Re: Sara and all: Genetics and CFS...

August 29, 2006

Sara wrote:

" So the next question is: Why us? And the most obvious answer -- which

has found solid scientific support -- is that we're genetically

different in ways that make us react differently to virii, toxins,

and other environmental stressors. "

That may be true. I still haven't seen the CDC study (and I'm always suspicious

of any

government agency, as they're so in bed with the pharmaceutical industry).

But I have two questions: Are we born with these different genes, or do our

genes change

due to environmental or dietary or stress factors, etc.? I posted a study twice

now that

showed that the food we eat may change our genes, and no one commented or

replied to

it.

Secondly, did everyone who was tested have these genetic differences? If not,

how do we

explain those who have recovered or are recovering?

Dan

>

> > If u don't mind, I will answer because I have another comment.

> > FFC stands for Fibromyalgia and Fatigue Centers. It is easily

> > googled to find one near u, but they are expensive.

>

> " Expensive " is a relative term. My adventure at FFC has cost me about

> $3K so far (for a year's treatment, including tests and several phone

> and in-person visits). But it's also made it possible for me to

> return to school and contemplate going back to work for the first

> time in a decade. If that happens -- and it promises to -- then I may

> someday make that back in a month or two. And, even if that doesn't

> happen, it's a small amount of money to feel as much better as I do.

>

> I've wasted a whole lot more on doctors and treatments that did a

> hell of a lot less. I suspect that's true of many of us.

>

> > Also, doesn't anyone find it odd that Amy Yasko's primary focus is

> > on Autism, yet we are promoting (as a list) her genetic testing,

> > which I find very interesting, but we are also treating her as more

> > or less an expert on CFS?

>

> I don't think so. I think there's a lot of excitement and buzz here

> because many of us are trying something very new and experimental

> here. There's a lot of comparing of notes; and she gets invoked

> fairly often because she's the one whose protocol it is. That makes

> her an expert on her protocol, which may or may not turn out to be

> useful to PWCs. I don't think anybody here thinks for a minute that

> she's an expert on CFS.

>

> > Obviously the genetic abnormalities

> > could be helped w/ her treatments, but do we even know that the

> > genetic component has anything to do w/ CFS?

>

> The CDC has come out and said straight out that CFS has a genetic

> component. Apart from Yasko, Rich's explanation for the biochemistry

> of CFS -- which is driven and shaped by genetic factors -- is the

> most complete one I've come across in 23 years. It appears to tie

> together many of the other major hypothesis, including the cardiac,

> viral up-regulation, mycotoxin, gluthathione, and other theories of

> the disease that are in current clinical use. (Many of those theories

> postulate genetic issues as well.)

>

> I think anybody arguing against genetic involvement at this point

> would have a serious uphill battle against a growing mountain of

> evidence.

>

> > CFS could be all environmental as and others have mentioned.

>

> If it's all environmental, then everybody would react as we do when

> exposed to various biological and toxic agents. Not everybody does --

> in fact, most people don't. It's just us. Even points out that

> some people in Incline got sick and got over it; and others never did.

>

> So the next question is: Why us? And the most obvious answer -- which

> has found solid scientific support -- is that we're genetically

> different in ways that make us react differently to virii, toxins,

> and other environmental stressors.

>

> It's not either/or. (Almost nothing in life is.) It's both.

>

> Sara

>

August 29, 2006

On Aug 29, 2006, at 8:53 PM, kdrbrill wrote:

> Sara wrote:

>

> " So the next question is: Why us? And the most obvious answer -- which

> has found solid scientific support -- is that we're genetically

> different in ways that make us react differently to virii, toxins,

> and other environmental stressors. "

>

> That may be true. I still haven't seen the CDC study (and I'm

> always suspicious of any

> government agency, as they're so in bed with the pharmaceutical

> industry).

>

> But I have two questions: Are we born with these different genes,

> or do our genes change

> due to environmental or dietary or stress factors, etc.? I posted

> a study twice now that

> showed that the food we eat may change our genes, and no one

> commented or replied to

> it.

Nobody answered because nobody knows about this yet. It's a very new

idea. We do know that environmental factors can change the ways genes

express themselves -- they can interrupt or promote the manufacture

of enzymes, for example. In fact, the entire Yasko protocol depends

on this notion. But changing the genes themselves? I'm dubious -- but

then, I'm not a geneticist.

>

> Secondly, did everyone who was tested have these genetic

> differences? If not, how do we

> explain those who have recovered or are recovering?

Evidently, the CDC found a small handful of genes that it regards as

common enough among PWCs to be considered causative (or, at least,

solidly diagnostic).

So far, our own local genetic experiment has included fewer than a

dozen tests -- a very small sample indeed. But I'm under the

impression that Rich is, indeed, seeing some genetic anomalies that

cut across the entire sample so far. We'll see if that continues.

It'll be exciting if it does.

There's a couple of decades of research now (it's even in Osler's Web

and the Canadian Guidelines) that suggest that CFS is what happens

when our bodies are attacked by one or more of a variety of agents.

Other people may shake these agents off; but, thanks to our genetics,

our immune systems don't respond the same way most people's do to

this assault. Rather than fight off the bacteria, virus, mold, or

whatever, something goes haywire -- and we end up stuck in an

upregulated state that starts the whole cascade of symptoms we call

CFS. The triggering pathogens may vary; but once it gets going, the

process itself is pretty much the same.

The reason these things go haywire is that we have a cluster of

genetic issues that make our immune systems react differently. In

this sense, our genes create the CFS disease process. But that

process wouldn't have started without the triggering environmental

agent pushing us into a state our genes couldn't deal with.

It's important to remember that, out of this cluster of genetic SNPs,

each of us has our own unique collection. It'll probably emerge that

there's a core set that 90%+ of us have in common. Beyond that, we'll

probably see a much larger collection of other SNPs that maybe 60% of

us have; and then hundreds of less common ones that half or less of

us may also have. The fact that we've each got our own special combo

accounts for the various directions the disease process takes -- and

explains why we've each got our own path out of the disease as well.

Some of these genetic issues are easier to work around with diet and

supplements than others. Some, the body can compensate for more

easily on its own. Some are just devastating. It's that variation

that creates the variety in our symptoms and our prognosis. We are in

a similar process - but weak in our own specific ways.

