RE: Re: RichV: Pragmatic question on DNA/RNA testing...

August 13, 2006

I wish my memory worked better, but that's no surprise around here; but, anyhow,

I do recall a factoid that I read within the last year or so. That

observations/tests of some island-bound population of creatures (birds? rats?

darn!), demonstrated the evolution took place more rapidly than had previously

been believed. The rate of mutation was higher than expected. This was a

noteworthy advance in understanding in the field.

Adrienne

Re: RichV: Pragmatic question on DNA/RNA

testing...

Hi, Ken.

***I certainly share your desire to prevent PWCs from being ripped

off by something that would not clearly lead to a choice of

treatment that has a good chance of being effective for them.

***I think there are some distinctions that need to be made

concerning the issues you raised. See comments at asterisks below.

>

> Rich,

> I have several questions about DNA/RNA testing -- I know that

it's

> a new " dot-com " for biotech firms, hence a lot of hard sell is

being

> done by some of them.

***Yes, I think you're right. It's a very " hot " field right now.

I have read many NewScientist articles that

> time and again has found DNA and RNA modification in response to

> environmental influences and even **disease**.

***It's true that DNA molecules can be altered by environmental

influences, including viruses, chemicals and ionizing radiation.

This is more frequent in somatic cells than in germ cells, and it is

the basis for producing cancers, for example.

I recall a few years

> back one of the variation found for CFIDS caused me to do some

> digging and the variation was also found in many natives in

Bolivia.

> The variation appear to be one that allows the body to handle low

> oxygen levels -- hence the hypoxia (low tissue oxygen levels) of

> CFIDS was causing intragenerational mutations/evolution to occur

in

> some CFIDSers.

***I think several things are mixed together here. First, genetic

variations are changes that have occurred in the past in the germ

cells of one's ancestors and have survived to produce offspring.

Those are rare events, and not the same as the mutations in somatic

cells in an individual during their life that we just talked about,

such as the ones that lead to cancer. I'm not familiar with the

particular variation you are referring to here, but the explanation

could be that those who inherited that particular variation from

their ancestors were more predisposed to developing CFS than other

people who didn't inherit that one, for some reason. I don't think

this should be interpreted as suggesting that the genome (i.e. the

set of genes in all their somatic and germ cells) in particular PWCs

changed during their lifetimes in response to having CFS. That

doesn't happen. That was the error made by Lysenko in the old

Soviet Union, whose influence set back Soviet genetics for decades.

>

> The OLD premise of DNA/RNA testing was that this was static or

very

> slowly changing...

***That old premise is still true.

more and more papers are appearing that indicate

> significant DNA/RNA mutations can occur within a few years -- and

far

> more importantly, that the mutations are not RANDOM, but very much

in

> response to the environment, almost, cough cough " intelligent

design " .

***Again, I think there are two things mixed together here. On the

one hand there are mutations that occur in the DNA of somatic cells

of living individuals, that are caused by environmental influences,

but these are not changes in the germline. On the other hand, if

you are talking about a life form that goes through many generations

rapidly, and you are looking at changes over many generations when

this lifeform is in an environment that has been changed from what

it was in the past, then yes, there will be natural selection of

random mutations, and the mutations that help the lifeform to

survive and reproduce under the new environmental conditions will

become part of the genome of the surviving population. But if

you're talking about humans, the generation time is too long to see

most such effects. I think that Berg used to make the

argument, though, that the reason for so many people having

hypercoagulation mutations was that the people who had them survived

the bloody battles in Europe many years back. But again, that would

have been a selection from a population that had random mutations,

not the environment causing the changes in DNA.

>

> My conclusion was that DNA/RNA testing in CFIDS must be carefully

> intrepretted to not be viewed as a pre-existing DNA condition, but

a

> post-condition DNA condition unless pre-existing DNA is available

and

> also tested.

