Malaria

combine to create a new type of disease, for example. Maybe something

like that is happening with CFIDS. Something that is not known to be a

problem in the West, so it is not being looked for. A few people think

this is the case with Lyme Disease, that it is the combination of

Borrelia and a few Nematode parasites (Helminths).

--Kurt

SPAM-LOW: You are responsible for

your own

> illness

>

> That's what we get told, even though the illness raged through the

> community and didn't seem to care if it hit athletes or lazies,

health

> nuts or junk foodists.

> Every time someone tells me they contributed to their own illness

by

> over-exercsing or failure to live a stress free life, or perhaps

ate a

> few too many twinkies, I can't help but wonder " Don't they see

that

> it hit others who took the best possible care of themselves?

> The illness just plain didn't care! "

>

> The fundamental basis of research denial is that there is nothing

to

> research since the illness results from your own failure to take

> responsibility for your health.

> If the illness could not be avoided, controlled or cured in those

who

> were ALWAYS monitoring these " factors " then how relevant are they?

> Dr Cheney and Dr could see that these were not

significant

> factors in acquisition, perpetuation or resolution of the illness.

> Why can't all CFSers see this?

> -

>

> 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.

>

> _____

>

April 22, 2005

<richvank@a...> wrote:

> I use the term " stress " in the same way you have described it. It

> is whatever causes a response by the nonspecific stress response

> systems in the body, and that can include stress caused by physical,

chemical, biological or psychological stressors.

> Rich

" Whatever causes a response " ? That covers a lot of territory!

Then can you name a single thing in the world that is NOT stress?

That definition is about as useful as saying " The principal risk

factor for death is LIFE " .

-

April 22, 2005

> , if you want to find the CAUSE of what happened at Incline

Village, just find the stressor that was unique to all those who

succumbed, and not present in the other people. If we knew the answer

it would probably be simple - sort of like the Ergot poisoning causing

the crazy folks in Salem Mass in the 1600s, imagine the lengths people

went to to explain that, hundreds of years of misunderstanding, but it

was so simple in the end, just a bad fungus in the crops.<

Funny you should say that.

I walked in Dr Cheney and Dr s door and asked them to help me

find out why mold was killing me.

And as I've written before on this list and a few zillion others,

found out what the common denominator was years ago.

Mycotoxins.

Rich, I told you my story a long time ago, did you ever contact Rick

to hear his side of it?

-

April 22, 2005

Then can you name a single thing in the world that is NOT

stress?

Actually several things: Rest, meditation, deep breathing, prayer,

massages -- all stress-relieving.

April 22, 2005

> Actually several things: Rest, meditation, deep breathing,

prayer,

> massages -- all stress-relieving.

Nope - Look again.

<richvank@a...> wrote:

> I use the term " stress " in the same way you have described it. It

> is whatever causes a response by the nonspecific stress response

> systems in the body, and that can include stress caused by

physical,

chemical, biological or psychological stressors.

> Rich

See? " Causes a response " instead of " Reduces a response " .

The point is, stressologizers are so bent on implicating stress that

you don't seem very interested in why " stress and stressors " , no

matter how you define them or what they are called - just don't have

any correlation to this illness.

Big time stress and stressors all through history just didn't seem

to cause it.

Low stress and few stressors didn't seem to prevent it.

Just to let you know how OPPOSITE your way of looking at this is

from the viewpoint of Dr Cheney and Dr ,

they chose me to be a prototypical case for CFS because I was the

most PRISTINE case they could find - with the FEWEST complicating

factors and comorbid infections.

They observed the lack of " stress/stressor " overload correlation

and since it didn't " fit the facts " , they tailored their research

accordingly.

-

April 22, 2005

, you asked a simple question: " Then can you name a single

thing in the world that is NOT

stress? "

and I answered it:

" Actually several things: Rest, meditation, deep breathing, prayer,

massages... "

You can ignore this if you like, as you have most of the other

posts. Apparently to you, stress does not cause the thymus to

atrophy, nor the adrenals, etc., etc., etc..

