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An unacceptable silence

Discussion in 'Action Alerts and Advocacy' started by In Vitro Infidelium, Sep 21, 2012.

  1. In Vitro Infidelium

    In Vitro Infidelium Guest

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    It has now been three days since the Lipkin study reported, yet not a single acknowledgement, let alone comprehensive statement, has been made by the Whittemore Peterson Institute or its Director of Research, Dr Vincent Lombardi. To date the only notable published research carried out at the WPI was the Lombardi et al 2009 study into the relationship of XMRV to M.E/CFS, Dr Lombardi remains the only author of that article not to have accepted the retraction of the article by Science magazine, or (via the Lipkin study) to have acknowledged that the study was flawed.

    On the back of what is now (with the possible exception of Dr Lombardi) universally accepted as flawed science, the WPI licensed the sale of tests for XMRV, tests which were sold by a laboratory overseen by Dr Lombardi. It is no longer a matter of scientific debate, but a matter of principle that demands that both the WPI and Dr Lombardi make clear statements about how the science has progressed and about the decisions that underlay the licensing and marketing of tests which could never have been of benefit to patients.

    To quote Charles Shepherd of the MEA:
    “There should now be an apology –[ firstly] from the laboratories who persuaded people to spend large sums of money on useless XMRV tests: ….”

    Whether the two companies (VIPdx and also R.E.D Laboratories ‘Belgium’) which were licensed by the WPI to offer XMRV testing, will meet their moral obligations is perhaps in doubt but as the issuer of the licences and as a recipient of both Federal funding and public donation, WPI has an unavoidable responsibility to acknowledge, to explain, and to apologise for, its ill judged attempt to monetise the (at the time) uncertain science of XMRV and M.E/CFS.

    IVI
     
    leela, Firestormm and jspotila like this.
  2. clive powney

    clive powney Senior Member

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    coventry
    Is anyone here trying to get their money back from WPI? I was one of the very original 14 who took the test back in december 2009. My results came back negative and the WPI emailed me and told me there had been a problem with the negative results and they would retest my sample (when they could fit it in). This to me is an admission that their tests were not up to scratch in the early days. They NEVER actually retested my sample so therefore in my opinion they have never given me the test that I paid for let alone a test that was useless anyway.
     
  3. taniaaust1

    taniaaust1 Senior Member

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    I really wish people could let it go and move on. ..but I can see how it may help some emotionally to get an appology over the tests turning out to not be valid and contamination. (maybe WPI dont wish to do a public appology due to legal reasons?). I do hope they do do an offical appology for making a mistake just to give some people peace.

    clive.. I cant see how you can ask for money back... everyone knew that XMRV wasnt properly proven and that the tests didnt have any offical approval yet and hence was always a chance they were flawed. Everyone knew science was still being done in that area and hence it was always risky trusting the tests. They were trying to do us all a favour by offering tests for something they believed in and which "could" of turned out to be correct. Nothing was validated and everyone knew it.

    Being "one of the original 14" you must of known the test was new and it was a risk and that the test wasnt "official".
     
    beaker likes this.
  4. clive powney

    clive powney Senior Member

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    I did understandf that there was a risk. But I didn't even get the flawed test - at their admittance they said they needed to retest as their original one had problems. They continued to take peoples money for over 18 months after my test and I kept contacting them to have my blood retested. They said they would but never did. If you applied this to ANY product (which in effect this is - just a product for sale) on the market - I didn't get what I asked for even if it was flawed - and they addmitted this by saying they had to retest - I would never have known unless they had pointed it out!
     
    leela likes this.
  5. taniaaust1

    taniaaust1 Senior Member

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    Seems you have more then one grounds then to want an appology from them. That would peeve anyone off. Sorry you went throu all that. I guess you would have grounds in your case to get your money back as a normal consumer not getting what was even promised.

    (over where I are in Australia we have "consumer affairs office" which can chase up things like this.. do you have something similar to contact where you are, to try to get your money back..)
     
  6. clive powney

    clive powney Senior Member

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    problem is i am not sure of how to do this with a company that does not reside in the UK. If it were a UK company it would be reasonably easy!
     
    taniaaust1 likes this.
  7. taniaaust1

    taniaaust1 Senior Member

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    If it was me.. Id be asking one of the Americans here in that state where the tests were done.. to tell me what their consumer affairs place is and then I'd look them up online and ring them (unless they take emails but the one in my own country one needs to phone or write too), they probably wouldnt mind you being in another country as the business is under their juristiction.
     
  8. alex3619

    alex3619 Senior Member

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    IVI you are right in saying some kind of response from WPI is required. There is more I might say, but I want to be careful - there are complicated legal issues involved in all this. Bye, Alex
     
    leela likes this.
  9. Firestormm

    Firestormm Guest

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    The lack of any comment whatsoever from WPI, Annette and Vincent especially, is quite astounding. An apology may indeed be asking for too much (though they should as should De Meirlier in Belgium) and VIPdx (although Lombardi was I believe involved with them too) and it isn't clear to me who is responsibile for them now or even if they are still trading.

    I did enquire on their FB page why they had not commented but have had no reply (though my comment remains). It beggars belief. My feeling about making that 'test' commercially available and the whole processing of it - are by now well known I suppose - and whilst it might be hoped that those patients ordering a test 'knew it was experimental' that cannot be used as an excuse particularly by a charity-style, 'care for you' organisation.

    This sort of testing ability, the flogging of unapproved, unlikely to work, experimental at best, blood-related, 'tests', requiring payment and the involvement of a physician for the purposes only of 'interpretation' - is to me a case of exploitation and ought to be condemned. It is a fault of the law that such a thing is permitted to exist let alone be simply withdrawn with what appears to amount to no more than a simple shrugging of the shoulders.

    Whilst it did leave a nasty taste in my mouth to witness the applause afforded Mikovits at the conference, and the aplomb for 'courage' = at least she did step up to the plate in the end. It is beyond time now that WPI and VIPdx did the same if only to similarly admit they were wrong - if an apology proves too much for them and their lawyers.

    This debacle has dominated the 'community' for three years now and WPI/VIPdx and their employees benefitted financially from the speculation and hype that they themselves inspired. It is wrong to simply let it go. There was harm and there was foul.

    Fire.
     
    Aquila likes this.
  10. In Vitro Infidelium

    In Vitro Infidelium Guest

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    The problem with "complicated legal issues" is that these can become a cover for never acknowledging a problem, without any legal process ever leading to a resolution. Whatever difficulties WPI faces - that should not prevent M.E/CFS affected people from having an expectation that WPI and Dr Lombardi will make a clear and timely response to the Lipkin study. Failure to provide that response must stand as an unaddressed question about the integity of the WPI as a research institute able to provide a meaningful contribution to the scientific investigation of M.E/CFS.

    IVI
     
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  11. Mula

    Mula Senior Member

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    The WPI and their licensee, REDLABS, should be subjected to a criminal investigation. In the United States laboratories may develop test and sell tests, but these two parties have claimed that theirs for XMRV were clinically validated, and they are liable for that. This is not related to research testing, so it would have nothing to do with their Director of Research at that time, Dr Mikovits. Dr Lombardi was given sole responsibility for ensuring validation was to the standard claimed. This would have little bearing on matters relating to the supportive and vague results from the Lipkin paper.
     
    GracieJ likes this.

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