New news from the WPI

bullybeef

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New news from the WPI (from WPI facebook page):

FOR IMMEDIATE RELEASE
Frankie Vigil
R&R Partners for
Whittemore Peterson Institute
775-336-4555
frankie.vigil@rrpartners.com

Whittemore Peterson Institute Announces Availability of Updated XMRV Testing
Reno, Nev. - In October 2009, together with the Cleveland Clinic and National Cancer Institute, the Whittemore Peterson Institute published findings in Science regarding the discovery of XMRV in the blood of Chronic Fatigue Syndrome (CFS) patients. The testing method, validated in multiple other labs using positive control samples, uses a unique process that was extensively peer reviewed before publication and provides the most accurate results available.

This virus culture test is the same method used in the Science publication, and the only scientifically validated methodology to find XMRV. Some labs, including the recent study published in the U.K., have used non-validated PCR and whole blood PCR assays. At this time no single PCR or whole blood assay alone has been validated as accurately detecting XMRV, and is therefore not an appropriate way to study or diagnose the presence of the virus.

WPI has licensed the latest version of the test to Viral Immune Pathways Diagnostic
Laboratories (VIP Dx) in Reno, Nev. The non-exclusive license allows patients and their doctors access to a reliable diagnostic tool. The newly refined test uses a virus culture methodology that yields more reliable results in one test at a lower cost to patients.

Our mission at WPI is to discover bio markers of disease and translate those discoveries into accurate diagnostics and effective treatments for patients, said WPI Founder and President Annette Whittemore. We continue to talk to other clinical laboratory companies, both nationally and internationally, in order to make the test available to a wider audience.

WPI Research Scientist and co-author of the Science paper, Dr. Vincent Lombardi, is providing technical assistance and oversight of the VIP Dx testing. In exchange for the non-exclusive license, VIP Dx will pay a royalty to WPI for each test it conducts.

We structured the licensing contract to be sure that any and all profits that might emerge at VIP Dx from XMRV testing come directly back to WPI to benefit the research program said Whittemore.

Dr. Lombardi is an employee of WPI, and has no personal financial interest in VIP Dx. Likewise, the Whittemore family put their interest in VIP Dx into a trust to benefit WPI.

The availability of these tests has a dramatic impact to the CFS/ME community. These tests allow licensed laboratories to begin answering important questions about XMRVs incidence in disease and prevalence in the world. WPI hopes that this will generate further research related to XMRV. "The institutes driving goal continues to be the translation of research to meaningful results for patients, explained Whittemore.

It is still unknown exactly how XMRV impacts humans. Scientists who understand the potential ramifications of human infection with retroviruses take the study of XMRV seriously. WPI researchers along with many other scientists around the world are actively engaged in advancing research in this field.

Whittemore Peterson Institute

The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of the immune system and the nervous system, often results in lifelong disease and disability. The WPI is the first institute in the world dedicated to X associated neuro-immune disease (XAND), and other X associated diseases, integrating patient treatment, basic and clinical research and medical
education.
 

CJB

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Wow. Hmm. Wow.

I think we're seeing the divergence of science for those of us who are positive for XMRV and those of us who are not. WPI seems to be following the XMRV route exclusively?? Does anyone know if the Whittemore daughter tested positive for XMRV?

Is anyone who tested negative to the first-generation tests going to try this new test?

:headache:
 

Esther12

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I'm not too sure what this bit means:

"This virus culture test is the same method used in the Science publication, and the only scientifically validated methodology to find XMRV. Some labs, including the recent study published in the U.K., have used non-validated PCR and whole blood PCR assays. At this time no single PCR or whole blood assay alone has been validated as accurately detecting XMRV, and is therefore not an appropriate way to study or diagnose the presence of the virus. "

Does anyone know exactly what 'scientifically validated' means? How does a test get scientificaly validated?

Good to have them being pre-emptive about any claims about conflicts of interest or financial impropriety.
 

JillBohr

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Is anyone who tested negative to the first-generation tests going to try this new test?

:headache:
I hope they redo the xmrv negative tests again using this new test at no charge. I would hate to see people spend $650 for a test and then have to pay again to be retested. Perhaps, they can offer a special discount rate or something.
 

bakercape

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I feel

like this is why it is wise not to get an XMRV test yet. There are so many reasons to wait.

1)It is expensive $650 dollar

2) the test seems to be being revised and they just don't know how accurate the testing is or the best method.

3) If you test negative now your probably going to want to be tested again latter using revised an updated techniques like an antibody test. You may pay twice or more for XMRV testing.

4) Insurance may pay for the test latter on.

5) There is no treatment based on a positive test.

Basically if I got tested and it came back negative I would not trust the results at this point. I would still wonder if I had XMRV enough to get tested again latter. So why bother shelling out the money at this point.
 
D

DysautonomiaXMRV

Guest
Good views on all those points Bakercape, it will be costly if we have to fork out $1300 and still test negative.

Maybe point 5 though is more debatable however?
A positive XMRV would discount any accusations of a Somataform disorder which
ME & CFIDS is (wrongly) associated with.

Currently the mere action of asking for tests gives one a label of mentally ill in the UK
by certain militant Psychiatrists!!!! Not all obviously, but those in charge of the system.

