RE: Dr. Klimas Should you be tested for XMRV question

[Guest guest]

Guys

In the lecture to CFS people that was posted yesterday there was a question

asked at the end: Should I get tested for the XMRV study?

She answered it well so I cut it out of the transcripts to post here.

I know I for one am asking tis about my son.

Question: Should I get tested for XMRV?

Dr Klimas from the lecture:

So, there are some issues here. That blood test only identified 67% so

if I ordered a blood test on you right now and it was negative, what

would happen to your soul? You know, and yet it might not really be

negative, in fact it’s got a one chance in three of being wrong. The

blood test that we don’t have yet that we will have very shortly, those

tests are going to be improved on.

When the first HIV blood test came out it wasn’t any good either. You

know, it went through stages and stages and stages before we got a

really good one. Don’t rush to get the test. Why, because you’re not

going to act on that test quite yet. The knowledge of being positive is

not going to give you an anti viral prescription from anyone right now

because we don’t know which one to give and if it’s safe or if it’s

toxic. The HIV drugs are not been gentle, OK, and you guys are really

tender. So, if you knew your status today it really wouldn’t change

anything.

If they are right 99% of you are positive. And if they are wrong then 95% of you

are positive.

So when? Soon, really soon. But you wouldn’t be able to bear the false

negative right now so be careful OK. There are kits already out there,

they want cash and there’s no reimbursement from your insurance

provider yet. I was talking to this great scientist at the VA and he

said, you know, my lab develops tests. That’s what we do. What’s wrong

with the tests you got? Oh, I could fix that and he got all jazzed and

I’m thinking, damn, get another guy in the field and you know, and he’s

fixed your test, that’s great. So these people, they’re already out

there and they know how to do it and tests will improve.

If you don’t have this virus – what if you didn’t. Well, you know,

that’s good news too because that puts you in a different group and we

know not to do all that toxic stuff to you. So that’s an important

thing to do too. So don’t be discouraged even if you’re negative.

We talked about these other people that might also actually be

infected. We don’t know. These are just people we are going to be

looking at. The Gulf War Illness group I’m desperate to see right away

because it could change the whole direction of that work and they have

a fair amount of money to do that work.

So the conclusion, it really is a big thing. It’s a big thing. You

should be very excited. It’s a very hopeful thing. Yeah, the research

is already underway, more to come. The more we can get funded the more

focused and intense we will be in getting this work done as quickly as

possible. That work we were already doing plays right into this. All

the genomics work and all the immunology work. That is all critical to

the better understanding of this illness and how this virus plays into

it.

Those of you that are in my good day bad day study, it’s nice because

we’ve got your stuff already in the freezer and we’ll be looking at

this virus as quickly as we can get access to the assay. That study,

that’s a really important study. It looks at people in relatively

better times and worse times and we’ll know if viral load is causing

that. If there’s anything about this virus. We’re already looking at

all the immune parameters and endocrine parameters and everything under

sun. But we’re trying to understand what mediates relapse.

There are people in this room that have been in my genomics study where

we put people on a bike and made them sick on purpose and then watched

why they got sick. That was a heroic thing to do, we appreciate it,

we’ve learned a tremendous amount from that study. We want to continue

doing that study. We’re fundraising to do the last of the chronic

fatigue group. We’re going to run 15 more chronic fatigue patients and

then we ran out of money. I’m looking to finish that study. You can be

sure we’ll look at viral expression now that we know that we should be

looking for viral expression.

So, all these thing are important. They all tie together,

From: Jill Boyer <sjillboyer@...>

Subject: Dr. Klimas

" nids " <nids >

Date: Wednesday, December 16, 2009, 4:34 PM

 

Hey All,

Here is a link to Dr. Klimas's lecture on XMRV. It is really top notch and

some people at Phoenix Rising have already transcribed most of the lecture.

http://cfsknowledge center.ning. com/video

If you go to website and look through the threads, you can read the

transcriptions to some of them. This is really great!

http://forums. aboutmecfs. org/showthread. php?t=1714

All the best,

Jill

[Guest guest]

Thanks for sharing, Bill. That’s really helpful to answer the question about

if and when to get tested.

Kristy Nardini

TazziniTM Stainless Steel Bottles

www.tazzini.com

kristy@...