The genius of Rich's hypothesis is that he's found what may be a

unifying theme that describes all (or at least most) of these SNPs:

most of them seem to compromise our ability to make glutathione,

which in turn creates the vast majority of the symptoms we have in

common. There may (per Shoemaker) be another group of SNPs that makes

us more susceptible to biotoxin illness, or unable to clear metals;

but adequate glutathione also plays an essential role in these, too.

This is a very rough overview of what I've been reading here lo,

these many months -- the model that shows how environmental triggers

can create biochemical cascades that probably wouldn't occur if our

genetics were working like most people's do. This model accounts for

both genetic and environmental variablity, as well as the differences

in our symptoms and prognoses.

It's not one thing. Looking for the One Broken Part is an old-

fashioned mechanistic viewpoint, and it's not working for us. They've

been looking for that one part they could blame for the past 30

years, and they haven't found it yet. Which tells me that it's not

one part. (Few things in this world are.)

Throughout the sciences, we are coming to understand that most of the

world is a dance between several things -- whole systems, involving

many parts working together. I think that's what's going on here:

genes and pathogens and toxins working together systemically to

create a disease process.

Until we start acknowledging that entire system, and studying the

relationships between the parts instead of limiting ourselves to the

parts themselves, we're not going to find a way to interrupt the

process and find a cure.

This is why I keep saying it's not either-or. There are no camps

here. Nobody's wrong; we're just all right in different ways, feeling

different parts of the elephant. What we need here is a map of the

whole elephant.

Sara

August 30, 2006

DAn,

I don't understand it in detail, but basically a gene that governs a specific

activity or function always does so. Whether it is activated or not

( " expressed " ) can be influenced by environment.

Also, the form of the gene may change. It is still the gene that is associated

w. said activity or function, but it does its work differently, because it has a

new form. I believe these changes are due to environment-inner or outer. But

they are then permanent and inherited.

It is these inherited variations (polymorphisms) that we are concerned with.

Because they cause problems.

I have stepped out on a limb here. I thnk I got this right. Someone will surely

correct me if not?

Adrienne

Re: Sara and all: Genetics and CFS...

Sara wrote:

" So the next question is: Why us? And the most obvious answer -- which

has found solid scientific support -- is that we're genetically

different in ways that make us react differently to virii, toxins,

and other environmental stressors. "

That may be true. I still haven't seen the CDC study (and I'm always

suspicious of any

government agency, as they're so in bed with the pharmaceutical industry).

But I have two questions: Are we born with these different genes, or do our

genes change

due to environmental or dietary or stress factors, etc.? I posted a study

twice now that

showed that the food we eat may change our genes, and no one commented or

replied to

it.

Secondly, did everyone who was tested have these genetic differences? If not,

how do we

explain those who have recovered or are recovering?

Dan

>

> > If u don't mind, I will answer because I have another comment.

> > FFC stands for Fibromyalgia and Fatigue Centers. It is easily

> > googled to find one near u, but they are expensive.

>

> " Expensive " is a relative term. My adventure at FFC has cost me about

> $3K so far (for a year's treatment, including tests and several phone

> and in-person visits). But it's also made it possible for me to

> return to school and contemplate going back to work for the first

> time in a decade. If that happens -- and it promises to -- then I may

> someday make that back in a month or two. And, even if that doesn't

> happen, it's a small amount of money to feel as much better as I do.

>

> I've wasted a whole lot more on doctors and treatments that did a

> hell of a lot less. I suspect that's true of many of us.

>

> > Also, doesn't anyone find it odd that Amy Yasko's primary focus is

> > on Autism, yet we are promoting (as a list) her genetic testing,

> > which I find very interesting, but we are also treating her as more

> > or less an expert on CFS?

>

> I don't think so. I think there's a lot of excitement and buzz here

> because many of us are trying something very new and experimental

> here. There's a lot of comparing of notes; and she gets invoked

> fairly often because she's the one whose protocol it is. That makes

> her an expert on her protocol, which may or may not turn out to be

> useful to PWCs. I don't think anybody here thinks for a minute that

> she's an expert on CFS.

>

> > Obviously the genetic abnormalities

> > could be helped w/ her treatments, but do we even know that the

> > genetic component has anything to do w/ CFS?

>

> The CDC has come out and said straight out that CFS has a genetic

> component. Apart from Yasko, Rich's explanation for the biochemistry

> of CFS -- which is driven and shaped by genetic factors -- is the

> most complete one I've come across in 23 years. It appears to tie

> together many of the other major hypothesis, including the cardiac,

> viral up-regulation, mycotoxin, gluthathione, and other theories of

> the disease that are in current clinical use. (Many of those theories

> postulate genetic issues as well.)

>

> I think anybody arguing against genetic involvement at this point

> would have a serious uphill battle against a growing mountain of

> evidence.

>

> > CFS could be all environmental as and others have mentioned.

>

> If it's all environmental, then everybody would react as we do when

> exposed to various biological and toxic agents. Not everybody does --

> in fact, most people don't. It's just us. Even points out that

> some people in Incline got sick and got over it; and others never did.

>

> So the next question is: Why us? And the most obvious answer -- which

> has found solid scientific support -- is that we're genetically

> different in ways that make us react differently to virii, toxins,

> and other environmental stressors.

>

> It's not either/or. (Almost nothing in life is.) It's both.

>

> Sara

>

August 30, 2006

Dan, our genes don't change. We have a large SET of genes that are

responsive to the environment, this is now dubbed epigenetics. Without

this set of genes, no species could adapt...since environmental

conditions change! A good book on this subject is the award winning,

THe Beak of the Finch.

Therefore, a gene that regulates production of a certain estrogen

metabolite, will upregulate its activity in response to certain

environmental (dietary) cues, and downregulate its activity in

response to others.

It will become more active or less active.

There is also selective pressure--individuals with certain genes that

allow them to adapt better to changing environmental conditions will

thrive more than those without, and those individuals will likely

reproduce more, since the others may get sick, falter, die, or

whatever, just be less able to reproduce at a fast clip. And so over

time, the ones who flourished by the mere random fact that their genes

were better suited to a changing environment, will dominate that

environment.