This is why I and many others in a 'socialised' medical system need a positive test
even if (frustratingly) there is not one single approved drug yet.
 

CJB

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When I got a very high reading on the HHV6a test, I thought it would be a game changer, but it wasn't. What I got was that it can show up in healthy people too.

I'm afraid that nothing will move insurance companies and many doctors until causality is proven.
 
D

DysautonomiaXMRV

Guest
Hi CJB.

It's best to look into this further in my opinion.

It's indeed accurate to say (or be told) that viruses such as HHV-6 show up in healthy people, however healthy people have an immune defence against them.
This is where the 'OK' factor ends.

People with 'CFS' are shown to have depleted Natural Killer Cells/Lowered T-Cell count. So the fact one has a 'normal' or 'expected' viral infection
is very different if one has these immune supression issues seen in 'CFS' because the body cannot cope as normal.

HHV-6 is neuro invasive. CFS just happens to be linked to neuro disease. If you search the symptoms of HHV-6 infection they
are directly implicated in and with CFS. So no one can really say to you, or imply to you to chill out, and all is OK.

Lastly a thing to think about, is the amount (levels) of viral titres. Are they 10% elevated? 100% 500% 5000%?
Usually on a blood assay it shows the excepted titre levels of what would be positive and normal.

So a healthy person with positive titres for HHV-6 within normal range is nothing to write home about.
Yet a person with 'CFS' with positive titres for HHV-6 that are off the scale, is very much something to right home about.

The majority of Doctors will tell you that it's fine or normal to have raised IgG to HHV-6, or a positive PCR test result.
However, these doctors are unaware that people with 'CFS' may well be immune compromised, and thus it can be something
to look into further.
 

CJB

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Hi CJB.

It's best to look into this further in my opinion.

It's indeed accurate to say (or be told) that viruses such as HHV-6 show up in healthy people, however healthy people have an immune defence against them.
This is where the 'OK' factor ends.

People with 'CFS' are shown to have depleted Natural Killer Cells/Lowered T-Cell count. So the fact one has a 'normal' or 'expected' viral infection
is very different if one has these immune supression issues seen in 'CFS' because the body cannot cope as normal.

HHV-6 is neuro invasive. CFS just happens to be linked to neuro disease. If you search the symptoms of HHV-6 infection they
are directly implicated in and with CFS. So no one can really say to you, or imply to you to chill out, and all is OK.

Lastly a thing to think about, is the amount (levels) of viral titres. Are they 10% elevated? 100% 500% 5000%?
Usually on a blood assay it shows the excepted titre levels of what would be positive and normal.

So a healthy person with positive titres for HHV-6 within normal range is nothing to write home about.
Yet a person with 'CFS' with positive titres for HHV-6 that are off the scale, is very much something to right home about.

The majority of Doctors will tell you that it's fine or normal to have raised IgG to HHV-6, or a positive PCR test result.
However, these doctors are unaware that people with 'CFS' may well be immune compromised, and thus it can be something
to look into further.
The titre was "off the scale" 8 years into the illness.

My point is, that unless and until it's proven that XMRV or HHV6a is causal, insurance companies and bureaucrats can deny benefits.
 
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They lowered the VipDX price by $200. That's more reasonable at $450.

Yeah I think they should give a discount if you later pay for other XMRV tests.
 

Esther12

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If they're now emphasising the culture test, does that mean they might be having trouble with the PCR? Which could mean that what they've found might not be XMRV? (There's a lot of 'mights' there.) My understanding was that culture tests also had a higher risk of false positives. If replication studies are focusing on PCR, could this cause trouble too?

I wish we had more news of independant replication studies.
 

Kati

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Hi CJB.

It's best to look into this further in my opinion.

It's indeed accurate to say (or be told) that viruses such as HHV-6 show up in healthy people, however healthy people have an immune defence against them.
This is where the 'OK' factor ends.

People with 'CFS' are shown to have depleted Natural Killer Cells/Lowered T-Cell count. So the fact one has a 'normal' or 'expected' viral infection
is very different if one has these immune supression issues seen in 'CFS' because the body cannot cope as normal.

HHV-6 is neuro invasive. CFS just happens to be linked to neuro disease. If you search the symptoms of HHV-6 infection they
are directly implicated in and with CFS. So no one can really say to you, or imply to you to chill out, and all is OK.

Lastly a thing to think about, is the amount (levels) of viral titres. Are they 10% elevated? 100% 500% 5000%?
Usually on a blood assay it shows the excepted titre levels of what would be positive and normal.

So a healthy person with positive titres for HHV-6 within normal range is nothing to write home about.
Yet a person with 'CFS' with positive titres for HHV-6 that are off the scale, is very much something to right home about.

The majority of Doctors will tell you that it's fine or normal to have raised IgG to HHV-6, or a positive PCR test result.
However, these doctors are unaware that people with 'CFS' may well be immune compromised, and thus it can be something
to look into further.
Very good point Dysautonomia. I am looking forward to see how my immune system is doing, and whether I test + for XMRV this time around.
I really wish my doctor was checking out this forum because there is lots that she needs to know.