WPI ethics...

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This post is acceptable because, altho it will rile alot of people, it contains facts. We as Forum participants have to determine whether those facts are correct and if the authors conclusions are correct. Of all the threads it would be terrible to lock this one even though it does arouse emotions.

I've heard these things for several months from several people I trust. My guess is that the facts are all true; the Whittemore's do and have owned VIP Dx Labs for several years. Dr. Mikovits is the Labs vice president. They are pursuing some sort of patent.

VIPDx - That they owned VIP Dx labs certainly startled me. I was relieved when someone pointed out that if you read between the lines that you probably could have inferred this. Honestly, because we don't know how to do that generally it would have been better if they had just said so from the beginning. They apparently bought the Labs long before XMRV was discovered. They also apparently only made their connection to the labs explicit (or mostly explicit) after rumors kept popping up about that.

The problem with the WPI's approach is that in retrospect you can infer bad things about it.

WPI - I don't. My belief is that the WPI is engaged in a very ardent quest to find the cause of their daughter's and others illness. They apparently bought what was I guess Redlabs because it was one of the few labs that did the kind of testing the Dr. Peterson and others needed. They are doing what they can to raise resources for the Institute and the quest to conquer CFS and other diseases. With regards patents. I feel the WPI should go for all the patents they can as that will enable them to grow WPI - which should only help us. Licensing fees and patents and things like that are things any research institution can and should do to build up their coffers.

I don't know Dr. Peterson personally but its inconceivable to me that he would lend his name to a cause that is not about the patients. His entire career has been focused on the patients. In a sense I'm a little pissed off at the WPI for putting themselves in a position in which their actions can be construed this way.

Research - On the other hand not everything has gone well at the WPI. They have contradicted themselves on that patient cohort. It now looks like there were at least 5 lymphoma patients in the cohort (see the other thread). I have heard from several people that some researchers are not getting the reagents they need. Whether the WPI has run out of them I don;t know but there are some people who are frustrated about that. I don't if its just a few (which would probably be inevitable) or alot - I have no idea.

For all their publicity they're a small organization. I had a surprise chat with Dr. Mikovits. At one point I had noted all the errors in the original version of the website (this was in reference to something else) and she laughed and said I wrote the entire thing...I was kind of busy at the time. :). If Dr. Mikovits is writing their website you can see they're stretched a bit thin. Her talent is not in writing - her talent is in labwork.

Real Wealth? - I wonder if Harvey is not worth as much as we think. His thing is real estate I believe - not a good field to be in in Nevada in the 2009. The market is still declining - people who bought houses LAST year at horribly reduced prices - are going underwater now because their house value has declined. Real estate here has been hit harder than almost anywhere else. He could have had alot of debts and could now have many less assets than he used to.

I disagree with the authors conclusions but I don't disagree with his ability to post those facts here. He did some digging - good for him/her. We can decide what to make of them.
Facts are truths, not guesstimates, suppositions, insinuations, possibly trues etc etc. These accusations might be true, but until they are proven to be true they are not facts and therefore they can not be said to be correct. Yet................
 
A

anne

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Why solicit funds if you have over $2 billion in assets? If my daugter was sick with CFS, and I had unlimited funds, I would have paid for a cure years ago...
Veritas, have you posted this here before, or are you the second person to say this?

Taking great care to speak to the post only, I find this gut-wrenchingly offensive. To say they haven't done enough is so cruel as to seem a joke.
 

Lily

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[snip]

Regarding your second point, I wholeheartedly agree with the rights of members to post facts here. I doubt there's a single member here who doesn't. The way they do it however should be open to member comments.

Regards, Wayne
I certainly agree with you, Wayne. From the get-go this poster violated rules, and if not then I'd better check them again to see whether an addition or revision might be in order.

I suppose rather than asking our questions we should have directed the poster to the rules, since a moderator did not, but went straight for us, which seemed odd. And I don't mind my comments being moderated, but if I'd asked "what do you hope to gain from this" or "why are you doing this", instead of asking "what is your motivation?", (which does not seem to be attacking one's motivation to me), would I have been moderated?

