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XMRV Testing: What is the Goal?

Discussion in 'XMRV Testing, Treatment and Transmission' started by slayadragon, Sep 27, 2010.

  1. slayadragon

    slayadragon Senior Member

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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
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Good questions, Lisa, and ones most of us who have opted for testing have asked ourselves.

    Here are some of my thoughts: aside from social vindication from the hypochondriac stigma, a positive result puts you in line for any emerging experimental treatments that may arise--like, for instance, GcMAF or a homeopathic nosode.

    Also, as more is learned about this family of retroviruses, it gives you some clues about what treatments NOT to do--not, because they might well cause the virus to replicate or behave in some other unwanted fashion.

    Also, a positive result puts you in a patient group that at least has a more defined target--and from the patient and researcher input that we are getting on forums, some non-toxic, effective therapies may emerge that could be more specific for ME/CFS. I am already doing such a therapy with an herbal combination and a laser. I would not have tried it if the combo hadn't tested well against a sample of the virus in my body. (kinesiology)

    I am writing this on the eve of getting my official results, so I am in the "what if" zone tonight. I learned today that VIP faxed my results to my doc, but somehow she didn't get them.:ashamed:

    I waited till the serology test was ready, but it is looking like more people are getting positives from the culture test.

    Anyway, tomorrow I should know.

    Sushi
  3. illsince1977

    illsince1977 A shadow of my former self

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    There is nothong left for me to eliminate anymore.

    Got rid of the amalgams, mold in the environment, treated Lyme, Babesia (despite negative tests), fibrinogen, methylation defects, viruses. Can no longer tolerate any supplements. Did acupuncture, guafenesin - both helped, then failed. Been horribly sick 33 years.

    There's no hope of getting ARVs without a positive test. For me it is a no-brainer, Leave no stone unturned. Have no choice! I hope you can understand.
  4. Dr. Yes

    Dr. Yes Shame on You

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    Hi Lisa :Retro wink:

    I think knowing you have a potentially infectious, potentially pathogenic retrovirus that you can (or already did) pass on to children or possibly even sexual partners, which may be involved in ME/CFS, prostate cancer, and perhaps other diseases, is always a good thing to be aware of !

    For those of us at the tender mercies of doctors or government systems that are trying to define our illness as psychosomatic and thus deny us proper care and benefits, every little bit of physical evidence helps; even at this stage, a positive XMRV test would at least make most of them think twice before, say, sectioning a patient.

    It's true that a significant percentage of the healthy population may carry HMRV, but that fact does not at all weaken the association between HMRV and ME/CFS. In fact, the stark contrast between positivity rates of healthy controls vs. CFS patients is the basis for that association.

    Unless and until HMRV is proven to be causative, it will of course be impossible to say that a positive result proves a person has ME. For that matter, however, even if it is shown to be causative, the test result will have to be put into the context of the clinical presentation. Even testing positive for HIV doesn't by itself mean a person has AIDS; if a person presents with an illness then the task of the clinician will be to determine whether that illness is AIDS or an unrelated condition. If however, a person has symptoms of ME and tests XMRV positive, the result would strengthen the argument for a diagnosis of ME, just as HIV positivity would strengthen the case for deeper investigation of a random clinical presentation and the consideration of an AIDS/ AIDS-related disease diagnosis.
  5. JAXintheCity

    JAXintheCity

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    I agree with the above posters. I just want to have the test (if its positive) so that I could be in line for any experimental therapies or anti-retrovirals when they become available. Then again, I'd eat cow dung at this point if someone told me it might make me feel better! :)

    The other thing...being newly married and hoping to one day start a family...I would like to know how to protect my children from this horrible disease. (At this point, we have seriously discussed adoption because I just can't bear the thought of my child suffering with ME/CFS one day.) At least if it's found that XMRV is linked to ME/CFS...there are ways you can protect your unborn baby. At least, that's what I understand from HIV...

    I'm not a scientist, though. Just a young lady trying to make something out of this crazy life... :)
  6. redo

    redo Senior Member

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    Right of the top of my head I can think of two major reasons:

    Close relations
    Most of us (yes it'd say most) don't appear especially physically ill on the outside. No bone is broken and there's little outsiders can feel, touch or see that makes it obvious that one is ill. It can be hard to fathom for many, because we feel so ill, and people like myself, have always assumed (without thinking much about it) that it's just as visible on the outside as it feels on the inside. It's just the same for many MS patients. But, and that's a big but; most of them have a MRi which shows that their brain has spots of white matter.

    Getting a positive test for a virus will show others whom you'd want to tell that there is something wrong. A viral infection is understandable to a layman.

    There are many who don't have this problem at all, who get fully understood and supported. But at the same time there are many who would love to get something concrete and easily understandable to tell people when they ask why you don't lawn the mow or go get your own slice of bread.