CFS could be a combination of having vulnerable genes that did not

respond well to certain stressors in the environment (take a gene that

controls enzymes that are necessary for detoxification of certain

poisons in the environment--if it's weak, and you encounter a lot of

those poisons, you're going to have trouble), as well as genes that

upregulated in the presence of certain toxins (take xenobiotics,

estrogen likechemicals in pesticides and plastics. Well that may

stimulate the genes that control production of certain estrogen

end-metabolites in your body, leading to an excess of estrogen that

might for instance be jmore stimulating to cell growth thus eventually

cancer; and also, if you genetically had poor detox of estrogen as

Rich has been talking about, that excess might lead to stress on your

liver)

Its complex but in any case, the genes are fixed from birth, but most

are responsive to environment. Now, genes that determine the color of

your eyes are not, as far as I know. But for instance, height is

responsive to diet. You will grow taller on meat and milk than you

would on pasta.

> >

> > > If u don't mind, I will answer because I have another comment.

> > > FFC stands for Fibromyalgia and Fatigue Centers. It is easily

> > > googled to find one near u, but they are expensive.

> >

> > " Expensive " is a relative term. My adventure at FFC has cost me

about

> > $3K so far (for a year's treatment, including tests and several

phone

> > and in-person visits). But it's also made it possible for me to

> > return to school and contemplate going back to work for the first

> > time in a decade. If that happens -- and it promises to -- then I

may

> > someday make that back in a month or two. And, even if that doesn't

> > happen, it's a small amount of money to feel as much better as I do.

> >

> > I've wasted a whole lot more on doctors and treatments that did a

> > hell of a lot less. I suspect that's true of many of us.

> >

> > > Also, doesn't anyone find it odd that Amy Yasko's primary focus is

> > > on Autism, yet we are promoting (as a list) her genetic testing,

> > > which I find very interesting, but we are also treating her as more

> > > or less an expert on CFS?

> >

> > I don't think so. I think there's a lot of excitement and buzz here

> > because many of us are trying something very new and experimental

> > here. There's a lot of comparing of notes; and she gets invoked

> > fairly often because she's the one whose protocol it is. That makes

> > her an expert on her protocol, which may or may not turn out to be

> > useful to PWCs. I don't think anybody here thinks for a minute that

> > she's an expert on CFS.

> >

> > > Obviously the genetic abnormalities

> > > could be helped w/ her treatments, but do we even know that the

> > > genetic component has anything to do w/ CFS?

> >

> > The CDC has come out and said straight out that CFS has a genetic

> > component. Apart from Yasko, Rich's explanation for the biochemistry

> > of CFS -- which is driven and shaped by genetic factors -- is the

> > most complete one I've come across in 23 years. It appears to tie

> > together many of the other major hypothesis, including the cardiac,

> > viral up-regulation, mycotoxin, gluthathione, and other theories of

> > the disease that are in current clinical use. (Many of those

theories

> > postulate genetic issues as well.)

> >

> > I think anybody arguing against genetic involvement at this point

> > would have a serious uphill battle against a growing mountain of

> > evidence.

> >

> > > CFS could be all environmental as and others have mentioned.

> >

> > If it's all environmental, then everybody would react as we do when

> > exposed to various biological and toxic agents. Not everybody does

--

> > in fact, most people don't. It's just us. Even points out that

> > some people in Incline got sick and got over it; and others never did.

> >

> > So the next question is: Why us? And the most obvious answer --

which

> > has found solid scientific support -- is that we're genetically

> > different in ways that make us react differently to virii, toxins,

> > and other environmental stressors.

> >

> > It's not either/or. (Almost nothing in life is.) It's both.

> >

> > Sara

> >

>

August 30, 2006

Jill,

What does it mean to say our DNA is changing or " DNA gene re-arrangement " (as

opposed to " expression " ). Would *those terms* mean the gene is changing/changed?

Katrina

> > >

> > > > If u don't mind, I will answer because I have another comment.

> > > > FFC stands for Fibromyalgia and Fatigue Centers. It is easily

> > > > googled to find one near u, but they are expensive.

> > >

> > > " Expensive " is a relative term. My adventure at FFC has cost me

> about

> > > $3K so far (for a year's treatment, including tests and several

> phone

> > > and in-person visits). But it's also made it possible for me to

> > > return to school and contemplate going back to work for the first

> > > time in a decade. If that happens -- and it promises to -- then I

> may

> > > someday make that back in a month or two. And, even if that doesn't

> > > happen, it's a small amount of money to feel as much better as I do.

> > >

> > > I've wasted a whole lot more on doctors and treatments that did a

> > > hell of a lot less. I suspect that's true of many of us.

> > >

> > > > Also, doesn't anyone find it odd that Amy Yasko's primary focus is

> > > > on Autism, yet we are promoting (as a list) her genetic testing,

> > > > which I find very interesting, but we are also treating her as more

> > > > or less an expert on CFS?

> > >

> > > I don't think so. I think there's a lot of excitement and buzz here

> > > because many of us are trying something very new and experimental

> > > here. There's a lot of comparing of notes; and she gets invoked

> > > fairly often because she's the one whose protocol it is. That makes

> > > her an expert on her protocol, which may or may not turn out to be

> > > useful to PWCs. I don't think anybody here thinks for a minute that

> > > she's an expert on CFS.

> > >

> > > > Obviously the genetic abnormalities

> > > > could be helped w/ her treatments, but do we even know that the

> > > > genetic component has anything to do w/ CFS?

> > >

> > > The CDC has come out and said straight out that CFS has a genetic

> > > component. Apart from Yasko, Rich's explanation for the biochemistry

> > > of CFS -- which is driven and shaped by genetic factors -- is the

> > > most complete one I've come across in 23 years. It appears to tie

> > > together many of the other major hypothesis, including the cardiac,

> > > viral up-regulation, mycotoxin, gluthathione, and other theories of

> > > the disease that are in current clinical use. (Many of those

> theories

> > > postulate genetic issues as well.)

> > >

> > > I think anybody arguing against genetic involvement at this point

> > > would have a serious uphill battle against a growing mountain of

> > > evidence.

