Re: Re: study failed to show the presence of XMRV - posted on behalf of Razorbackdog

[Guest guest]

Dear Jane and all,

 

The earlier Kerr study mentioned could be

 

" Seven Genomic subtypes of Chronic Fatigue Syndrome.... "

Published 5th December 2007 J. Clinical Pathology

In that paper it has a mixture of subjects from the UK and some from New York.

My bloods were taken for this study as part of the London cohort.

 

It would be interesting to hear if any of Dr Enlander's patients are positive

using other XMRV testing methods.

If someone had bloods taken for this study but also sent their blood to the VIP

dx lab then please let us know their results.

 

If Dr Kerr used the same methods for this study of Dr Enlander's patients, as he

did for the recent Bishop et al paper, then he has yet to detect any XMRV in any

cohort of CFS patients.

 

WPI has announced that they will be doing a split study in the UK. Patients were

asked to volunteer for the blood draw (now full). Half the bloods will be tested

by the WPI and the other half by a yet unknown other lab.

 

We are sending bloods for testing to VIP dx from London (private testing) and

approx 40-50% are testing positive for XMRV.

This message is not for reposting.

 

Kindest regards,

Annette

[Guest guest]

Dear Jane,

I'm really sorry you have had to go through cancer too. Cancer of the

reproductive organs is certainly something XMRV will be found to cause, since it

has an affinity for reproductive tissues.

I hope you are able to find out the cause of your illness and stop its progress.

Love

Sue

________________________________

From: Jane M <razorbkdog@...>

Sent: Wed, March 10, 2010 6:32:55 PM

Subject: Re: study failed to show the presence of XMRV -

posted on behalf of Razorbackdog

 

Hello Annette and all,

All I know about this study is what I posted. That in this study I tested

negative as have all of Dr Enlander's other patients who took part in this

study. So sorry to have repeated myself here, but hey; this is all I know!

Whether or not I have myself tested (again! gee; what's more damn blood out of

my arm anyhow?!)is simply going to have to WAIT. I do not know -obviously- about

any of his other patients. I was not aware that we had to keep having different

test run on this; I do get rather sick of tests. Back in the early 90's I had

cancer. I had to have a radical hysterectomy which led to some other problems

(they did 'pass' thank you so much) but it was not a fun time. I'm all too well

familiar with sticking my arm out and donating to test tubes. To drinking awful

goo and feeling weird as I have to 'remain still' and be slid into a big tube

(those actually I find relaxing except for the awful stuff one gets to drink). I

could run down so damn many

tests I've had to have done one time or another .. hey; just a rant I do not

care to go on and I am here I KNOW becoming upset over all the other crud which

is current in my life. I will close here and say to you and everyone else that I

suppose I shall have MORE tests done in time should I feel it necessary.

Contrary to what anyone might think -to dispell any whatever- I CAN ask and have

this test done elsewhere when I am ready to. Now is not a good time. I simply

have far too much on my own plate.

Not at her best,

Jane and her elderly, and on his last legs, hound Bill

>

> Dear Jane and all,

>  

> The earlier Kerr study mentioned could be

>  

> " Seven Genomic subtypes of Chronic Fatigue Syndrome.... "

> Published 5th December 2007 J. Clinical Pathology

>

> In that paper it has a mixture of subjects from the UK and some from New York.

My bloods were taken for this study as part of the London cohort.

>  

> It would be interesting to hear if any of Dr Enlander's patients are positive

using other XMRV testing methods.

>

> If someone had bloods taken for this study but also sent their blood to the

VIP dx lab then please let us know their results.

>  

> If Dr Kerr used the same methods for this study of Dr Enlander's patients, as

he did for the recent Bishop et al paper, then he has yet to detect any XMRV in

any cohort of CFS patients.

>  

> WPI has announced that they will be doing a split study in the UK. Patients

were asked to volunteer for the blood draw (now full). Half the bloods will be

tested by the WPI and the other half by a yet unknown other lab.

>  

> We are sending bloods for testing to VIP dx from London (private testing) and

approx 40-50% are testing positive for XMRV.

>

> This message is not for reposting.

>  

> Kindest regards,

> Annette

>

__________________________________________________________________

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[Guest guest]

Dear Jane et al,

A " cohort " of us, consisting of approx 50 parents w/CFS plus their

kids on the autism spectrum, had blood samples tested some months ago

by a lab in the U.S. None of the participants in that study came back

positive either. We (or rather, or fearless leader Kathy) are

negotiating to get included as one of WPI's follow-on studies, and get

tested again, this time through WPI.

Clearly the particulars of what and how to test have yet to be

generally agreed on. If the proposed WPI study on our cohort doesn't

start by early summer, I'm planning on going down to Miami and seeing

what kind of testing the new CFS clinic down there suggests. Maybe by

then there will be more agreement on the XMRV test(s) as well. In the

meantime, I'm just sort of spinning my wheels and taking a break from

most of the supplements I was taking.