    If it's worth some 500$? Some think it is, some don't.

    Treatment possibilities
    The other major reason is treatment. Right now, if we're not lucky enough to get enrolled in a clinical trial, we'd likely have to wait for years to get help. Some feel that they just aren't in a life situation were waiting so long to give something a go is the right thing to do. And I fully respect and understand their choice. It's up to them. Some feel the other way about it, but that's a bit off topic discussion.
  7. floydguy

    floydguy Senior Member

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    I can see how anyone with a slam dunk case of CFS might feel that they don't need to get tested. I personally don't feel like mine is a slam dunk case. So a positive would confirm the diagnosis (at least to me). This might be helpful for disability proceedings or other assistance in the future.

    As noted above, testing positive also makes it much easier to get into clinical trials or research studies where you could potentially get a lot more testing done which could be helpful for future treatments or diagnosis.

    In the scheme of things $500 isn't much compared to endless supplements and expensive labs that usually aren't very helpful. Proper Lyme and co-infection testing is nearly expensive and often not covered by insurance.

    Finally, if I have an infectious disease I don't want to give it to friends, family, etc.
  8. ukxmrv

    ukxmrv Senior Member

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    Lisa,

    What happens in your proposal when people have done all the things you mentioned and they are not further forward and still without a treatment or a cure?

    Well, in my case I keep looking and I keep trying new things. That's why I had the XMRV test and why I am following people trying different treatments for it.

    We all want to get better. For some people it's been easier and for some harder/impossible so far. I don't need any extra validation - I just want to be in better physical health and I'm hoping that the XMRV research will lead to some understanding of the disease and some treatments that work for me.

    I'm a bit puzzled that you would be confused about what people are doing. We are desperately sick, some suicidal and without any meaningful life and willing to try things to get better. We make decisions based on what is available to us and hope for the future. An informed judgement based on the available data - which can be sparse.

    If XMRV doesn't pan out we will move onto something else, as we have been doing for decades - until we die.
  9. Cloud

    Cloud Guest

    MY first reason is....Dr Peterson ordered it on me October 12th 2009. I was there on the front lines and eager to follow his recommendations. I believe my best bet is to "stick with the winners", and this is the path they are taking me.

    My reason for continuing is....everything we learn about xmrv and what it does, tells my 17 year ME/CFS story like no other (suspected) cause we have found. It makes the most sense and therefore, I believe it's a major player. With this in mind.....The goal is to create the best treatment plan possible, as soon as possible. It takes a good assessment before one can create a good treatment plan. xmrv status needs to be included in that assessment regardless of whether it's a major player or not.
  10. slayadragon

    slayadragon Senior Member

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    These reasons all make perfect sense.

    I guess my real concern is about the people I see on this board - ones who clearly meet the established ME/CFS criteria in terms of symptoms, tests, reactions to drugs, history, etc. - acting like the results of the XMRV test give them some kind of useful information.

    In my case, it's simple. I have ME/CFS. Whatever ME/CFS is, I have it. I feel wholly confident that no doctor who looked at my files would deny that.

    Thus, if XMRV is necessary to have the disease, then I have it even if the test says I do not (because the test can be inaccurate). If I do not have XMRV (for real, not in terms of the test result), then it is not necessary to have ME/CFS.

    I'm not being grandiose here. I think the majority of the people on this board have the case histories to be able to say the same thing.

    The idea that "XMRV didn't come up on the test, so you don't have RealME/CFS" seems to be extremely dangerous. It has the potential of causing people who actually do have the illness not to get treated appropriately for it.

    So I'm really skeptical about the idea of people's putting so much stock in the test results.

    On the other hand, as Floyd suggests, if people are not slam-dunk cases of ME/CFS, the XMRV test (even if not particularly accurate) could give them one more piece of information to add to their files to tilt the balance one way or the other.

    Certainly if people want drugs to treat XMRV, an XMRV test is appropriate (and likely will be required by any treating physician).

    The retrovirus is in the news now, and so there is some possible "PR" value in getting the test for any of us. I recently brought up XMRV as a factor in ME/CFS recently to an integrative-type MD, and his comment was, "How do you know you have the virus?" Family members, friends and others might be impressed with that piece of evidence too.

    With regard to passing on the virus to others - practicing safe sex and general health hygiene is a good idea for anyone. But if 7% of healthy blood donors were found to have XMRV in their blood (and likely a higher percentage of the entire population has XMRV either in blood or tissues), they're not going to be not having kids or going out in public for fear of passing it on. Nor do I think that (unless this virus is far more vicious than I believe it to be) they should be taking those measures.

    I know someone who came home from a visit to a well-known CFS physician in terror about passing XMRV on to her family members. She and her husband spent long nights discussing it, had a conversation with their 9-year-old son about the virus, and wondered if they ever should have had kids.