> > >

> > > > CFS could be all environmental as and others have mentioned.

> > >

> > > If it's all environmental, then everybody would react as we do when

> > > exposed to various biological and toxic agents. Not everybody does

> --

> > > in fact, most people don't. It's just us. Even points out that

> > > some people in Incline got sick and got over it; and others never did.

> > >

> > > So the next question is: Why us? And the most obvious answer --

> which

> > > has found solid scientific support -- is that we're genetically

> > > different in ways that make us react differently to virii, toxins,

> > > and other environmental stressors.

> > >

> > > It's not either/or. (Almost nothing in life is.) It's both.

> > >

> > > Sara

> > >

> >

>

August 30, 2006

Hi Katrina, I don't have a context for those statements) unless its a

previous message I didn't read (I read on the web, so I sometimes skip

messages that don't seem relevant to my particular interests).

In a general context, I would say that " our DNA is changing " is over

time, as in evolutionary terms. That is driven by random mutation,

environmental pressures, and symbiosis...I'm not sure what " DNA gene

re-arrangement " means and it sounds like gobbleygook to me.

>

> Jill,

>

> What does it mean to say our DNA is changing or " DNA gene

re-arrangement " (as opposed to " expression " ). Would *those terms* mean

the gene is changing/changed?

>

> Katrina

>

August 30, 2006

Cheney told me last spring that our genes have mutated, he said

primates alone can have these mutations in response to environment on

alu insertion points, it allows humans to adapt to different

environments in one generation, and thus we have spread all over the

planet.

He thinks some of us, and I am very much one, have adapted to a low

oxygen state, that is a protective downregulation of the metabolism,

because the mitochondrial cooling system has been damaged by

something.

He was quite definite in telling me I was a mutant. The porcine cells

are a way of altering the phenotype in an effort to return it to

normal but a lot of other things must simultaneously be addressed

because the body has made so many adaptations over time to the

altered state.

It's very complicated and his thinking has apparently gone beyond

this to other matters now, that he mentioned in passing when talking

to me about my horrific bout of depression recently, the PFO holes

and acid base abnormalities.

So my big question about Yasko would be, these tests look at our

genes, but does her program aim to fix the expression of the genes,

or just compensate for ones that are abnormal by taking various

supplements or whatever?

Helen

> >

> > " So the next question is: Why us? And the most obvious answer --

which

> > has found solid scientific support -- is that we're genetically

> > different in ways that make us react differently to virii, toxins,

> > and other environmental stressors. "

> >

> > That may be true. I still haven't seen the CDC study (and I'm

> > always suspicious of any

> > government agency, as they're so in bed with the pharmaceutical

> > industry).

> >

> > But I have two questions: Are we born with these different

genes,

> > or do our genes change

> > due to environmental or dietary or stress factors, etc.? I

posted

> > a study twice now that

> > showed that the food we eat may change our genes, and no one

> > commented or replied to

> > it.

>

> Nobody answered because nobody knows about this yet. It's a very

new

> idea. We do know that environmental factors can change the ways

genes

> express themselves -- they can interrupt or promote the

manufacture

> of enzymes, for example. In fact, the entire Yasko protocol

depends

> on this notion. But changing the genes themselves? I'm dubious --

but

> then, I'm not a geneticist.

> >

> > Secondly, did everyone who was tested have these genetic

> > differences? If not, how do we

> > explain those who have recovered or are recovering?

>

> Evidently, the CDC found a small handful of genes that it regards

as

> common enough among PWCs to be considered causative (or, at least,

> solidly diagnostic).

>

> So far, our own local genetic experiment has included fewer than a

> dozen tests -- a very small sample indeed. But I'm under the

> impression that Rich is, indeed, seeing some genetic anomalies

that

> cut across the entire sample so far. We'll see if that continues.

> It'll be exciting if it does.

>

> There's a couple of decades of research now (it's even in Osler's

Web

> and the Canadian Guidelines) that suggest that CFS is what happens

> when our bodies are attacked by one or more of a variety of

agents.

> Other people may shake these agents off; but, thanks to our

genetics,

> our immune systems don't respond the same way most people's do to

> this assault. Rather than fight off the bacteria, virus, mold, or

> whatever, something goes haywire -- and we end up stuck in an

> upregulated state that starts the whole cascade of symptoms we

call

> CFS. The triggering pathogens may vary; but once it gets going,

the

> process itself is pretty much the same.

>

> The reason these things go haywire is that we have a cluster of

> genetic issues that make our immune systems react differently. In

> this sense, our genes create the CFS disease process. But that

> process wouldn't have started without the triggering environmental

> agent pushing us into a state our genes couldn't deal with.

>

> It's important to remember that, out of this cluster of genetic

SNPs,

> each of us has our own unique collection. It'll probably emerge

that

> there's a core set that 90%+ of us have in common. Beyond that,

we'll

> probably see a much larger collection of other SNPs that maybe 60%

of

> us have; and then hundreds of less common ones that half or less

of

> us may also have. The fact that we've each got our own special

combo

> accounts for the various directions the disease process takes --

and

> explains why we've each got our own path out of the disease as well.

>

> Some of these genetic issues are easier to work around with diet

and

> supplements than others. Some, the body can compensate for more

> easily on its own. Some are just devastating. It's that variation

> that creates the variety in our symptoms and our prognosis. We are

in

> a similar process - but weak in our own specific ways.

>

> The genius of Rich's hypothesis is that he's found what may be a

> unifying theme that describes all (or at least most) of these

SNPs:

> most of them seem to compromise our ability to make glutathione,

> which in turn creates the vast majority of the symptoms we have in

> common. There may (per Shoemaker) be another group of SNPs that

makes

> us more susceptible to biotoxin illness, or unable to clear

metals;

> but adequate glutathione also plays an essential role in these, too.

>

> This is a very rough overview of what I've been reading here lo,

> these many months -- the model that shows how environmental

triggers

> can create biochemical cascades that probably wouldn't occur if

our

> genetics were working like most people's do. This model accounts

for

> both genetic and environmental variablity, as well as the

differences

> in our symptoms and prognoses.

>

> It's not one thing. Looking for the One Broken Part is an old-

> fashioned mechanistic viewpoint, and it's not working for us.