Marcia on

in Salem, Massachusetts

On Mar 10, 2010, at 9:32 PM, Jane M wrote:

> Hello Annette and all,

>

> All I know about this study is what I posted. That in this study I

> tested negative as have all of Dr Enlander's other patients who took

> part in this study. So sorry to have repeated myself here, but hey;

> this is all I know! Whether or not I have myself tested (again! gee;

> what's more damn blood out of my arm anyhow?!)is simply going to

> have to WAIT. I do not know -obviously- about any of his other

> patients. I was not aware that we had to keep having different test

> run on this; I do get rather sick of tests. Back in the early 90's I

> had cancer. I had to have a radical hysterectomy which led to some

> other problems (they did 'pass' thank you so much) but it was not a

> fun time. I'm all too well familiar with sticking my arm out and

> donating to test tubes. To drinking awful goo and feeling weird as I

> have to 'remain still' and be slid into a big tube (those actually I

> find relaxing except for the awful stuff one gets to drink). I could

> run down so damn many tests I've had to have done one time or

> another .. hey; just a rant I do not care to go on and I am here I

> KNOW becoming upset over all the other crud which is current in my

> life. I will close here and say to you and everyone else that I

> suppose I shall have MORE tests done in time should I feel it

> necessary. Contrary to what anyone might think -to dispell any

> whatever- I CAN ask and have this test done elsewhere when I am

> ready to. Now is not a good time. I simply have far too much on my

> own plate.

> Not at her best,

> Jane and her elderly, and on his last legs, hound Bill

>

>

[Guest guest]

Sue wrote:

> Cancer of the reproductive organs is certainly something XMRV will be found to

cause, since it has an affinity for reproductive tissues.

You really can't make such an assumption. Simply because a virus has an

affinity for a specific tissue does not automatically imply causation of

disease in that tissue. Causation must be proven. It is currently not

known whether XMRV causes any disease at all. It is equally as likely

that certain tissues just provide an optimum growing medium for the virus.

Jeri <teewinot13@...>

@>--->---->-------------------<----<---<@

Dr. Pall's NO/ONOO- Theory/Treatment Discussion Group:

TenthParadigmSociety

@>----------<---------->-----------------------<----------<----------<@

The Tenth Paradigm - Dr. Pall's Website for CFS/MCS/FM/ETC.:

http://www.thetenthparadigm.org

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MCS-SinglesConnection: For all singles MCSers 18 and over:

MCS-SinglesConnection

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MCS-Florida - For All Chemically Sensitive Floridians

MCS-Florida

[Guest guest]

Marcia,

 

Did you have testing done through the VIP dx lab or was that not feasible for

such a large group?

 

Any idea which method of testing the lab used for your cohort?

 

I'm not aware of any children with autism testing through our arrangement in the

UK but there is strict confidentiality at the lab who sends the samples and they

may just not not made it public as yet.

 

Kindest regards,

Annette

[Guest guest]

Annette,

It was not VIP dx lab. Unfortunately I am rather foggy right now and

don't remember which type of testing it was, but I do know it wasn't

the same multiple array of tests that WPI used for it's study.

Marcia on

in Salem, Massachusetts

On Mar 11, 2010, at 9:31 PM, annette barclay wrote:

> Marcia,

>

> Did you have testing done through the VIP dx lab or was that not

> feasible for such a large group?

>

> Any idea which method of testing the lab used for your cohort?

>

> I'm not aware of any children with autism testing through our

> arrangement in the UK but there is strict confidentiality at the lab

> who sends the samples and they may just not not made it public as yet.

>

> Kindest regards,

> Annette

>

>

>

[Guest guest]

then it would have to be cooperative labs or clongen labs i think...according to

the message boards, cooperative labs don't seem to find any positive cases.

> Marcia,

>

> Did you have testing done through the VIP dx lab or was that not

> feasible for such a large group?

>

> Any idea which method of testing the lab used for your cohort?

>

> I'm not aware of any children with autism testing through our

> arrangement in the UK but there is strict confidentiality at the lab

> who sends the samples and they may just not not made it public as yet.

>

> Kindest regards,

> Annette

>

>

>

[Guest guest]

I think it was ative Diagnostics.

M.

On Mar 12, 2010, at 3:29 PM, Sue wrote:

> then it would have to be cooperative labs or clongen labs i

> think...according to the message boards, cooperative labs don't seem

> to find any positive cases.

>

>

>

> > Marcia,

> >

> > Did you have testing done through the VIP dx lab or was that not

> > feasible for such a large group?

> >

> > Any idea which method of testing the lab used for your cohort?

> >

> > I'm not aware of any children with autism testing through our

> > arrangement in the UK but there is strict confidentiality at the lab

> > who sends the samples and they may just not not made it public as

> yet.

> >

> > Kindest regards,

> > Annette

> >

> >

> >

>

>