***Again, in view of what I've tried to explain above, I think the

DNA is constant in an individual, except for a low rate of random

mutations in somatic cells. When a blood sample is taken, there are

a large number of white blood cells in it, and when the DNA is

amplified, even though it's conceivable that an occasional mutation

might have occurred in one of these cells at the exact location of

the SNP you are looking for, there are enough other cells present to

overwhelm it, and the result is going to be that you will get a

result that is characteristic of the genome that the person

inherited. Any somatic mutations will be down in the noise.

Yes, there are some genetic states (for example the

> Prothrombin 20210 coagulation effect) that occurs in some CFIDSer -

> and those are *likely* pre-existing DNA.

***I think I've covered this above.

>

> So my question to you is simple:

>

> 1) What are the treatment plan that REQUIRES DNA/RNA testing

before

> starting? Ampligen and RNASE-L would be one such case. Are there

> other demonstrated plans?

***Dr. Amy Yasko recommends getting DNA testing done before starting

her treatment program. There are actually aspects that can be

started before one has the results, but before starting some of the

treatments, for example those that are directed at supporting the

methylation cycle, it is important to know if you have an

upregulating genetic variation in the enzyme cystathionine beta

synthase, for example. Several people on this list have turned out

to have such a SNP. It is possible to attempt the treatments

without getting the DNA testing first, but it is more hit-or-miss

that way.

>

> My general feeling is that PAYING for testing is a waste of money

IF

> it does not IMMEDIATELY results in a demonstrated treatment plan

that

> is effective.

***Of course, you are certainly entitled to hold that view, and I

encourage everyone to think it over for themselves.

***So far we have only one case that has proceeded through the

treatment far enough to find out how well it has worked. She has

reported that she believes very strongly that it has been worth the

money. She reported that last Saturday night she was able to

go " fast dancing " for four hours, and still felt fine on Sunday.

This week she has been camping. Before this, she wrote that she had

been riding horses. This is a person who was house-bound before.

***I think it will take some time to see whether others have similar

experiences, but I am hopeful. There is quite a bit of experience

from autism to draw upon, however, and I think the genetic test

results so far are showing that the same SNPs are present in CFS as

in autism. And the test results do tell you immediately which path

to follow for treatment. The treatment itself, though, takes some

time to shift the metabolism back in the correct direction. I think

there is quite a bit of momentum in the abberent gene expression,

and this has to be nudged back, rather than being changed overnight.

Doing testing if it is part of a research study and

> FREE -- would be recommended.

***That would certainly be wonderful, but I don't know who would

fund it.

>

> To me, the literature cause me to view this DNA/RNA with a lot of

> caution...

***I agree that we need to be cautious, but I think the literature

requires careful interpretation, and it's important to decipher what

it is actually saying. I do appreciate your concern about this,

Ken, and I have thought long and hard about it, too, but so far it's

looking good to me.

>

> Comments?

>

***Rich

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

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

discussed here, please consult your doctor.

August 13, 2006

Mike, Jill,

I think we need to be careful in this discussion because nothing is

'proven' here yet regarding autism and CFS. Certainly the similarities

are striking, but so are the differences. We are just speculating.

My own speculation is that in the end the methylation issue will turn

out to be a necessary but not sufficient condition for CFS. In other

words, you can not get CFS unless you have methylation defects.

However, not everyone with methylation defects will get CFS. Until

people with other diseases are genetically profiled, we should not

presume that this is 'the' original cause. For instance, there could be

quite a few toxin-related diseases that share methylation defects with

autistic children. The development of CFS may require MUCH more than

just methylation defects. And you can not just call any other

conditions 'triggers' because some of them may ALSO be necessary for

CFS. In other words, I could say that the cause of a car accident is

riding in a car. After all, that is a necessary condition. And I could

say that failing to observe the traffic laws leading to accident was

just the trigger. See my point? We do not yet know enough about this

to be assuming that these methylation mutations lead to or cause CFS.

Adults with CFS have a heaping load more pathological exposures than

autistic children.

Personally, I believe we will also eventually learn of other necessary

genetic problems for CFS. The opera is not over yet, far from it.

--Kurt

Re: RichV: Pragmatic question on DNA/RNA

testing...

The idea is that a similar constellation of mutations in the

methylation cycle can lead to autism or chronic fatigue or chronic

lyme etc, under circumstances where the right environmental insults

are present. The autism is a result of damage to the developing brain.

