Re: Stress and cortisol, was: Introduction

[Guest guest]

Maybe someone else will already have jumped in, but in any case. A

robust response to stress, you start out with a low " resting "

cortisol, have an acute stress, have a sharp spike of cortisol in

response, deal with the stress, and then return quickly and robustly

to baseline.

In a chronically elevated situation, you have a higher resting

baseline. You spike in response to stress, and start to recover, but

you don't go back even to your higher resting baseline. You have an

echo spike that your internal biology generates, that is almost as

high as your first spike.

So you stress yourself out a lot more!

> > > > >

> > > > > Hi Rich,

> > > > > I saw your answer about how the mitochondria issue relates to

> > > > gluatathione depletion. Do you have a theory about how the

> > genetic

> > > > inability to eliminate mold toxins relates to gluathione

> > depletion?

> > > >

> > > > ***No, I don't, but I wish I did! I have a hunch that there is

> > going

> > > > to be a connection, but I haven't figured it out yet. This is

> > one

> > > > of the things I'd like to do, along with about a million

> others,

> > > > unfortunately! I would first need to get my brain around the

> > > > mechanisms that Dr. Shoemaker has come up with for mold

> illness,

> > and

> > > > I haven't totally done that yet, though I have his book and his

> > > > recent slides from a conference. I'm not sure when I'm going

> to

> > be

> > > > able to do it.

> > > > >

> > > > > Seems like a fair % of the new research and theories that

> come

> > out

> > > > apply to me. I haven't had my genes tested but the

> > Mitrochondria

> > > > problem, but the definition sounds like me. I had glutathione

> > > > depletion from mercury fillings. I have genetic

> > hypercoagulation

> > > > defects. And I have the mold gene. (Plus and IgG subclass

> > > > deficiency and the class CFS immune abnormalities.) Then I

> > started

> > > > my illness with CMV and EBV, so that may have been an

> > environmental

> > > > trigger.

> > > >

> > > > ***I hear you. It's this kind of story that makes me believe

> > that

> > > > there is a connection, too.

> > > > >

> > > > > Do you suspect that most people that get CFS will turn out to

> > have

> > > > a number of these types of things (genetics and environment)

> > pushing

> > > > them towards CFS?

> > > >

> > > > ***Yes, I do. We don't have a good body of published data on

> > the

> > > > genetic polymorphisms in CFS yet, and that's something we

> sorely

> > > > need. I hope it will happen soon, and I've written to the

> > research

> > > > groups doing the genomics in CFS about this. I think it's very

> > > > likely that different PWCs will turn out to have different

> > > > combinations of polymorphisms in a fairly large set of genes.

> > The

> > > > autism researhcers are estimating that polymorphisms in 20 or

> 30

> > > > genes will be ultimately found to be important for that

> > disorder.

> > > > With that large a number, and all the possible polymorphisms in

> > each

> > > > one, I think there has to be subsets within that population,

> and

> > I

> > > > think that corresponds to the emphasis in DAN! on tailoring the

> > > > treatment to the individual, based on what is found to work. I

> > > > think the same will be found in CFS, and hopefully it will help

> > to

> > > > illuminate the different subsets, which we know are there,

> based

> > on

> > > > various types of research as well as the differences in

> response

> > to

> > > > various treatments that PWCs report. On the environmental

> side,

> > I

> > > > think there is also no question that PWCs have had big

> > differences

> > > > in environmental factors. I've read quite a few histories, and

> > they

> > > > are all over the map. And I think that a variety of physical,

> > > > chemical, biological and psychological/emotional factors can

> all

> > be

> > > > rolled together to produce the same effects. The common

> > > > denominators in these things is that they raise cortisol

> > (initially)

> > > > and adrenaline, and they deplete glutathione. For some people,

> > it

> > > > really seems as though a chemical toxin was responsible. For

> > some

> > > > it really seems that emotional stress played a big part. For

> > some,

> > > > it seems that a variety of infections played a major role. And

> > so

> > > > on.

> > > >

> > > > I ask because I think a lot of people hope there is one thing

> > that

> > > > is going to make them well, and I wonder if that will be true

> > for

> > > > many people.

> > > >

> > > > ***So far, I don't know of a " blanket " way to deal with all

> > cases of

> > > > CFS. I guess I doubt that there will be one. I do think that

> > this

> > > > sulfur metabolism block with glutathione depletion will be

> found

> > to

> > > > be a factor in many or most PWCs, though. What set it off will

> > be

> > > > different in different PWCs, and I think that has to be

> > identified

> > > > and dealt with too, to make sure PWCs don't relapse.

> > > >

> > > > Personally I solved things one at a time: glutathione

> > depletion,

> > > > mercury elimination, constant viral and bacterial elimination,

> > blood

> > > > thinning, and those all helped some. But it wasn't until I was

> > > > removed from mold that I was truly " well " . However if I had

> done

> > > > that step first without the other things, maybe the result

> would

> > not

> > > > have been the same.

> > > >

> > > > ***I hear you. It's hard to say for sure. Maybe we will get

> to

> > an

> > > > understanding of how mold sensitivity ties in with glutathione

> > > > depletion. I hope so. My problem is trying to figure out

> which

> > > > problem to work on first. They're all important, in my

> opinion,

> > and

> > > > all very interesting, too.

> > > >

> > > > Lately I've been trying to leverage my efforts by trying to

> > interest

> > > > the rest of the research community in looking at some of these

> > > > things. Seeing this gene expression stuff come out about the

> > > > mitochondria is very encouraging. I'm hopeful that that will

> > have

> > > > an impact. The mitochondria have not been viewed as a trendy

> > > > research area lately, because quite a lot is already known

> about

> > > > what goes on in there. So the basic researchers at NIH would

> > prefer

> > > > to work on other things, such as the neuroendocrineimmune

> > stuff.

> > > > That's all very interesting, but I think it is downstream in

> the

> > > > pathogenesis. I did receive a pretty positive response from

> > Eleanor

> > > > Hanna, who coordinates the CFS research at the NIH when I sent

> > my

> > > > autism-CFS writeup to her. The folks on the Gulf War Illnesses

> > > > Research Advisory Committee have also responded favorably to

> > this.

> > > > I think that if and when Myhill gets her mitochondrial

> > paper

> > > > published, that will also have a good impact.

> > > > >

> > > > > Thanks

> > > > > Doris

> > > >

> > > > ***Thank you for raising this subject.

> > > >

> > > > Rich

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

So with unending stress, you end up with a constant flooding of

cortisol? Or a series of unending spikes of cortisol? I'm having

trouble visualizing this.

Does cortisol go everywhere in the body? All I know is about a

flooding of cortisol on the brain.

> > > > > >

> > > > > > Hi Rich,

> > > > > > I saw your answer about how the mitochondria issue

relates to

> > > > > gluatathione depletion. Do you have a theory about how the

> > > genetic

> > > > > inability to eliminate mold toxins relates to gluathione

> > > depletion?

> > > > >

> > > > > ***No, I don't, but I wish I did! I have a hunch that there

is

> > > going

> > > > > to be a connection, but I haven't figured it out yet. This

is

> > > one

> > > > > of the things I'd like to do, along with about a million

> > others,

> > > > > unfortunately! I would first need to get my brain around

the

> > > > > mechanisms that Dr. Shoemaker has come up with for mold

> > illness,

> > > and

> > > > > I haven't totally done that yet, though I have his book and

his

> > > > > recent slides from a conference. I'm not sure when I'm

going

> > to

> > > be

> > > > > able to do it.