You mentioned your story so many times, perhaps I should shar

mine.

I left work in 1988 to take care of my mother who had been

diagnosed with Parkinson's disease. She also suffered from

dementia, so could not remember when or if she had taken her

pills or remember what she should be doing. Sometimes she'd

get up six or seven times a night, and come knocking on my

door, and I'd help calm her down, get her back to bed, only to be

awakened 45 minutes later...

So that became my job, and as she got worse, I also helped her

go to the bathroom, helped her into the shower, helped her take

a shower, cleaned up after her if she wet the bed, on and on for

THREE YEARS, 24/7, pushing myself way beyond my limits. I

told my family she needed to be in a nursing home, I couldn't do

it any longer, but was always outvoted -- until a year or so later,

when myself (and her sister) could go on no longer -- yet even

then, it was difficult.

And even after she moved to the nursing home, there were many

health care alarms, and many extremely stressful days,

especially after she had a stroke, and spent six weeks dying,

without being able to completely communicate.

All in all, those were five and a half years of extreme, prolonged

stress, that no doubt wreaked havoc on my adrenal glands, my

thymus (the master gland of immune function, which has been

shown in studies to shrink 50% with even moderate stress).

After she died -- another stress -- I sunk into a depression, and

basically shut myself off from the world for a few months.

Eventually I had to find some work, and got a job at an apartment

building. I feel that because I never really recovered from the

ordeal of caring for my mother, and never had a vacation to

" recharge " , that in hindsight, I should've.

Anyway, I took the job, and quickly found out it was way too much

for one person to handle (it was a 52 unit buildling with 12

stairways, each four flights of stairs, which I had to vacuum, not

to mention deal with tenant problems, show apartments, and do

all the gardening around the outside of the building.

And it paid about $800 a month, plus the apartment, so I couldn't

save anything, couldn't take a vacation (except for ONE, in 96,

which friends helped pay for.)

Why didn't I quit? Because I was so tired, I felt no one else

would hire me -- I was working for " friends " (ha), -- who I could

talk to more openingly, without the fear of being fired. In other

words, I felt trapped.

Perhaps I picked up some parasite or something in Mexico in

96? But I was dead tired long before I went there, and I just

wonder if I hadnt' been so weakened, if I would've picked up

anything? I don't know.

But my onset was very gradual, didn't really crash for the first

time until June 1998, so I just can't say that the extreme stress in

my life played no part in my illness.

I should point out too, that I drank like a fish for probably 8 years,

from 1980-1988, and I'm sure that didn't help my gut or liver any,

possibly weakening my metabolic pathways. So at least in my

case, I feel I need to take SOME responsibility for the choices I've

made. Once again, NOT saying that STRESS CAUSED my

CFIDS, but I believe it POSSIBLY was part of of the puzzle. For

your case, it's obviously different.

I noticed your mention of mycotoxins in another post. What did

Cheney or prescribe for that? Anti-fungals?

Dan

> > I use the term " stress " in the same way you have described

it. It

> > is whatever causes a response by the nonspecific stress

response

> > systems in the body, and that can include stress caused by

> physical,

> chemical, biological or psychological stressors.

> > Rich

>

> See? " Causes a response " instead of " Reduces a response " .

>

> The point is, stressologizers are so bent on implicating stress

that

> you don't seem very interested in why " stress and stressors " ,

no

> matter how you define them or what they are called - just don't

have

> any correlation to this illness.

>

> Big time stress and stressors all through history just didn't

seem

> to cause it.

> Low stress and few stressors didn't seem to prevent it.

>

> Just to let you know how OPPOSITE your way of looking at this

is

> from the viewpoint of Dr Cheney and Dr ,

> they chose me to be a prototypical case for CFS because I was

the

> most PRISTINE case they could find - with the FEWEST

complicating

> factors and comorbid infections.

> They observed the lack of " stress/stressor " overload

correlation

> and since it didn't " fit the facts " , they tailored their research

> accordingly.