> >

> > Nice dialogue, to which I wish to add a few thoughts.

> >

> > 1) We are in the beginning of understanding connections between

adult

> > chronic illnesses like lyme/cfids, and the autism model. Doctors and

> > researchers I have spoken with, and only a few thus far, readily

> admit

> **disease**.

> > >snip<<<

>

August 14, 2006

I must agree that seems like an entirely different kind of fatigue. I would

think it would make more sense to say that CFS and autism are different diseases

with the same underlying mutations in the methylation cycle. You have the same

genetics but they can lead to several different neurological diseases (she

originally worked with MS, alzheimer's, etc.) depending on the other factors

involved--age, infections, stressors. So there wouldn't need to be much if any

cross-over in symptoms since they are different diseases but with a common

cause. So the treatment of the common cause would be the same.

Trina

erikmoldwarrior <erikmoldwarrior@...> wrote:

" pjeanneus " wrote:

>

> and Kurt,

> This brings to mind another question as well. How can we compare

DNA in autistic children to the CFIDS population when we don't even

know what the heck the CFIDS population is? > a

>

Well, a, Take a look at this interesting statement:

" Some autism mothers say that their kids really are fatigued, but it

is masked by the fact that the more fatigued they become, the more

it is manifested in hyperactivity. But they know from experience that

when they see this behavior, it means that their child is tired,

i.e. fatigued. "

" HYPERACTIVITY " ???

And this is an indication of " fatigue " ??

Now I hate to complain, but this indicates in no uncertain terms

that the writer is thinking of an illness that is ABSOLUTELY NOTHING

like CFS.

Let me repeat that:

ABSOLUTELY NOTHING LIKE CFS!!!

First of all, CFS means not being able to predict when you can

stand up, move, or sometimes even feed yourself.

And the sensation that prevents function is NOTHING like fatigue.

It is a neurological paralysis that take intense mental

concentration to overcome.

" Tired " has absolutely nothing to do with the central sensations

that are of critical importance to CFS.

These kinds of statements do not refer to any subset of CFS.

This only applies to " idiopathic fatigue " ,.

The mere attempt to describe CFS in terms of fatigue or " tired "

without making any effort to explain the devastating neurological

paralysis is a sure sign that the person has no conceptual model for

CFS, no matter how much they think they do.

-

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

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

August 14, 2006

Actually, over-the-top, highly disorganized, highly active behavior

-- including tantrums, running around, and yelling -- is absolutely

universal in exhausted children, autistic or not. Anyone who's ever

been a parent or spent days on end with preschoolers knows this.

I don't why it's true, but it seems to me like the nervous system

gets overstimulated and somehow scatters them neurologically. Their

bodies are aching to rest -- but something in their brains won't let

them. The more tired they get, the more scattered they are, and the

more active they become -- at least for a while, until real fatigue

sets in, and then they'll drop in their tracks.

Kids who've got neurological glitches to begin with (as my son did)

are worse, probably because they're already a bit scattered to begin

with, and thus it takes less stress for them to totally disorganize.

I've seen friends' autistic kids who pitched tired fits that just

terrified me.

It's equally true of girls and boys. Most " normal " kids seem to

outgrow it somewhere between five and seven.

Sara

On Aug 13, 2006, at 10:39 PM, erikmoldwarrior wrote:

> " pjeanneus " wrote:

>>

>> and Kurt,

>> This brings to mind another question as well. How can we compare

> DNA in autistic children to the CFIDS population when we don't even

> know what the heck the CFIDS population is? > a

>>

>

> Well, a, Take a look at this interesting statement:

>

> " Some autism mothers say that their kids really are fatigued, but it

> is masked by the fact that the more fatigued they become, the more

> it is manifested in hyperactivity. But they know from experience that

> when they see this behavior, it means that their child is tired,

> i.e. fatigued. "

>

> " HYPERACTIVITY " ???

> And this is an indication of " fatigue " ??

> Now I hate to complain, but this indicates in no uncertain terms

> that the writer is thinking of an illness that is ABSOLUTELY NOTHING

> like CFS.