> > > > > >

> > > > > > Seems like a fair % of the new research and theories that

> > come

> > > out

> > > > > apply to me. I haven't had my genes tested but the

> > > Mitrochondria

> > > > > problem, but the definition sounds like me. I had

glutathione

> > > > > depletion from mercury fillings. I have genetic

> > > hypercoagulation

> > > > > defects. And I have the mold gene. (Plus and IgG subclass

> > > > > deficiency and the class CFS immune abnormalities.) Then I

> > > started

> > > > > my illness with CMV and EBV, so that may have been an

> > > environmental

> > > > > trigger.

> > > > >

> > > > > ***I hear you. It's this kind of story that makes me

believe

> > > that

> > > > > there is a connection, too.

> > > > > >

> > > > > > Do you suspect that most people that get CFS will turn

out to

> > > have

> > > > > a number of these types of things (genetics and

environment)

> > > pushing

> > > > > them towards CFS?

> > > > >

> > > > > ***Yes, I do. We don't have a good body of published data

on

> > > the

> > > > > genetic polymorphisms in CFS yet, and that's something we

> > sorely

> > > > > need. I hope it will happen soon, and I've written to the

> > > research

> > > > > groups doing the genomics in CFS about this. I think it's

very

> > > > > likely that different PWCs will turn out to have different

> > > > > combinations of polymorphisms in a fairly large set of

genes.

> > > The

> > > > > autism researhcers are estimating that polymorphisms in 20

or

> > 30

> > > > > genes will be ultimately found to be important for that

> > > disorder.

> > > > > With that large a number, and all the possible

polymorphisms in

> > > each

> > > > > one, I think there has to be subsets within that

population,

> > and

> > > I

> > > > > think that corresponds to the emphasis in DAN! on tailoring

the

> > > > > treatment to the individual, based on what is found to

work. I

> > > > > think the same will be found in CFS, and hopefully it will

help

> > > to

> > > > > illuminate the different subsets, which we know are there,

> > based

> > > on

> > > > > various types of research as well as the differences in

> > response

> > > to

> > > > > various treatments that PWCs report. On the environmental

> > side,

> > > I

> > > > > think there is also no question that PWCs have had big

> > > differences

> > > > > in environmental factors. I've read quite a few histories,

and

> > > they

> > > > > are all over the map. And I think that a variety of

physical,

> > > > > chemical, biological and psychological/emotional factors

can

> > all

> > > be

> > > > > rolled together to produce the same effects. The common

> > > > > denominators in these things is that they raise cortisol

> > > (initially)

> > > > > and adrenaline, and they deplete glutathione. For some

people,

> > > it

> > > > > really seems as though a chemical toxin was responsible.

For

> > > some

> > > > > it really seems that emotional stress played a big part.

For

> > > some,

> > > > > it seems that a variety of infections played a major role.

And

> > > so

> > > > > on.

> > > > >

> > > > > I ask because I think a lot of people hope there is one

thing

> > > that

> > > > > is going to make them well, and I wonder if that will be

true

> > > for

> > > > > many people.

> > > > >

> > > > > ***So far, I don't know of a " blanket " way to deal with all

> > > cases of

> > > > > CFS. I guess I doubt that there will be one. I do think

that

> > > this

> > > > > sulfur metabolism block with glutathione depletion will be

> > found

> > > to

> > > > > be a factor in many or most PWCs, though. What set it off

will

> > > be

> > > > > different in different PWCs, and I think that has to be

> > > identified

> > > > > and dealt with too, to make sure PWCs don't relapse.

> > > > >

> > > > > Personally I solved things one at a time: glutathione

> > > depletion,

> > > > > mercury elimination, constant viral and bacterial

elimination,

> > > blood

> > > > > thinning, and those all helped some. But it wasn't until I

was

> > > > > removed from mold that I was truly " well " . However if I had

> > done

> > > > > that step first without the other things, maybe the result

> > would

> > > not

> > > > > have been the same.

> > > > >

> > > > > ***I hear you. It's hard to say for sure. Maybe we will

get

> > to

> > > an

> > > > > understanding of how mold sensitivity ties in with

glutathione

> > > > > depletion. I hope so. My problem is trying to figure out

> > which

> > > > > problem to work on first. They're all important, in my

> > opinion,

> > > and

> > > > > all very interesting, too.

> > > > >

> > > > > Lately I've been trying to leverage my efforts by trying to

> > > interest

> > > > > the rest of the research community in looking at some of

these

> > > > > things. Seeing this gene expression stuff come out about

the

> > > > > mitochondria is very encouraging. I'm hopeful that that

will

> > > have

> > > > > an impact. The mitochondria have not been viewed as a

trendy

> > > > > research area lately, because quite a lot is already known

> > about

> > > > > what goes on in there. So the basic researchers at NIH

would

> > > prefer

> > > > > to work on other things, such as the neuroendocrineimmune

> > > stuff.

> > > > > That's all very interesting, but I think it is downstream

in

> > the

> > > > > pathogenesis. I did receive a pretty positive response from

> > > Eleanor

> > > > > Hanna, who coordinates the CFS research at the NIH when I

sent

> > > my

> > > > > autism-CFS writeup to her. The folks on the Gulf War

Illnesses

> > > > > Research Advisory Committee have also responded favorably

to

> > > this.

> > > > > I think that if and when Myhill gets her

mitochondrial

> > > paper

> > > > > published, that will also have a good impact.

> > > > > >

> > > > > > Thanks

> > > > > > Doris

> > > > >

> > > > > ***Thank you for raising this subject.

> > > > >

> > > > > Rich

> > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

Perhaps. But what I am trying to say is that if your cortisol is

chronically upregulated--from whatever cause--you are going to not

only have higher daily " stress " on your system, but you also respond

to stress far less robustly. A robust response is a big spike of

cortisol in response to stress and then, when the stress is over, a

return quickly to baseline (low levels). For a person with high

cortisol levels (i.e. chronic stress for whatever reasons), that

response is NOT robust. They do spike in response to stress, but they

don't return to baseline quickly. They have echoing spikes, that are

generated by their own system EVEN THOUGH THE stress is gone. Now,

some of this is genetic. One study with allergic kids found that their

stress response, even during periods they wree not suffering from

allergies, was not as healthy as kids without allergies.

> > > > > > >

> > > > > > > Hi Rich,

> > > > > > > I saw your answer about how the mitochondria issue

> relates to

> > > > > > gluatathione depletion. Do you have a theory about how the

> > > > genetic

> > > > > > inability to eliminate mold toxins relates to gluathione

> > > > depletion?

> > > > > >

> > > > > > ***No, I don't, but I wish I did! I have a hunch that there

> is

> > > > going

> > > > > > to be a connection, but I haven't figured it out yet. This

> is

> > > > one

> > > > > > of the things I'd like to do, along with about a million

> > > others,

> > > > > > unfortunately! I would first need to get my brain around

> the

> > > > > > mechanisms that Dr. Shoemaker has come up with for mold

> > > illness,

> > > > and

> > > > > > I haven't totally done that yet, though I have his book and

> his

> > > > > > recent slides from a conference. I'm not sure when I'm

> going

> > > to

> > > > be

> > > > > > able to do it.

> > > > > > >

> > > > > > > Seems like a fair % of the new research and theories that

> > > come

> > > > out

> > > > > > apply to me. I haven't had my genes tested but the

> > > > Mitrochondria

> > > > > > problem, but the definition sounds like me. I had

> glutathione

> > > > > > depletion from mercury fillings. I have genetic

> > > > hypercoagulation

> > > > > > defects. And I have the mold gene. (Plus and IgG subclass

> > > > > > deficiency and the class CFS immune abnormalities.) Then I

> > > > started

> > > > > > my illness with CMV and EBV, so that may have been an

> > > > environmental

> > > > > > trigger.

