VIP Dx/WPI Combined PCR/Culture Poll for ACTIVE and LATENT Infections

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

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

    Votes: 4 8.5%
  • I have moderate to severe ME/CFS: I tested positive to both the PCR and the Culture tests

    Votes: 8 17.0%
  • I have mild to moderate ME/CFS: I tested positive to both the PCR and the Culture teststhis

    Votes: 0 0.0%
  • I have severe ME/CFS: I tested positive to the Culture test only

    Votes: 3 6.4%
  • I have moderate to severe ME/CFS: I tested positive to the Culture test only

    Votes: 7 14.9%
  • I have mild to moderate ME/CFS: I tested positive to the Culture test only

    Votes: 4 8.5%
  • I have severe ME/CFS: I tested negative to both the PCR and the Culture tests

    Votes: 6 12.8%
  • I have moderate to severe ME/CFS: I tested negative to both the PCR and the Culture tests

    Votes: 13 27.7%
  • I have mild to moderate ME/CFS: I tested negative to both the PCR and the Culture tests

    Votes: 2 4.3%

  • Total voters
    47

Cort

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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.
 
C

Cloud

Guest
It may be beneficial to fine tune the symptoms in each category because we have significant numbers both xmrv + and - in the mod-severe level of the scale. This appears that xmrv has little to nothing to do with symptoms. Of course, this may change as we get more people using the scale.

Elaborating on symptom severity by naming the top 3 worse symptoms (for example) may be even more diagnostic as to xmrv's contribution to symptoms severity. I'm thinking that with things like the supposed xmrv cortisol receptor, those who are xmrv + may have worse "Post Exertional Malaise" (for example) thank those in that same severity level that test xmrv negative. Just a thought.
 
K

_Kim_

Guest
Another negative...and some news

Just back from NY, where I learned that I tested negative from both PCR and Culture. I was on Valtrex when I took the test, so the results may have been skewed by that. I will retest when the other tests become available.

How do I feel?
I am relieved. Though I am not taking this news as definitive, for the moment, I am going to assume that the results are correct.

Dr. Levine said out of 11 that she's tested, only one came back positive. She sent that person's blood up to Brigitte Huber's lab at Tuft's to do the same kind of PCR on it that the Imperial College study used. Should be interesting!!!

I've been living with self-imposed celibacy since Oct 8th. No kissing - nothing :ashamed:

:victory:I'm getting down tonight! :victory:
 

CBS

Senior Member
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Hadn't looked at at from that angle

I've been living with self-imposed celibacy since Oct 8th. No kissing - nothing :ashamed:

:victory:I'm getting down tonight! :victory:
And I've been waiting for more work to be done on the tests. Maybe I need to show this to my wife.:rolleyes:
 

Dr. Yes

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Dr. Levine said out of 11 that she's tested, only one came back positive. She sent that person's blood up to Brigitte Huber's lab at Tuft's to do the same kind of PCR on it that the Imperial College study used. Should be interesting!!!
Indeed it should! Odd about the negatives; were those all from VIP?
 

Kati

Patient in training
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Kim, may I ask you how long it took to get the results? Sending out my blood tomorrow!

One thing I wonder is if any kind of anti=inflammatory could also skew the results? I remember Dr Judy that some of the treatments for XMRV would include anti-retrovirals and anti-inflammatories.

Thanks, K
 

Martlet

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Kim ---

It feels so strange to one day congratulate someone for a positive test, then the next to congratulate someone for a negative test, but here goes.

CONGRATULATIONS

Glad you feel better about - ahem.
 
K

_Kim_

Guest
Kim, may I ask you how long it took to get the results? Sending out my blood tomorrow!

One thing I wonder is if any kind of anti=inflammatory could also skew the results? I remember Dr Judy that some of the treatments for XMRV would include anti-retrovirals and anti-inflammatories.

Thanks, K
VIPdx received my blood on 12/10 (my birthday).
 
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ANOTHER XMRV POSITIVE PERSON IN EUROPE
not sure where is the best place to post this - but wanted to confirm another XMRV positive. My partner - ME/CFS for 7 years - orginally from Russia - living in the UK for 15 years is XMRV positive from VIP labs.
 

omerbasket

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It's nice and interesting. Thank you. Anyone who tells us his (or his friend/partner etc.) result tells us something interesting.
 

Advocate

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ANOTHER XMRV POSITIVE PERSON IN EUROPE
not sure where is the best place to post this - but wanted to confirm another XMRV positive. My partner - ME/CFS for 7 years - orginally from Russia - living in the UK for 15 years is XMRV positive from VIP labs.
Hi WithHope,

I really appreciate your posting the news about your partner, whether you think it's good news or bad news.

I don't know if you remember, but back in January a group of 59 members of this list put together a symptom survey for people who are positive for XMRV. We wanted to find out what symptoms XMRV+s have in common. If you will visit the website, it will tell you a little about the history of the survey and what we hope to do with the results. Please tell your partner we'd appreciate it very much if he/she would complete the survey (the link is in my signature).

Thanks,
Advocate
 

redo

Senior Member
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I am negative for XMRV (culture), but positive for MLV (PCR). Awaiting serology results.
 

Sushi

Moderation Resource Albuquerque
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I'm so dissapointed being negative on this test. The results of the serologytest will arive half February. I wish I could hibernate and wake up at that time.

Love,
Berthe
Berthe! Was this a negative "by culture" from Redlabs? I'm so sorry. It is so difficult to have to wait, not to know. The research that is emerging seems to show how hard it is to find this bugger in the blood. We all so wish there were a quick, totally reliable test.

Best wishes,
Sushi
 

Sushi

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Just a bit of good news for those considering getting tested for XMRV at VIP: I just found out that Medicare paid for both my Serology and Culture tests. :victory:

Sushi