> -

April 23, 2005

Dan, your stress story is 100% believable as far as there being an

extreme degree of strain not due to partly to a sub-clinical or

semi-sub-clinical stage of the illness already being present.

In contrast, when alot of people talk about a period of stress causing

their illness, from listening to what I they describe I tend to think

they maybe just started perceiving greater stress because their health

was declining. If they cant point to something overwhelmingly

stressful as you can, its hard to know thats not the case. I

" stressologized " my illness as a result of pelvic pain stress,

glossing over the fact that I was already kinda messed up before my

pain started. Just unclear thinking on my part.

I still question whether stress can be causal; most people that came

back from a year of WWI didnt get systemic illness. Even if something

has changed so that stress can cause CFIDS only now - it still takes

formalized questioning and statistical work to show that stressors in

the lives of those who develop CFS are significantly greater than

those in the lives of those who dont. Only overwhelming agreement of

patient reports would satisfy me in the absence of such formal work,

and I dont see that, considering what I discussed in the 2 paragraphs

above.

Think how many people dealt with caring for demented loved ones and

didnt get CFS - thats why I think the formal work involving numerous

patients and controls is necessary to show stress as causal.

April 23, 2005

" kdrbrill " wrote:

> " Actually several things: Rest, meditation, deep breathing, prayer,

> massages... "

>

> You can ignore this if you like, as you have most of the other

> posts. Apparently to you, stress does not cause the thymus to

> atrophy, nor the adrenals, etc., etc., etc..

The definition was " Whatever causes a response " and doesn't specify

the difference between positive or negative responses.

Believe me, when I first fought the psychologizers and said that I

was at an extremely joyous time in my life, they said " Perhaps THAT

was your " stress " since that would still make a change in your

immune response " .

The extent to which psychologizers will stretch the possibilities

are beyoned the realm of reason.

I'm sorry to hear of your story.

We have been sorely tested and tried by our circumstances.

And that is why there is NO EXCUSE for psychologizers to add to the

burdens of those who are already devastated by oxidative stress, yet

are told that they are " deconditioned " by their own choice.

Or who suffer devastating neurological effects from the load that

emotional stress places upon a dysregulated nervous system no longer

able to bear it.

I've read accounts of the survivors of concentration camps that

certainly constitute a level of long term stress and stressors that

surely must have resulted in CFS, if only these were significant

factors.

Yet it just didn't happen.

Now people are succumbing to incomparably lower levels of " stress "

but instead of saying to the doctors " This type of stress just isn't

ENOUGH to cause such pain " - they say, " I succumbed to this stress -

therefore stress must be capable of creating this illness " .

If we want doctors to recognize that it is not normal to be

destroyed by customary " stresses and stressors " which humans have

borne with impunity throughout their history, we must present this

abnormally altered threshold of tolerance as exactly that.

-

April 23, 2005

Dan, would you be willing to have your story on the CFS Phoenix website? You

could flesh it out more, change it or leave it as it is. You can check out the

stories at

http://phoenix-cfs.org/The%20SITE/TellYourStoryBegin.htm

Still haven't gotten your story .

kdrbrill <kdrbrill@...> wrote:

, you asked a simple question: " Then can you name a single

thing in the world that is NOT

stress? "

and I answered it:

" Actually several things: Rest, meditation, deep breathing, prayer,

massages... "

You can ignore this if you like, as you have most of the other

posts. Apparently to you, stress does not cause the thymus to

atrophy, nor the adrenals, etc., etc., etc..

You mentioned your story so many times, perhaps I should shar

mine.

I left work in 1988 to take care of my mother who had been

diagnosed with Parkinson's disease. She also suffered from

dementia, so could not remember when or if she had taken her

pills or remember what she should be doing. Sometimes she'd

get up six or seven times a night, and come knocking on my

door, and I'd help calm her down, get her back to bed, only to be

awakened 45 minutes later...