> > > > > >

> > > > > > ***I hear you. It's this kind of story that makes me

> believe

> > > > that

> > > > > > there is a connection, too.

> > > > > > >

> > > > > > > Do you suspect that most people that get CFS will turn

> out to

> > > > have

> > > > > > a number of these types of things (genetics and

> environment)

> > > > pushing

> > > > > > them towards CFS?

> > > > > >

> > > > > > ***Yes, I do. We don't have a good body of published data

> on

> > > > the

> > > > > > genetic polymorphisms in CFS yet, and that's something we

> > > sorely

> > > > > > need. I hope it will happen soon, and I've written to the

> > > > research

> > > > > > groups doing the genomics in CFS about this. I think it's

> very

> > > > > > likely that different PWCs will turn out to have different

> > > > > > combinations of polymorphisms in a fairly large set of

> genes.

> > > > The

> > > > > > autism researhcers are estimating that polymorphisms in 20

> or

> > > 30

> > > > > > genes will be ultimately found to be important for that

> > > > disorder.

> > > > > > With that large a number, and all the possible

> polymorphisms in

> > > > each

> > > > > > one, I think there has to be subsets within that

> population,

> > > and

> > > > I

> > > > > > think that corresponds to the emphasis in DAN! on tailoring

> the

> > > > > > treatment to the individual, based on what is found to

> work. I

> > > > > > think the same will be found in CFS, and hopefully it will

> help

> > > > to

> > > > > > illuminate the different subsets, which we know are there,

> > > based

> > > > on

> > > > > > various types of research as well as the differences in

> > > response

> > > > to

> > > > > > various treatments that PWCs report. On the environmental

> > > side,

> > > > I

> > > > > > think there is also no question that PWCs have had big

> > > > differences

> > > > > > in environmental factors. I've read quite a few histories,

> and

> > > > they

> > > > > > are all over the map. And I think that a variety of

> physical,

> > > > > > chemical, biological and psychological/emotional factors

> can

> > > all

> > > > be

> > > > > > rolled together to produce the same effects. The common

> > > > > > denominators in these things is that they raise cortisol

> > > > (initially)

> > > > > > and adrenaline, and they deplete glutathione. For some

> people,

> > > > it

> > > > > > really seems as though a chemical toxin was responsible.

> For

> > > > some

> > > > > > it really seems that emotional stress played a big part.

> For

> > > > some,

> > > > > > it seems that a variety of infections played a major role.

> And

> > > > so

> > > > > > on.

> > > > > >

> > > > > > I ask because I think a lot of people hope there is one

> thing

> > > > that

> > > > > > is going to make them well, and I wonder if that will be

> true

> > > > for

> > > > > > many people.

> > > > > >

> > > > > > ***So far, I don't know of a " blanket " way to deal with all

> > > > cases of

> > > > > > CFS. I guess I doubt that there will be one. I do think

> that

> > > > this

> > > > > > sulfur metabolism block with glutathione depletion will be

> > > found

> > > > to

> > > > > > be a factor in many or most PWCs, though. What set it off

> will

> > > > be

> > > > > > different in different PWCs, and I think that has to be

> > > > identified

> > > > > > and dealt with too, to make sure PWCs don't relapse.

> > > > > >

> > > > > > Personally I solved things one at a time: glutathione

> > > > depletion,

> > > > > > mercury elimination, constant viral and bacterial

> elimination,

> > > > blood

> > > > > > thinning, and those all helped some. But it wasn't until I

> was

> > > > > > removed from mold that I was truly " well " . However if I had

> > > done

> > > > > > that step first without the other things, maybe the result

> > > would

> > > > not

> > > > > > have been the same.

> > > > > >

> > > > > > ***I hear you. It's hard to say for sure. Maybe we will

> get

> > > to

> > > > an

> > > > > > understanding of how mold sensitivity ties in with

> glutathione

> > > > > > depletion. I hope so. My problem is trying to figure out

> > > which

> > > > > > problem to work on first. They're all important, in my

> > > opinion,

> > > > and

> > > > > > all very interesting, too.

> > > > > >

> > > > > > Lately I've been trying to leverage my efforts by trying to

> > > > interest

> > > > > > the rest of the research community in looking at some of

> these

> > > > > > things. Seeing this gene expression stuff come out about

> the

> > > > > > mitochondria is very encouraging. I'm hopeful that that

> will

> > > > have

> > > > > > an impact. The mitochondria have not been viewed as a

> trendy

> > > > > > research area lately, because quite a lot is already known

> > > about

> > > > > > what goes on in there. So the basic researchers at NIH

> would

> > > > prefer

> > > > > > to work on other things, such as the neuroendocrineimmune

> > > > stuff.

> > > > > > That's all very interesting, but I think it is downstream

> in

> > > the

> > > > > > pathogenesis. I did receive a pretty positive response from

> > > > Eleanor

> > > > > > Hanna, who coordinates the CFS research at the NIH when I

> sent

> > > > my

> > > > > > autism-CFS writeup to her. The folks on the Gulf War

> Illnesses

> > > > > > Research Advisory Committee have also responded favorably

> to

> > > > this.

> > > > > > I think that if and when Myhill gets her

> mitochondrial

> > > > paper

> > > > > > published, that will also have a good impact.

> > > > > > >

> > > > > > > Thanks

> > > > > > > Doris

> > > > > >

> > > > > > ***Thank you for raising this subject.

> > > > > >

> > > > > > Rich

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

[Guest guest]

So what is the overall result of that lack of robustness and

continual spiking? And what are the physical manifestations of

that?

Is that what's called PTSD, or something else, or several things,

or...what?

> >

> > So with unending stress, you end up with a constant flooding of

> > cortisol? Or a series of unending spikes of cortisol? I'm

having

> > trouble visualizing this.

> >

> > Does cortisol go everywhere in the body? All I know is about a

> > flooding of cortisol on the brain.

> >

> >

> >

[Guest guest]

,

In CFS, I think it starts for many people with long-term elevated

cortisol in response to high long-term stress. This high cortisol

and the high adrenaline that goes with it contribute to the

depletion of glutathione and shift the immune system to a Th2

response. Then, when the glutathione gets low enough, the latent

viruses and intracellular bacteria that are already present inside

cells in the body are able to reactivate. The immune system detects

the infection and tries to respond, but can't mount the needed Th1

response because it is not able to get enough glutathione. In the

process of trying, it takes the glutathione precursors that would

have been used by the skeletal muscles, and they go low in

glutathione, too. This allows superoxide to rise in them, producing

partial blockades in their oxidative metabolism, and dropping the

rate of production of ATP. This robs the muscle fibers of their

source of energy, and that produces the physical fatigue that

accompanies the flu-like feelings arising from the failed immune

response in the opening scene of sudden onset CFS.

Later on in the disease process, there is a blunting of the HPA

(hypothalamus-pituitary-adrenal) axis, and that leads to a drop in

cortisol. Nobody knows exactly what causes this yet, but it may

arise higher up in the brain, such as at the hippocampus, which

influences the operation of the HPA axis. By the time most PWCs

have their cortisol measured, they are already in this stage, and

their cortisol is below normal and sometimes not timed properly with

the day-night cycle.

Rich

> > > > > > >

> > > > > > > Hi Rich,

> > > > > > > I saw your answer about how the mitochondria issue

> relates to

> > > > > > gluatathione depletion. Do you have a theory about how

the

> > > > genetic

> > > > > > inability to eliminate mold toxins relates to gluathione

> > > > depletion?

> > > > > >

> > > > > > ***No, I don't, but I wish I did! I have a hunch that

there

> is

> > > > going

> > > > > > to be a connection, but I haven't figured it out yet.