Perhaps the rules need to be read and agreed to upfront with registration as with other forums. Just a suggestion, I haven't given a whole lot of thought to this. Haven't totally assembled my brain yet today:worried:
 

Cort

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Agree that the tone seemed overly cutting.And its absolutely acceptable to comment on the tone of a post. I've done so many times.

Of course it was cutting towards an organization (even if a loved one) not a person on the Forums which does obscure the issue a bit. The CFIDS Association has received far more cutting attitudes here. In the CAA's case the dismissive attitudes were battled back with facts and it seemed to work; the disagreements over the CAA seemed to be more based on facts than attitudes after that.

I agree I should have put 'facts' in quotes since they have not been verified.

This is brutal stuff:

Why solicit funds if you have over $2 billion in assets? If my daugter was sick with CFS, and I had unlimited funds, I would have paid for a cure years ago...
I don't think he has unlimited funds. I wouldn't be surprised if they've poured just about as much as they could into this. This is Annette's life now. This is what she does- she said they have to cut her off at the dinner table because she just can't let these issues go. It sounds like they consume her. She's an assertive woman. I imagine (don't know, of course,) that she's squeezing every $ out of Harvey that she can.

Things do get a little crazy when money is involved. It would have been better if they'd just said "we own VIP Dx" but I'll bet they thought - Why do it? It'll introduce a few questions...why bother with it when we need all the good publicity we can get to get this thing rolling. I assume that that publicity roll out was an effort to bring the WPI money. The CAA did the same thing with the De Freitas announcement; they made sure everyone heard about it. They regretted it later but at the time it seemed like the thing to do. These organizations need lots and lots of money to function. That's the nature of the beast. If they're going to do research they need to bring the money in to fund it.
 

Cort

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I've redone my original post a bit:

This post is acceptable because, altho it will rile alot of people, and its tone is rather cutting, it appears to contain facts. We as Forum participants have to determine whether those facts are correct and if the authors conclusions are correct. Of all the threads I actually think it would be terrible to lock this one. (This is kind of a test for us :))

I've heard these things for several months from several people I trust. My guess is that the facts are all true; the Whittemore's do and have owned VIP Dx Labs for several years. Dr. Mikovits is the Labs vice president. They are pursuing some sort of patent.

VIPDx - That they owned VIP Dx labs certainly startled me. I was relieved when someone pointed out that if you read between the lines that you probably could have inferred this. Honestly, because we don't know how to do that generally it would have been better if they had just said so from the beginning. They apparently bought the Labs long before XMRV was discovered. They also apparently only made their connection to the labs explicit (or mostly explicit) after rumors kept popping up about that.

The problem with the WPI's approach is that in retrospect you can infer bad things about it.

WPI - I don't. My belief is that the WPI is engaged in a very ardent quest to find the cause of their daughter's and others illness. They apparently bought what was I guess Redlabs because it was one of the few labs that did the kind of testing the Dr. Peterson and others needed. They are doing what they can to raise resources for the Institute and the quest to conquer CFS and other diseases. Licensing fees and patents and things like that are things any research institution can and should do to build up their coffers.

I don't know Dr. Peterson personally but its inconceivable to me that he would lend his name to a cause that is not about the patients. In a sense I'm a little pissed off at the WPI for putting themselves in a position in which their actions can be construed this way.

Research - While I admire and applaud what the WPI is doing pn the other hand its clear that not everything has gone well. They have contradicted themselves on that patient cohort. It now looks like there were at least 5 lymphoma patients in the cohort (see the other thread). lThis hits right at their credibility as an a research institute and its what's riled up Dr. Vernon. For all her great personal warmth toward patients Dr. Mikovits, has, a few times sounded more like an angry advocate than an objective researcher. I have heard from several people that some researchers are not getting the reagents they need. Whether the WPI has run out of them I don;t know but there are some people who are frustrated about that. I don't if its just a few (which would probably be inevitable) or alot - I have no idea. These are all little problems I think we'd all like the WPI not to have - and that they didn't necessarily need to have.

A Small Organization - For all their publicity, though, they're a small organization. I had a surprise chat with Dr. Mikovits. At one point I had noted all the errors in the original version of the website (this was in reference to something else) and she laughed and said I wrote the entire thing...I was kind of busy at the time. :). If Dr. Mikovits is writing their website you can see they're stretched a bit thin. Her talent is not in writing - her talent is in labwork. They are going to make (hopefully correctable) mistakes at times. The commitment, however, from Dr. Peterson and Annette Whittemore and Dr. Mikovits is clearly there - they are all passionate about the need to conquer this disease.