So that became my job, and as she got worse, I also helped her

go to the bathroom, helped her into the shower, helped her take

a shower, cleaned up after her if she wet the bed, on and on for

THREE YEARS, 24/7, pushing myself way beyond my limits. I

told my family she needed to be in a nursing home, I couldn't do

it any longer, but was always outvoted -- until a year or so later,

when myself (and her sister) could go on no longer -- yet even

then, it was difficult.

And even after she moved to the nursing home, there were many

health care alarms, and many extremely stressful days,

especially after she had a stroke, and spent six weeks dying,

without being able to completely communicate.

All in all, those were five and a half years of extreme, prolonged

stress, that no doubt wreaked havoc on my adrenal glands, my

thymus (the master gland of immune function, which has been

shown in studies to shrink 50% with even moderate stress).

After she died -- another stress -- I sunk into a depression, and

basically shut myself off from the world for a few months.

Eventually I had to find some work, and got a job at an apartment

building. I feel that because I never really recovered from the

ordeal of caring for my mother, and never had a vacation to

" recharge " , that in hindsight, I should've.

Anyway, I took the job, and quickly found out it was way too much

for one person to handle (it was a 52 unit buildling with 12

stairways, each four flights of stairs, which I had to vacuum, not

to mention deal with tenant problems, show apartments, and do

all the gardening around the outside of the building.

And it paid about $800 a month, plus the apartment, so I couldn't

save anything, couldn't take a vacation (except for ONE, in 96,

which friends helped pay for.)

Why didn't I quit? Because I was so tired, I felt no one else

would hire me -- I was working for " friends " (ha), -- who I could

talk to more openingly, without the fear of being fired. In other

words, I felt trapped.

Perhaps I picked up some parasite or something in Mexico in

96? But I was dead tired long before I went there, and I just

wonder if I hadnt' been so weakened, if I would've picked up

anything? I don't know.

But my onset was very gradual, didn't really crash for the first

time until June 1998, so I just can't say that the extreme stress in

my life played no part in my illness.

I should point out too, that I drank like a fish for probably 8 years,

from 1980-1988, and I'm sure that didn't help my gut or liver any,

possibly weakening my metabolic pathways. So at least in my

case, I feel I need to take SOME responsibility for the choices I've

made. Once again, NOT saying that STRESS CAUSED my

CFIDS, but I believe it POSSIBLY was part of of the puzzle. For

your case, it's obviously different.

I noticed your mention of mycotoxins in another post. What did

Cheney or prescribe for that? Anti-fungals?

Dan

> > I use the term " stress " in the same way you have described

it. It

> > is whatever causes a response by the nonspecific stress

response

> > systems in the body, and that can include stress caused by

> physical,

> chemical, biological or psychological stressors.

> > Rich

>

> See? " Causes a response " instead of " Reduces a response " .

>

> The point is, stressologizers are so bent on implicating stress

that

> you don't seem very interested in why " stress and stressors " ,

no

> matter how you define them or what they are called - just don't

have

> any correlation to this illness.

>

> Big time stress and stressors all through history just didn't

seem

> to cause it.

> Low stress and few stressors didn't seem to prevent it.

>

> Just to let you know how OPPOSITE your way of looking at this

is

> from the viewpoint of Dr Cheney and Dr ,

> they chose me to be a prototypical case for CFS because I was

the

> most PRISTINE case they could find - with the FEWEST

complicating

> factors and comorbid infections.

> They observed the lack of " stress/stressor " overload

correlation

> and since it didn't " fit the facts " , they tailored their research

> accordingly.

> -

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.

---------------------------------

April 23, 2005

Check this out amigos. The sudden death of a child was found to be a

2.13 risk factor for development of MS over the next several years:

PMID: 15007121 (ie, go to pubmed.com and enter that ID number)

I plan to read this full text. Epidemiology studies are something I

feel a little uncomfortable with till they are replicated. Because

they are contradicted not rarely. Also extraneous causes are hard to

disprove. From the abstract, tho, this sounds like smart work.

