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WPI ethics...

Discussion in 'General ME/CFS News' started by Veritas Aequitas, Feb 28, 2010.

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  1. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Varitas, thank you for taking the time to post a reply to all the points made here.

    Let's see, why would your friend Harvey have XMRV diagnostics in July, 2008? Well, I don't know. Are you suggesting that Harvy knew that XMRV was being found in CFS much earlier and they held it back? Well, now, considering they have a very sick daughter, that would surely be awful. Can you imagine that?

    There could be lots of explanations. If anyone knows more information on this, please let us know.

    Agreed, a non-profit should be transparent.

    And by the way, just as I said, some people don't know the difference between opinion and fact. The statement that Mr. Whittemore threatened and bullied is opinion. One person's threat is another person's promise of action, informing. One person's bullying is another person's firm stance. These require perception, judgment, and are therefore opinions.

    For all of you others, don't worry about the Whittemore's. If they have the past as purported, they are surely thick skinned by now. And they had to know that some darts would be thrown at them. Any time someone is the first or makes claims or rises above the pack, they become a target. They may have expected it more from other researchers. And if they were smart, they would have expected some from other CFS advocacy organizations. So, no worries. This is all part of the process.

    Tina
  2. Here is an example of Harvey using his money, political clout, and influence to get his way by "bullying":

    "In theory, all developers are equal, but the truth is some are more equal than others. Two huge violations of the master plan are, not surprisingly, both the work of the same developer, Harvey Whittemore.

    In case youre new to Sparks, Whittemore successfully forced into the Spanish Springs area and in an area never designed for one on the master plan a casino, the Lazy 8. Despite the casino being voted down by both the Sparks City Council and the Sparks Planning Commission, Whittemore successfully bullied his way through by threatening the city with a $100 million lawsuit.

    The cowering Sparks City Attorneys office had closed-door meetings with the City Council and, without a public hearing, the City Council reversed themselves. Whittemore won his case by default."

    "So, it boils down to Harvey Whittemore and the kowtowing city staff vs. the citizens of Wingfield and the master plan. The Sparks Planning Commission meets this Thursday. I will keep you posted."

    http://www.theirahansenshow.com/2008/02/sparks-master-plan-follow-or-ignore.html
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

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    or, could he have been right on a legal point, thus the council attorneys advising a settlement?

    I have covered city politics before. Usually governments don't cave into threats of lawsuits unless they think they might lose.

    So maybe he was right to bring that lawsuit.

    But I am also familiar with master plan and that city's have a right to have one and enforce it. And that is what makes me think that maybe he must have a point, else the city wouldn't have caved. I just haven't seen where city caves unless they think they might lose.

    This is from reporting on local government and many zoning issues for 7.5 years. Of course, this is Alabama. ;-)

    Tina
  4. With regard to the XMRV study:

    For a study of this magnitude, I don't think patients with cancer should have been included. At least not in the 1st study that carries such major implications. Especially if they constitute 20% of the patient cohort. Since patients with cancer were included, the WPI should stop hiding this information and be forthcoming about the sample ... See Morecharacteristics. Instead they post on their site in mid-November that none of the patients had cancer or were from Peterson's bio bank (http://www.wpinstitute.org/research/research_biobank.html).

    If a researcher wants to study XMRV and cancer in CFS patients the sample cohort should be much larger than 101 patients and the researcher should be honest about patient characteristics.

    WPI suddenly created a bio bank with over 8000 samples overnight. This was added to their website in mid-November in response to criticism of their lack of characterising the 101 cohort (http://www.wpinstitute.org/research/research_biobank.html). They went from marketing WPI on Peterson's historical bio bank, but after the study came out, they threw Peterson under the bus because he didn't serve their purpose anymore. So miraculously WPI had a bio bank with over 8000 samples INDEPENDENT from Peterson's. The XMRV study says that all samples were collected from 2006-2009; this means that they would have had to collect at least 2000 samples per year starting at the beginning of 2006, and ending at the end of 2009. I'm calling BS. Peterson already stated in his CFSAC presentation that some of his samples were used.