Real Wealth? - I wonder if Harvey is not worth as much as we think. His thing is real estate, I believe - not a good field to be in in Nevada in the 2009. The market is still declining - people who bought houses LAST year at horribly reduced prices - are going underwater now because their house value has declined. Real estate here has been hit harder than almost anywhere else. He could have had alot of debts and could now have many less assets than he used to.

I disagree with the authors conclusions but I don't disagree with his/her ability to post those facts here. He/she did some digging - good for him/her. We can decide what to make of them. That's what the Forums are for.
 
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Gerwyn

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"The authors of the two UK studies did not attempt to replicate the WPI study. Replication requires that the same technologies be employed. The WPI sent reagents and information to several groups of researchers in an effort to support their replication studies. Neither UK study requested positive control blood, plasma or nucleic acids from the WPI."

http://www.wpinstitute.org/news/news_current.html

The HHS Blood XMRV Scientific Research Working Group, and the CDC are known to be using blood and reagents from the WPI also.
that is the key point they has easy access to the bllod but made no attempt to access it
 

richvank

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Hi, all.

I just want to make a couple of points.

The first one is that in order for anything of significance to be done in the healthcare field, there has to be the potential for someone to make money. In my opinion, that is just a fact of life in our economy, which is market-based capitalism. It costs money to do research, and it costs money to bring treatments to the people who need them. While it's true that significant amounts of money can be raised from contributions, the profit motive is necessary to make things happen in a big way.

While all of us would like for knowledge and treatment to be free, this is just not reality, so let's come to terms with this fact of life, and not begrudge someone who takes the initiative to accomplish something in this field and make money doing it. If it weren't for them, little of significance would happen in terms of actually getting significant help to the people who need it.

The second point I want to make is that I have met Judy Mikovits and have interacted with her over several years. I believe her to be a competent scientist who is motivated to help people who have CFS. I've also met Dr. Peterson and have been aware of his work over the years, and I believe him to be similarly well-motivated. As we know, there have been three studies reported now that appear to disagree with the results of the study reported by WPI and their collaborators. This sort of thing occurs all the time in scientific research. It's too early to draw conclusions. Science doesn't operate by "majority rules," but by what's actually true in nature. Sometimes it takes a while to find that out. As time goes by, we will learn why the results have come out differently in these studies. Is it in the selection of the patients studied, or of the techniques used in the measurements, or are there population differences from one country to another? We just have to wait and see. In the meantime, I think the process is best served by thinking the best of the people involved, rather than the worst. Obviously, we are all human, we all have a variety of motivations for what we do, and we all sometimes make mistakes, even when we have the best intentions. Let's keep our powder dry and not get in the way of the scientific process by impugning the motives of those we need to rely upon to get at the truth.

Rich
 

garcia

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Great post Rich! If everyone in the world thought like you, the world would be a better place.
 

bullybeef

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What I find interesting about this thread is the person whom began this diatribe only made 4 posts, in fact that is his sum total of all his posts on here to date. That is out of 72 post made on this subject. Now I would never ask people to keep their opinions to themselves but this user wanted to receive a reaction, and this is exactly what he has achieved. 4 post out of 72 (including mine).

Being a forum member of a UK football (soccer) forum, we do find anonymous posters solely there to cause a fuss or (as we say in the UK) wind people up. We call them WUMs (wind up merchants).

This type of blind opinionated, and self obsessed claptrap is par for the course on maybe most fanatical sport forums, but I doubt a support forum is the place for this kind of content. This user has now started posting the same misconstrued, and maybe even libellous falsifying on the WPI facebook page.

This person is all about causing friction and the more we respond and discuss it, the more it validates it.

In the past, whenever I have experienced a WUM like this, I have ignored it, which I will do so from now onwards. It is worth my time and energy. I should think we could all achieve much more with the amount of energy we possess.
 