Its nice to find risk factors that are alot bigger than 2.13, because

that way you know its much more likely to be reproducable, ie real.

Ten to fifteen is a nice sized number, and 10-15 is what PMID 15096067

found lupus to be as a risk factor for OCD. This tells us IMO that

neuroses are probably caused by CNS inflammation in many or most cases.

Ive been heavily studying what MS might be (largely because of the

possibility it may be a spirochetosis). Well, I dont know what it is.

It seems very strange.

April 23, 2005

Thanks Mr. H for your understanding reply. You, and EriK, have

made good points. I would just stress, pardon the pun, that

again, I don't think it CAUSED my illness, but perhaps --

emphasize perhaps, it was one FACTOR, of many.

It's also my belief that there are many, many unreported cases of

CFS, especially among men, who will sometimes do anything to

admit " weakness " and go to the doctor. CFS is also often

misdiagnosed as you know.

Anyway, the whole topic has been very interesting and thought

provoking...

d.

>

> Dan, your stress story is 100% believable as far as there being

an

> extreme degree of strain not due to partly to a sub-clinical or

> semi-sub-clinical stage of the illness already being present.

>

> In contrast, when alot of people talk about a period of stress

causing

> their illness, from listening to what I they describe I tend to

think

> they maybe just started perceiving greater stress because their

health

> was declining. If they cant point to something overwhelmingly

> stressful as you can, its hard to know thats not the case. I

> " stressologized " my illness as a result of pelvic pain stress,

> glossing over the fact that I was already kinda messed up

before my

> pain started. Just unclear thinking on my part.

>

> I still question whether stress can be causal; most people that

came

> back from a year of WWI didnt get systemic illness. Even if

something

> has changed so that stress can cause CFIDS only now - it still

takes

> formalized questioning and statistical work to show that

stressors in

> the lives of those who develop CFS are significantly greater

than

> those in the lives of those who dont. Only overwhelming

agreement of

> patient reports would satisfy me in the absence of such formal

work,

> and I dont see that, considering what I discussed in the 2

paragraphs

> above.

>

> Think how many people dealt with caring for demented loved

ones and

> didnt get CFS - thats why I think the formal work involving

numerous

> patients and controls is necessary to show stress as causal.

April 23, 2005

Thanks for considering my views.

I'd just like to " stress " (gag) that the way CFSers present this

anomalous response to stress is important in developing the views of

doctors, family, friends and any other humans we want to have an

accurate understanding of what the heck is going on.

When the soldiers who took Lariam went ballistic, psychologizers ran

rampant with " Stretchologizer " concepts that even if these soldiers

weren't on the front lines - the mere " thought of going into battle "

stretched that stress to the equal of the stress of battle in the

minds of these soldiers.

They stretched their concepts too far and something snapped.

Finally, in this case, those with common sense had enough of this

nonsense and now, amazingly enough, researchers are finding out that

neurotoxins result in behavioral changes.

http://www.drugintel.com/drugs/lariam.htm

" ridiculed "

" opposed "

" self-evident "

-

April 23, 2005

> Believe me, when I first fought the psychologizers and said that

I

> was at an extremely joyous time in my life, they said " Perhaps

THAT

> was your " stress " since that would still make a change in your

> immune response " .

>

> The extent to which psychologizers will stretch the possibilities

> are beyoned the realm of reason.

I totally agree -- their response in your case was nonsensical,

and I could tell you some jaw-dropping stories as well.

>

> I'm sorry to hear of your story.

> We have been sorely tested and tried by our circumstances.

> And that is why there is NO EXCUSE for psychologizers to add

to the

> burdens of those who are already devastated by oxidative

stress, yet

> are told that they are " deconditioned " by their own choice.

> Or who suffer devastating neurological effects from the load

that

> emotional stress places upon a dysregulated nervous system

no longer

> able to bear it.

> I've read accounts of the survivors of concentration camps that

> certainly constitute a level of long term stress and stressors

that

> surely must have resulted in CFS, if only these were significant

> factors.

> Yet it just didn't happen.