They've

> been looking for that one part they could blame for the past 30

> years, and they haven't found it yet. Which tells me that it's not

> one part. (Few things in this world are.)

>

> Throughout the sciences, we are coming to understand that most of

the

> world is a dance between several things -- whole systems,

involving

> many parts working together. I think that's what's going on here:

> genes and pathogens and toxins working together systemically to

> create a disease process.

>

> Until we start acknowledging that entire system, and studying the

> relationships between the parts instead of limiting ourselves to

the

> parts themselves, we're not going to find a way to interrupt the

> process and find a cure.

>

> This is why I keep saying it's not either-or. There are no camps

> here. Nobody's wrong; we're just all right in different ways,

feeling

> different parts of the elephant. What we need here is a map of the

> whole elephant.

>

> Sara

>

August 30, 2006

Thanks Sara for that very concise explanation. Most of it (considering my brain

fog!)

makes sense to me. I especially agree with your final two paragraphs -- we need

to look

at the body and the disease process as a whole -- not just pick out this virus,

that

bacteria, this chemical or that -- as everyones exposed to pretty much the same

bugs,

etc., so there should be more concentration -- as their is on this board, esp

from Rich et

all, on our dysfunctional immune system and finding ways to re-regulate that...

d.

> >

> > " So the next question is: Why us? And the most obvious answer -- which

> > has found solid scientific support -- is that we're genetically

> > different in ways that make us react differently to virii, toxins,

> > and other environmental stressors. "

> >

> > That may be true. I still haven't seen the CDC study (and I'm

> > always suspicious of any

> > government agency, as they're so in bed with the pharmaceutical

> > industry).

> >

> > But I have two questions: Are we born with these different genes,

> > or do our genes change

> > due to environmental or dietary or stress factors, etc.? I posted

> > a study twice now that

> > showed that the food we eat may change our genes, and no one

> > commented or replied to

> > it.

>

> Nobody answered because nobody knows about this yet. It's a very new

> idea. We do know that environmental factors can change the ways genes

> express themselves -- they can interrupt or promote the manufacture

> of enzymes, for example. In fact, the entire Yasko protocol depends

> on this notion. But changing the genes themselves? I'm dubious -- but

> then, I'm not a geneticist.

> >

> > Secondly, did everyone who was tested have these genetic

> > differences? If not, how do we

> > explain those who have recovered or are recovering?

>

> Evidently, the CDC found a small handful of genes that it regards as

> common enough among PWCs to be considered causative (or, at least,

> solidly diagnostic).

>

> So far, our own local genetic experiment has included fewer than a

> dozen tests -- a very small sample indeed. But I'm under the

> impression that Rich is, indeed, seeing some genetic anomalies that

> cut across the entire sample so far. We'll see if that continues.

> It'll be exciting if it does.

>

> There's a couple of decades of research now (it's even in Osler's Web

> and the Canadian Guidelines) that suggest that CFS is what happens

> when our bodies are attacked by one or more of a variety of agents.

> Other people may shake these agents off; but, thanks to our genetics,

> our immune systems don't respond the same way most people's do to

> this assault. Rather than fight off the bacteria, virus, mold, or

> whatever, something goes haywire -- and we end up stuck in an

> upregulated state that starts the whole cascade of symptoms we call

> CFS. The triggering pathogens may vary; but once it gets going, the

> process itself is pretty much the same.

>

> The reason these things go haywire is that we have a cluster of

> genetic issues that make our immune systems react differently. In

> this sense, our genes create the CFS disease process. But that

> process wouldn't have started without the triggering environmental

> agent pushing us into a state our genes couldn't deal with.

>

> It's important to remember that, out of this cluster of genetic SNPs,

> each of us has our own unique collection. It'll probably emerge that

> there's a core set that 90%+ of us have in common. Beyond that, we'll

> probably see a much larger collection of other SNPs that maybe 60% of

> us have; and then hundreds of less common ones that half or less of

> us may also have. The fact that we've each got our own special combo

> accounts for the various directions the disease process takes -- and

> explains why we've each got our own path out of the disease as well.

>

> Some of these genetic issues are easier to work around with diet and

> supplements than others. Some, the body can compensate for more

> easily on its own. Some are just devastating. It's that variation

> that creates the variety in our symptoms and our prognosis. We are in

> a similar process - but weak in our own specific ways.

>

> The genius of Rich's hypothesis is that he's found what may be a

> unifying theme that describes all (or at least most) of these SNPs:

> most of them seem to compromise our ability to make glutathione,

> which in turn creates the vast majority of the symptoms we have in

> common. There may (per Shoemaker) be another group of SNPs that makes

> us more susceptible to biotoxin illness, or unable to clear metals;

> but adequate glutathione also plays an essential role in these, too.

>

> This is a very rough overview of what I've been reading here lo,

> these many months -- the model that shows how environmental triggers

> can create biochemical cascades that probably wouldn't occur if our

> genetics were working like most people's do. This model accounts for

> both genetic and environmental variablity, as well as the differences

> in our symptoms and prognoses.

>

> It's not one thing. Looking for the One Broken Part is an old-

> fashioned mechanistic viewpoint, and it's not working for us. They've

> been looking for that one part they could blame for the past 30

> years, and they haven't found it yet. Which tells me that it's not

> one part. (Few things in this world are.)

>

> Throughout the sciences, we are coming to understand that most of the

> world is a dance between several things -- whole systems, involving

> many parts working together. I think that's what's going on here:

> genes and pathogens and toxins working together systemically to

> create a disease process.

>

> Until we start acknowledging that entire system, and studying the

> relationships between the parts instead of limiting ourselves to the

> parts themselves, we're not going to find a way to interrupt the

> process and find a cure.

>

> This is why I keep saying it's not either-or. There are no camps

> here. Nobody's wrong; we're just all right in different ways, feeling

> different parts of the elephant. What we need here is a map of the

> whole elephant.

>

> Sara

>

August 30, 2006

Kat, I don't know what he's talking about. I wasn't there for the

conversation so I will give him the benefit of the doubt. Actual

mutations in your genome in your lifetime are rare. The activity of

genes certainly can upregulate and downregulate. As for primates

alone, I also don't know what he's talking about there. All of life

adapts in the same way as far as I'm concerned, it just gets more

complex up the web of life.