This

> is

> > > > one

> > > > > > of the things I'd like to do, along with about a million

> > > others,

> > > > > > unfortunately! I would first need to get my brain

around

> the

> > > > > > mechanisms that Dr. Shoemaker has come up with for mold

> > > illness,

> > > > and

> > > > > > I haven't totally done that yet, though I have his book

and

> his

> > > > > > recent slides from a conference. I'm not sure when I'm

> going

> > > to

> > > > be

> > > > > > able to do it.

> > > > > > >

> > > > > > > Seems like a fair % of the new research and theories

that

> > > come

> > > > out

> > > > > > apply to me. I haven't had my genes tested but the

> > > > Mitrochondria

> > > > > > problem, but the definition sounds like me. I had

> glutathione

> > > > > > depletion from mercury fillings. I have genetic

> > > > hypercoagulation

> > > > > > defects. And I have the mold gene. (Plus and IgG

subclass

> > > > > > deficiency and the class CFS immune abnormalities.)

Then I

> > > > started

> > > > > > my illness with CMV and EBV, so that may have been an

> > > > environmental

> > > > > > trigger.

> > > > > >

> > > > > > ***I hear you. It's this kind of story that makes me

> believe

> > > > that

> > > > > > there is a connection, too.

> > > > > > >

> > > > > > > Do you suspect that most people that get CFS will turn

> out to

> > > > have

> > > > > > a number of these types of things (genetics and

> environment)

> > > > pushing

> > > > > > them towards CFS?

> > > > > >

> > > > > > ***Yes, I do. We don't have a good body of published

data

> on

> > > > the

> > > > > > genetic polymorphisms in CFS yet, and that's something

we

> > > sorely

> > > > > > need. I hope it will happen soon, and I've written to

the

> > > > research

> > > > > > groups doing the genomics in CFS about this. I think

it's

> very

> > > > > > likely that different PWCs will turn out to have

different

> > > > > > combinations of polymorphisms in a fairly large set of

> genes.

> > > > The

> > > > > > autism researhcers are estimating that polymorphisms in

20

> or

> > > 30

> > > > > > genes will be ultimately found to be important for that

> > > > disorder.

> > > > > > With that large a number, and all the possible

> polymorphisms in

> > > > each

> > > > > > one, I think there has to be subsets within that

> population,

> > > and

> > > > I

> > > > > > think that corresponds to the emphasis in DAN! on

tailoring

> the

> > > > > > treatment to the individual, based on what is found to

> work. I

> > > > > > think the same will be found in CFS, and hopefully it

will

> help

> > > > to

> > > > > > illuminate the different subsets, which we know are

there,

> > > based

> > > > on

> > > > > > various types of research as well as the differences in

> > > response

> > > > to

> > > > > > various treatments that PWCs report. On the

environmental

> > > side,

> > > > I

> > > > > > think there is also no question that PWCs have had big

> > > > differences

> > > > > > in environmental factors. I've read quite a few

histories,

> and

> > > > they

> > > > > > are all over the map. And I think that a variety of

> physical,

> > > > > > chemical, biological and psychological/emotional factors

> can

> > > all

> > > > be

> > > > > > rolled together to produce the same effects. The common

> > > > > > denominators in these things is that they raise cortisol

> > > > (initially)

> > > > > > and adrenaline, and they deplete glutathione. For some

> people,

> > > > it

> > > > > > really seems as though a chemical toxin was

responsible.

> For

> > > > some

> > > > > > it really seems that emotional stress played a big

part.

> For

> > > > some,

> > > > > > it seems that a variety of infections played a major

role.

> And

> > > > so

> > > > > > on.

> > > > > >

> > > > > > I ask because I think a lot of people hope there is

one

> thing

> > > > that

> > > > > > is going to make them well, and I wonder if that will be

> true

> > > > for

> > > > > > many people.

> > > > > >

> > > > > > ***So far, I don't know of a " blanket " way to deal with

all

> > > > cases of

> > > > > > CFS. I guess I doubt that there will be one. I do

think

> that

> > > > this

> > > > > > sulfur metabolism block with glutathione depletion will

be

> > > found

> > > > to

> > > > > > be a factor in many or most PWCs, though. What set it

off

> will

> > > > be

> > > > > > different in different PWCs, and I think that has to be

> > > > identified

> > > > > > and dealt with too, to make sure PWCs don't relapse.

> > > > > >

> > > > > > Personally I solved things one at a time: glutathione

> > > > depletion,

> > > > > > mercury elimination, constant viral and bacterial

> elimination,

> > > > blood

> > > > > > thinning, and those all helped some. But it wasn't

until I

> was

> > > > > > removed from mold that I was truly " well " . However if I

had

> > > done

> > > > > > that step first without the other things, maybe the

result

> > > would

> > > > not

> > > > > > have been the same.

> > > > > >

> > > > > > ***I hear you. It's hard to say for sure. Maybe we

will

> get

> > > to

> > > > an

> > > > > > understanding of how mold sensitivity ties in with

> glutathione

> > > > > > depletion. I hope so. My problem is trying to figure

out

> > > which

> > > > > > problem to work on first. They're all important, in my

> > > opinion,

> > > > and

> > > > > > all very interesting, too.

> > > > > >

> > > > > > Lately I've been trying to leverage my efforts by trying

to

> > > > interest

> > > > > > the rest of the research community in looking at some of

> these

> > > > > > things. Seeing this gene expression stuff come out

about

> the

> > > > > > mitochondria is very encouraging. I'm hopeful that that

> will

> > > > have

> > > > > > an impact. The mitochondria have not been viewed as a

> trendy

> > > > > > research area lately, because quite a lot is already

known

> > > about

> > > > > > what goes on in there. So the basic researchers at NIH

> would

> > > > prefer

> > > > > > to work on other things, such as the

neuroendocrineimmune

> > > > stuff.

> > > > > > That's all very interesting, but I think it is

downstream

> in

> > > the

> > > > > > pathogenesis. I did receive a pretty positive response

from

> > > > Eleanor

> > > > > > Hanna, who coordinates the CFS research at the NIH when

I

> sent

> > > > my

> > > > > > autism-CFS writeup to her. The folks on the Gulf War

> Illnesses

> > > > > > Research Advisory Committee have also responded

favorably

> to

> > > > this.

> > > > > > I think that if and when Myhill gets her

> mitochondrial

> > > > paper

> > > > > > published, that will also have a good impact.

> > > > > > >

> > > > > > > Thanks

> > > > > > > Doris

> > > > > >

> > > > > > ***Thank you for raising this subject.

> > > > > >

> > > > > > Rich

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

[Guest guest]

There are global effects, none of them good.

You end up depleting your stores of cortisol.

You end up depressing your immune system.

You end up with exhausted adrenals because you're in a constant state

of " fight or flight. "

You end up with all kinds of problems. Its bad in every way.

> > >

> > > So with unending stress, you end up with a constant flooding of

> > > cortisol? Or a series of unending spikes of cortisol? I'm

> having

> > > trouble visualizing this.

> > >

> > > Does cortisol go everywhere in the body? All I know is about a

> > > flooding of cortisol on the brain.

> > >

> > >

> > >

>

[Guest guest]

On Feb 5, 2006, at 6:38 PM, jill1313 wrote:

> Perhaps. But what I am trying to say is that if your cortisol is

> chronically upregulated--from whatever cause--you are going to not

> only have higher daily " stress " on your system, but you also respond

> to stress far less robustly. A robust response is a big spike of

> cortisol in response to stress and then, when the stress is over, a

> return quickly to baseline (low levels). For a person with high

> cortisol levels (i.e. chronic stress for whatever reasons), that

> response is NOT robust. They do spike in response to stress, but they

> don't return to baseline quickly. They have echoing spikes, that are

> generated by their own system EVEN THOUGH THE stress is gone. Now,

> some of this is genetic. One study with allergic kids found that their

> stress response, even during periods they wree not suffering from

> allergies, was not as healthy as kids without allergies.