    So not only do I have issue with the shady business aspect, but also the lack of transparency about the 101 patient cohort by WPI and Mikovits. That's just bad science, regardless of the prestigious journal Science; obviously their peer review process missed something. To this day, WPI is still dishonest about characteristics of the patient cohort. They state that:
    Blood samples from the WPI repository were chosen at random and there were no patients chosen with lymphoma or mention of lymphoma in this study. Another preliminary study was done at a later date that had nothing to do with the XMRV Science publication.
    Petersons CFSAC testimony proves that at least 5 patients had cancer. Wheres the transparency?
    They also state
    Dr. Daniel Peterson understood the promise that a historical bio bank could bring to scientific understanding thus he began collecting and storing patient samples in the early 1980's. However, it is important to note that no samples from this historical bio bank were used in the Institute's XMRV studies.

    Seems that theyre not being forthcoming about everything, which makes me question the integrity of the entire study, WPI, and all involved.
  5. Dorothy

    Dorothy

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    I just scoured the Nevada Secretary of State's "business entity search" at http://nvsos.gov/sosentitysearch/CorpSearch.aspx


    You can search by business name, number, or officers, among other things, using their drop-down menu. I checked thoroughly and there is no Judy Mikovits listed as an officer of any business in Nevada. The only Mikovits listed is a Thomas Mikovits who has a business in Vegas.


    On the WPI's website, on their researcher profile page, it is stated that Dr. Mikovits "served as Chief Scientific Officer and VP of Drug Discovery at Epigenx Biosciences, where she led the development and commercialization of cell and array-based methylation assays for drug discovery and diagnostic development." So it's no secret that she has commercial experience.



    Also, I don't understand the statement made earlier by Veritas Aequitas:

    "If Mikovits was finding XMRV as early as January, why did Harvey Whittemore found XMRV Diagnostics, LLC on 7/3/08"


    The Science paper was submitted for publication in May 09, I think, and XMRV must have turned up in patients LONG before then....good science is slow. Besides, there's this quote from a Reno newspaper article (it's appeared in several places):


    "It was January 22, and we were in a San Diego restaurant called the Yard House," said Mikovits, who had gone there with fellow scientist Vincent Lombardi to present the results of their research to Frank Ruscetti and Robert Silverman, two of the world's leading virologists.

    "We kept waiting for them to say something," Mikovits said. "I was nauseous. Bob (Silverman) waited a long a time, and then he looked up and said, 'Well, this is going to change their world." "
    ---------

    It sounds to me as if the research was already well underway, and then the Cleveland Clinic and NCI were brought in as collaborators. No matter when XMRV was discovered in CFS patients, the WPI certainly couldn't have told patients about it before they published their paper. It had to be kept under wraps, except for discussion with the scientific community.


    I personally don't care if Harvey Whiitemore is a saint or a bully, as long as the research staff at WPI do their jobs and do them well! Thus far, I have no real reason to doubt them. And if Bob Silverman of the Cleveland Clinic thought that this finding was going to change our world....well, that's more important to me than who's who in Nevada business.
  6. anne

    anne Guest

    Kurt, It does seem the purpose of this thread is personality driven, by one person who wants to twist facts and spread innuendo. The fact that a newspaper describes a lobbyist as bullying a city council is not such a shock. Or that HW founded a business six months after they found XMRV. There are plenty of places on this board to talk about the initial study.

    There was someone who came in here a few months ago and described everyone as sheep and said some of these same things. I don't know if it matters, really, whether its the same person or different--except periodically coming in here just to insult posters and spread paranoia about the Whittemores seems a mostly destructive activity. But, I think, so does doing it once. In other words, I'm in favor of closing this thread.
  7. JPV

    JPV Senior Member

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    I realize that many people have gotten very emotionally attached to this issue.

    I realize that people are tired of being told that it's "all in their head" and would love to have a test that proves that it isn't.

