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: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Restarted VIP Dx/WPI Combined PCR/Serology Poll

Discussion in 'XMRV Testing, Treatment and Transmission' started by Mark, Nov 23, 2010.

?

I Have Taken Both the PCR/Culture Tests From VIP Dx Labs; My Results Were....

  1. # I have severe ME/CFS: I tested positive to both the PCR and the Culture tests

    0 vote(s)
    0.0%
  2. # I have moderate to severe ME/CFS: I tested positive to both the PCR and the Culture tests

    0 vote(s)
    0.0%
  3. # I have mild to moderate ME/CFS: I tested positive to both the PCR and the Culture teststhis

    1 vote(s)
    50.0%
  4. # I have severe ME/CFS: I tested positive to the Culture test only

    0 vote(s)
    0.0%
  5. # I have moderate to severe ME/CFS: I tested positive to the Culture test only

    1 vote(s)
    50.0%
  6. # I have mild to moderate ME/CFS: I tested positive to the Culture test only

    0 vote(s)
    0.0%
  7. # I have severe ME/CFS: I tested negative to both the PCR and the Culture tests

    0 vote(s)
    0.0%
  8. # I have moderate to severe ME/CFS: I tested negative to both the PCR and the Culture tests

    0 vote(s)
    0.0%
  9. # I have mild to moderate ME/CFS: I tested negative to both the PCR and the Culture tests

    0 vote(s)
    0.0%
  1. Mark

    Mark Acting CEO

    Messages:
    4,513
    Likes:
    1,929
    Sofa, UK
    This Poll is restarted from the previous poll on this subject:
    http://www.forums.aboutmecfs.org/sh...Culture-Poll-for-ACTIVE-and-LATENT-Infections

    I don't really understand why it's restarted, and I don't really get the details of what's required here, so I hope this is OK - just doing as I'm asked...

    Here are the original instructions...

    This poll is for people who have taken BOTH the PCR and Culture tests for XMRV from VIPdx.

    • The PCR test looks for an active infection: XMRV is in the bloodstream looking for new cells to infect.
    • The Culture test looks for a latent infection: XMRV is present in the cells but not in the bloodstream.

    We'll try and chart whether illness level effects ones potential for testing positive; i.e. will severely ill patients be more likely to test positive than moderately ill patients? To get a grasp on that this poll will assess illness level relative to disability on three levels; severely ill, moderate to severe, mild to moderate. Disability levels aren't perfect but they're a start. (Unfortunately because the poll is restricted to 10 questions, we can't assess how people with 'mild' ME/CFS fared).

    The Disability scale is from 'The Doctor's Guide to Chronic Fatigue Syndrome', by David S Bell, pages 122-123.

    These polls are completely private; neither I nor anyone else can determine how anyone voted. To take the poll simply determine your scale of disability and then use it to answer the poll question.

    Dr. BELL'S CFS DISABILITY SCALE

    Healthy

    • 100 = No symptoms at rest. No symptoms with exercise; normal overall
      activity level; able to work full-time without difficulty.

    MILD

    • 90 = No symptoms at rest; mild symptoms with activity; normal overall
      activity level; able to work full-time without difficulty.
    • 80 = Mild symptoms at rest, symptoms worsened by exertion; minimal
      activity restriction noted for activities requiring exertion only; able
      to work full-time with difficulty in jobs requiring exertion.

    MILD TO MODERATE

    • 70 = Mild symptoms at rest; some daily activity limitation clearly noted.
      Overall functioning close to 90% of expected except for activities
      requiring exertion. Able to work full-time with difficulty.
    • 60 = Mild to moderate symptoms at rest; daily activity limitation clearly
      noted. Overall functioning 70%-90%. Unable to work full-time in
      jobs requiring physical labor, but able to work full-time in light
      activities if hours flexible.

    MODERATE TO SEVERE
    • 50 = Moderate symptoms at rest; moderate to severe symptoms with
      exercise or activity; overall activity level reduced to 70% of
      expected. Unable to perform strenuous duties, but able to perform
      light duty or desk work 4-5 hours a day
      , but requires rest periods.
    • 40 = Moderate symptoms at rest. Moderate to severe symptoms with
      exercise or activity; overall activity level reduced to 50%-70% of
      expected. Not confined to house. Unable to perform strenuous
      duties; able to perform light duty or desk work 3-4 hours a day, but
      requires rest periods.
    • 30 = Moderate to severe symptoms at rest. Severe symptoms with any
      exercise; overall activity level reduced to 50% of expected. Usually
      confined to house. Unable to perform any strenuous tasks. Able to
      perform desk work 2-3 hours a day
      , but requires rest periods.

    SEVERE

    • 20 = Moderate to severe symptoms at rest. Severe symptoms with any
      exercise; overall activity level reduced to 30%-50% of expected.
      Unable to leave house except rarely; confined to bed most of day;
      unable to concentrate for more than 1 hour a day.
    • 10 = Severe symptoms at rest; bedridden the majority of the time.
      No travel outside of the house. Marked cognitive symptoms preventing
      concentration.
    • 0 = Severe symptoms on a continuous basis; bedridden constantly;
      unable to care for self.
  2. Mark

    Mark Acting CEO

    Messages:
    4,513
    Likes:
    1,929
    Sofa, UK
    How to Post Polls

    I don't know what the difficulty was for people who wanted this poll but didn't know how to post it themselves, but here are some general instructions for creating polls - it's very simple:

    - Click "forum" on the buttons at the top of the page
    - Click on the "XMRV Testing, Treatment and Transmission" forum
    - Click "Post New Thread"

    (just as you would create any other new thread)

    Then: the poll option is in the "Additional Options" a little further down the page: tick the box for "Post a Poll", choose the number of options in the poll, then click "Submit New Thread" and you'll go through to the page for defining those options. Enter the text for the question and the answers, and click to submit it (or preview first to check).

    The only mistake I've seen anybody make with this is to tick the box to "make poll public". That makes it so everybody can see who voted for what, which isn't normally what we want...
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,584
    Likes:
    5,374
    Albuquerque
    Hi Mark,

    Thanks! I think the request was for a new poll that included both the VIPdx culture and serology tests--not the culture and PCR. There was an earlier serology test that has been improved--meaning people got different results on the first serology test and the second. The current tests offered by VIPdx are culture and serology.

    Sushi
  4. Mark

    Mark Acting CEO

    Messages:
    4,513
    Likes:
    1,929
    Sofa, UK
    Thanks for clarifying Sushi, I thought it was something along those lines.

    So is there a better way the question and title should be defined? Serology rather than PCR? I guess the original poll is corrupted now by the second round of people voting on the 2nd test over the top of the first set of results. Sounds like a great shame because we can't compare the results from the 2 different tests now. But maybe the original results could be reconstructed, using the Wayback machine or something...
  5. Lynn

    Lynn Senior Member

    Messages:
    301
    Likes:
    51
    Wayback machines...Are those like teleportation? I have been waiting for that for years! PEM due to travel - so over, step into the teleportation machine - no exertion necessary.

    Sorry Mark that I stumbled in explaining what we were looking for. I sent you a PM explaining the mistake. Thank you for taking the time to help us out.

    Lynn

See more popular forum discussions.

Share This Page