    If we get to the point where 10% of the population is going to do this after getting a positive result for a virus on a blood test, it's going to be a scary world indeed. Maybe I'm wrong, but I don't see it happening.

    Personally - and this is just from my own perspective - I think that it's more productive for people who are concerned about whether their kids might get ME/CFS to focus on the toxin component of the disease. Insofar as the disease is even exacerbated by toxins, staying away from those toxins and being proactive with regard to maximizing detox mechanisms seems like it might be worth focusing attention upon.

    If people have $500 to spend on this test, fine. There's nothing wrong with it. In some cases, it may provide useful or necessary information.

    But getting really upset about a positive result seems maybe going too far.

    And feeling invalidated by a negative result also seems maybe going too far.

    Best, Lisa
  11. ukxmrv

    ukxmrv Senior Member

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    We all feel differently Lisa.

    People with ME and CFS are paying for expensive experimental tests every day. Those who don't chose to or haven't the funds are trying the cheaper things.

    It just goes on and on

    The goal is to recover from the disease.

    Focusing on the toxins may have worked for you but you need to accept that not everyone shares your opinion, experience and viewpoint.

    When you started the thread I hoped that this was a genuine attempt by you to understand other patients rather than an opening to push your opinions on patients.
  12. slayadragon

    slayadragon Senior Member

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    ukxmrv, I re-read your first post above.

    I certainly think it's appropriate and important to get the test before pursuing treatment for XMRV, and I've stated numerous times in various places that I think that people who want to try ARV drugs absolutely should be allowed access to them.

    People are too sick not to have options. I very well may try the drugs myself at some point.

    As I tried (perhaps ineffectively) to explain, the main problem that I have is that of people who have clear-cut established cases of ME/CFS believing that the test invalidates their illness if it comes up negative. Since false negatives are to my understanding not uncommon on this test, that seems a mistake.

    Best, Lisa
  13. ukxmrv

    ukxmrv Senior Member

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    I've met people with XMRV- results who don't feel invalidated. They understand the concept of a false negative. They know that this will take years to sort out. Very hard for them.

    We are all different. People feel different things.

    Maybe you should just these people speak for themselves.
  14. garcia

    garcia Aristocrat Extraordinaire

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    If people are excessively worried about getting a false negative then they should really wait to get tested. Meanwhile the rest of us will forge ahead.
  15. slayadragon

    slayadragon Senior Member

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    I think part of my difference in perspective may be due to my own personal experiences.

    I've not had relatively few problems - especially in the last five years - getting either individuals in my personal life or medical professionals to believe that I have a serious illness. They've mostly not been able to treat it, but that's common with a lot of diseases.

    Other people, especially in the UK, clearly have had a much more difficult time gaining acceptance with regard to their illness. The idea that it's caused by something specific seems helpful with the validation aspect if nothing else, it seems.

    Best, Lisa
  16. floydguy

    floydguy Senior Member

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    There's another huge difference. You've mentioned at least two doctors who have gone through extraordinary lengths to stick with you and try different things. Most of us are floating around without that kind of dedication and assistance from their MDs.
  17. Lynn

    Lynn Senior Member

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    I have had classic symptoms of Canadian Criteria CFS for 14 years. Yet I still doubt myself and often wonder why I am not out making a life for myself. I would like to have the validation that something external might cause these symptoms.

    I will admit that I have been wondering what I will feel like if the test comes out negative. But I went ahead and sent my blood in because if it comes up positive, I may have some options opening up in the future that I do not have now.

    Lynn
  18. garcia

    garcia Aristocrat Extraordinaire

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    Good point floyd!
  19. Otis

    Otis SeƱor Mumbler

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    And I'll add that this may be a foot in the door with infectious disease docs to treat other infections besides XMRV even if they don't want to touch XMRV yet. I've never even gotten a good battery of test of the obvious stuff like EBV. I was running a fever for 6+ months and I got the bums rush our the door with a pat on the head and a "diagnosis" that it must be a medication side effect. Turns out it was probably testosterone supplementation feeding XMRV. I bet I would have tested positive for XMRV then!
  20. ukxmrv

    ukxmrv Senior Member

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    The difference in perspective may be because you have theories and strategies that work for you/satisfy you, Lisa. That's a lucky / unusual position to be in with this disease.

    I've been very sick for decades, tried many things and not got much else to try that looks promising. XMRV may be something that will offer treatment in the future.

    For people with families, it offers hope for their children. Especially for people who have already tried lots of strategies with no answers. There are many, many people for whom the easy answers/suggestion and even the hard ones simply do not work.

    There are entire families striken with this disease who need answers. No one is else giving them answers.

    The goal is treatment and hopefully recovering. There is little else on the horizon for the long term, "experienced with treatment" patient.

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