    I realize that people would love to just take a pill and be cured, instead of working on the tough dietary and lifestyle changes that seem to be necessary and helpful to many.

    Personally, I'm of the opinion that XMRV will turn out to be one huge disappointment.

    If it even exists, I think that it may just be part of a larger health problem, and not the root problem. How many people with CFS/FM also test positive for EBV and Lyme disease? Did these diseases cause CFS/FM type symptoms or are they just opportunistic in people with a broader health problem?

    I am of the opinion that this condition is caused by the various toxins and heavy metal poisoning that exist in our modern world. I believe that in this potentially immune compromised state, many other viruses and bacteria can flourish in your body. I think this is why so many official medical organizations try to paint this illness as a psychological one. Can you imagine the size of the class action suits against the dental industry, should it be discovered that amalgam fillings have been poisoning people for over a century? There is much documentary evidence that the hazards of Mercury filling has been know as far back as 100 years...

    Mercury fillings were of course cheap to use and therefore were implemented regardless of health concerns. I just recently did a hair analysis test from Doctor's Data that confirmed this long standing belief of mine. It showed high levels of Mercury and Arsenic in my system.

    I have more hope in the work of people like Paul Cheney, Kenny Meirleir, Sarah MyHill, Amy Yasko, Rich Van Konynenburg, Andrew Cutler and Freddd. This wonderful site, that Cort has been kind and industrious enough to put together, for all of us, has proven invaluable to me. I've learned more solid and useful information in the past few months, of scouring this site, than I have in the previous ten years. I'd rather focus my time and energy by incorporating elements from these people's research into my health regimen, than wasting precious time waiting for a magic bullet cure... a cure that may never come.
  8. Sparklehorse

    Sparklehorse *****

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    You are never anonymous on the Net. If someone really wants to trace you they can, easily. So, you better be really sure of what you are saying. It's definitely right to keep an open mind on everything, even the possibilty that there are people out there who would like nothing better than to smear the WPI and it's work. Equally you may be right? It's a dirty old world out there and all of us innocent ME/CFS patients are stuck in the middle of it. Let's hope this gets sorted out soon.
  9. charityfundraiser

    charityfundraiser Senior Member

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    I would also like to see the facts checked. If the $2 billion statement is inaccurate, it should be corrected.

    I vaguely remember reading some reference to $1.x billion several years ago but I don't think it was a good source.

    On a cursory Web search, I did not find references to "Harvey Whittemore" and "billionaire", but I did find many references to him being a "multi-millionaire", and many references to his "cronies" being billionaires.

    Multi-millionaire... I guess that could mean anywhere from $2 million to $999 million. I would guess closer to the latter based on the nature of his businesses and "cronies".
  10. V99

    V99 *****

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    Is it not more likely that the 101 patients did not have cancer, as the WPI say, and that they tested some CFS patients who had developed cancer separatley.

    As for the accusations, being good as business does not make you a bully. You say they have so much money, why don't they use it all. Firstly, I doubt 2 billion would cover the true cost of finding a cause and a cure, never mind financial support. It also would not automatically bring good quality scientists into the fray. You need government bodies to be with you also. It doesn't matter whether it is XMRV or several other biological causes (everthings biological)
  11. charityfundraiser

    charityfundraiser Senior Member

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    Even if the number is off by an order of magnitude of 10 or 100, I understand what you are saying. Others may disagree.

    I would not sit well with myself if my family accepted money for our non-profit from people who don't have enough money for food and housing before we donated enough of our own money away down to a more similar level, though it is the prerogative of each donor.

    It also dismays me to see the public face of the WPI on FaceBook complain repeatedly that the CAA didn't fund their studies when that subject has been beaten to death, and the CAA has less funds available to it than the WPI.

    I donated to them anyway even though I didn't really think they need money from me to get things done.

