1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
Discuss the article on the Forums.

Dr Vincent Lombardi

Discussion in 'XMRV Research and Replication Studies' started by shrewsbury, Nov 2, 2009.

  1. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    54
    Sorry if someone already posted, and this is a repeat. Haven't been able to keep up... Got this from co-cure today:

    http://www.redlabsusa.com/

    I spend so much time trying to keep up, but I hadn't realized tha Dr Lombardi was the Director of Operations for the testing that VIP Dx is offering. It's probably politically astute to lead the pack in getting out quality testing.

    But somehow my radar antenna is wavering a bit as well at the cross-over between science and capitalism.

    if
  2. PoetInSF

    PoetInSF Senior Member

    Messages:
    167
    Likes:
    8
    SF
    Pure conflict of interest that tests their credibility. I have no idea why WPI tolerate this kind of things. Whittmores spent good money to fund reasearch for CFS and their daughter, they should have some control over it.
  3. You have a good moral point here.

    However, in the absence of being a nun in a war zone, all medical systems are based on care for the exchange of money.

    1)If you go see a doctor, you pay by mastercard, then he/she cares.
    If not the state bills in you in taxes to see someone who yaws and ignores you.

    2) If you go to Harvard, you pay $$$ to be educated, if not, you pay in taxes to get basic state education.

    3) If you go to McDonald's, you'll get fed - if you pay.

    So yes, the WPI and VPIDX are linked for sure, but remember everytime we see a doctor, they 'care' because they're getting paid to.

    At least it's very necessary care (XMRV), unlike plastic surgery and boob jobs, and tummy tucks. :rolleyes:

    (Which reminds me, mine is overdue).
  4. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    54
    Boy Poet - do you do slam poetry?

    Is it conflict of interest???? I sure wouldn't go that far. The government hasn't done anything basically for 25 years or so. SO they haven't found any potential causes let alone how to then test for them. Will be fantastic when your health system provides the test and treatment for free for everyone.

    Meanwhile, it's in the private realm and has to be dealt with there. Would it be better for private companies with no relationship with WPI to be offering tests willy-nilly? I don't think so. This is the only way I can see for there to be quality control - to keep the science pure and not let it get into the hands of the scam-artists.

    If I remember correctly, WPI is open to working with any reputable lab that will strictly follow their protocols. VIP Dx just got on board the soonest.

    Hmmmm I'm a Canadian and used to public health, so the ramifications of how this all works are new to me - never had to think too deeply about them before. Maybe my radar should not have been wavering.

    Can't understand what you mean about the Whittemore's. It seems to me that they've thought this all out and find that licensing the test to a respected company to be the best way to go to ensure quality control by having Dr Lombardi oversee the test development there. This way they are avoiding conflict of interest by not producing the test themselves.

    if:)
  5. dannybex

    dannybex Senior Member

    Messages:
    2,170
    Likes:
    514
    Seattle
    Well...

    Others have raised the same question. Yes, he was the co-author on the study, but it also does send up some (small) red flags (red flags for RedLabs) when his is the only company with THE approved test for XMRV...esp at $650 a pop.

    But I seem to recall Cort (?) saying that profits would go back into research at the WPI???

    d.

    p.s. and don't these scientists have to divulge their potential conflicts of interest when submitting papers to journals like Science?
  6. PoetInSF

    PoetInSF Senior Member

    Messages:
    167
    Likes:
    8
    SF
    The conflict in this case is that someone is deriving income from what he is advocating. That puts what he is advocating in question, and that is something that must be avoided at any cost in a scientific work. (It doesn't matter where the profit goes to.) In this case, WPI is making it even worse by pushing the test for something that does not have treatment yet.

    Time will tell, but this premature/blind enthusiasm/support for xmrv that are endemic in this site are more likely hamper the progress in finding solution for CFS than it helps.
  7. PoetInSF

    PoetInSF Senior Member

    Messages:
    167
    Likes:
    8
    SF
    I'm glad you feel glad, but there are ways to make sure that test is done right without becoming their employee. And WPI should wait till the clinical trial of anti-retroviral drugs is done before peddling the test on the patients.
  8. SeaShel

    SeaShel Senior Member

    Messages:
    111
    Likes:
    0
    AZ
    Poet -

    No one is asking you or forcing you to get tested.