It is true your metabolism might downregulate to 'save' you--I

remember his thinking on this in Sieverling's interview, that he had

heart failure because he DIDN'T downregulate.

I am sorry you had a horrific bout with depression and I hope he

didn't use the word 'mutant' in a cruel way unless you want to be

like an X-men mutant with special powers.

Re: Yasko or any similar approaches, my guess would be both. In some

cases, if you get rid of metals, or infections, expression of genes

might return to a healthier state (not under or overexpressed). On the

other hand, sometimes you have mutations that might require continual

buffering of downstream pathways. For instance, for those of us with

certain p450 detoxifiation issues, some drugs will always be difficult

for us to handle. We might adjust the drug dose or try to buoy up the

detox pathway.

Oh my god I am having a terrible niacin flush! Yikes. I have been

enjoying niacin lately but overdid it just now. I am prickling all over.

> So my big question about Yasko would be, these tests look at our

> genes, but does her program aim to fix the expression of the genes,

> or just compensate for ones that are abnormal by taking various

> supplements or whatever?

>

> Helen

>

> > >

> > > " So the next question is: Why us? And the most obvious answer --

> which

> > > has found solid scientific support -- is that we're genetically

> > > different in ways that make us react differently to virii, toxins,

> > > and other environmental stressors. "

> > >

> > > That may be true. I still haven't seen the CDC study (and I'm

> > > always suspicious of any

> > > government agency, as they're so in bed with the pharmaceutical

> > > industry).

> > >

> > > But I have two questions: Are we born with these different

> genes,

> > > or do our genes change

> > > due to environmental or dietary or stress factors, etc.? I

> posted

> > > a study twice now that

> > > showed that the food we eat may change our genes, and no one

> > > commented or replied to

> > > it.

> >

> > Nobody answered because nobody knows about this yet. It's a very

> new

> > idea. We do know that environmental factors can change the ways

> genes

> > express themselves -- they can interrupt or promote the

> manufacture

> > of enzymes, for example. In fact, the entire Yasko protocol

> depends

> > on this notion. But changing the genes themselves? I'm dubious --

> but

> > then, I'm not a geneticist.

> > >

> > > Secondly, did everyone who was tested have these genetic

> > > differences? If not, how do we

> > > explain those who have recovered or are recovering?

> >

> > Evidently, the CDC found a small handful of genes that it regards

> as

> > common enough among PWCs to be considered causative (or, at least,

> > solidly diagnostic).

> >

> > So far, our own local genetic experiment has included fewer than a

> > dozen tests -- a very small sample indeed. But I'm under the

> > impression that Rich is, indeed, seeing some genetic anomalies

> that

> > cut across the entire sample so far. We'll see if that continues.

> > It'll be exciting if it does.

> >

> > There's a couple of decades of research now (it's even in Osler's

> Web

> > and the Canadian Guidelines) that suggest that CFS is what happens

> > when our bodies are attacked by one or more of a variety of

> agents.

> > Other people may shake these agents off; but, thanks to our

> genetics,

> > our immune systems don't respond the same way most people's do to

> > this assault. Rather than fight off the bacteria, virus, mold, or

> > whatever, something goes haywire -- and we end up stuck in an

> > upregulated state that starts the whole cascade of symptoms we

> call

> > CFS. The triggering pathogens may vary; but once it gets going,

> the

> > process itself is pretty much the same.

> >

> > The reason these things go haywire is that we have a cluster of

> > genetic issues that make our immune systems react differently. In

> > this sense, our genes create the CFS disease process. But that

> > process wouldn't have started without the triggering environmental

> > agent pushing us into a state our genes couldn't deal with.

> >

> > It's important to remember that, out of this cluster of genetic

> SNPs,

> > each of us has our own unique collection. It'll probably emerge

> that

> > there's a core set that 90%+ of us have in common. Beyond that,

> we'll

> > probably see a much larger collection of other SNPs that maybe 60%

> of

> > us have; and then hundreds of less common ones that half or less

> of

> > us may also have. The fact that we've each got our own special

> combo

> > accounts for the various directions the disease process takes --

> and

> > explains why we've each got our own path out of the disease as well.

> >

> > Some of these genetic issues are easier to work around with diet

> and

> > supplements than others. Some, the body can compensate for more

> > easily on its own. Some are just devastating. It's that variation

> > that creates the variety in our symptoms and our prognosis. We are

> in

> > a similar process - but weak in our own specific ways.

> >

> > The genius of Rich's hypothesis is that he's found what may be a

> > unifying theme that describes all (or at least most) of these

> SNPs:

> > most of them seem to compromise our ability to make glutathione,

> > which in turn creates the vast majority of the symptoms we have in

> > common. There may (per Shoemaker) be another group of SNPs that

> makes

> > us more susceptible to biotoxin illness, or unable to clear

> metals;

> > but adequate glutathione also plays an essential role in these, too.

> >

> > This is a very rough overview of what I've been reading here lo,

> > these many months -- the model that shows how environmental

> triggers

> > can create biochemical cascades that probably wouldn't occur if

> our

> > genetics were working like most people's do. This model accounts

> for

> > both genetic and environmental variablity, as well as the

> differences

> > in our symptoms and prognoses.

> >

> > It's not one thing. Looking for the One Broken Part is an old-

> > fashioned mechanistic viewpoint, and it's not working for us.

> They've

> > been looking for that one part they could blame for the past 30

> > years, and they haven't found it yet. Which tells me that it's not

> > one part. (Few things in this world are.)

> >

> > Throughout the sciences, we are coming to understand that most of

> the

> > world is a dance between several things -- whole systems,

> involving

> > many parts working together. I think that's what's going on here:

> > genes and pathogens and toxins working together systemically to

> > create a disease process.

> >

> > Until we start acknowledging that entire system, and studying the

> > relationships between the parts instead of limiting ourselves to

> the

> > parts themselves, we're not going to find a way to interrupt the

> > process and find a cure.

> >

> > This is why I keep saying it's not either-or. There are no camps

> > here. Nobody's wrong; we're just all right in different ways,

> feeling

> > different parts of the elephant. What we need here is a map of the

> > whole elephant.