Oh, Lordy. I'm on another ME/CFS list where even *suggesting* that

stress of any kind might have something to do with our illness will

get you yelled at for weeks. This is just such an un-PC position; it

seems that there are quite a few people in our community who have a

hard time distinguishing between physiological stress responses and

the " somatic illnesses " the anti-CFS shrinks accuse us of having.

I'm surprised that this has come up several times in the few months

I've been on this list -- and not one flame war yet.

What's the difference here?

Sara

[Guest guest]

Well I don't know what the other list is but this list is both helpful

anecdotally, and also at times highly scientific and all puzzle pieces

are being considered. Which makes it a rather unique list, because it

takes into account bacterial, viral, mold, genetics, stress, the

autism model ala Baker and Pangborn, you name it. It's a kind of

" putting it all together " list and obviously we ALL know stress is

involved. Maybe the other list is not as scientific?

>

> > Perhaps. But what I am trying to say is that if your cortisol is

> > chronically upregulated--from whatever cause--you are going to not

> > only have higher daily " stress " on your system, but you also respond

> > to stress far less robustly. A robust response is a big spike of

> > cortisol in response to stress and then, when the stress is over, a

> > return quickly to baseline (low levels). For a person with high

> > cortisol levels (i.e. chronic stress for whatever reasons), that

> > response is NOT robust. They do spike in response to stress, but they

> > don't return to baseline quickly. They have echoing spikes, that are

> > generated by their own system EVEN THOUGH THE stress is gone. Now,

> > some of this is genetic. One study with allergic kids found that their

> > stress response, even during periods they wree not suffering from

> > allergies, was not as healthy as kids without allergies.

>

> Oh, Lordy. I'm on another ME/CFS list where even *suggesting* that

> stress of any kind might have something to do with our illness will

> get you yelled at for weeks. This is just such an un-PC position; it

> seems that there are quite a few people in our community who have a

> hard time distinguishing between physiological stress responses and

> the " somatic illnesses " the anti-CFS shrinks accuse us of having.

>

> I'm surprised that this has come up several times in the few months

> I've been on this list -- and not one flame war yet.

>

> What's the difference here?

>

> Sara

>

[Guest guest]

Okay...plus " day and night " schedule. This means " resting " and " not

resting, " right? So...but wait a minute...day and night can also

work independently of that, can't it? It's also a different kettle

of fish?

I think I can digest some of this and sit on the rest of it. I

think....

When I was editing neurological journals and interested in

Alzheimer's, I remember reading that long-term flooding of the brain

with cortisol predisposed some people to develop Alzheimer's

disease. This doesn't seem to fit with your explanation,

though...does it?

This is all really hard to grasp. Especially when you feel like your

brain function is slopping through oatmeal half the time anyway.

But, thanks, Rich.

(I think I'm also discovering why, frequently, old folks just smile

and nod their heads a lot!)

> >

> > So with unending stress, you end up with a constant flooding of

> > cortisol? Or a series of unending spikes of cortisol? I'm

having

> > trouble visualizing this.

> >

> > Does cortisol go everywhere in the body? All I know is about a

> > flooding of cortisol on the brain.

> >

> >

[Guest guest]

Yes...I'm afraid I've also ended up with " me. " Sigh.

> >

> > So what is the overall result of that lack of robustness and

> > continual spiking? And what are the physical manifestations of

> > that?

> >

> > Is that what's called PTSD, or something else, or several things,

> > or...what?

> >

> >

> >

> >

[Guest guest]

> I'm surprised that this has come up several times in the few months

> I've been on this list -- and not one flame war yet.

>

> What's the difference here?

>

> Sara

>

Hi Sara.

I think and I have been giving people a break lately. We don't

flame, but you can get an argument out of us about psychological stress

causing CFIDS or how stress can be defined so broadly that it becomes a

meaningless term. But don't worry about that, continue your

conversation.

Tom

[Guest guest]

On Feb 5, 2006, at 7:45 PM, jill1313 wrote:

> Well I don't know what the other list is but this list is both helpful

> anecdotally, and also at times highly scientific and all puzzle pieces

> are being considered. Which makes it a rather unique list, because it

> takes into account bacterial, viral, mold, genetics, stress, the

> autism model ala Baker and Pangborn, you name it. It's a kind of

> " putting it all together " list and obviously we ALL know stress is

> involved. Maybe the other list is not as scientific?

Nope. It's purely political. And, from that standpoint, it seems that

anything remotely like an admission that stress might contribute to

our illness is the next best thing to " capitulating to the

psychologizers " and admitting that they're right: it's all in our heads.

It's refreshing to be in a part of the ME community where there are

no sacred cows, and the focus stays on what's true and what works,

rather than trying to define the limits of disease according to

political objectives. In the long run, I don't think refusing to look

at this or talk about it honestly gets us anywhere constructive,

medically OR politically.

Sara

[Guest guest]

Hi, .

> > >

> > > So with unending stress, you end up with a constant flooding

of

> > > cortisol? Or a series of unending spikes of cortisol? I'm

> having

> > > trouble visualizing this.

> > >

> > > Does cortisol go everywhere in the body? All I know is about

a

> > > flooding of cortisol on the brain.

> > >

> > >

>

[Guest guest]

Hi Rich...below...

> >

> > Okay...plus " day and night " schedule. This means " resting "

> and " not

> > resting, " right? So...but wait a minute...day and night can also

> > work independently of that, can't it? It's also a different

> kettle

> > of fish?

>

> ***What I meant here was that in a normal, healthy person, there is

> a normal diurnal cycle to the average cortisol level. It jumps up

> fairly rapidly in the morning and then steadily decreases during

the

> day and becomes low during hours of darkness, when the melatonin

> rises. It is synchronized with the period of rotation of the

earth,

> i.e. with the hours of sunlight and darkness. Many PWCs do not

have

> high enough cortisol levels, and also their cortisol cycle may not

> be synched properly with the times of sunlight and darkness. In

> addition, their circadian rhythm can drift relative to the sunlight

> and darkness cycle, so that the hours when they sleep can keep

> moving relative to the actual day and night. Usually they drift

> forward, because the biological clock in the suprachiasmic nucleus

> of the brain has a natural period somewhat longer than 24 hours.

So

> if it doesn't properly get or utilize the synch signal that comes

> from photoreceptors in the retinas of the eyes, it runs at a

> somewhat longer period than 24 hours, sort of like what happens to

> the sleep-wake cycle of healthy, normal people if they stay in a

> dark cave for extended periods of time.

Yes, I notice this. I have longer than 24-hour cycles. Sometimes I

think they approach 36 hours really. (But this is hard to judge,

too, if you have to stop and sleep for a while. " Where's the

beginning? " seems to be what I ask myself sometimes. Quite a mess.)

Is there a relation between the cortisol and melatonin, or do they

operate independently from each other...from what's known now, if you

know?

> > When I was editing neurological journals and interested in

> > Alzheimer's, I remember reading that long-term flooding of the

> brain

> > with cortisol predisposed some people to develop Alzheimer's

> > disease. This doesn't seem to fit with your explanation,

> > though...does it?

>

> ***I don't know much about what causes Alzheimer's disease. I

think

> that's still up for grabs. I've been focusing on CFS, and I think

> what I described is what happens in CFS.

I wasn't thinking " causes " here. I was thinking " things that are the

same " (before or during).

> > This is all really hard to grasp. Especially when you feel like

> your

> > brain function is slopping through oatmeal half the time anyway.

> > But, thanks, Rich.

