oerganix
Senior Member
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- 611
Dr Coffin's response
I asked him to explain his negative reaction to the offering of an XMRV test by Cooperative Diagnostics and whether he doesn't credit their mathmatical/computer aided construction process for PCR tests; he didn't answer the last but this is what he did say:
"In a nutshell:
1. They do not say what the test is, nor provide any information to evaluate its accuracy, false positive, or false negative rate.
2. At present, no one, no scientist or physician, knows how to interpret any results that the test might yield. I have real concerns that a negative result might be seen as license to donate blood, for example, and a positive result might cause patients to seek unnecessary and potentially harmful treatments.
3. No studies evaluating the accuracy of this or any XMRV test on dried blood have been done."
(CD's response to me in my next post addresses #1, but I don't know whether it is an adequate response.)
I don't see concern for the blood supply as a reason not to get tested. I don't know of any PWC who, if they answered honestly, would be allowed to donate blood, nor do I personally know of any who would want to, for various reasons.
But I certainly agree that a positive result could encourage people to seek unnecessary and potentially harmful treatments. And CD acknowledges that, too. In the end, though, I think people ought to be able to decide that for themselves. So the main reason for not getting this test, IMO, is that we can't be sure it is accurate; we don't know how to interpret ANY test of XMRV; we don't yet know if XMRV is as important in ME/CFS as the current brouhaha infers; we don't yet know if/what the appropriate treatment(s) might be.
I asked him to explain his negative reaction to the offering of an XMRV test by Cooperative Diagnostics and whether he doesn't credit their mathmatical/computer aided construction process for PCR tests; he didn't answer the last but this is what he did say:
"In a nutshell:
1. They do not say what the test is, nor provide any information to evaluate its accuracy, false positive, or false negative rate.
2. At present, no one, no scientist or physician, knows how to interpret any results that the test might yield. I have real concerns that a negative result might be seen as license to donate blood, for example, and a positive result might cause patients to seek unnecessary and potentially harmful treatments.
3. No studies evaluating the accuracy of this or any XMRV test on dried blood have been done."
(CD's response to me in my next post addresses #1, but I don't know whether it is an adequate response.)
I don't see concern for the blood supply as a reason not to get tested. I don't know of any PWC who, if they answered honestly, would be allowed to donate blood, nor do I personally know of any who would want to, for various reasons.
But I certainly agree that a positive result could encourage people to seek unnecessary and potentially harmful treatments. And CD acknowledges that, too. In the end, though, I think people ought to be able to decide that for themselves. So the main reason for not getting this test, IMO, is that we can't be sure it is accurate; we don't know how to interpret ANY test of XMRV; we don't yet know if XMRV is as important in ME/CFS as the current brouhaha infers; we don't yet know if/what the appropriate treatment(s) might be.