Is everyone onboard about the new virus???

Discussion in 'Fibromyalgia Main Forum' started by hensue, Oct 11, 2009.

  1. hensue

    hensue New Member

    Just checking I am sooo cynical and want to believe this may be the problem for fibo and chronic fatigue or diagnostic tool whatever.

    Wanted to see how everyone felt??
  2. TigerLilea

    TigerLilea Active Member

    According to Dr. Lapp, the original results come from blood taken from the 1980's outbreak at Lake Tahoe. There were only about 100 samples, so this could be something that will only be found in this one group of people. I personally think it was very premature for this news to have been released. Until they do testing of people from all over North America and Europe, it is way too soon to be making this kind of an announcement.
  3. gasolo

    gasolo New Member

    According to the Whittemore Petersen Institute article published in the journal Science, the sample for their study were from patients across the United States. Below is part of the article on their methods.

    Patient samples. Banked samples were selected for this study from patients fulfilling the 1994 CDC Fukuda Criteria for Chronic Fatigue Syndrome (S1) and the 2003 Canadian Consensus Criteria for Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) and presenting with severe disability. Samples were selected from several regions of the United States where outbreaks of CFS had been documented (S2). These are patients that have been seen in private medical practices, and their diagnosis of CFS is based upon prolonged disabling fatigue and the presence of cognitive deficits and reproducible immunological abnormalities. These included but were not limited to perturbations of the 2-5A synthetase/RNase L antiviral pathway, low natural killer cell cytotoxicity (as measured by standard diagnostic assays), and elevated cytokines particularly interleukin-6 and interleukin-8. In addition to these immunological abnormalities, the patients characteristically demonstrated impaired exercise performance with extremely low VO2 max measured on stress testing. The patients had been seen over a prolonged period of time and multiple longitudinal observations of the clinical and laboratory abnormalities had been documented.


    [This Message was Edited on 10/11/2009]
  4. hensue

    hensue New Member

    this is what I was waiting on for people to get the study and understand it better.
  5. TigerLilea

    TigerLilea Active Member

    Thanks, Gary. The only info I could find yesterday didn't give much in the way of numbers. I saw Dr. Lapp's response today and that was the only info I had. I'd still like to know how many people we are talking about. Was it 25, 100, or 10,000? I don't trust studies that only look at a very small number of people.
  6. gasolo

    gasolo New Member

    Hi TigerLilea,

    68/101 (67%) for the experimental group
    8/218 (3.7%) for the control group

  7. spacee

    spacee Member

    On the homepage here, it says it was 300 people.

    I wonder if it was some of my blood. I was seen at the Cheney Clinic in the early 1990's. My t-cell count was so low, 185, that it was the same as an HIV patient who starts with AIDS.

    I was also studied at the NIH and they have my blood too. But since they think CFS is psychiatric, rather "thought" it was, I doubt they sent my blood over.

    I was "reported" to the CDC as having AIDS but HIV neg.

  8. jasminetee

    jasminetee Member

    The WPI has been updating its site regularly and this is what they say now:
    "Our initial research showed that 67% of the ME/CFS patient samples tested positive for XMRV. Further work has found that 95% tested positive. Work continues to understand how this virus works within neuro-immune diseases, but this discovery proves a significant correlation between this serious retrovirus and these diseases."

    So I think the numbers should say:

    95/101 (95%) for the experimental group
    8/218 (3.7%) for the control group

    I am onboard as in I'm on the board a lot reading and reading and looking up links and discussing and thinking and waiting and praying.

    I am cautiously optimistic.

    [This Message was Edited on 10/11/2009]
  9. FibroFay

    FibroFay New Member

    hensue, I'm just praying I have the stupid virus!

    From the hopeful atmosphere here on this board, I think people much smarter than myself believe we are on the verge of a huge breakthrough. I just don't want to be left out if healing is on the way:)

  10. Dantes

    Dantes New Member

    The optimistic side of me wants to believe they thought this announcement through carefully. Knowing that a press release, like this, could bring everything down if they were wrong.