>

> ***You're welcome. Have you had any measurements on your cortisol?

I don't think so. I say that, rather than a firm no, because a few

years ago I had some bloodwork done but I was very ill at the time

and battling an uncooperative (or uncaring?) doctor, so it's hard for

me to say one way or the other what was really done. No health

insurance + lots of illness + no status of being independently

wealthy = hard to get things done.

> > (I think I'm also discovering why, frequently, old folks just

> smile

> > and nod their heads a lot!)

>

> ***Right. I just smiled and nodded.

Yeah, I hear you on that! Thanks, Rich.

[Guest guest]

Hi, Sara.

We've had our share of knock-down, drag-outs about the " S " word on

this list. As Tom said, he and have expressed some rather

strong views about that in the past. There are some here who are

concerned that discussing it in connection with CFS plays into the

hands of those who say that CFS is purely a psychological illness.

Lately, I've been using the word " factors " in place of " stressors, "

and that seems to be less of a lightning rod.

Nobody wants to be told that they have some sort of a weak

character, and that's the reason they are ill, and I think that

produces the " bite " when the " S " word is used.

The way I look at it is this: If you take a human being, and you

subject him or her to enough stress (be it physical, chemical,

biological or psychological/emotional), eventually that person will

crack. After all, we're talking about someone who is only human.

People will crack in different ways. Some will develop heart

disease. Some will develop cancer. Some will lose their minds.

Some will develop chronic fatigue syndrome. And so on.

Which thing will happen and how long it will take to happen will

depend on the person's genetic makeup, the condition they were in

when this started as a result of things that had gone on in their

life before this, what toxins and pathogens they are exposed to,

what kind of nutrition they are getting, what kind and how much

exercise they are getting, how much and what quality of sleep they

are getting, the quality of their air and water, their world view

and state of mind, and probably other factors.

In the situations we are talking about (people with CFS), the stress

was not all applied by someone else, such as a torturer in a prison

camp. Some was indeed applied from outside forces, such as family

and relationships, the need to make a living, and pollution in the

environment, but I think it's also true that some was a result of

lifestyle choices made by the person himself or herself.

As I understand it, the things that infuriate PWCs are as follows:

1. The suggestion that PWCs are sick because they are

somehow " weaker " or somehow have a character flaw that others don't

have, or for some reason they just aren't " up to " handling the

stresses that everyone else copes with every day. (This is

the " macho " position expressed by the " average man on the street. " )

2. The suggestion that whatever illness they have was brought on by

themselves. (This is the " Job's 'friends' " position.)

3. The suggestion that their illness is purely psychological in

nature. (This is the position of some of the British and Dutch

psychologists.)

4. The suggestion that they are not really ill, but just " faking it. "

(This is the position sometimes taken by their family members.)

My response to number 1 is that we are all unique human beings, we

all have strengths and weaknesses, and none of us is invulnerable if

enough stress of the right sort is applied. Also, there are a

variety of causes of CFS, and several of them are totally unrelated

to a person's character.

My response to number 2 is that people don't have a choice about a

lot of things in their lives. They do have a choice about some

things. The causes of a particular case of CFS can fall into the

first category, the second, or some combination. If that doesn't sit

well with people, I'm sorry, but I think it's true. I'm not in a

position to say what the split is for a given case. From a personal

point of view, I'm convinced that some of my lifestyle choices were

involved in my developing rectal cancer a few years ago, but I also

think I inherited some genes that contributed as well.

My response to number 3 is that it is not true for the vast majority

of PWCs that I know and have interacted with. I suspect that among

the population defined by the Oxford criteria for CFS, there may

indeed be some PWCs whose issues are primarily or exclusively

fundamentally psychological. I can't find any other explanation for

the ongoing disagreement over this issue. The British and Dutch

psychiatrists simply cannot be talking about the same group of

people that I have come to know and love.

My response to number 4 is that I have met very few adults who would

prefer to act ill for any length of time when they were not actually

ill. Sure, it happens with kids who don't want to go to school

sometimes. Adults may call in sick when they aren't, sometimes, to

have a day off, but they don't spend it in bed pretending to be

sick! But to actually continue for a long time to pretend to be

sick when they aren't, that's a whole different thing. There may be

a small fraction of people who would do that, but the downside would

seem to be so great compared to the upside that I doubt if many

would for very long. How much fun would that be? It just doesn't

make sense to me.

Rich

>

> > Well I don't know what the other list is but this list is both

helpful

> > anecdotally, and also at times highly scientific and all puzzle

pieces

> > are being considered. Which makes it a rather unique list,

because it

> > takes into account bacterial, viral, mold, genetics, stress, the

> > autism model ala Baker and Pangborn, you name it. It's a kind of

> > " putting it all together " list and obviously we ALL know stress

is

> > involved. Maybe the other list is not as scientific?

>

> Nope. It's purely political. And, from that standpoint, it seems

that

> anything remotely like an admission that stress might contribute

to

> our illness is the next best thing to " capitulating to the

> psychologizers " and admitting that they're right: it's all in our

heads.

>

> It's refreshing to be in a part of the ME community where there

are

> no sacred cows, and the focus stays on what's true and what

works,

> rather than trying to define the limits of disease according to

> political objectives. In the long run, I don't think refusing to

look

> at this or talk about it honestly gets us anywhere constructive,

> medically OR politically.

>

> Sara

>

[Guest guest]

>

>

> Is there a relation between the cortisol and melatonin, or do they

> operate independently from each other...from what's known now, if

you

> know?

***They do seem to be linked. I'm not sure how that is done from a

physiological point of view, but the result normally is that when

cortisol is high, melatonin is low, and vice versa.

>

>

> > > When I was editing neurological journals and interested in

> > > Alzheimer's, I remember reading that long-term flooding of the

> > brain

> > > with cortisol predisposed some people to develop Alzheimer's

> > > disease. This doesn't seem to fit with your explanation,

> > > though...does it?

> >

> > ***I don't know much about what causes Alzheimer's disease. I

> think

> > that's still up for grabs. I've been focusing on CFS, and I

think

> > what I described is what happens in CFS.

>

>

> I wasn't thinking " causes " here. I was thinking " things that are

the

> same " (before or during).

***O.K. Well, I do think that cortisol is high in the early part of

CFS, so if that's true in Alzheimer's too, that would be a

similarity.

>

>

> > > This is all really hard to grasp. Especially when you feel

like

> > your

> > > brain function is slopping through oatmeal half the time

anyway.

> > > But, thanks, Rich.

> >

> > ***You're welcome. Have you had any measurements on your

cortisol?

>

>

> I don't think so. I say that, rather than a firm no, because a

few

> years ago I had some bloodwork done but I was very ill at the time

> and battling an uncooperative (or uncaring?) doctor, so it's hard

for

> me to say one way or the other what was really done. No health

> insurance + lots of illness + no status of being independently

> wealthy = hard to get things done.

***Yeah. That's definitely no picnic.

>

>

> > > (I think I'm also discovering why, frequently, old folks just

> > smile

> > > and nod their heads a lot!)

> >

> > ***Right. I just smiled and nodded.

>

> Yeah, I hear you on that! Thanks, Rich.

>

>

***You're welcome.

***Rich

>

[Guest guest]

Very interesting, Rich. You've obviously put a ton of thought into

this. I'm reading through 1-4 and I'm wondering how much those

things are influenced by this culture we're all blessed to be thrust

in the middle of. The culture that says, pretty much, " you get what

you deserve " and that's why the top 1% of everyone is wealthy and

everyone else can justly go to hell. The culture that says " boot

straps, my child. "

I don't know...is this Calvinism? I'm not too " up " on some of these

things. I do know that one of my mother's favorite expressions

was " well, that sounds like one of those things you'll just have to

learn to overcome. " This kind of opining was always reserved for

someone else, and it wasn't till she got quite elderly and infirm

herself that she realized she was stuck in her own quicksand.

