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Letter from Annette Whittemore, "Our Responsibility", IP removed from WPI, 11/11/11

Discussion in 'General ME/CFS News' started by justinreilly, Nov 11, 2011.

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  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    http://wingsofhopefornid.blogspot.com/2011/11/our-responsibility.html

    Wings of Hope blog
    "Our Responsibility"
    Friday, November 11, 2011

    Dear Friends and Patients:

    It is important for you to know that WPI is doing all that it can to protect the institutes resources. Several laboratory notebooks, a personal computer and flash drives containing WPI research data and other information disappeared from WPIs research offices, on or near, September 29, 2011. These valuable materials represent the hard work and sacrifice of many people and were paid for by WPI. Your donations were part of the financial resources that supported this research. The theft or loss of these research materials robs us all.

    As the guardian of this property, WPI immediately asked to have the materials returned, but to no avail. We have waited until now to tell you this news in hopes that the individual or individuals responsible for this loss would realize the gravity of the situation and return WPIs property in a timely manner. WPI has previously sent a demand letter to the one person responsible for, and with access to, these locked materials and various electronic files. Despite this request, our valuable materials have still not been returned.

    Because of the lack of response, WPI has been forced to take legal action demanding the return of our property and has reported the incident to the police and other authorities. WPI received notice this week that a temporary restraining order has been granted to keep our materials from being altered or destroyed, and requiring they be delivered to WPI immediately. We hope that this matter is quickly resolved and that further costly litigation is avoided.

    WPI is a non-profit charitable organization, and as such, the work we do is held in trust for the larger community of patients and others it is our mission to help. That means the research equipment, the government and private funds we have been fortunate enough to obtain, and the WPI facility serve a larger community and not any one person. That is why we have our researchers sign a contract confirming the WPI's ownership of all data generated in our research labs as a condition of their employment.

    While we hate to spend time and resources on something like this, the costs of legal action pale in comparison to the years of expenses incurred for researcher salaries, equipment, and supplies to generate this valuable work. We have oversight from, and obligations to, the various public and private grant funders who have made this work possible. And we take both these obligations and our public trust very seriously. Our research results must be reported, published, made available to physicians, or otherwise used to benefit all patients who suffer from neuro-immune diseases.

    We hope that by keeping you informed of these facts, you will understand how difficult and painful this entire process continues to be for everyone at WPI.

    Sincerely,
    Annette Whittemore
    President
    Whittemore Peterson Institute
  2. taniaaust1

    taniaaust1 Senior Member

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    Oh all I can say is WOW.

    The ME story would all make such a great movie with all its dramas over the years. Someone now has more then damaged their carer.

    Im so glad we heard what has happened when Annette Whittemore who is one of us. If I'd heard that from another I would of left not knowing what to believe.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    If WPI really believes this data is theirs then they have to file suit. Judy assured patients that the grant is hers, not WPIs, but NIH has confirmed that the grant belongs with WPI, if they can find a competent person to do the study and NIH approves (I'm not saying that they have someone competent to do this). Also, I would be shocked if Judy's contract didn't say that all IP belongs to WPI since this is standard.

    It seems to me that WPI should have safeguarded the data better by making automated backups to an offsite or cloud storage.

    I guess I have to say once again, I would need to see all the evidence before concluding anything.
  4. taniaaust1

    taniaaust1 Senior Member

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    Sounds like a massive misunderstanding has gone on.. with the sides truely believing its theirs.
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Lilly Meehan posted the following letter from her to WPI on mecfsforums:

  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Lilly Meehan also posted this letter from Lois Hart to WPI's lawyer.