> Let me repeat that:

> ABSOLUTELY NOTHING LIKE CFS!!!

> First of all, CFS means not being able to predict when you can

> stand up, move, or sometimes even feed yourself.

> And the sensation that prevents function is NOTHING like fatigue.

> It is a neurological paralysis that take intense mental

> concentration to overcome.

> " Tired " has absolutely nothing to do with the central sensations

> that are of critical importance to CFS.

>

> These kinds of statements do not refer to any subset of CFS.

> This only applies to " idiopathic fatigue " ,.

> The mere attempt to describe CFS in terms of fatigue or " tired "

> without making any effort to explain the devastating neurological

> paralysis is a sure sign that the person has no conceptual model for

> CFS, no matter how much they think they do.

> -

>

> This list is intended for patients to share personal experiences

> with each other, not to give medical advice. If you are interested

> in any treatment discussed here, please consult your doctor.

>

August 14, 2006

This is one of my big fears. If I get overtired I crash so badly I can barely

move. My face buzzes, my eyes won't stay closed and I feel like I want to yawn,

but can't. It's an awful feeling and all I can do is lie down and wait for it

to pass. I have a personality in me that is like a security guard and will

rarely let me get to that point. I also agree completely with . Fatigue

doesn't even get close to describing the exhaustion.

jill1313 <jenbooks13@...> wrote: And in adults. This is exactly

what happened to me last night,

actually. Unaware that I was approaching the point of collapse until I

actually did collapse, in fact, as I approached that point, I got so

overstimulated and over-reactive that I got into an argument and

probably looked like the picture of energy. A few minutes later I

realized I had been approaching this point all weekend, that my

muscles were weak, that my whole body was buzzing, and that I had that

familiar feeling that comes sometimes on too little sleep and too much

activity, since getting lyme, where if I don't rest with NO

STIMULATION or NOISE of any kind, I feel like I will collapse.

> >>

> >> and Kurt,

> >> This brings to mind another question as well. How can we compare

> > DNA in autistic children to the CFIDS population when we don't even

> > know what the heck the CFIDS population is? > a

> >>

> >

> > Well, a, Take a look at this interesting statement:

> >

> > " Some autism mothers say that their kids really are fatigued, but it

> > is masked by the fact that the more fatigued they become, the more

> > it is manifested in hyperactivity. But they know from experience that

> > when they see this behavior, it means that their child is tired,

> > i.e. fatigued. "

> >

> > " HYPERACTIVITY " ???

> > And this is an indication of " fatigue " ??

> > Now I hate to complain, but this indicates in no uncertain terms

> > that the writer is thinking of an illness that is ABSOLUTELY NOTHING

> > like CFS.

> > Let me repeat that:

> > ABSOLUTELY NOTHING LIKE CFS!!!

> > First of all, CFS means not being able to predict when you can

> > stand up, move, or sometimes even feed yourself.

> > And the sensation that prevents function is NOTHING like fatigue.

> > It is a neurological paralysis that take intense mental

> > concentration to overcome.

> > " Tired " has absolutely nothing to do with the central sensations

> > that are of critical importance to CFS.

> >

> > These kinds of statements do not refer to any subset of CFS.

> > This only applies to " idiopathic fatigue " ,.

> > The mere attempt to describe CFS in terms of fatigue or " tired "

> > without making any effort to explain the devastating neurological

> > paralysis is a sure sign that the person has no conceptual model for

> > CFS, no matter how much they think they do.

> > -

> >

> > This list is intended for patients to share personal experiences

> > with each other, not to give medical advice. If you are interested

> > in any treatment discussed here, please consult your doctor.

> >

August 14, 2006

It becomes appearant to me that we are assualted by pathagens as well as

environment. Those alone could maybe alter the DNA patterns and make us

susceptable to this??

erikmoldwarrior <erikmoldwarrior@...> wrote: " rvankonynen "

wrote:

>

> Hi, .

