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VIP Dx Culture Test Poll For A LATENT Infection

Discussion in 'XMRV Testing, Treatment and Transmission' started by Cort, Nov 1, 2009.

?

What is the Result of Your XMRV Culture Test?

  1. I have severe ME/CFS: I tested positive

    11 vote(s)
    16.2%
  2. I have moderate to severe ME/CFS: I tested positive

    16 vote(s)
    23.5%
  3. I have mild to moderate ME/CFS: I tested positive

    3 vote(s)
    4.4%
  4. I have mild ME/CFS: I tested positive

    0 vote(s)
    0.0%
  5. I have severe ME/CFS: I tested negative

    10 vote(s)
    14.7%
  6. I have moderate to severe ME/CFS: I tested negative

    25 vote(s)
    36.8%
  7. I have mild to moderate ME/CFS: I tested negative

    2 vote(s)
    2.9%
  8. I have mild ME/CFS: I tested negative

    1 vote(s)
    1.5%
  1. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    This Poll looks at XMRV Culture tests by the VIPdx lab. This tests determines if your white blood cells carry the virus.

    One thing everyone's interested in is whether illness level will effect ones potential for testing positive; ie will severely ill patients be more likely to test positive than moderately ill patients? To get a grasp on that the poll will assess illness level relative to disability on four levels; severely ill, moderate to severe and mild to moderate and mild. Disability levels aren't perfect but they're a start.

    This poll tests for a LATENT infection; ie whether the virus can be found inside the white blood cells. While a virus restricted to the inside of cells may not be actively infective it can still disable the cells it is found in and may possibly produce substances that elicit an immune reaction.

    These polls are completely private; neither I nor anyone else can determine how anyone voted.

    We're going to use Dr. Bell's disability scale. It's a bit lengthy. I highlighted the functional parts of it. This scale is from 'The Doctor's Guide to Chronic Fatigue Syndrome', by David S Bell, pages 122-123.

    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 labout, 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 ofthe house. Marked cognitive symptoms preventing
      concentration.

    • 0 = Severe symptoms on a continuous basis; bedridden constantly;
      unable to care for self.
  2. _Kim_

    _Kim_ Guest

    poll confusion

    Checking in on the XMRV test polls today, I realized that by having two separate polls for PCR and Culture, the results of the polls will be confusing and misleading. We will have no way of knowing how many people tested positive for XMRV vs. how many tests came back as positive. For example, if I test positive for both tests and report that here, it may be perceived that 2 people have tested positive. Anyone else see the problem with this?

    Currently, there are 2 positive by PCR (both severe CFS) and 2 positive by Culture (one severe and one moderate to severe). Are there 2, 3, or 4 XMRV positive members so far? No way to know.
  3. Nielk

    Nielk

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    Queens, NY
    poll confusion

    I just thought about the same problem. Someone might be positive for one test and not the other. Or positive for both. If positive for both they'll post it on both polls and we won't know that it is one person as opposed to two.

    It will confuse the total tally of people testing positive for either.

    Nielk
  4. geo

    geo Guest

    Can't afford XMRV Tests

    While I would like to participate in this poll; unfortunately, I can't afford the XMRV tests. I'm on disability and medicare with no disposable income.

    I contacted VIP DX and was told that they are a fee-for-service provider, i.e. they don't accept the Medicare assignment. They will invoice Medicare as a courtesy, but Medicare may or may not pay anything toward the bill. Even if Medicare does pay something, I am still responsible for the balance of the invoice.

    In addition, as I understand, some of the leading ME/CFS doctors also do not accept Medicare assignment. I have two doctors in mind.

    I think I'm in the same boat as many seriously disabled ME/CFS people. It seems sadly ironic that most of these tests, some of the ME/CFS specialists, and maybe potential treatments, will not be affordable and/or accessible to many of the seriously disabled ME/CFS people.

    I can only hope that these XMRV tests and future treatments will be made available to other testing labs and doctors who will accept Medicare.
  5. ramakentesh

    ramakentesh Senior Member

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    81
    Interesting - two people tested positive. Very interesting!
  6. Kati

    Kati Patient in training

    Messages:
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    Have anyone noticed that the number of positives is very close to 67% ???
  7. julius

    julius Watchoo lookin' at?