> >

> > Sara

> >

>

August 30, 2006

He cited some study at the CDC about the gene changes which I will

try to dig out, my tape of the conversation got partially eaten by my

tape deck, and was quite definite about the alu mutability being

confined to primates.

No, he didn't use the term mutant in a cruel way, just a descriptive

way. He's a very kindly person. I am as left-shifted as anyone he has

seen, meaning I don't desaturate at all after holding my breath as

long as I can. To him this and other things indicated an adaptation

to a low oxygen state.

This term buffering, he used it when I last talked to him, he said

due to the acid base inbalance, instability is created across the

board, and the buffering and redox systems were stripped out in

compensation so one could be left with great emotional instability,

reactions to medications and environmental toxins. I don't know what

buffering or redox systems are. Much to learn.

Helen

> > > >

> > > > " So the next question is: Why us? And the most obvious

answer --

> > which

> > > > has found solid scientific support -- is that we're

genetically

> > > > different in ways that make us react differently to virii,

toxins,

> > > > and other environmental stressors. "

> > > >

> > > > That may be true. I still haven't seen the CDC study (and

I'm

> > > > always suspicious of any

> > > > government agency, as they're so in bed with the

pharmaceutical

> > > > industry).

> > > >

> > > > But I have two questions: Are we born with these different

> > genes,

> > > > or do our genes change

> > > > due to environmental or dietary or stress factors, etc.? I

> > posted

> > > > a study twice now that

> > > > showed that the food we eat may change our genes, and no one

> > > > commented or replied to

> > > > it.

> > >

> > > Nobody answered because nobody knows about this yet. It's a

very

> > new

> > > idea. We do know that environmental factors can change the ways

> > genes

> > > express themselves -- they can interrupt or promote the

> > manufacture

> > > of enzymes, for example. In fact, the entire Yasko protocol

> > depends

> > > on this notion. But changing the genes themselves? I'm dubious -

-

> > but

> > > then, I'm not a geneticist.

> > > >

> > > > Secondly, did everyone who was tested have these genetic

> > > > differences? If not, how do we

> > > > explain those who have recovered or are recovering?

> > >

> > > Evidently, the CDC found a small handful of genes that it

regards

> > as

> > > common enough among PWCs to be considered causative (or, at

least,

> > > solidly diagnostic).

> > >

> > > So far, our own local genetic experiment has included fewer

than a

> > > dozen tests -- a very small sample indeed. But I'm under the

> > > impression that Rich is, indeed, seeing some genetic anomalies

> > that

> > > cut across the entire sample so far. We'll see if that

continues.

> > > It'll be exciting if it does.

> > >

> > > There's a couple of decades of research now (it's even in

Osler's

> > Web

> > > and the Canadian Guidelines) that suggest that CFS is what

happens

> > > when our bodies are attacked by one or more of a variety of

> > agents.

> > > Other people may shake these agents off; but, thanks to our

> > genetics,

> > > our immune systems don't respond the same way most people's do

to

> > > this assault. Rather than fight off the bacteria, virus, mold,

or

> > > whatever, something goes haywire -- and we end up stuck in an

> > > upregulated state that starts the whole cascade of symptoms we

> > call

> > > CFS. The triggering pathogens may vary; but once it gets going,

> > the

> > > process itself is pretty much the same.

> > >

> > > The reason these things go haywire is that we have a cluster

of

> > > genetic issues that make our immune systems react differently.

In

> > > this sense, our genes create the CFS disease process. But that

> > > process wouldn't have started without the triggering

environmental

> > > agent pushing us into a state our genes couldn't deal with.

> > >

> > > It's important to remember that, out of this cluster of genetic

> > SNPs,

> > > each of us has our own unique collection. It'll probably emerge

> > that

> > > there's a core set that 90%+ of us have in common. Beyond that,

> > we'll

> > > probably see a much larger collection of other SNPs that maybe

60%

> > of

> > > us have; and then hundreds of less common ones that half or

less

> > of

> > > us may also have. The fact that we've each got our own special

> > combo

> > > accounts for the various directions the disease process takes --

> > and

> > > explains why we've each got our own path out of the disease as

well.

> > >

> > > Some of these genetic issues are easier to work around with

diet

> > and

> > > supplements than others. Some, the body can compensate for

more

> > > easily on its own. Some are just devastating. It's that

variation

> > > that creates the variety in our symptoms and our prognosis. We

are

> > in

> > > a similar process - but weak in our own specific ways.

> > >

> > > The genius of Rich's hypothesis is that he's found what may be

a

> > > unifying theme that describes all (or at least most) of these

> > SNPs:

> > > most of them seem to compromise our ability to make

glutathione,

> > > which in turn creates the vast majority of the symptoms we have

in

> > > common. There may (per Shoemaker) be another group of SNPs that

> > makes

> > > us more susceptible to biotoxin illness, or unable to clear

> > metals;

> > > but adequate glutathione also plays an essential role in these,

too.

> > >

> > > This is a very rough overview of what I've been reading here

lo,

> > > these many months -- the model that shows how environmental

> > triggers

> > > can create biochemical cascades that probably wouldn't occur if

> > our

> > > genetics were working like most people's do. This model

accounts

> > for

> > > both genetic and environmental variablity, as well as the

> > differences

> > > in our symptoms and prognoses.

> > >

> > > It's not one thing. Looking for the One Broken Part is an old-

> > > fashioned mechanistic viewpoint, and it's not working for us.

> > They've

> > > been looking for that one part they could blame for the past

30

> > > years, and they haven't found it yet. Which tells me that it's

not

> > > one part. (Few things in this world are.)

> > >

> > > Throughout the sciences, we are coming to understand that most

of

> > the

> > > world is a dance between several things -- whole systems,

> > involving

> > > many parts working together. I think that's what's going on

here:

> > > genes and pathogens and toxins working together systemically

to

> > > create a disease process.

> > >

> > > Until we start acknowledging that entire system, and studying

the

> > > relationships between the parts instead of limiting ourselves

to

> > the

> > > parts themselves, we're not going to find a way to interrupt

the

> > > process and find a cure.