    We all have the free will to look at the situation and make a choice and educated decision. For lots of us, we've had little choice.

    If you don't like the circumstances, don't participate. Simple as that.
  9. lebowski

    lebowski

    Messages:
    84
    Likes:
    1
    "Time will tell, but this premature/blind enthusiasm/support for xmrv that are endemic in this site are more likely hamper the progress in finding solution for CFS than it helps"

    is the problem , entusiasm will hamper the progress ,

    or

    people have the hope that u dont ..
  10. Summer

    Summer Senior Member

    Messages:
    175
    Likes:
    0
    Andrea posted this on WPI facebook in chatting to others:

    "yes WPI announced yesterday that proceeds from VIPDx test which are the same tests WPI used to find these results will go to Whittemore Peterson Institute research." Andrea Whittemore Goad
  11. MEG

    MEG Senior Member

    Messages:
    242
    Likes:
    20
    Asheville, NC
    Catch 22

    The way I look at it, it is going to be difficult for clinical trials to be approved without many of us getting tested and found to be "positive" for XMRV. If they don't find XMRV, why would drug companies spend money on something that didn't pan out? It's kind of a catch 22. I happen to believe that WPI and Dr. Lombardi are very sincere and ethical. I will do all that I can to support them.
  12. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

    Messages:
    115
    Likes:
    0
    Conflicts of interest among researchers are worrisome but I am more concerned that the peer reviewers, journal publishers and guardians of public funds don't have a conflict of interest. This is the area that worries me the most.


    This model has existed for a long time. Almost every independent researcher takes out prospective patents on tests and treatments with an eye toward licensing them or building their own business should they pan out. Institutional researchers usually have to give patents and/or profits to their employer. I signed many such agreements back when I was working.

    One example of an independent researcher is Dr Shoemaker:

    Completed Patent Application

    “Methods for treating or inhibiting Sick Building Syndrome, Post-Lyme Syndrome, and/or Chronic Fatigue Syndrome.” Inventors Ritchie Shoemaker MD and H. Kenneth Hudnell, Ph.D.

    PCT Patent application no PCT/US03/04137


    Patents Applications, Provisional

    * PAI-1 and TNF as markers for the inflammatory basis of type II diabetes, obesity and atherosclerosis. US Provisional patent Serial no 60/356,541
    * Use of alpha melanocyte stimulating hormone to treat patients with chronic fatigue syndrome. US Patent Provisional Serial no.: 60/356/539
    * Use of thiazolidinediones as an adjunct to diet in treatment of hyperinsulinemic obesity; importance of the No-Amylose diet. US Patent Provisional Serial no.: 60/356,690
    * Pretreatment of patients with Post-Lyme Syndrome with pioglitazone before use of cholestyramine prevents intensification: Vision, neurotoxins and cytokines. US Patent Provisional Serial no.: 60/333,335


    Peace,
    S
  13. MEG

    MEG Senior Member

    Messages:
    242
    Likes:
    20
    Asheville, NC
    WPI/VIPdx Two thumbs up

    "yes WPI announced yesterday that proceeds from VIPDx test which are the same tests WPI used to find these results will go to Whittemore Peterson Institute research." Andrea Whittemore Goad "

    Good, more money for WPI to keep researching. As someone mentioned above, "what has our federal gov't done for us in the past ten years?"

    I believe the WPI findings, and "Science" are going to be difficult for our government to keep ignoring.

    I keep going back to our blood supply...it is most likely contaminated...how much longer can NIH, CDC and American Red Cross keep this info under their hats?

    I have an aquaintance who has CFS, that is actually going to donate blood on Thursday of this week....she believes the Red Cross who had told her it is OK to donate blood with CFS!!!!! She ignores my trepidation and education. How many others are like her?

    My best to WPI,VIPdx to keep the research and information coming.
  14. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

    Messages:
    115
    Likes:
    0
    I believe this is our one wedge to pry open the government coffers. I mention the blood supply in the first or second sentence of every letter I write. If testing provides some cash flow back to WPI, fine but we need more than that.

