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 and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
Discuss the article on the Forums.

VIP Dx MAJOR ANNOUNCEMENT on Jun 1 !

Discussion in 'XMRV Testing, Treatment and Transmission' started by parvofighter, May 31, 2010.

  1. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Similar number to diabetes I believe.

    George - Woof
  2. Rita

    Rita Senior Member

    Messages:
    235
    Likes:
    5
    It's the best news we can have us, the European patients
  3. Mark

    Mark Acting CEO

    Messages:
    4,512
    Likes:
    1,929
    Sofa, UK
    Now that's what I call a major announcement!

    Hi George!
  4. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    Care to play speculation? (grins)

    Hi everybody. Tail Wags and hugs and big doggie grins to everyone!

    So Fred what percent do you think are currently ill with this virus???? (grins and eyebrow wiggles) CFS/ME, autism, prostate cancer (aggressive tumors). . . . . . .
  5. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    How does licensing work for blood supply monitoring. I suppose it's offered at a reduced rate (free?) to bodies like Red Cross etc.

    If there is revenue from that it would be huge. Every donation would have to be screened.
  6. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    Pleased to meet you, George.

    Interesting question.

    Based on an estimated 250k ME sufferers in the UK and a total population of 61 million, that would be 0.4%.

    So, c.28 million people globally could have XMRV induced ME on top of the 200 million asymptomatic carriers.
  7. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    34
    Texas
    Personally, I have no idea. Fred, where are you? I don't do math. :) However, I can't wait to find out and it looks like we will have an answer.
  8. dannybex

    dannybex Senior Member

    Messages:
    2,167
    Likes:
    514
    Seattle
    Okay...I don't get it. My brain isn't working at all today...

    If those who have been sick for years will likely show no antibodies, then why would this test be helpful, and why would you want to be tested?

    ???
  9. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Ill with the virus? Complete guess - 30 million
    It's like playing lottery this.
  10. dannybex

    dannybex Senior Member

    Messages:
    2,167
    Likes:
    514
    Seattle
    And then there's those who are healthy with the virus...?
  11. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    200 million. See post #158.
  12. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    There's really no easy answer for some CFS patients. If they're not producing antibodies anyway then they'll have to rely on the other two tests. Since we know that those two tests don't pick up everybody (although I imagine they do pick up most people) its possible that there is no definitive test for some patients; people do have some known pathogens but no antibodies to them - I imagine are in that risk group. I have no idea how many people are in this category. In any case with an antibody test you are continuing to winnow down the number of false negatives.
  13. Mark

    Mark Acting CEO

    Messages:
    4,512
    Likes:
    1,929
    Sofa, UK
    YAY! Speculation!

    George wanted a figure including autism, prostate cancer, and . . . . . . .

    The . . . . . . . presumably includes asymptomatic MS (3 +ves so far), GWI. I'm less certain now whether XMRV will cover most MCS and IBS but with a background infection rate of 4% and a rate of 10% in all immune-compromised people, it still seems quite possible it will cover a range of less severe neuro-immune problems. If it's the tip of an iceberg that explains the more general rise in immune problems, than of course we're looking at anything up to half the population of Europe by 2020 or so...

    ...the calculation I want to do though is something like: (75% of ME/CFS + 75% of GWI + 40% of autism + 40% of MS) * 1.5

    Quick rough guess for that, using fred's figures too, at 100 million.

    Infection rate could be as much as 6% or even 10% once testing improves and the demographics of the epidemic become clearer. Loads and loads of young people with strange new immune problems: I'll say anywhere up to 500 million.

    (I'm going for the prize for 'largest guess' rather than 'most accurate estimate'...)
  14. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    Hey Danny

    I remember that early on they did have trouble finding antibodies in the CFS group but . . . do we know if that's still true? Reading the Emory University (can't remember the Ph.D's name sorry) talked about their serology test being 100% accurate by FSH and another methodology.

    So the question is has the game changed since the early days? Are we now seeing a reliable serology test.

    P.S. I know the DHHS asked 6 labs to come up with a serology test so they could test blood supply and large numbers of people. Emory is one, ARUP and Dr. Illa Sighn are two, VIP/WPI are 3 and Nancy talked about sending samples to 4 labs for testing and getting different results, anybody know who the fourth is???
  15. Sing

    Sing Senior Member

    Messages:
    1,301
    Likes:
    422
    New England
    Hi George!

    A warm, warm welcome back to George! What a wonderful surprise on a day when we wanted good news. We have missed your sparkling humor, your scientific acumen, and--most critical of all--a dog's point of view.

    Sing
  16. jimbob

    jimbob ME/CFS84-XMRV+

    Messages:
    321
    Likes:
    8
    myrtle beach, s.c.
    I knew if I kept calling texas and bugging them, they would send you back to us! Welcome back George!!!
  17. 1, 100 or even 500 Million, I wonder quite how governments intent on deceiving the public would 'contain' a worldwide pandemic of a hard to detect retrovirus that patients may be born with?

    Would the tool of psychological theories on mal adaptive thinking of infected patients be useful here, coupled with a blanket ban on funding for bio-medical research?

    Would watering down the diagnostic criteria to Reeves empiric definition for 'fatigue' be useful?
    Would changing the name of Post Viral Fatigue Syndrome/ME (removing blame on a virus - or a World Health Organisation classfied neuro disease) to simple chronic tiredness (fatigue) be useful also? Someone could maybe call XMRV, 'CFS'.

    WPI just opened Pandora's box, and there are so many people desperate to stand back on the lid.

    Thankfully, a few scientists are putting a door wedge in the lid, so light can still shine onto the millions of people inside the box screaming to get out. :sad:

    Very confident within 2 years, the disbelief and blame of infected patients will be over. Treatment is another thing, but recognition needs to come first. :victory:

    More science please.
  18. rebecca1995

    rebecca1995 Apple, anyone?

    Messages:
    359
    Likes:
    20
    Northeastern US
    Can anyone figure out if VIP will continue to offer the culture test in addition to the antibody test, of if they are offering only serology now?

    Hi George!
  19. acer2000

    acer2000 Senior Member

    Messages:
    571
    Likes:
    201

    That might be true, but I can think of some criticisms of an antibody test as well. Antibodies can cross react, and there is always the possibility that everyone has them (ie the infection isn't specific to CFS). There actually are some scenarios where people can test HIV+ by antibody, but not be - thats why they confirm it with the PCR. Personally, I doubt that any of these negative scenarios are true. Given the other evidence in the Science paper, they have even more credibility that their findings are real and specific to this illness.

    But, PROGRESS! I'll take it. :Retro smile:
  20. JT1024

    JT1024 Senior Member

    Messages:
    534
    Likes:
    288
    Massachusetts
    Welcome back George!

    The fourth player in the testing arena is Abbott Laboratories. They make the PRISM instrument that is currently used to screen the blood supply in I think 30 countries.

    Dr. Silverman (of Cleveland Clinica) and John Hackett (?PhD) of Abbott presented a paper at the CROI in March. Abbott seems to be extremely close to adding XMRV to the list of HIV, HTLV, HepB, HepC, etc already screening blood.

    I have been offline for awhile and can't stay online...have to work :(

    I'll be checking in periodically though!

    Hope to read all the stuff!

See more popular forum discussions.

Share This Page