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

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.

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.

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:

Hadn't looked at at from that angle

And I've been waiting for more work to be done on the tests. Maybe I need to show this to my wife.

Indeed it should! Odd about the negatives; were those all from VIP?

Oh, about the other thing...

[video=youtube;zGz2rXU4aAs]http://www.youtube.com/watch?v=zGz2rXU4aAs[/video]

Yes, all from VIP.

Just DO NOT show her the Grungy Gaye video to get her in the mood :worried:

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

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.

VIPdx received my blood on 12/10 (my birthday).

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.

Thanks withhope, it's nice of you to let us know about the XMRV+ result from your partner.

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

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

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

Bedridden, the worst case PEM you can imagine and all the other symptoms for ten years now. 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

http://www.onwilliglichaam.blogspot.com

hope you have better luck with the serology test, I did. Tested positive couple days ago after 2 month wait on results.