Environment is made up of many things not the least of which is the

culture we're thrust into, me thinks.

> >

> > > Well I don't know what the other list is but this list is both

> helpful

> > > anecdotally, and also at times highly scientific and all puzzle

> pieces

> > > are being considered. Which makes it a rather unique list,

> because it

> > > takes into account bacterial, viral, mold, genetics, stress, the

> > > autism model ala Baker and Pangborn, you name it. It's a kind of

> > > " putting it all together " list and obviously we ALL know stress

> is

> > > involved. Maybe the other list is not as scientific?

> >

> > Nope. It's purely political. And, from that standpoint, it seems

> that

> > anything remotely like an admission that stress might contribute

> to

> > our illness is the next best thing to " capitulating to the

> > psychologizers " and admitting that they're right: it's all in our

> heads.

> >

> > It's refreshing to be in a part of the ME community where there

> are

> > no sacred cows, and the focus stays on what's true and what

> works,

> > rather than trying to define the limits of disease according to

> > political objectives. In the long run, I don't think refusing to

> look

> > at this or talk about it honestly gets us anywhere constructive,

> > medically OR politically.

> >

> > Sara

> >

>

[Guest guest]

> >

>

> >

> > Is there a relation between the cortisol and melatonin, or do

they

> > operate independently from each other...from what's known now, if

> you

> > know?

>

> ***They do seem to be linked. I'm not sure how that is done from a

> physiological point of view, but the result normally is that when

> cortisol is high, melatonin is low, and vice versa.

That makes all kinds of sense to me and seems to be a good part of

what's happened to me. Now, when does the barometer of things as

they are become part of the actual problem instead of just the

measuring device? You know what I mean?

Thanks...and thank you for this rest of this too.

[Guest guest]

Hi, .

> > ***They do seem to be linked. I'm not sure how that is done

from a

> > physiological point of view, but the result normally is that

when

> > cortisol is high, melatonin is low, and vice versa.

>

> That makes all kinds of sense to me and seems to be a good part of

> what's happened to me. Now, when does the barometer of things as

> they are become part of the actual problem instead of just the

> measuring device? You know what I mean?

Yeah. That's the " vicious circles and interactions " question.

Vicious circles and interactions are very real in CFS. For example,

there's a guy named Harvey Moldovky up in Canada who studies sleep.

A few years ago he did an experiment on healthy young men, in which

he arranged to have them kept awake constantly for a few days

straight. They developed pains that seemed a lot like

fibromyalgia. So there's a horrible vicious circle. If you hurt

too much, you can't sleep. If you don't sleep, you're going to hurt.

Cortisol and melatonin both have important jobs to do. If there is

not enough of them, or they don't occur on the correct cycle, a

bunch of other deleterious things happen. Here's an example: A

study was recently done on women who work on the night shift. One

of the problems with working the night shift is that you are

sleeping during the day, when you have to make special efforts to

darken a room completely. If it isn't as dark as at nighttime, then

less melatonin is secreted by the person trying to sleep, because

the photosensors in the retinas work even if the eyelids are shut.

Melatonin not only promotes sleep, it is also a very powerful

antioxidant and acts to protect against cancer. It was found that

the women who worked nights had a higher breast cancer rate.

Cortisol controls a lot of important things, such as blood pressure

and blood sugar level. When those go off normal, they cause some

more things, and so on. So yes, these signposts along the way all

have their own impacts, and it gets very messy to try to sort it all

out. That's one reason I keep trying to get back to the root of all

this. If you study the downstream effects of CFS, you will never

sort out what's going on. It's just a can of worms, because of all

the interactions and vicious circles. You have to find the

beginning of the pathogenesis. And you aren't going to do it

without coming up with hypotheses, because you're dealing with

a " cow eating grass " situation. Do you know what that is? Here's

the story: Little nie was at school, and it was time for art

period. The teacher gave each kid a piece of paper and some crayons

and told them to draw a picture. After a while the teacher went

around and checked how each kid was doing. All the kids were hard

at it, drawing airplanes and flowers and what have you, except

nie. His paper was blank. So the teacher, taking the gentle

approach, asked, " And what have you drawn, nie? " So nie

said, " It's a cow eating grass. " The teacher asked, " Where is the

grass? " nie said, " The cow ate it. " The teacher asked, " Where

is the cow? " And of course, nie replied, " There was no more

grass, so she went away. "

That's the problem with CFS. By the time you get there to study it,

the train has already gone down the track. There are no instant

replays. So you have to infer what went on from the present

situation and what you know about how things behave. One of the

clever things that the CDC has been doing with the Australians (and

by the way, those are Lloyd and Ian Hickie, who are

psychiatrists!) was just published. They started studying some

people who didn't have CFS yet, but who might get it, because they

had mononucleosis, and a certain fraction of mono cases don't get

well. So they were able to get some data on these people before

they technically had CFS. I think that was pretty clever. It

doesn't answer all our questions, but it is a step closer to finding

out what happens at the beginning of a case of CFS.

>

> Thanks...and thank you for this rest of this too.

>

>

>

***You're welcome, . Thanks for the opportunity to ramble on!

(as he nods and smiles)

***Rich

[Guest guest]

<richvank@...> wrote:

> Which thing will happen and how long it will take to happen will

> depend on the person's genetic makeup, the condition they were in

> when this started as a result of things that had gone on in their

> life before this, what toxins and pathogens they are exposed to,

> what kind of nutrition they are getting, what kind and how much

> exercise they are getting, how much and what quality of sleep they

> are getting, the quality of their air and water, their world view

> and state of mind, and probably other factors.

>

> In the situations we are talking about (people with CFS), the

stress was not all applied by someone else, such as a torturer in a

prison camp. Some was indeed applied from outside forces, such as

family and relationships, the need to make a living, and pollution

in the environment, but I think it's also true that some was a

result of lifestyle choices made by the person himself or herself.

-Rich

>

Hmmm. OK, lets see...

" Pristine mountain resort high in the Sierra Nevada range "

" Mountain people all dedicated to health and fitness "

" Spring water and fresh air "

" Best nutrition available. To this day, Incline STILL doesn't allow

any " fast food " businesses "

" The Incline Village lifestyle "

" Marathon runner, champion swimmer, tennis pro, hang glider

instructor, mountain biker, half of a girls basketball team -

ordinary teachers "

Wow! LOOKIT all those risk factors! Like a disaster waiting to

happen.

We shoulda seen all along what trouble we were making for ourselves!

-

(Somehow, I don't think we're lookin at the same " CFS " )

[Guest guest]

Hi, .

I love your turn of phrase!

At the risk of starting yet another long dialogue, let me say again

that I agree that there are big difference between epidemic (or

cluster) CFS and sporadic CFS. I'm well aware that the CDC started

with cases of epidemic CFS (such as yours) and ended up writing a

case definition that encompasses both epidemic and sporadic CFS

under one umbrella. I was not personally involved in that, and I

know how you feel about how wrong it was, but it's a " fait

accompli. " It's what we have to live with today. I, like you, hope

that we will eventually be able to tease out the different varieties

of CFS and treat each one in its own right. But for now we have

everyone who meets the Fukuda et al. criteria under one roof. I

would say that by far the majority of PWCs on this list have

sporadic CFS. That's what I was addressing when I cooked up that

list last night. I probably should add another category for

epidemic or cluster CFS to include the " originals " like yourself.