Adam

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Being a forum member of a UK football (soccer) forum, we do find anonymous posters solely there to cause a fuss or (as we say in the UK) wind people up. We call them WUMs (wind up merchants).
No disrespect to some of those trying to be fair and equal and trying to encorage free speech and deabte, but some of us can maybe spot this better from a less well informed level/ street level if you like. Bullybeef is right. I posted in post 42 saying either rude or a wind-up merchant. Thanks to Bullybeef it now seems fairly certain that this is mischief making of the worst kind. If you really wanted to join a debate on here you would first get to know people and read loads of posts and then maybe post on something not to controversial. I am all for debate. Hearing both sides of the argument. On many occasions I have been persuaded away from my original standpoint by excellent reasoning. And sometimes I see a wind-up for what it is.
 

kurt

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No disrespect to some of those trying to be fair and equal and trying to encorage free speech and deabte, but some of us can maybe spot this better from a less well informed level/ street level if you like. Bullybeef is right. I posted in post 42 saying either rude or a wind-up merchant. Thanks to Bullybeef it now seems fairly certain that this is mischief making of the worst kind. If you really wanted to join a debate on here you would first get to know people and read loads of posts and then maybe post on something not to controversial. I am all for debate. Hearing both sides of the argument. On many occasions I have been persuaded away from my original standpoint by excellent reasoning. And sometimes I see a wind-up for what it is.
I thought of the same thing and PMed Veritus and did get a response, and he/she seems to really believe that Harvey Whittemore should not be trusted due to some past business dealings. Well, there is plenty of information out on the web about him and I think we can all look that up if we like and come to our own conclusions.

So this appears to be a legitimate post from someone who simply does not share the majority view of WPI found here. Sorry, does not look like a wind-up or CFS baiting post. And I think it is fair to say that with all these posts the 'other side' has had plenty of opportunity to mount an opposing view.

Unless more information is posted, such as the fact-checking I suggested earlier, or more factual evidence, I think this thread is a time-waster.
 

julius

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I really don't have much interest in many of the specifics regarding some of the points being discussed here. What I objected to is the following:

1) Vertias comes onto this forum, and in his very first post, addresses us in a very "in-your-face" manner. He then coupled his fairly abrasive manner with with some pretty condescending and insulting remarks.

2) Longer-term members here who objected to this kind of disrespectful posting (from a newcomer no less) decided to "push back", and in some cases poke a little fun.

I have no objection with Vertias bringing up his points of view, and I doubt others do either. But if a person posts disrespectfully, they're going to get pushback. That's sort of the way life works. And I hope that Vertias gas gotten this message loud and clear. Sometimes moderate replies to egregious posting simply do not work.
I'm a bit behind. Seems like pacific time zone is not the best for running with the pack here.

This is exactly what I was thinking when I gave this guy a couple jabs. This poster came out swinging from post #1 with generally rude and arrogant comments. Then, after a couple reasonable responses from members, he increased his rudeness and arrogance.

I realized that there was no chance of a reasonable, worthwhile discussion, so thought I'd have a laugh. I thought the thread would die soon after. Then I wake up this morning (afternoon :ashamed:) and find 70 plus posts.

I'm not worried about the WPI folks. They are grown ups, and I'm sure they can take a few misguided insults.

I agree with the sentiment that this is not really worth discussing too much though. It's all been discussed before in a reasonable, thoughtful manner. And besides, it looks like Veritas has left us for greener pastures anyways.
 

Doogle

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I thought of the same thing and PMed Veritus and did get a response, and he/she seems to really believe that Harvey Whittemore should not be trusted due to some past business dealings. Well, there is plenty of information out on the web about him and I think we can all look that up if we like and come to our own conclusions.
Kurt, don't make us work so hard, where should we look?
 

julius

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From what I've read, Harvey Whittemore is a lawyer, casino developer, and lobbyist. So it is very possible (likely?) that there are some 'unsavory' things to be turned up. But the WPI or VIPDx ought to be judged on their own merit. It's easy to assume guilt by association (if indeed there is any 'guilt' to be found), but such an assumption is not founded in fact.

I personally feel that Mr. Whittemore has assisted in ways that he can (especially financially, and with lobbying), but has remained at a distance otherwise.

