Should Vip Dx have any obligation to refund patients that were tested for XMRV?

[its ME Jeff]

Since the two retractions came out concerning XMRV, do patients that have paid for XMRV testing feel that Vip Dx has some sort of obligation to them to refund the fee on this test?

 

[Daffodil]

those admin people at vip are pretty rude these days...i guess they have been getting a lot of requests for refunds lol

 

[Kati]

IMO the answer is no, no obligation. We all knew the tests were first generation, and not FDA approved. We all took a gamble. Let it go, and move on.

 

[ukxmrv]

No. it just joins all those other experimental tests that I have paid for in the past.

When I had the test I knew that it was experimental and I could easily have waited until I felt more confident about it and /or there was more proof. It was my decision.

I'm very grateful to the WPI for offering the test so that people could make a choice.

What about you Jeff? What's your feelings.

 

[floydguy]

I saw my money as a kind of donation to support the WPI's work. However, after the Mikovits debacle I admit I am bit miffed that I gave money to such a train-wreck. The way WPI have handled themselves makes it feel like I have been swindled. But I will let by-gones be by-gones. I don't see the point in pursuing the matter. However, if by some miracle the whole thing comes back from the dead and a new proven test is available I think it would behoove them to at least offer some kind of discount. If the WPI was a well run operation they would have sent a letter to those people who paid quite a bit of money for this test and explained what happened. But, alas, they did not.

 

[*GG*]

Isn't the WPI a different company than VIP dx?

GG

 

[floydguy]

Isn't the WPI a different company than VIP dx?

GG

I don't know what the structure is but they are both owned by the Whittemores.

 

[xrayspex]

can we get our money back? I spent a lot there, had more than xmrv, had cfs profile and few other ones over a couple years. yea if their work is in question I dont know, maybe.........has anyone been successful in getting money back? I used to look at it like a donation but now I wouldnt want to give my money to them, just like I wouldnt to the CAA either.

 

[taniaaust1]

Im not one who was tested but I think that they should be under obligation to refund only if there was false pretenses which there wasnt as everyone knew that an APPROVED diagnostic XMRV test wasnt out there and everything was still new research unproven and experiemental with testing not offically approved.

Im grateful to them to have done their best and have given patients an opportuntity to be tested even if it didnt all work out. What if it had been all right? and they had held back testing for a year or two waiting for approval (or maybe it would of taken longer even if the test had proved valid)? Patients would still of complained.


They obviously sincerely believed in their test and were honest about it not having offical approval

 

[floydguy]

They obviously sincerely believed in their test and were honest about it not having offical approval

I am not so sure that is accurate (but I certainly could be wrong). I thought it came up that this one of the core issues with Dr. Mikovits leaving: That testing should be stopped due to it not being accurate. I think it's possible that they realized the test wasn't good far earlier than they let on. As I got tested relatively early I don't fall into that category but there may be quite a few who got tested after the test was recognized internally as not being good.

 

[In Vitro Infidelium]

I'm breaking my PR purdah only briefly and I will not reply to comments. Anyone with questions should use the eamil at:http://cfsmirror.blogspot.com/

There have been a number of inaccuracies posted in this thread and the discussion has also lacked some pertinent information:

The WPI is not owned by the Whittemore family, WPI is registered with the IRS as a non profit corporation operating as a publicly supported trust, which means the WPI has no beneficial or controlling owners.

VIPdx, which is a private company has been owned solely by Harvey Whittmore for a number of years, so it is not precisely accurate to say that it is owned by the Whittemores and in terms of direct conflict of interest, none could be implied on the part of the WPI board.

The lack of breadth of the WPI board however, - with only two voting members listed in 2009 (Annette Whittemore and Michael Hillerby ) - could be considered a source of inadequate separation between the Whittemore family interests and the WPI . Not only are Harvey and Annette Whittemore spousally related, but Hillerby is a business colleague of Harvey Whittemore. It may be of further concern that the now listed vice president of WPI is Carli West Kinne who has a long established business relationship with Harvey Whittemore , including at Redlabs/VIPdx and who has also provided professional services to the Whittemore family. These relationships do not in themselves indicate wrong doing but do go to a question of demonstration of avoidance of any appearance of conflict of interest, that is considered good practice in non profit administration.

The proposition that the VIPdx tests were experimental and therefore VIPdx is void of obligation under contract law is not sustainable, because although the XMRV test was not FDA approved, to have the protection of experiment the tests would have to have been provided under approval from a relevant institutional review board, and no such IRB was ever acknowledged. The VIPdx XMRV tests were provided under purely commercial contract law, whatever those buying the tests may have thought. The operational law would have been that of the United States and the State of Nevada, any claim would have to be contingent on prescription given by the relevant legal authorities. Caveat emptor would likely apply, and only be void where misrepresentation could be shown. UK (and likely other European) based purchasers of the test could have sustainable cases against their commissioning doctor for the doctors failure to alert their patient to the unvalidated status of the test.