    So, my lighter side wants to believe that they calculated and thought this through and believe in it.

    My pessimistic side thinks this may go the way of HHV-6 and Parvo. I'm not throwing in EBV and CMV, as their Chronic form, is indeed, a cause for a subset of CFS/ME.

    HHV-6 and Parvo have been pointed at for a few years now, yet no definitive research, or treatment, has proven them to be the smoking guns. Not for the illness, nor any certain subsets.

    Since CFS/FM/ME is a bucket term, we can only hope this is either a chicken/egg of a large subset of patients. If it is indeed a cause [chicken], then this is wonderful news. If it is just an opportunistic virus [egg], then it is not as exciting. If it is the egg, then we can at least treat it and hope the immune system burden is lightened. Maybe give a little peace to those that suffer.

    Either way, I stick to my mantra of "Sub-sets". Until certain groups can be definitively identified by accurate testing, this whole mess is a shotgun approach.

    Prostate cancer is in the "cancer" group... so there should be groups that identify us as well.

    Until we define these groups, whether it be neuro-cfs, immune-cfs, viral-cfs, etc., we are all considered the same. This is very damaging.

    Example, someone started a thread about this new virus and transmission. At least 2 people posted about girls/guys they have dated while being sick. Reading the thread had me at a loss... I have barely been able to leave my room due to neurological/fatigue issues, yet I am lumped into the same "group" as those that date regularly and hold jobs.

    Something is terribly wrong with that picture.

    This is not to say they are not sick... but we are obviously very different in our symptoms, responses and classification.

    Maybe the WPI can solidify a group of classifications since they want to spearhead this damn disease. Right now, with this announcement, I don't see that effort. I do hope it comes with time because we need to be separated into groups. We don't need to be treated as though we all have the same exact illness.
  11. siebertesther

    siebertesther New Member


    Samples were from all over the country including the North Carolina symphony outbreak and the kids from Lyndonville NY. From what I've read, the retrovirus was found in postate tumors of people with a particular genetic immune problem. Scientist decided to test it in CFS patients because many with CFS have this same defect. After refinement of the test for the virus, the rate of CFS people with the virus went up to 95% tho these data have not been published yet.
    This is what the scientist at the head of the research reported informally.

    So, the family connection can be explained by the genetic defect.

    The cluster outbreaks may be explained (if the retrovirus is not airborne as reported) by its ability to live on surfaces as well as the ways we get HIV.

    Viruses cross species lines all of the time. This one apparently emerged in mice and could have been transmitted is so many ways I can think of including by pet mice.

    It may take a combination of genetics, exposure to the virus and highly stressful life events for a person to succumb. And then, our immune systems, affected by all of the above, leave us open to all kinds of opportunistic infections.

    Many of the articles I'm reading are calling CFS a neuro-immune disease. I think neurological damage done to our brains by the virus is causing a lot of the symptoms like cognitive problems (brain fog, concentration, memory) as well as emotional ones like anxiety, depression, emotional lability) plus physical ones from damage to the autonomic system causing NMH, temperature problems, heart racing, shakiness, IBS, etc. I read today that the virus turns on and off which could account for the remission/relapsing part of our illnes.

    My 2 cents from what I've read so far. I'm not so interested in how we got the virus but rather how long before they have a clinical blood test for it and can begin testing out antiHIV drugs and determine if we have the genetic defect. All of this may come to late for me but not for those who haven't been sick too long or are just being diagnosed now. How wonderful that is. Plus with the cancer connection and possibly transmission concerns, maybe now we can get some real money for research. All the best, Esther
  12. denis321

    denis321 New Member

    from the WPI and refers to antibody testing rather than the DNA PCR techniques of the Science article.

    I agree with the comments about subsets -- if most of the samples used in the current study are from outbreaks, this could be different from sporadic cases of CFS. If genetics was a big factor and unless the groups in question (e.g. the symphony) have similar genetics (unlikely), it's odd that so many in a group would be affected.

    Lots of discrepancies in my head here and I'd like to see how this dovetails (or not) with use of antivirals and the rituximab study going on in Norway.