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Trying to reach WPI with questions/how to get through?

Discussion in 'XMRV Research and Replication Studies' started by FernRhizome, Jan 24, 2010.

  1. FernRhizome

    FernRhizome Senior Member

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    Hi Folks:
    I have tried to call WPI a number of times, and e-mailed over the past few months and can never get through to anyone or have my calls returned. Has anyone else had better luck? I know that they are inundated and so I've been very patient, but I am trying to reach them for a couple of reasons:

    1) to make sure my earlier donations were grouped together so I became a "Friend" and does anyone know if they've yet sent out a newsletter or e-mail to Friends of WPI?

    2) I have another donation question I need to talk with them about.

    3) I offered to donate bone, bone marrow, and muscle tissue samples but have had no response

    4) I signed up very early on for their patient registry. Has anyone been contacted yet to be included in any research testing?

    5) I also ordered a test kit in early December which hasn't shown up (that's less important at the moment)

    Just curious if there is a way to call and get a live person! And if any Friend mailings have gone out yet or if the patient registry information has started to be tapped yet for research trials. ~FernRhizome

    Also, while I am at it, does anyone know how to delete an old thread on this forum once it's outdated?
  2. Andrew

    Andrew Senior Member

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    I had trouble with this too. There is a contact person and email listed on your paypal receipt. If you contact her she will make sure you get sent the pin you were supposed to receive. They also sent a one page flyer (not worth having) and told me it was the newsletter. And no emails. I have a feeling the newsletter and emails haven't started yet. I also have a feeling the person who is supposed to be taking care of the "friends" thing is not doing his job.

    The same contact person can probably help you.

    I haven't been contacted, and I signed up.

    Did you order this from VIPDX? If you have not received it, you should contact them, not WPI.
  3. Kati

    Kati Patient in training

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    I also volunteered for the patient registry. No calls as of yet. I suspect they will either do a volunteer call for clinical trials or ask people according to the eligibility requirements. I am certain they have been very busy with new buildings, research, expnsion of the Institute, responding to researchers enquiries, looking for more investors, etc...

    Dr Judy mentioned in her recent talk that she was happy to take calls or e-mails from patients for questions... judym@wpinstitute.org.
  4. Robin

    Robin Guest

    An admin has to do it. Post a link here and someone will get to it eventually. ;)
  5. wornout

    wornout Guest

    The others have good suggestions. They were not prepared for the response they got. I sent several emails back in OCtober and they responded to all of them. Good Luck
  6. Just wondering if it might be a good idea to try and limit communications with WPI as far as possible at this crucial time.

    The reason is that I would hate to think that their research got held up because funds were diverted away from it to fund an extra admin post.

    Rachel xx
  7. FernRhizome

    FernRhizome Senior Member

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    Thanks for everyone's input on this! I agree Rachel about limiting communications which is why I've let all these things slide for more than a month....but do need to address a few of them. Everyone had great help though! I will check my WPI receipt and try and get the Friend status confirmed, and thanks for reminding me that the kit comes from VIP not WPI! Nothing like CFIDS brain fog. Hopefully I'll next figure out how to delete this thread!

    By the way can anyone verify which is the correct e-mail for Judy Mikovits: is it lower case or upper case for the J and the M? I've seen it both ways. Has anyone had a reply from her and thus can verify this? judym@wpinstitute.org or is it JudyM@wpinstitute.org

    Many thanks for all your helpful responses....~FernRhizome

    PS I should have said "pooted" by FernRhizome...(!)
  8. Ahh, I see, thanks for clarifying, Fern.

    It should make no difference whether you use capitals or not in her email by the way.
  9. FernRhizome

    FernRhizome Senior Member

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    Thanks for letting me now Judy's e-mail address can be upper or lower case....and I did contact WPI using the e-mail on my donation receipt and just heard back from Debi at WPI. She wrote the following, very understandable response:

    We have been overwhelmed with the response following the publication of the recent breakthrough in our research - this is a good thing and a bad thing. We were not staffed for such a huge influx of mail and we ran out of pins as well. We have recently gotten a new shipment in, and hope to regroup and catch up with all of the kind and generous people who have made donations.

    Thanks for everyone's great suggestons! I may delete this thread in a few days if there's no reason to keep it? Best wishes, FernRhizome
  10. Esther12

    Esther12 Senior Member

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    As a way of limiting our e-mails, we should try to post whatever replies we recieve for others to read here (so long as it's not too personal).
  11. Esther12 - that is genius.

    Rachel xx
  12. FernRhizome

    FernRhizome Senior Member

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    Someone who knows WPI well just reminded me that "WPI is basically one person," really it's just Annette. And how could one person possibly handle being swamped by world-wide publicity and contact? I think that explains everything! ~FernRhizome
  13. kat0465

    kat0465 Senior Member

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    i recieved a letter in the mail from them yesterday,it was just a thank you for a donation i made over a month ago.whats the deal with the Pin number thing??
    i also filled out thier questionaire but have yet to hear anything.
    they can have my blood, tissue samples whatever they want! i just wish they would call.But i know they are swamped!
    Kat
  14. SeaShel

    SeaShel Senior Member

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    kat0465 - the butterfly pin is the gift for donating enough to be considered a Friend of WPI.

    and I would love an update on their site with when they will start accepting appointments. I imagine that in addition to being swamped, they are at the whim of contractors and construction issues that never seem to stay on schedule.

    patience patience patience - think I need to write it 100 times a day.

    Shelley
  15. kat0465

    kat0465 Senior Member

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    i think you have to donate at least 60.00 to get a pin, just couldnt afford it. Maybe by spring.i too am waiting for the time they take appts:victory: It's hard to be patient, but like you i know they are overwhelmed with questions, Poeple, Dr's, Sientists.
    so im trying to lay off for a while. ( I Still Peek at thier website everyday!)lol.
    Kat

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