VIPdx is reported to have paid a licening fee to WPI and this appears to have provided a sum of $226,652 for the WPI in 2010 having been processed via WP Biotechnologies, in that context around 20% of the fees paid to VIP-dx for XMRV tests (based on WPIs own statements about the number tests supplied) may have contributed to supporting the WPI. Whether those who viewed the test purchase as a donation to WPI consider that an appropriate dispersement of income is clearly a personal judgement

Prior to the opening of the Center for Molecular Medicine building the WPI did not have facilities capable of processing tests on a commercial scale, so all VIPdx tests would have been carried out at the VIPdx lab located at a different part of the University of Nevada Reno campus. With the opening of the CMM building, the WPI was able to develop a commercial level of processing and it is this that UNEVX appears to have been created to exploit. VIPdx is still registered as a corporation in Nevada, however if its contracting capacity has been taken over by UNEVX then there there would seem little chance that the business has a active future and any claimsagainst the company would have little chance of being met. There would seem to be little basis to suggest that UNEVX or the WPI would inherit VIPdx liabilities, as they are wholy separate entities from VIPdx

 

[floydguy]

I'm breaking my PR purdah only briefly and I will not reply to comments. Anyone with questions should use the eamil at:http://cfsmirror.blogspot.com/

There have been a number of inaccuracies posted in this thread and the discussion has also lacked some pertinent information:

The WPI is not owned by the Whittemore family, WPI is registered with the IRS as a non profit corporation operating as a publicly supported trust, which means the WPI has no beneficial or controlling owners.

VIPdx, which is a private company has been owned solely by Harvey Whittmore for a number of years, so it is not precisely accurate to say that it is owned by the Whittemores and in terms of direct conflict of interest, none could be implied on the part of the WPI board.

The lack of breadth of the WPI board however, - with only two voting members listed in 2009 (Annette Whittemore and Michael Hillerby ) - could be considered a source of inadequate separation between the Whittemore family interests and the WPI . Not only are Harvey and Annette Whittemore spousally related, but Hillerby is a business colleague of Harvey Whittemore. It may be of further concern that the now listed vice president of WPI is Carli West Kinne who has a long established business relationship with Harvey Whittemore , including at Redlabs/VIPdx and who has also provided professional services to the Whittemore family. These relationships do not in themselves indicate wrong doing but do go to a question of demonstration of avoidance of any appearance of conflict of interest, that is considered good practice in non profit administration.

The proposition that the VIPdx tests were experimental and therefore VIPdx is void of obligation under contract law is not sustainable, because although the XMRV test was not FDA approved, to have the protection of experiment the tests would have to have been provided under approval from a relevant institutional review board, and no such IRB was ever acknowledged. The VIPdx XMRV tests were provided under purely commercial contract law, whatever those buying the tests may have thought. The operational law would have been that of the United States and the State of Nevada, any claim would have to be contingent on prescription given by the relevant legal authorities. Caveat emptor would likely apply, and only be void where misrepresentation could be shown. UK (and likely other European) based purchasers of the test could have sustainable cases against their commissioning doctor for the doctors failure to alert their patient to the unvalidated status of the test.

VIPdx is reported to have paid a licening fee to WPI and this appears to have provided a sum of $226,652 for the WPI in 2010 having been processed via WP Biotechnologies, in that context around 20% of the fees paid to VIP-dx for XMRV tests (based on WPIs own statements about the number tests supplied) may have contributed to supporting the WPI. Whether those who viewed the test purchase as a donation to WPI consider that an appropriate dispersement of income is clearly a personal judgement

Prior to the opening of the Center for Molecular Medicine building the WPI did not have facilities capable of processing tests on a commercial scale, so all VIPdx tests would have been carried out at the VIPdx lab located at a different part of the University of Nevada Reno campus. With the opening of the CMM building, the WPI was able to develop a commercial level of processing and it is this that UNEVX appears to have been created to exploit. VIPdx is still registered as a corporation in Nevada, however if its contracting capacity has been taken over by UNEVX then there there would seem little chance that the business has a active future and any claimsagainst the company would have little chance of being met. There would seem to be little basis to suggest that UNEVX or the WPI would inherit VIPdx liabilities, as they are wholy separate entities from VIPdx

Whatever...WPI may not be "owned" by the Whittemores but it is "directed" by them. Harvey Whittemore is clearly a smart businessman and likely has a web of shell organizations and clever lawyers to minimize liability but nonetheless the actions of the WPI and VIPdx are driven ultimately by the Whittemores. If this is not accurate and there is someone else behind the curtain I am all ears.