Sorry to leave you out. But the person I was addressing it to did

not sound like she has an epidemic case. And the fact seems to be

that we are not seeing new epidemic cases popping up at the moment,

only sporadic ones. That's certainly not to say that there won't be

more epidemic cases in the future. Dr. Hyde and others have listed

a number that have occurred historically. We need to understand

them, too.

Taking a break from the diatribe for a moment, I actually have a

serious question for you. You've shared the fact that mold is a

major issue for you. Here's my question: Do you know whether you

were always sensitive to mold, or whether in the mid 80s something

changed in your sensitivity or in the character of the molds to

which you were exposed? I really would like to understand what

happened to you.

I guess that's it for now.

Rich

>

> > Which thing will happen and how long it will take to happen will

> > depend on the person's genetic makeup, the condition they were

in

> > when this started as a result of things that had gone on in

their

> > life before this, what toxins and pathogens they are exposed to,

> > what kind of nutrition they are getting, what kind and how much

> > exercise they are getting, how much and what quality of sleep

they

> > are getting, the quality of their air and water, their world

view

> > and state of mind, and probably other factors.

> >

> > In the situations we are talking about (people with CFS), the

> stress was not all applied by someone else, such as a torturer in

a

> prison camp. Some was indeed applied from outside forces, such as

> family and relationships, the need to make a living, and pollution

> in the environment, but I think it's also true that some was a

> result of lifestyle choices made by the person himself or herself.

> -Rich

> >

>

> Hmmm. OK, lets see...

> " Pristine mountain resort high in the Sierra Nevada range "

> " Mountain people all dedicated to health and fitness "

> " Spring water and fresh air "

> " Best nutrition available. To this day, Incline STILL doesn't

allow

> any " fast food " businesses "

> " The Incline Village lifestyle "

> " Marathon runner, champion swimmer, tennis pro, hang glider

> instructor, mountain biker, half of a girls basketball team -

> ordinary teachers "

>

> Wow! LOOKIT all those risk factors! Like a disaster waiting to

> happen.

> We shoulda seen all along what trouble we were making for

ourselves!

> -

> (Somehow, I don't think we're lookin at the same " CFS " )

>

[Guest guest]

Rich this is a very important question. Virginia Sherr, a psychiatrist

who contends she almost died from untreated lyme and babesiosis, and

treated them for years and is much better now, believes that chemical

sensitivity, food, drug, mold sensitivity, all these, are outcomes of

chronic infection with lyme. They go away when the infection is taken

care of. This reminds me of what my now cured lymie friend was saying

in our doc's office yesterday to the woman we realized has actually

had lyme for 15 years (The one who got 30 ticks on her at Martha's

Vineyard in 1990)----she said, for 15 years, she was treated for

allergies, they'd skin test her and said they'd never seen someone so

allergic, and now, cured of lyme, she has NO ALLERGIES, no food

allergies, no seasonal allergies, nada.

> Taking a break from the diatribe for a moment, I actually have a

> serious question for you. You've shared the fact that mold is a

> major issue for you. Here's my question: Do you know whether you

> were always sensitive to mold, or whether in the mid 80s something

> changed in your sensitivity or in the character of the molds to

> which you were exposed? I really would like to understand what

> happened to you.

>

> I guess that's it for now.

>

> Rich

>

>

[Guest guest]

Hi, Jill.

I think it's an important question, too. Lyme disease would seem

like a possible trigger for the Incline Village outbreak. If that

happened, though, it would seem that some people would have noticed

the erythema migrans (the characteristic bulls-eye rash). I realize

that every person who gets Lyme doesn't get the rash, but it would

seem that some would in a cluster of that size. I've never heard

any mention of that.

It really does seem that something contagious was involved there,

and it would be interesting if 's mold sensitivity began with

the CFS outbreak.

Rich

>

> Rich this is a very important question. Virginia Sherr, a

psychiatrist

> who contends she almost died from untreated lyme and babesiosis,

and

> treated them for years and is much better now, believes that

chemical

> sensitivity, food, drug, mold sensitivity, all these, are outcomes

of

> chronic infection with lyme. They go away when the infection is

taken

> care of. This reminds me of what my now cured lymie friend was

saying

> in our doc's office yesterday to the woman we realized has

actually

> had lyme for 15 years (The one who got 30 ticks on her at Martha's

> Vineyard in 1990)----she said, for 15 years, she was treated for

> allergies, they'd skin test her and said they'd never seen someone

so

> allergic, and now, cured of lyme, she has NO ALLERGIES, no food

> allergies, no seasonal allergies, nada.

>

> > Taking a break from the diatribe for a moment, I actually have a

> > serious question for you. You've shared the fact that mold is a

> > major issue for you. Here's my question: Do you know whether

you

> > were always sensitive to mold, or whether in the mid 80s

something

> > changed in your sensitivity or in the character of the molds to

> > which you were exposed? I really would like to understand what

> > happened to you.

> >

> > I guess that's it for now.

> >

> > Rich

> >

> >

>

[Guest guest]

Thats a good point. There would have been at least 20% bullseyes, I think

However, some have speculated you only get a bullseye on your second

exposure.

> >

> > Rich this is a very important question. Virginia Sherr, a

> psychiatrist

> > who contends she almost died from untreated lyme and babesiosis,

> and

> > treated them for years and is much better now, believes that

> chemical

> > sensitivity, food, drug, mold sensitivity, all these, are outcomes

> of

> > chronic infection with lyme. They go away when the infection is

> taken

> > care of. This reminds me of what my now cured lymie friend was

> saying

> > in our doc's office yesterday to the woman we realized has

> actually

> > had lyme for 15 years (The one who got 30 ticks on her at Martha's

> > Vineyard in 1990)----she said, for 15 years, she was treated for

> > allergies, they'd skin test her and said they'd never seen someone

> so

> > allergic, and now, cured of lyme, she has NO ALLERGIES, no food

> > allergies, no seasonal allergies, nada.

> >

> > > Taking a break from the diatribe for a moment, I actually have a

> > > serious question for you. You've shared the fact that mold is a

> > > major issue for you. Here's my question: Do you know whether

> you

> > > were always sensitive to mold, or whether in the mid 80s

> something

> > > changed in your sensitivity or in the character of the molds to

> > > which you were exposed? I really would like to understand what

> > > happened to you.

> > >

> > > I guess that's it for now.

> > >

> > > Rich

> > >

> > >

> >

>

[Guest guest]

" rvankonynen " <richvank@...> wrote:

>

> Hi, .

> Taking a break from the diatribe for a moment, I actually have a

> serious question for you. You've shared the fact that mold is a

> major issue for you. Here's my question: Do you know whether you

> were always sensitive to mold, or whether in the mid 80s something

> changed in your sensitivity or in the character of the molds to

> which you were exposed? I really would like to understand what

> happened to you.

> Rich

Yes. I was a patient of Dr Cheney's BEFORE the " Yuppie Flu " went

through and dropped a bunch of us in our tracks.

Guess what my complaint was: " Chronic Fatigue "

Prior to the weird flu, my problems would have been adequately

described as inexplicable fatigue, but after the " ? " happened, the

sensation turned into life destroying godawful drop dead

neurological living death illness that was NOTHING like fatigue.

But got to be called " CFS " anyway.

As I told Dr Cheney: " I have an inexorably increasing reactivity

to mold that gets progressively worse no matter where I live or how

well I take care of myself " . This is what brought me to Dr Cheney's

office in Carnelian Bay in early 1984.

My " susceptibility " to mold was PRIOR and not later as is

automatically assumed, just as it was for the " Truckee teachers " ,

and various other CFSers I have questioned about this phemonenon.

The chronicity of the illness seemed to target those of us who had a

subclinical prior susceptibility to mycotoxins.

Interesting how Dr Shoemakers " 24% " HLA genotype is suggestive of

the " 25% ME group " .

-