Most of this information comes from this article;
http://www.wpinstitute.org/news/docs/RGJ-daughters_illness.pdf
 

kurt

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Kurt, don't make us work so hard, where should we look?
I understand, just google 'Coyote Springs Nevada Whittemore' that should be a good starting place.

From what I've read, Harvey Whittemore is a lawyer, casino developer, and lobbyist. So it is very possible (likely?) that there are some 'unsavory' things to be turned up. But the WPI or VIPDx ought to be judged on their own merit. It's easy to assume guilt by association (if indeed there is any 'guilt' to be found), but such an assumption is not founded in fact.
I personally feel that Mr. Whittemore has assisted in ways that he can (especially financially, and with lobbying), but has remained at a distance otherwise.
Good point Julius. WPI is not Harvy Whittemore. However, he does have a past history of using political leverage, after all he is a lobbyist for the casino industry, and he has ruffled some feathers from time to time (and some desert turtles, sorry you will have to look that one up, don't want to get into that debate here...). A colorful person who just might be able to help pull down some serious funding for CFS, which I think would be a very good thing if it is spread around fairly in the CFS research and advocacy community.
 
G

Gerwyn

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I understand, just google 'Coyote Springs Nevada Whittemore' that should be a good starting place.



Good point Julius. WPI is not Harvy Whittemore. However, he does have a past history of using political leverage, after all he is a lobbyist for the casino industry, and he has ruffled some feathers from time to time (and some desert turtles, sorry you will have to look that one up, don't want to get into that debate here...). A colorful person who just might be able to help pull down some serious funding for CFS, which I think would be a very good thing if it is spread around fairly in the CFS research and advocacy community.
Hi Kurt I thought that that guys name was weird
Veritas Aequitas - 3 definitions - It isn't Greek; it's Latin. Veritas et Aeuqtias - Verity and Equity - Truth and Justice.
we have a ringer
 
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Some quotes for you to consider:
We can never be sure that the opinion we are endeavoring to stifle is a false opinion; and if we were sure, stifling it would be an evil still. - John Stuart

Censorship reflects society's lack of confidence in itself. - Potter Stewart

The peculiar evil of silencing the expression of an opinion is, that it is robbing the human race; posterity as well as the existing generation; those who dissent from the opinion, still more than those who hold it. If the opinion is right, they are deprived of the opportunity of exchanging error for truth: if wrong, they lose, what is almost as great a benefit, the clearer perception and livelier impression of truth, produced by its collision with error. -John Stuart Mill

We are not afraid to entrust the American people with unpleasant facts, foreign ideas, alien philosophies, and competitive values. For a nation that is afraid to let its people judge the truth and falsehood in an open market is a nation that is afraid of its people. -John F. Kennedy

And of course, this one....

I disapprove of what you say, but I will defend to the death your right to say it. - Voltaire.

I can't find it, but someone in American history said the best thing you can do to expose erroneous reasoning is to allow it to be heard. (something like that.)


So folks, don't be bothered. This challenge will only make WPI stronger as the challenge is answered with facts and correct reasonings. You can't prove motive, it is not testable. So we all just form our own opinions about others' opinions. It will all come out in the wash. Now, if some of the purported "facts" are not true, that is libel and it should be corrected or removed by the moderator. I know, I have been sued for libel for what other people posted on a discussion forum I ran with the newspaper I owned. I was moderator too. It was one of the points in an $8 million lawsuit against me personally and my business. Now, the facts of the case have yet to be determined and also whether there is a legal basis for a claim on whether I share responsibility for what someone else posted. Some people have trouble determining what is opinion and what is claimed fact.

Speaking of which.... I wonder, what do you think is the chance that Whittemore, a successful real estate businessman for years, has not at some point ticked someone off. hmmmmm..........

I certainly don't want to impute ulterior motives for someone who posts here.

Another point, now correct me if I am wrong. But wasn't it the North Carolina lab that was the first out of the gate offering tests for a fee? Yet, WPI, or VIP would know that their tests would be much better at finding the positives and giving people a diagnosis that is more likely to be accurate than the other. So it was a matter of preventing patients from being fleeced, (in their minds).

I also can't believe that Whittemore, the father and by extension the family, has not been hurt by the severe downturn in real estate in Nevada. I read a report that the real estate is even worse in Nevada.

Tina
 
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