Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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XMRV Testing-FYI

Discussion in 'XMRV Testing, Treatment and Transmission' started by InvertedTree, Oct 9, 2009.

  1. kat0465

    kat0465 Senior Member

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    I think Dr. Nancy Klimas recomended we wait a few Months to get tested. she said they will have a much more accurate test coming down the Pipe. and it would be worth it to wait.
    I will be waiting, after not working for over a year, 2 hurricanes in 4 years. and paying ou of pocket for lyme testing & some others, im so broke i can't pay attention(lol Brain fog?) it's ben almost 20 years since i've gotten sick, guess another 6 months wont matter, although i am excited about the test.
    Kat
     
  2. Kati

    Kati Patient in training

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    Mandy, I haven't been sick that long but also feel unbearably ill and would rather be tested sooner than later. I may wait until Dr Mikovits does her lecture on January 22nd, but I got the test kit from VIP DX at home, waiting for the blood to go in the tubes.

    Hang on. Like Nancy Klimas said, it is not the time to give up.
     
  3. SickOfSickness

    SickOfSickness Senior Member

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    The VIPdx voicemail still says it takes 3 weeks for them to send the kits.

    Re: cancer, I was reading how CFS people get colds a lot less than healthies, because their immune systems are overactive. So we might be safer on that front. Eat/drink a lot of antioxidants if you can, like raw vegetables esp green leafy ones and avoid certain foods and things.
     
  4. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    > but just can't remember they had a cold

    Not so
     
  5. SickOfSickness

    SickOfSickness Senior Member

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    Ugh they emailed and said "we are currently 6 weeks back order on shipping of kits". Does anyone have an extra or know where I could get what's needed?
     
  6. Countrygirl

    Countrygirl Senior Member

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    Second time lucky!

    I haven't had a cold in the 30 years I've had M.E, so I don't agree.

    (This is the second time I've sent this message. Don't know where the first one went. :( )
     
  7. MEKoan

    MEKoan Senior Member

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    One cold in 30 years.

    Peace out,
    Koan

    Peace back in,
    I think the "don't remember" was meant as a joke.
     
  8. Alice Band

    Alice Band PWME - ME by Ramsay

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    Sorry Levi,

    I alternate between "no colds" and "many colds" every 7/8 years or decade or so.

    Early on I remember Cheney thinking along the lines of moving from the "no colds" to the "many or normal colds" as being good and on the way to recovery.

    Didn't work for me.

    I've just not had a th1/th2 profile done to compare each phase
     
  9. MEKoan

    MEKoan Senior Member

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    I've always considered this a most interesting but largely ignored difference in patient groups.

    It simply is not normal to have one flu/cold in 30 years.

    I've had plenty of bacterial infections but zip viruses except everytime I'm tested I test pos. for something new or renewed.
     
  10. Robin

    Robin Guest

    Really? I went from no/few colds to 3 bacterial infections and 4 viral infections (2 of them colds) in six months, and then relapsed very badly. I'd be happy to take the "no colds" back. :) Honestly sometimes i wonder if Cheney just makes stuff up.

    I think some of it is exposure, too. I'm around children who basically live in a petri dish all day (elementary school) and pretty much come to my house and spew their pathogens liberally all over the place. My sister is healthy and gets the bugs too, from her kids. Less exposure = less viruses.

    My healthy boyfriend, incidentally, has had exactly one cold in 10 years! He can get sneezed on and just shrug it off. We worried about XMRV transmission (I still haven't been tested) but I joke that his immune system would laugh at it!
     
  11. spit

    spit Senior Member

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    Just because I also think it's interesting, I'll add that the shift to "no colds" for me was really stark. I have been one of those people who caught every sniffle for most of my life; if somebody three miles away so much as uttered the word "strep", I got strep throat, and I remember having one year where I swear I spent more time with a cold than without.

    I got a nasty fever -- also unusual for me, I almost never have a fever -- and then I got whatever this chronic thing is, and I hadn't been sick since until I got the swine flu a few weeks back. That's in spite of being exposed to all sorts of stuff in my household -- I even evaded the swine flu once, during the summer, when my partner had it. Got it over Thanksgiving instead, and it was nasty, but seriously -- first time I've had so much as a sniffle since I got sick.

    And it was weird, too -- as soon as I was getting on the upswing with the fluey stuff, I got a massive and kind of alarming case of hives, which refused to respond to antihistamines of any kind. I could only control it via very, very heavy application of cortisone (not generally recommended, but it was my last ditch effort before heading to the ER).

    Dunno what my body thinks it's doing, but my immune function is all over the map now.
     
  12. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    > Honestly sometimes i wonder if Cheney just makes stuff up.

    Though I am not certain, I think you might be onto something...
     
  13. spit

    spit Senior Member

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    Also:

    Eric Johnson: re: PCR, my understanding -- and my practical knowledge is limited, biochem really wasn't my area -- is that once a particular assay is well validated, it's damn sensitive, but that unforeseen problems can arise until the best target locus is found and the best primers are designed. Until then, primers may have poor attachment, or anneal to each other, or anneal at unfavorable temperatures in relation to other aspects, so on. Once all of the kinks are worked out -- best locus, best primers, best temperatures, best number of cycles -- PCR is very highly sensitive, but designing a test is different from running one that has already been designed, and it can take a while to figure out the details.