Phone: 858.243.1929

Fax: 858.724.1418

P Please consider the environment before printing this email.

From: [mailto: ] On Behalf Of Bill

klimas

Sent: Friday, December 18, 2009 7:59 AM

Subject: Re: Dr. Klimas Should you be tested for XMRV question

Guys

In the lecture to CFS people that was posted yesterday there was a question

asked at the end: Should I get tested for the XMRV study?

She answered it well so I cut it out of the transcripts to post here.

I know I for one am asking tis about my son.

Question: Should I get tested for XMRV?

Dr Klimas from the lecture:

So, there are some issues here. That blood test only identified 67% so

if I ordered a blood test on you right now and it was negative, what

would happen to your soul? You know, and yet it might not really be

negative, in fact it’s got a one chance in three of being wrong. The

blood test that we don’t have yet that we will have very shortly, those

tests are going to be improved on.

When the first HIV blood test came out it wasn’t any good either. You

know, it went through stages and stages and stages before we got a

really good one. Don’t rush to get the test. Why, because you’re not

going to act on that test quite yet. The knowledge of being positive is

not going to give you an anti viral prescription from anyone right now

because we don’t know which one to give and if it’s safe or if it’s

toxic. The HIV drugs are not been gentle, OK, and you guys are really

tender. So, if you knew your status today it really wouldn’t change

anything.

If they are right 99% of you are positive. And if they are wrong then 95% of you

are positive.

So when? Soon, really soon. But you wouldn’t be able to bear the false

negative right now so be careful OK. There are kits already out there,

they want cash and there’s no reimbursement from your insurance

provider yet. I was talking to this great scientist at the VA and he

said, you know, my lab develops tests. That’s what we do. What’s wrong

with the tests you got? Oh, I could fix that and he got all jazzed and

I’m thinking, damn, get another guy in the field and you know, and he’s

fixed your test, that’s great. So these people, they’re already out

there and they know how to do it and tests will improve.

If you don’t have this virus – what if you didn’t. Well, you know,

that’s good news too because that puts you in a different group and we

know not to do all that toxic stuff to you. So that’s an important

thing to do too. So don’t be discouraged even if you’re negative.

We talked about these other people that might also actually be

infected. We don’t know. These are just people we are going to be

looking at. The Gulf War Illness group I’m desperate to see right away

because it could change the whole direction of that work and they have

a fair amount of money to do that work.

So the conclusion, it really is a big thing. It’s a big thing. You

should be very excited. It’s a very hopeful thing. Yeah, the research

is already underway, more to come. The more we can get funded the more

focused and intense we will be in getting this work done as quickly as

possible. That work we were already doing plays right into this. All

the genomics work and all the immunology work. That is all critical to

the better understanding of this illness and how this virus plays into

it.

Those of you that are in my good day bad day study, it’s nice because

we’ve got your stuff already in the freezer and we’ll be looking at

this virus as quickly as we can get access to the assay. That study,

that’s a really important study. It looks at people in relatively

better times and worse times and we’ll know if viral load is causing

that. If there’s anything about this virus. We’re already looking at

all the immune parameters and endocrine parameters and everything under

sun. But we’re trying to understand what mediates relapse.

There are people in this room that have been in my genomics study where

we put people on a bike and made them sick on purpose and then watched

why they got sick. That was a heroic thing to do, we appreciate it,

we’ve learned a tremendous amount from that study. We want to continue

doing that study. We’re fundraising to do the last of the chronic

fatigue group. We’re going to run 15 more chronic fatigue patients and

then we ran out of money. I’m looking to finish that study. You can be

sure we’ll look at viral expression now that we know that we should be

looking for viral expression.

So, all these thing are important. They all tie together,

From: Jill Boyer <sjillboyer@... <mailto:sjillboyer%40> >

Subject: Dr. Klimas

" nids " <nids <mailto:nids%40> >

Date: Wednesday, December 16, 2009, 4:34 PM

Hey All,

Here is a link to Dr. Klimas's lecture on XMRV. It is really top notch and

some people at Phoenix Rising have already transcribed most of the lecture.

http://cfsknowledge center.ning. com/video

If you go to website and look through the threads, you can read the

transcriptions to some of them. This is really great!

http://forums. aboutmecfs. org/showthread. php?t=1714

All the best,

Jill