    I bet the profit margin on testing is not as good as many would think. This is not some highly automated test like a CBC and I'm sure it requires some special materials that are not currently available "off the shelf". Also the volume wont be that big at first. Many can't afford testing and others are waiting for more information about both XMRV and the tests themselves before committing. Right now we are talking about nickles and dimes compared to the megabucks that are needed.

    Peace,
    S
  15. firbopt1997

    firbopt1997 Guest

    I am not seeing the conflict of interest here... The way I see it Dr Lombardi and WPI are insuring a accrurat test be provided to the community.
    As per my conversation with VIP and WPI, WPI does not own VIP. They are two separate businesses. Dr. Lombardi over saw the assay development of the tests preformed at VIP and VIP licensed the tests from WPI. VIP is a state licensed clinical lab in Nevada and California and is CLIA Certified. I would go with them any day.
  16. Warbler512

    Warbler512

    Messages:
    27
    Likes:
    0
    USA
    Told you So

    Someone posted that NCF disagrees that XMRV is the deal, and without naming names (a near-first for them), called out the involvement of Lombardi with RedLabs as a conflict of interest.

    Stepping back, the post here about the nun is true. Ours is a field stocked with conflicts of "interest," monentary and not. The same people who worked on Canadian Consensus have helped the CDC write their meaningless "CFS" education courses. Vernon just hopped the fence, might be straddling it, who knows. Now, moneywise, if a meaningful CFS/ME grant evaluation board were convened, who would you put there? Someone who knows nothing about CFS/ME? Or Nancy Klimas, who's tied to U. of Miami, or Chris Snell, tied to the Pacific Fatigue Labs? Or Robert Gallo, who's also working closely with a private firm headed by one of CAA's suggested CFSAC candidates? Want to get published in Lancet? They're tied to a Big Pharma exec through the publishing company who owns them.

    Virtually everyone has ties to someone's financial interests if not theirs. To my knowledge, U. of Hawaii hasn't given away the ciguatoxin test. So this ideal of spotless, independent research only goes so far. At its extreme, independence brings us the Teitlebaums of the world. So there's a middle between the extremes that we try to meet; at the same time, we patients have to ask, what's the best for us? It's a tough call.
  17. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

    Messages:
    115
    Likes:
    0
    Yes, no such thing as spotless independent research. That is why we have to have peer review, studies replicated by multiple centers etc. Almost everyone is playing some sort of bet and why not in a field where there has been no funding. If not for the hope of some sort of payoff, very few would spend a whole career working on an "orphaned" illness.

    I was only willing to sign rights to any work related invention(s) to employers because I felt I was being reasonably compensated and I also knew I didn't have deep enough pockets to protect myself in the legal arena if push ever came to shove.

    In the case of XMRV, playing games could be dangerous. This is too high profile right now. Anyone who would even consider stepping over the line for short term profit has to know that they will be hung from the yardarm if anything ever came out.

    Peace,
    S
  18. SeaShel

    SeaShel Senior Member

    Messages:
    111
    Likes:
    0
    AZ
    From WPI's Facebook Page this morning (reiteration)

    Viral Immune Pathology Diagnostics Introduces New Test for XMRV Patients and Clinicians
    -Net proceeds from test dedicated to further WPI research-

    RENO, Nev. The Whittemore Peterson Institute (WPI) has recently published a research study
    revealing the prevalence of XMRV in patients with Myalgic Encephalomyelitis/Chronic Fatigue
    Syndrome, ME/CFS or what has most recently been called, X associated neuro-immune disease,
    (XAND). In response to an overwhelming request for a diagnostic test for XMRV, WPI has temporarily
    agreed to allow Viral Immune Pathology Diagnostics (VIP Dx) to begin offering the identical tests that
    have been extensively validated using the same technology developed by Drs. Lombardi and Mikovits
    and their colleagues as reported in Science.