    Messages:
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    5
    Canada
    I've read a few posts of people having family members without me/cfs tested. Maybe you could add to the poll a "I dont have me/cfs and tested +/-"
    Just a thought
  8. Gerwyn

    Gerwyn Guest

    hi Cort I wouldn,t be able to fit my symptoms into this scale I was totally disabled cognitively severe flu like symptoms seisures but was not bed bound.The neurocognitive and endocrine dysfunction made life absolute hell The loss of cognitive map and any propioreception was undescribable

    perhaps I, dont understand the scale I certainly had severe symptoms at rest but the rest doesn,t fit
  9. Gerwyn

    Gerwyn Guest

    hi Cort I wouldn,t be able to fit my symptoms into this scale I was totally disabled cognitively severe flu like symptoms seisures but was not bed bound.The neurocognitive and endocrine dysfunction made life absolute hell The loss of cognitive map and any propioreception was undescribable

    perhaps I, dont understand the scale I certainly had severe symptoms at rest but the rest doesn,t fit
  10. VillageLife

    VillageLife Senior Member

    Messages:
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    Likes:
    36
    United Kingdom
    If you add up BOTH poll results.
    That's 50 people and 29 have a positive result.
  11. MaryAnn

    MaryAnn

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    Geo - I am sorry to hear of your plight. Hopefully you signed up to be tested by WPI/any clinical trials. If XMRV does turn out to be the cause of CFS, more labs and physicians should offer treatment. Let's hope they also accept Medicare too. No one knows how the new health care regulations will impact medical service/insurance.
  12. dga5000

    dga5000

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    I have just received my test result from VIP Dx. I was tested in February via Biolab in London using their improved culture method. I tested negative.
  13. Snow Leopard

    Snow Leopard Senior Member

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    Australia
    Me too - I was tested in the USA in Februrary (I live in Australia) and I tested negative. They did this batch of tests twice (and gave a discount due to the time taken..), since they were "not happy" with the "sensitivity" of the first batch.
  14. omerbasket

    omerbasket Senior Member

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    Would you too get your blood to be tested for antibodies against XMRV? Because as far as I understand, that should be the ultimate test, at least in the near future. As Dr. Mikovits said - If you tested positive for XMRV by WPI/VIPdx - you have XMRV, but if you tested negative for XMRV by WPI/VIPdx, currently that does not neccesserily says you don't have XMRV. And the best example for this might be Sue (ladybugmandy from this forum), who tested negative for XMRV by VIPdx (or WPI?), and did not get her serology (antibodies) test answer yet, but started taking AZT about two weeks ago and she feels a significant improvment already. That might happen because of several reasons and does not neccesserily says that she is XMRV positive - but that is a strong possibility.
  15. Gerwyn

    Gerwyn Guest

    This disability scale is rather a blunt instrument and does not account for the spectrum of severe symptoms associated with the illness especially the neuroendocrine immune symptoms.It is apparently only focusing at activity levels
  16. Sala

    Sala

    Messages:
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    0
    I did the same and tested negative.
  17. Rafael

    Rafael XMRV+ Member

    Messages:
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    Ontario, Canada
    My cousin and I sent our blood to VIP 10 days ago. Not part of any formal study.
    I have a few questions. If anyone can answer any, great. Apologies if already answered elsewhere in Forum.
    How are the results communicated - only to the signing MD or directly to person with ME as well ?
    Do they say anything more than positive or negative - like 'wow a new lab record' (I actually got that once - Free Cell DNA) ?
    Why three test tubes of blood sample. One with special processing ?
    Any theories on why so few (25) posted results, especially recently - is this a gap where they were refining the test before resuming ?
    Or are people just waiting for the refined antigen test to come out - seeing as in yesterdays news the Culture test has a 50% false negative rate ?
  18. omerbasket

    omerbasket Senior Member

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    I believe most of the people who sent their/their families samples don't know of this forum, so they don't post their results here - and that most of the people on this forum that wanted to have the test, already had it a few months ago.
  19. Alexia

    Alexia Senior Member

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    Portugal
    I have the impression that most people are just waiting for the serology test because it will be cheaper and more reliable.
  20. ukxmrv

    ukxmrv Senior Member

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    London
    There has also been a big delay in getting results back from VIP dx. Something went wrong in March 2010 and whole batches of tests had to be run again. There is a big delay in getting test results back. A friend of mine sent in his blood end of Feb and is still waiting. All running fine now but just a backlog due to whatever the problem was.

    Alexia - VIP dx told me that the serology test won't be any cheaper. That was a few months ago and things may have changed?

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