I'm sure it didn't in a great deal of survivors, but perhaps a lot of

that was not discussed -- a generational thing? We definitely

hear more of it today -- accounts from Vietnam, and the Gulf War

(where of course chemical warfare has played a huge part).

I've also read some of those stories, and often the survivors

spoke of getting through it by putting themselves in a totally

different " place " , in their mind. They thought of joyous times with

their family, their kids, etc..

> Now people are succumbing to incomparably lower levels of

" stress "

> but instead of saying to the doctors " This type of stress just

isn't

> ENOUGH to cause such pain " - they say, " I succumbed to this

stress -

> therefore stress must be capable of creating this illness " .

Again, I don't think it creates it, but can be a piece of the puzzle.

>

> If we want doctors to recognize that it is not normal to be

> destroyed by customary " stresses and stressors " which

humans have

> borne with impunity throughout their history, we must present

this

> abnormally altered threshold of tolerance as exactly that.

I agree, in general. And thank you for your comments.

d.

> -

April 23, 2005

Little story about illness presentation and sheer determination having

an impact on treatment/therapy.

Friend with Irritable Bowel Syndrome, another illness that was/is

heavily psychologized got so ill doctors said she need surgery to

remove significant portion of intestines.

Admitted to hospital and prepped but doctors found comorbid infection

that required treatment before they felt safe to proceed with surgery.

Received abx for hindering infection.

IBS mysteriously improves.

Begs doctors for more abx since it seemed to have such an effect.

Doctors refuse.

Large aggressive husband threatens to beat doctors to bloody pulp if

they don't try the abx.

Doctors prescribe abx.

Ten years later - no surgery and still improved.

-

April 23, 2005

Large aggressive husbands obviously come in handy. Would be a great

idea for a rental agency.

Re IBS, I was told I had it. Had some incredible stress a few years

ago and gi symptoms were fine. I was also too weakened to be out of

bed very much.

Got better a few months later, went for a walk too far, too fast,

dizziness and gi symptoms struck me the next day. Conclusion: gi

symptoms caused by overexertion, not stress, not IBS. CFIDS crash

affecting digestion, in other words.

Helen

>

> Little story about illness presentation and sheer determination

having

> an impact on treatment/therapy.

>

> Friend with Irritable Bowel Syndrome, another illness that was/is

> heavily psychologized got so ill doctors said she need surgery to

> remove significant portion of intestines.

> Admitted to hospital and prepped but doctors found comorbid

infection

> that required treatment before they felt safe to proceed with

surgery.

> Received abx for hindering infection.

> IBS mysteriously improves.

> Begs doctors for more abx since it seemed to have such an effect.

> Doctors refuse.

> Large aggressive husband threatens to beat doctors to bloody pulp

if

> they don't try the abx.

> Doctors prescribe abx.

> Ten years later - no surgery and still improved.

> -

April 23, 2005

Hi All.

Just a few points.

Viet Nam veterans have never claimed or been accused of having CFIDS

in spite of being one of the most stress affected groups in our

society.

There is a disorder that results from exposure to stress, it is

called Post Traumatic Stress Disorder. It's symptoms are very

different from CFIDS

The Veterans Affairs Department, the federal government agency in

charge of investigating Gulf War Illness (GWI), spent 2 years

reviewing research and concluded in October 2004 that it will not

allocate any more money to pay for studies that propose stress as the

primary cause of GWI. The review panel found that more recent

studies suggest GWI is neurological, apparently linked to exposure to

toxins encountered during the war, causing brain damage. This is

after over a decade of studies concluding that stress was the cause

of GWI.

Wessely and his associates in the UK have to exclude participants

with ME/CFIDS from their studies and include people who have chronic

fatigue NOT ME/CFIDS in order to make their stress theory work.

on said that the happiness he occasionally experienced

as a Beatle was nothing compared to the ecstasy he achieved through

meditation. So if happiness is a stress, meditating can cause

extreme stress.

I agree that stress can weaken the immune system and cause many

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