    VIP Dx is a small state certified laboratory in Reno, Nevada that was formed in response to the
    September 11, 2001 crisis which resulted in the cessation of blood sample shipments between the United
    States and Europe. Faced with the loss of important lab tests impacting patients with neuro-immune
    diseases, the Whittemore family made the decision to support the lab in Reno.

    Our family made it possible for the lab to not only continue delivering diagnostic tests to doctors, but
    also help the WPI bring cutting edge biomarkers of disease to this field of medicine, such as the tests for
    XMRV, said Annette Whittemore, Founder and President of WPI. Tests conducted for XMRV, and
    other tests that support the diagnostic process in this field, will support the continuation of vital work at
    WPI through our donation of all of our net proceeds.

    XMRV test acceptance commenced at VIP Dx this month.
  19. PoetInSF

    PoetInSF Senior Member

    Messages:
    167
    Likes:
    8
    SF
    Yes, likewise I'm not asking you or forcing you to do anything. Nevertheless, this board can use some dissenting opinion, unless you want to turn it into a blind support group for WPI. You don't agree, feel free to rebut or ignore.
  20. kurt

    kurt Senior Member

    Messages:
    1,132
    Likes:
    175
    USA.Earth
    Low profit margins? Maybe that is what they want you to think. I don't know about all the testing but my wife is a medical technologist and I know people involved in genetic testing, and the cost to the labs for most of these tests is peanuts. Just look online, some PCR tests are on the market around $200 in cost. I found one PCR for HIV for only $145 (http://www.aids.org/atn/a-060-07.html). If tests are run at CLIA certified labs they will cost a little more. But if the tests are run at research facilities they may literally cost only a few dollars, plus any tech time, which is minimal. And many of these are automated and can be run overnight so there is little labor cost.

    So why are the prices seemingly high? I don't know but the current tests being offered may be priced to help re-capture research costs, or as an attempt to fund-raise. That is capitalism, and the reason we need competition, even in something as seemingly charitable as testing for CFS. Hopefully WPI will really license their algorithms, or other labs will invent even better methods of XMRV testing and improve on what WPI has accomplished. And hopefully WPI will not try to block progress in this illness in the name of protecting their 'intellectual property', which happens so often in medical research. We need a whole industry of serious CFS research to solve this, more than WPI by themselves with their captive collaborators (such as VIP Dx). Who know where the next discovery or treatment will come from.

    Not convinced? Here is the reality, if the goal of WPI or any other XMRV testing facility were really to help patients and get as much data out there quickly as possible we would see much, much lower prices out there right now.

    Maybe WPI and others will come out with low-cost testing once they realize how poor we are, and many with no insurance. They will never earn big bucks from CFS patients, they need to go after grants to fund their center.

    But for now they do appear to be playing the typical high-stakes medical research game that focuses on future payoff. Consider that due to the Science article, billions and billions of $$ are about to be earned on the backs of PWC, through retroviral drug sales. The ball is already rolling, this is very likely to to happen, and the interested players are already on the sidelines watching us, be certain of that.

    Even if XMRV turns out to not be causal for CFS, that will take many years to establish, it is harder to prove something false than to create a hypothesis that might be true (which is all WPI has done). So prepare yourselves, the train is already moving.

    Maybe some good will come of all this, and XMRV will really be causal and anti-retrovirals will help us. I think that scenario is low-odds but possible.

    However, the more likely scenario in my view is that XMRV turns out to be just another co-factor and retrovirals will help only a little, or only for a short time, or maybe eventually harm us through the side-effects. But those who will make the billions in profits really will not worry about that, our suffering is their accepted risk to produce high profit margins.

    OK, there you have it PoetINSF - a dissenting opinion of sorts, or at least a real-world viewpoint. I do appreciate what Dr Mikovitz discovered and am greatful for WPI's support of her idea. WPI does have a great and compelling presentation. But the evidence does suggest some conflicting interests and business as usual for medical research. That usually translates to much slower progress for the waiting patients. I guess that is what we should expect in the competitive CFS funding world. Maybe eventually when the government and medical communities really accept the truth of CFS funding will loosen and people like WPI will have an easier time being humanitarian.

See more popular forum discussions.

Share This Page