> > >

> > > This is why I keep saying it's not either-or. There are no

camps

> > > here. Nobody's wrong; we're just all right in different ways,

> > feeling

> > > different parts of the elephant. What we need here is a map of

the

> > > whole elephant.

> > >

> > > Sara

> > >

> >

>

August 30, 2006

Sara,

>>>>>We do know that environmental factors can change the ways genes

express themselves -- they can interrupt or promote the manufacture of enzymes,

for example. In fact, the entire Yasko protocol depends on this notion.<<<<<

I did not have this impression at all. I don't know what Amy Yasko says, but

Rich said specifically he does not find gene expression (as in Kerr's work) to

be very significant...compared to the genes we were born with...the ones that

Yasko is testing.

>>>> Evidently, the CDC found a small handful of genes that it regards as common

enough among PWCs to be considered causative (or, at least, solidly

diagnostic).<<<<

The CDC was not studying ME-ICD/CFS... " original " CFS. It was studying '94

Fukuda/fatigue CFS and " CFS-Like " ...and they were subjects who did not know they

had CFS or " anything " .

THeir announcement said they concluded that allostatic load causes CFS....funky

genes plus stressors, including one's emotional reaction to stress.

If they find the few genes they looked at as " solidly diagnostic " , we are all in

trouble. CDC's Reeves announced this was exciting because it will lead

to treatment such as quote: " Cognitive Behavioral Therapy and/or " medications " .

And that the US is looking at UK CFS Clinics.

UK CBT Clinics for CFS insists that dysfunctional thinking is keeping us ill, if

not the cause in the first place.

(Includes badgering people into saying they were stressed when they became ill

even if they were not.)

CBT, and Graded Exercise Therapy, GET, very harmful to ME/CFS patients...is the

treatment being co-erced or forced on many in the UK...men, women,

children...many of whom are permanently harmed.

The US is now studying CBT " Rehabilitation " Clinics for CFS.

Reeves speaks at UK CFS Conferences and UK PSychs have considerable influence in

the US.

On the other hand, Klimas had a more definitive spin in MS. article..genes

specifically connected with CNS and Immune system...and no mention of CBT.

SHe has a large body of work on Disordered Immune System in CFS.

>>>>>>> It's not one thing. Looking for the One Broken Part is an old-

fashioned mechanistic viewpoint, and it's not working for us.<<<<<<

Sara, I know you've only been looking at the ME/CFS research for a short time,

but I don't know where you got this?? I don't know of any ME/CFS Researcher who

is looking at " one broken part " . By any of their definitions, it is a

multi-system disease with multi system damage.

Genetics always have some role in health or disease/it's course...that is

nothing new.

>>>>>They've been looking for that one part they could blame for the past 30

years, and they haven't found it yet.<<<<<

We have no idea if they've " found it " yet. We do not look or discuss most of

the research.

They are consistently underfunded, underpublished, and usually, if they find

anything, biomedical, they are promptly de-funded....many leaving the field or

the country.

>>>> Which tells me that it's not one part. (Few things in this world are.)<<<<<

See above...it doesn't tell us anything.

{I have said several times that Dr. Cheney stopped chasing bugs long ago. He is

looking at " terrain " of the body.}

The " Bug vs. Terrain " debate is age-old among Scientists

>

>>>>>>Throughout the sciences, we are coming to understand that most of the

world is a dance between several things -- whole systems, involving

> many parts working together.<<<<

I was just Dr. Cheney's patient for a year. I have over 20 hours of tapes plus

charts, diagrams, and notes full of the dances between all of the systems in

CFS. His additional Physics background makes it all quite fascinating and fun

(to me). I cannot recall, retain, or explain it all, except for parts, or if I

look it up. But I understood the general concepts and many parts when he was

showing me.

Much of which are not concepts only...but what he has found clinically and in

testing/treating CFS patients for over 20 years.

These concepts/findings are how he came up with dozens of treatments for me,

addressing every system and especially 18 of the worst affected areas in me,

specifically.

>

>>>>>> Until we start acknowledging that entire system, and studying the

> relationships between the parts instead of limiting ourselves to the parts

themselves, we're not going to find a way to interrupt the process and find a

cure.<<<<

Good idea, but not new.

Also, about looking at parts...if we have brain injury, shrinking grey matter,

or heart failure, I am happy if someone wants to focus on that area

specifically. I pray to God they do. That's also why I am interested in

Neurogenesis, and hope someone will connect that and CFS.

>>>> This is why I keep saying it's not either-or. There are no camps here.

Nobody's wrong;<<<<

Sara, you may think this....I too think there is validity to many approaches.

But there definitely are camps, and ....Rich has several times said CFS

Specialists' work or conclusions are " wrong " , and and I think, Cort have

specifically said Dr. Cheney is " wrong " . And it sounds like you are saying those

of the last 30 years are " wrong " .

Rich said he thinks CFS and Autism are the same thing, and he and several others

SAID they're sure his or Yasko program is THE CURE. And some who have questioned

this, as we always have regarding " CURES " , have gotten very uninformative,

nasty responses, on and off list.

People can be excited if they want and try anything they want to, but we have

seen this dozens of times, as Rich did point out.

We've had research close to a marker and headlines across the country about

possible cause discovered.

( Both promptly de-funded).

Does anyone recall how excited Bob was about the Ciguatera epitope, directly

found and studied in CFS blood, and the response he/that got?

>>>> we're just all right in different ways, feeling

> different parts of the elephant. What we need here is a map of the whole

elephant.<<<<<

If we actually put the 30 years body of work together, and funded it for

replication and publication, we might actually have that map. Hardly any of it

has been disproven.

Especially if we now add and fund what is just being made possible in todays

medicine by the Human Genome project. No one had that before.

To me, how the genes are expressing NOW, and looking at far more of them, is as

important as what I was born with. Both, I'd like to know.

I hate it that many are turning their backs on the only ones who have not turned

their backs on us...some are at exciting turning points.( subsets, markers,

tests, treatment) Some of them, and their work, will not be around for long.

I am always coming across studies I did not even knew existed from all over the

world. What if funding changed and the brightest who left also returned ???? If

we keep ignoring/trivializing them, what a loss that will be.

FWIW,