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WPI adds "XMRV Research" Tab/ Research Form

Discussion in 'XMRV Research and Replication Studies' started by _Kim_, Nov 15, 2009.

  1. _Kim_

    _Kim_ Guest

    WPI Research Questionnaire is now online!

    WPI Volunteer Questionnaire

    All information you provide is personal and confidential.

    Personal Information Last Name: First Name: Middle Initial:

    Male Female

    Date of Birth: / / (enter date as: MM/DD/YYYY)

    Street Address:
    City: State: Zip Code:
    Country:

    Home Phone: (enter phone as: XXX XXX-XXXX)
    Work Phone: (enter phone as: XXX XXX-XXXX)
    Cell Phone: (enter phone as: XXX XXX-XXXX)
    Email:

    Physician Information Last Name: First Name: Middle Initial:
    National Provider Identifier (NPI):
    Street Address:
    City: State: Zip Code:
    Country:

    Office Phone: (enter phone as: XXX XXX-XXXX)
    FAX: (enter FAX as: XXX XXX-XXXX)
    Email:

    Medical History ⇒ Primary Diagnosis (please check all that apply)
    ME/CFS
    Fibromyalgia
    Multiple Sclerosis
    Encephalopathy
    Lupus or other auto-immune disease
    Other, please describe:
    Date of Onset: / / (enter date as: MM/DD/YYYY)
    Date of Diagnosis: / / (enter date as: MM/DD/YYYY)

    ⇒ Initial Symptoms (please check all that apply)
    Headache
    Sore throat
    Painful muscles
    Painful joints
    Fever
    Rash
    Gastrointestional disorders
    Nerve pain
    Disturbed balance
    Profound weakness
    Difficulty with short term memory
    Difficulty with mental processing
    Other, please describe:


    ⇒ Current Symptoms
    Are you currently having any symptoms? Yes No
    If you are currently having symptoms, please list below:


    ⇒ Current Medication
    Are you currently taking any medication? Yes No
    If you are currently taking medication, please list below:


    ⇒ Co-Infections
    Do you have any co-infections? Yes No
    If you have co-infections, please list them below:


    ⇒ Secondary Diagnosis (please check all that apply)
    Asthma Cancer, please specify type:
    Cardiovascular Disease Crohn's Disease
    Diabetes Inflammatory Bowel Disease
    Neurological Disease (Alzheimer's, Parkinson's),
    please specify type:
    Pulmonary Disease

    ⇒ Surgeries
    Have you ever had any surgeries? Yes No
    If you have had any surgeries, please list them below:


    ⇒ Blood Transfusions
    Have you ever had a blood transfusion? Yes No

    ⇒ Adverse reactions to vaccinations
    Have you ever had an adverse reaction to a vaccination? Yes No

    ⇒ Other complicating factors
    Do you have any other complicating factors? Yes No
    If you have had any other complicating factors, please list them below:

    Family Members Health ⇒ Do any immediate family members have a neuro-immune or related disease such as prostate cancer, autism, etc.?
    Yes No
    Mother, please specify diseases and/or conditions:
    Father, please specify diseases and/or conditions:
    Brothers, please specify diseases and/or conditions:
    Sisters, please specify diseases and/or conditions:

    ⇒ Do any children have health issues?
    Yes No
    Child 1, please specify diseases and/or conditions:
    Child 2, please specify diseases and/or conditions:
    Child 3, please specify diseases and/or conditions:
    Child 4, please specify diseases and/or conditions:
    Child 5, please specify diseases and/or conditions:

    ⇒ Would you like to be a part of the WPI research program by donating your blood sample to the WPI repository?
    Yes No

    Would you like to make a donation to support the WPI Research Program? Please see the "How to Help" tab on our homepage.

    Thank you!
     
  2. _Kim_

    _Kim_ Guest

    A new tab -XMRV Research- has been added to the Whittemore Petersen Institute website. I've included some excerpts from some of the sub-pages, but it is worth reading in its entirety.

    • Overview
    • Research & Trials
    • Questions & Answers
     
  3. _Kim_

    _Kim_ Guest

  4. George

    George Guest

    Thank You!

    You rock Kim. Thank you so much for posting this. STAMPEDDDDDDD!:D:D:D:D
     
  5. _Kim_

    _Kim_ Guest

    Auto reply

    Here is what I was emailed after I submitted the questionnaire:

     
  6. George

    George Guest

    They get it, they really, really get it!

    Even their robo replies make me feel heard and counted. (snif, snif):eek:
     
  7. annunziata

    annunziata Senior Member

    Messages:
    111
    Likes:
    2
    Hudson Valley
    I've been waiting for 23 years for someone to ask me these questions.