  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    This is horrible. I tend to believe Judy, though I can't really say for sure of course what happened. If Judy doesn't have a copy of these data then all that work will have to be redone! One has to ask why WPI didn't safeguard these data better, by say backing them up offsite or in "the cloud." What a disaster all around.
  8. Andrew

    Andrew Senior Member

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    Honestly, I don't know what Whittemore went public with this. It would make more sense to just take whatever action she feels she needs to take. Also, I can think of a scenario where the stuff disappeared and it is not Mikovits or Whittemore. But why stir things up more. I hope this whole thing doesn't become a firestorm.
  9. Enid

    Enid Senior Member

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    Difficult to see what is going on from across the pond justin - just hope for quick resolution so everyone can get back to their research. We need it all. What a sad turn of events. Personally we feel all the research done (positive or negative) was vital. So if XMRV is a contaminant (not the cause) related MLVs are found - we don't see any reason for anybody kicking up a stink - that's just the way science goes. A court case over notebooks sounds a disaster.
  10. ukme

    ukme Senior Member

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    Well I have to say, having read all this, that I tend to believe Dr M. After all she wants the stuff back so she can continue her research, and they say it's lost. How convenient. I dont think that Annette Whittmore comes out of this very well.
    currer likes this.
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I tend to believe Dr. M over anyone else. But I have a hard time believing that Annette would lie about this either. Which would leave the possibilities of a disgruntled employee and/or the nefarious forces of the likes of Wessely & co., CDC or NIH stealing it.
    taniaaust1 likes this.
  12. Enid

    Enid Senior Member

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    Yes I agree justin - whoever it's certainly disgruntled. Am sure no-one regrets contributing to the large sums needed for all the research done (well we do not) so can't understand why that was brought in. And as long as research continues for us we will continue to do so. But please leave JM alone to continue hers.

    (Nefarious forces/anger/rivalries at work here - who knows - just such a pity really).
  13. leela

    leela Slow But Hopeful

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    I too find it hard to imagine either Judy or Annette doing anything so completely nefarious.
    However, I also find it impossible to believe the data was only available as one hard copy.
    This seems highly unlikely, and so I think I see some other kind of shenanigans in play here.
  14. maryb

    maryb iherb code TAK122

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    I think its a shocking state of affairs that the WPI have made these thinly veiled allegations and into the public domain as well, Dr Mikovits is an honest, professional researcher with high standards and of the utmost integrity, shame on them.
    currer likes this.
  15. Desdinova

    Desdinova Senior Member

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    Wow this is discerning to say the least. I have to say that I find it somewhat exasperating that WPI didn't insist that everything be backed up to a secure drive(s) for redundancy. And it seems to me that if the offical documents involving the grant mention WPI as the recipient and not Judy that it's an open and shut case as to who gets the grant.
  16. currer

    currer Senior Member

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    This development is the biggest endorsement of Dr Mikovits research to date.

    Such things do not happen except where research has value or poses a threat to someone.
    jace likes this.
  17. snowathlete

    snowathlete

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    [ignoring Angela's post as if it didnt exist]

    I think your right, there must be some value to it, else why bother? They are clearly fighting over something that Mits must have been centrally involved in, i wonder what that is.
    Problem is, if both parties dig in, we might not find out for years because the legal process for this sort of thing tends to run and run and run.
    I can guess all we can do is hope they reach some kind of comprimise, and then maybe we will hear what its all about.
  18. Tony Mach

    Tony Mach Show me the evidence.

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    Well, I tend not to believe what Judy says (and I'm not saying that I believe what the WPI says). Yes, truely, this is a horrible disaster. The science paper pushed our field along against all resistance (and for that I am thankful), even now that it looks more and more like pseudoscience. Alas, looking to the future, I find it doubtful whether the WPI will contribute much in the near future (I remain sceptical, but open-minded) and I am sure that Judy will not contribute anything meaningful (as it is doubtful that she contributed anything scientific).

    (And as a side note: I worked in companies which developed software and hardware, which had equally shitty back-up strategies. Heck, a drive-crash on my private computer once lost me a lot of personal data. Proper back-up is something that is not thought of, especially in small outfits. One does not think what fire can do until your house burns down...).
  19. Tony Mach

    Tony Mach Show me the evidence.

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    Well, this only shows that the people at the WPI still believe that XMRV is a human pathogen and not the contamination that it actually is.

    Some people think a toast with the (supposedly) face of Jesus is valuable. Just because some people think something is valuable does not make valuable or even helpful.
  20. markmc20001

    markmc20001 Guest

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    Funny. That thought ran thrugh my head too. Better check with the CDC, CAA, one snarky blogger, or the Chicago Tribune to see if they stole the notebooks! They seem to be the ones with the least credibility through this whole process.
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