Before you get too exercised over this (pun intended!) let me note

that early results of running the ATP Profile test on an autistic

child suggest that their mitochondria might be in much different

condition than those in adults with CFS, perhaps because they are so

young and have not yet suffered as much oxidative damage. But it's

a little early to reach conclusions on this. Comparing very young

children to adults introduces a lot of complicating factors.

> Rich

Rich,

It's very telling to see that MCSers are forced to say " Chemical

Injury " because the hidden insult in MCS is that the problem is put

upon your individual sensitivity rather than allowing for the

possibility that you were just a normal person struck down by an

overwhelming exposure.

If you recall the history of CFS, even though it struck athletes,

people blamed it on deconditioning and weakness.

Even though it struck people who were health conscious, they blamed

it on bad diet and drugs.

Even though it hit children, they blamed it on a lifetime of self

abuse.

Even though it happened overnight, they blamed it on deconditioning.

They couldn't make up their mind if it was from being lazy, or from

being burned out - so they blamed both simultaneously - while

ignoring our past history of activity.

The list of " misunderstandings " goes on.

No matter how much you describe it as being unlike any sort of

fatigue you have ever felt in your life, not even quantitatively

different, it was QUALITATIVELY and COMPLETELY different as an

undescribable and unknown sensation for which we have no words -

because we never felt anything like this before.

So one has to bear in mind that when someone makes a comparison

between autism and CFS, it's important to remember that this strikes

in a manner that is nothing like autism, and leaves sufferers

complaining of sensations that are also nothing like autism.

You may recall that " CFS " got going when Dr noted that

clusters of illness were occurring among closeknit groups:

The girls basketball team and the Truckee teachers.

The very fact that the illness could do this is an indication that

it has much less respect for individual tolerances and variations

that people who hope it's a rare genetic illness would hope for.

The illness just plain raced through groups in a manner unlike

anything an individual problem could ever do.

Isn't that amazing?

That's the very fluke that brought Polly Murrays attention to Lyme.

She could see that no matter what the symptoms were, the illness

wasn't spreading in a way that a genetic " JRA " illness could.

This whole Autism/CFS line of reasoning is very interesting, but

the " thrust " of the logic involved and the way it is expressed

brings up the very reason that MCSers want the world to understand

that their illness is " Chemical INJURY " :

The illness isn't spreading nearly like an individual susceptibility

as much as it appears to be something that can overwhelm just about

anybody at any time without much warning.

-

August 14, 2006

You know what I mean. I ended up in the phyche ward at the hospital for 5 days

once because I hadn't slept for 3 nights. I thought I would die. The hospital

thought I was depressed and wouldn't let me stay in bed during the day and I had

to lie on a cold, hard floor from 8 in the morning til 10 at night in the

" community " room. They thought I was out of my mind when I said I had CFS.

Treated me like a nutcase. Which at that point I was. All I wanted was to be

drugged into a 3 day sleep.

jill1313 <jenbooks13@...> wrote: I would say the fatigue (and

probably the endocrine and neurological

symptoms) are closer to the kind of problems people have when they are

deprived of sleep for days on end. Rats who are not allowed to sleep

will get all kinds of immune system problems and strange behaviors and

eventually their systems break down and they die. Soldiers can be

severely sleep deprived. I'm not talking about a couple hours short,

or a bad night or two. I suppose a normal person could simulate CFIDS

type fatigue if they wree deprived of sleep for 3-4 days.

>

> This is one of my big fears. If I get overtired I crash so badly I

can barely move. My face buzzes, my eyes won't stay closed and I feel

like I want to yawn, but can't. It's an awful feeling and all I can

do is lie down and wait for it to pass. I have a personality in me

that is like a security guard and will rarely let me get to that

point. I also agree completely with . Fatigue doesn't even get

close to describing the exhaustion.

>

August 14, 2006

My experience with kids that are hyper from fatigue is that their blood sugar is

low, as if they were crashing after a big sugar intake and that they can be

calmed down with some good protein. I am guessing they have used up their

serotonin for the moment. I am guessing that they are fighting off that low

feeling that comes with low sugar.

Adrienne

Re: Re: RichV: Pragmatic question on DNA/RNA