    I don't know at all what the details are in the specific PCR run by WPI, or how they validated their assay, but it's clear that they got some negatives through their PCR that were positive through other means, which is troubling. If the other positives were all through antibody testing, though, it could also mean that the PCR was fine, and there's none of that particular viral DNA in the samples -- could mean latency, or past contact, or virus hiding out somewhere other than the blood during some stage. I can't remember whether some of the PCR negatives were then cultured and found positive or whether they were all found positive through antibody testing; those have very different meanings.

    Of course, "sensitivity" can be misused -- if it's sensitive diagnostically, it will catch the vast majority of cases, but it's possible for it to be sensitive analytically (catch all positive samples) but not necessarily diagnostically (the target antigen isn't present in all samples equally, samples aren't homogeneous, might be in some cells but not others at certain stages, etc). If there's some reason that the viral DNA wasn't in the DNA samples they had to run through PCR, the most sensitive PCR assay can't, of course, find it.

    And again, I'm no expert here, so if somebody more familiar with biochem has any corrections of the things I've undoubtedly messed up, please do so. I was doing ecology level stuff before I got sick, so I've had some basic coursework and labs, but I could feel more confident talking about fall-run chinook salmon runs than I can feel about the details of PCR primer design or whatnot. :)
     
  14. SickOfSickness

    SickOfSickness Senior Member

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    Apparently it's not a hard and fast rule that PWCs don't get colds, it is just a trend.

    I feel like I catch things easily if I am also stressed in any way, which can be as simple as, I just walked around the mall and/or it was cold outside so I was shivering. If I am staying at home mostly then of course I'm less likely to catch something, but I don't think it is only due to the number of people I'm exposed to, but something with my immune system being in its better non-stressed state.

    Well, I hope that my getting colds doesn't mean I don't have CFIDS. I also read that CFIDS tends to have very low sed rate (blood test) of 0 to 3 and mine wasn't.

    Anyway, I think XMRV is a likely answer for me, which is scary. If not XMRV then maybe they'll have to work more and discover another virus or few before I get an answer.
     
  15. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    Spit,
    I am not 100% confident in my memory -- Ive only designed and ordered primers once, and I had help in doing it. But I recall ensuring that the G + C content was appropriate for the annealing temperature I (we) planned to use.

    I dont recall, though, aligning the primers to check whether they would be liable to form primer dimers. I cant remember, are primer dimers caused by annealing of two copies of the same primer, or by annealing of the "opposite" primers (ie, one forward primer and one reverse).

    Since the primers and genomes are published, one could check them for potential problems. I dont know if I have enough practical knowledge though.
     
  16. spit

    spit Senior Member

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    Eric -- right. When I've worked with it, I've had help, too, and my time learning the most about practical PCR methods was also the time I was getting sick, so it's all a little blurry for me. I would assume that they'd be using very solid software that would specifically exclude primer dimers where feasible and would find a really appropriate match for good agreement of annealing temps, but testing that all out in reality as opposed to theoretically is still a really important aspect of the design, so far as I'm aware. Especially with a brand new nested PCR assay, I could see the possibility that one or the other set of primers could go awry even with all of the genome carefully considered and the temperatures matched. Software and real-time and so forth are making PCR easier, but I suspect we both know from lab experience that there are lots of ways for specific issues to be really finicky in unexpected ways sometimes. Figuring those out and correcting for them can be a real hassle.

    I haven't honestly looked in a while, but I feel like I recall that some of the PCR was aiming for parts of env, which if I remember right can also be fairly variable, or at least it is in HIV. If there's some variation in the primer binding site, that could also be an issue, though they should be able to find that out easily if they sequenced the PCR- positives.

    I'm sure they've considered all of these things with much more skill and knowledge than I have, but I'm not sure to what extent they've found them to be problems or insignificant or been able to correct for any that might reduce sensitivity. If they were able to culture from samples that had been PCR-, though, I'd guess that there's a kink somewhere damaging PCR sensitivity that they still need to figure out. If the other positives were all antibody, then the stages of infection and the chances that active or latent virus is hiding out in CSF or someplace should be looked at to improve the overall diagnostic sensitivity, which is really true regardless and I'm sure is probably already on the "figure this out" list.

    I also can't recall how many samples were sequenced, either, but I know they did some sequencing, and I'm far less worried about specificity with the nested PCR -- they definitely found what they were looking for strongly enough that I can't argue with the positives in the research, unless there was contamination or somesuch. The negatives later corrected do trouble me, and I'm sure they trouble them, too. Finding something in research where you've got the means to prove it in multiple ways is just different from finding it in patients, too, so though I think the research results are solid, I'm dubious about the diagnostic use of the tests until they're getting closer to the same answers via different methods.
     
  17. spit

    spit Senior Member

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    And before I rambled myself all over the place, I meant to say that I don't really have the practical knowledge to take a critical look at their primers and genomes and general design, either. I'm sure lots of folks have been doing that, but damn, I wish I could be a fly on the wall for some of those conversations. Not knowing what directions they're even thinking in is hard, though of course I understand why they keep quiet until they have some confidence in any insights.
     

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