    But as for financial motivations, I don't see how it could be significantly profitable unless their research did pan out, and if it does pan out, then that should mean it's scientifically sound, shouldn't it?
  12. charityfundraiser

    charityfundraiser Senior Member

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    They need to explain why the same sample ID numbers were in the cancer data slide and in the Science paper.
  13. V99

    V99 *****

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    Has anyone asked them this?
  14. Jenny

    Jenny Senior Member

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    Like JPV, I'm not particularly optimistic about XMRV. I'm trying to keep an open mind, but I do feel it's rather unlikely that the cause of ME will suddenly be found. After all, we still don't know the cause of many other neuro- immune and auto-immune illnesses, for example, MS, rheumatoid arthritis, motor neurone disease, despite years of research and lots of money being invested.

    I think the best that can be hoped for is that a) some ME sufferers will have XMRV as part of their illness and that treating this helps these people, just as treating other viruses has helped some, and/or b) the interest in XMRV will give researchers the impetus to find out more about the disease process so that although the cause may not be clear, treatments will be identified so that the illness can be better managed.

    It's difficult to voice that opinion here as so many people have so much hope that XMRV will be the answer, and hope is such a positive thing.

    We also seem to be in a similar situation as Lyme disease has been in for decades, with disagreements about the validity of tests. And with Lyme, even where testing seems conclusive there seems to be no one clearly effective treatment. So I worry that this may happen here too, even when the testing issue is resolved.

    But I hope I'm completely wrong about all this :rolleyes:

    Jenny
  15. charityfundraiser

    charityfundraiser Senior Member

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    I have in a FaceBook comment reply to Andrea but not through official channels. No reply yet but at some point she mentioned Dr. Mikovits and Mrs. Whittemore would respond 2 days ago regarding the recent study and Dr. Vernon's note. I haven't seen anything yet, but it's fair to give them more than 1 business day.
  16. natasa778

    natasa778 Senior Member

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    They do. According to information I have (personal sources, cannot disclose more) they are struggling and desperately need money to continue research.
  17. muffin

    muffin Senior Member

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    USA!
    VERITAS AEQUITAS: I note you joined us on 28 February and all of your 17 comments are solely directed at attacking the Whittemore family and the WPI.
    Truth and justice? I don't think so. You have your own agenda and it does not involve "protecting" those of us with CFIDS/ME from those "evil" Whittemores.

    Why don't you turn your attentions on the US and UK governments and go after THEM for the damage they have done to ALL of us - CFIDS/ME sick and the rest of the population? Go look for cover-ups as I am certain you will find them starting way up at the top of the Federal health organizations and moving way down to the very bottom rungs of the local governments.

    So Truth and Justice - go hunt down the EVIL forces of the US and UK governments. THEN you would be protecting us poor, sick CFIDS/ME people. Cheers.
  18. garcia

    garcia Aristocrat Extraordinaire

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    So you were merely "metaphorically" defaming him? So you admit that your $2 billion figure was a complete fabrication designed to malign the character of Harvey Whittemore?

    You could apply exactly the same argument to our families. None of our families have gone bankrupt trying to cure us. Does that make them bad people? Did your family go bankrupt trying to help you? If not why not? Do they not love you?

    If you spend every penny on day1, what happens on day2 when you have no money left?
  19. Esther12

    Esther12 Senior Member

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    US presidential candidates are normally rich, but unwilling to put all their money into their own campaigns. Celebrities continually take part in appeals for donations from those with less moeny. It's just the way our minds work.
  20. garcia

    garcia Aristocrat Extraordinaire

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    Where is the $2billion figure from? "Veritas" is yet to supply a source for that.

    I think you've answered your own question. Harvey Whittemore's past and financial dealing are completely off-topic for a CFS support board. In any case my understanding is that his dealings with the WPI are minimal, it being essentially Annette Whittemore's project.

    As well as being a complete waste of time, this board is also opening itself up to potential legal proceedings with several allegations made without any supporting evidence.

    Kurt I don't know if you are aware but there was a poster on another forum calling himself "nofool" who had a not dissimilar modus operandi. My thoughts were also "Hmmmmm".
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