Don't confuse associates and various and sundry shell organizations as an organization with any "depth". And for heavens sakes don't assume because something is set up as non-profit it means that it is somehow white as the driven snow. Or that it can't be "controlled" by someone. Yes, "owned" might not be accurate. This legal parsing of terms seems pointless to me. I really wonder what your agenda is at times. None of us is writing for the New York Times here.

 

[Andrew]

I knew the test was experimental when I signed up. Nobody said otherwise. Also, other CFS experts were advising that it's too soon and probably not money well spent. So it's not as if I didn't have different points of view.

Also, I donated several hundred of dollars to WPI, and for all I know it went to a wild goose chase. But such is life. I was rolling the dice and I knew it. And at the time, they were the only game in town. I thought it was better make an investment, than sit back and wait for the world to change.

 

[floydguy]

I knew the test was experimental when I signed up. Nobody said otherwise. Also, other CFS experts were advising that it's too soon and probably not money well spent. So it's not as if I didn't have different points of view.

Also, I donated several hundred of dollars to WPI, and for all I know it went to a wild goose chase. But such is life. I was rolling the dice and I knew it. And at the time, they were the only game in town. I thought it was better make an investment, than sit back and wait for the world to change.

I think a lot of people share your sentiment. For some reason people like IVI seem to want to make you out as some wild-eyed lunatic who has drank the Kool-aid and is sacrificing small animals in your reverence for the goddess Judy Mikovits. Clearly, you also most likely believe in Big Foot and believe flying saucers regularly go in out of Area 51.

What is IVI's agenda? Why do so many UK people feel the need to be so critical of what is happening on this side of the pond? Is there not enough to criticize and keep track of over there? How about a bit more constructive thoughts about how to move forward. It's so easy to criticize which is all IVI et al seem to do.

 

[ukxmrv]

Floydguy,

There are many patients in the UK who are supportive of the retroviral research and very grateful to the USA researchers.

Just sorry that we don't make that more clear.

Please don't throw us all in the same boat at IVI.

Internet forums can be joined by people with a wide range of diseases, ideas, problems, solutions and it's important to remember that anyone can post here.

Thank goodness for the brave USA researchers and patients who continue to investigate, fundraise and campaign for all of us.

 

[floydguy]

Floydguy,

There are many patients in the UK who are supportive of the retroviral research and very grateful to the USA researchers.

Just sorry that we don't make that more clear.

Please don't throw us all in the same boat at IVI.

Internet forums can be joined by people with a wide range of diseases, ideas, problems, solutions and it's important to remember that anyone can post here.

Thank goodness for the brave USA researchers and patients who continue to investigate, fundraise and campaign for all of us.

Sorry I didn't mean to include patients, caregivers et al in that rant. I guess my frustration comes from the appearance of a cottage industry of UK agent provocateurs, astro turfers (and other such names Angela Kennedy uses) that seem to want to shut down ME research and maintain the "status quo".

 

[ixchelkali]

I don't think Vip Dx has any obligation to refund the fees for the test. We all knew that the test was experimental, that it hadn't been confirmed by other researchers or approved by the FDA. Therefore, it was a gamble. If you take a gamble, I think you must be willing to accept the risk that you might lose.

If someone tells you they know a racehorse who is a "sure thing" to win a particular race, and you bet on the horse, if the horse doesn't win the person who gave you the tip doesn't owe you the money you bet.

If it were proven that there was intentional fraud, that Vip Dx and/or WPI knew that the test was ineffective and intentionally covered that up in order to deceive patients and get them to pay for the test, that might be different. But I think that is unlikely, and even if it were true, it would be almost impossible to prove. I haven't seen anything that suggests to me there was intent to defraud.

 

[EnduringAngel]

I realise this thread is old now, but was wondering if anyone has bad any luck in trying to get back a refund from VIPDX?
I understand what you say about about it being difficult to prove intent to defraud, however if dr M is right then there is, as she says they continued to sell tests after she spoke to them about contamination.

I did email christian doulas on his blog but had no response. I'm very ill, so it's hard for me to take all the details in.
I don't want to waste energy chasing this if there's no chance.
However I am surprised people who paid don't join forces to fight this case.

Any advice appreciated.
A x

 

[EnduringAngel]

???

 

[barbc56]

What I don't understand is after reading threads from the time people were taking xmrv tests, they were taking the results as the gospel truth with very little if any members, mentioning it was experimental. This concerns me as now it seems, IMHO, people are doing the same thing with 23andME..

Just a thought.