slayadragon
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I'm finding myself a little perplexed by something. Maybe you all can fill me in.
I know the following:
1. Lots of people who do not have ME/CFS test positive for XMRV. This includes 7% of healthy blood donors, according to the Lo et al study.
2. Testing negative for XMRV (according to culture or serology) does not mean that the virus actually is not present. XMRV can go into hiding, when it is not present in the blood but still is present in the "viral reservoirs." In the Lo et al study, one of the Komaroff patients tested positive in blood samples from two different years in the 1990s but negative in 2010 (even though s/he was still sick).
3. There are lots and lots of immune abnormalities that are specific to ME/CFS, that people who do not have ME/CFS NEVER have. Most people (at least in this community) also agree that the Canadian Criteria do a pretty good job filtering out those people who have something other than ME. Those of us who have hung around these boards for a long time have no problems spotting "real" ME'ers - based on bizarre symptoms, reactions to various drugs/supplements, illness history, etc etc.
Thus, it seems to me that for someone (like me) who has been sick for a long time with classic ME symptoms, and who has registered with a variety of immune abnormalities consistent with ME on various tests, and who has exhibited characteristic ME reactions to various treatments (e.g. die-off responses to drugs. detox responses to FolaPro/B12, catastrophic collapses as a result of mold exposures, etc. etc.), the XMRV test adds very little.
Compared to the stuff in the previous paragraph, XMRV is really non-specific. A positive doesn't mean the person has ME, and a negative doesn't mean that they don't have XMRV or ME.
The main reason that I can see to test someone for XMRV is if they're just starting to get mild symptoms that might be related to ME. If they came up as XMRV+, I would be inclined to tell them to take super good care of themselves so that the virus didn't go wholly active - for instance, get lots of rest, not get any vaccines, move to a place without a big toxic mold problem, maybe take some FolaPro/B12, support the gut.
Other than that, this test seems mostly like its value (at least for me) is solely in terms of public relations.
I imagine I'll do it, just so that I have one more piece of evidence that I do/did have "real ME" rather than "just a mold allergy."
From a purely objective point of view though, it seems kind of useless. Plus really expensive for me to pay for out-of-pocket.
I'd like to hear what other people feel the test is accomplishing for them, though.
Best, Lisa
I know the following:
1. Lots of people who do not have ME/CFS test positive for XMRV. This includes 7% of healthy blood donors, according to the Lo et al study.
2. Testing negative for XMRV (according to culture or serology) does not mean that the virus actually is not present. XMRV can go into hiding, when it is not present in the blood but still is present in the "viral reservoirs." In the Lo et al study, one of the Komaroff patients tested positive in blood samples from two different years in the 1990s but negative in 2010 (even though s/he was still sick).
3. There are lots and lots of immune abnormalities that are specific to ME/CFS, that people who do not have ME/CFS NEVER have. Most people (at least in this community) also agree that the Canadian Criteria do a pretty good job filtering out those people who have something other than ME. Those of us who have hung around these boards for a long time have no problems spotting "real" ME'ers - based on bizarre symptoms, reactions to various drugs/supplements, illness history, etc etc.
Thus, it seems to me that for someone (like me) who has been sick for a long time with classic ME symptoms, and who has registered with a variety of immune abnormalities consistent with ME on various tests, and who has exhibited characteristic ME reactions to various treatments (e.g. die-off responses to drugs. detox responses to FolaPro/B12, catastrophic collapses as a result of mold exposures, etc. etc.), the XMRV test adds very little.
Compared to the stuff in the previous paragraph, XMRV is really non-specific. A positive doesn't mean the person has ME, and a negative doesn't mean that they don't have XMRV or ME.
The main reason that I can see to test someone for XMRV is if they're just starting to get mild symptoms that might be related to ME. If they came up as XMRV+, I would be inclined to tell them to take super good care of themselves so that the virus didn't go wholly active - for instance, get lots of rest, not get any vaccines, move to a place without a big toxic mold problem, maybe take some FolaPro/B12, support the gut.
Other than that, this test seems mostly like its value (at least for me) is solely in terms of public relations.
I imagine I'll do it, just so that I have one more piece of evidence that I do/did have "real ME" rather than "just a mold allergy."
From a purely objective point of view though, it seems kind of useless. Plus really expensive for me to pay for out-of-pocket.
I'd like to hear what other people feel the test is accomplishing for them, though.
Best, Lisa