    - Amy
     
  8. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    This is the part I hadn't seen before: 95% of FMS patients. I hadn't seen that yet. I saw that they had found 12 out of 20 FMS patients had XMRV. Did they run the antibody test on them later like they did us?

    Wo.

    tee
     
  9. greybeh

    greybeh Guest

    My thoughts, too. Found this to be a bit confusing and would like specifics on fibro patients (I have fibro - my mother is diagnosed with fibro/CFS)
     
  10. Jenny

    Jenny Senior Member

    Messages:
    1,233
    Likes:
    200
    London
    "We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested."

    This statement doesn't make sense grammatically. I suspect they meant what they said originally - something like:

    We have detected the retroviral infection in 95% or more of a group of 200 patients who had been diagnosed with either ME/CFS, Fibro, or Atypical MS.

    Jenny
     
  11. LaurelB

    LaurelB Senior Member

    Messages:
    126
    Likes:
    9
    I submitted my survey but did not get a confirmation email in return. Did everyone else get one? Now I wonder if I need to do it again. :confused:

    Also, my doctor is a naturopath and therefore does not have an NPI. Hopefully that's not a problem.

    Thanks!
     
  12. anne

    anne Guest

    This one cracks me up. 99% of doctors will give a bewildered, "HAWABABA?"
     
  13. garcia

    garcia Aristocrat Extraordinaire

    Messages:
    936
    Likes:
    104
    London, UK
    Grammatically it does make sense. Its just that some people don't know how to parse it logically (there is really only one way of logically interpreting it). As you said it means all patients combined (200 of them) with various conditions, 95% tested positive (in some form or other) for XMRV. Presumably the bulk of these are ME/CFS at 99% +ve for XMRV, then the various other conditions at lower percentages. As such it says absolutely nothing about the rates in Fibro.
     
  14. annunziata

    annunziata Senior Member

    Messages:
    111
    Likes:
    2
    Hudson Valley
    No confirmation

    Hey Laurel, I sent in my questionnaire last night and there has been no confirming e-mail. I've been wondering foggily if I might have done something wrong.

    Amy
     
  15. jackie

    jackie Senior Member

    Messages:
    591
    Likes:
    5
    Anne! I'm "supposed" to be "BENCHING" myself?!

    But your comment about Docs reactions to XMRV/Pregnancy SO cracked ME up!

    (Like the NEUROLOGIST I saw that asked me to SPELL "Myalgic Encephalomyelitis" for him!):eek:

    By the way...I just filled out the research Questionnaire.

    I'm hoping when they read the amount of Acyclovir I've taken for 3.5 years - they MIGHT be interested. I keep offering it and offering it - but no takers!?

    Sometimes I feel like climbing on my roof and screaming to the world "ISN'T ANYBODY interested in my BLOOD!!!???":rolleyes::eek:

    Backing away from the Laptop........jackie;)
     
  16. Daisymay

    Daisymay Senior Member

    Messages:
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    Likes:
    274
    Do you have to live in the US?

    Please excuse me being thick here, but do the WPI only want people living in the US who could go to ythe WPI etc to fill in this questionaire or are they wanting data from people across the world, and from those they will only use some people in their physical research?
    BW,
    Daisymay
     
  17. Christopher

    Christopher Senior Member

    Messages:
    482
    Likes:
    187
    Pennsylvania
    One of the fields in the form asks for a country, so they are set up for taking responses internationally, I would gather.
     
  18. froufox

    froufox Senior Member

    Messages:
    398
    Likes:
    66
    Hi Laurel & Amy,

    I filled the questionnaire out last night and received a confirmation email straightaway. I agree it made me feel really validated too compared to most other meaningless questionnaires I've filled out over the yrs! It gave me a comforting feeling doing this one :) Thnx for posting Kim.
     
  19. jackie

    jackie Senior Member

    Messages:
    591
    Likes:
    5
    Hi Guys! (Laurel, Amy, George, Kim) I filled out the Questionnaire (last night) and didn't even receive a robo answer/e-mail.

    I can't believe what I entered for "NPI#"....my insurance company name!!??:eek::eek::eek: oh pooh!:(

    Thanks Kim, for the link - I just looked up the "real" NPI# for my doctor.

    Now what do I do?:confused:

    jackie:eek:
     
  20. _Kim_

    _Kim_ Guest

    Someone asked Andrea a similar question and she said (paraphrasing) that WPI was created to help people all around the world with neuro-immune diseases. Everyone is invited to participate.
     

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