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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. S

    HIV/AIDS Denialism

    Leitwolf -- I do agree that we have a lot to figure out still regarding HIV/AIDS, and I suspect that retroviruses in general still have a lot more surprises in store for us generally. Some groups of people do seem to have relative immunity to it and have been studied some, and any disease...
  2. S

    HIV/AIDS Denialism

    Yeah, I should have mentioned South Africa and other places in the world where denialism does very real harm to vast numbers of people. For people trying to find an answer to AIDS that doesn't involve, you know, a virus spreading through the population and killing people, AIDS denialism and the...
  3. S

    HIV/AIDS Denialism

    Dunno that it's widespread, really but the denialists are loud and very good at trying to spread their message. I had the privilege of working in a (non-medical) job with many, many HIV-positive coworkers and customers for a long time, and we all tried to dig into this particular thing...
  4. S

    Narcolepsy is an auto-immune disorder

    Thanks for the link! I had been missing from the internets, so I missed this, and was happy to see it. Exciting, honestly -- they'd already found some pretty solid evidence that narcolepsy is autoimmune, but this is a really important finding both as confirmation and as identification of an...
  5. S

    XMRV and gender ratio in CFS

    Just to add a hopefully illustrative anecdote -- I have a male relative with symptoms similar to mine (though his have developed over time to be more extreme). He was railroaded into a psych diagnosis for a long time by his doctors -- though to be fair, the shrink he wound up with disagreed...
  6. S

    XMRV and gender ratio in CFS

    There are a number of issues here -- if we're talking about XMRV specifically, it's true that it would be unusual to see a vastly different rate of infection between men and women. So a major question there is whether diagnoses tend to be gendered. And I think the answer is a very likely yes...
  7. S

    XMVR Mutation rates and WPI decision to abandon PCR for identification

    parismountain -- not dumb at all. It's actually really complicated -- so this will be only mostly correct, but should clarify a bit, hopefully. I'll be really broad, because I don't know your background at all, and this is sort of a connection point for a lot of biology, so I want to try to give...
  8. S

    XMRV Replication Studies

    Yep. Theoretically, PCR is a very powerful tool. But lots of people -- even scientists, sometimes -- seem to think that if something is very sensitive and very specific for analyzing a sample, that that's the end of the story. It's not. You have to make sure that your samples are a good...
  9. S

    Zeo sleep coach device

    muffin -- thanks for taking my skepticism as intended. Honestly, it sounds to me like it's worth asking about in much greater detail. Is there a way you can talk to an actual sleep doctor? Preferably one who knows something about sleep disorders other than apnea? Because I'd be shocked if they...
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    Why would groups try to replicate XMRV study NOT using WPI techniques?

    If you get your chocolate cake recipe from auntie, and you try it once the way she wrote it down to see if it's any good, then you have a much better basis for fiddling with it to see if there are other ways to get the same tasty cake with a different attachment on your beaters. If you start out...
  11. S

    Zeo sleep coach device

    This is very strange. Are you outside of the US? I've got a relative with narcolepsy with cataplexy, and it's a prime suspect for me as well, so I've spent a lot of time looking into it. I've never heard of "Idiopathic Narcoleptic Sleep Disorder" -- there's idiopathic hypersomnia, and there's...
  12. S

    Is getting well about money????

    I seriously doubt that money makes a whole lot of difference for anybody's particular treatment options, since there just aren't any known ones in the absence of a firmer understanding of diagnosis and disease here. But I will say that I often wish I had access to plenty of cash just so that I...
  13. S

    The Fight is on...Imperial College XMRV Study

    Yeah, they did pretty well, I think, though the description of CFS itself is lacking. Wonder what the word limit for the writer was. What's funny about it to me is that their article is short and more than a bit snarky and yet manages to sum up the scientific dispute pretty well, as opposed to...
  14. S

    Cold weather response?

    I've found that I'm a lot more sensitive to both extremes. Cold used to be my favorite -- I spent tons of time running around in the snow, and as a kid I loved swimming in the ocean -- which in northern CA, isn't something most people do for very long, if at all. When I lived back east for a...
  15. S

    Isolation... from a rookie

    I still struggle with the isolation myself, honestly. I think it's going to remain a struggle for me, though it's certainly one I feel better equipped now to push at and challenge than I did when I was first getting really sick. I got sick in the fall a couple of years ago, and that winter was...
  16. S

    The Fight is on...Imperial College XMRV Study

    Well, in all fairness, they quite possibly drilled holes in people's skulls to let out the evil spirits. No, really. People did that. I think there are good uses for psychology. I also think it's disturbing that the pitfalls in diagnosis and treatment don't seem to be causes of great concern to...
  17. S

    The Fight is on...Imperial College XMRV Study

    I missed that, sorry. For me personally, I'd have to think for a bit about what, specifically, to ask them. Most of my concerns center around the validation of their PCR assay, while they seem to feel that their validation was sufficient -- I'm not really sure how to proceed from there...
  18. S

    The Fight is on...Imperial College XMRV Study

    Orla -- good points. I'd seen that excerpt, but then had forgotten about it again; it's an interesting one. I'm not really sure how to read it -- was their rush to get the study out based on this feeling of wanting to quell patients' searches for antiretrovirals, or was that an additional point...
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    The Fight is on...Imperial College XMRV Study

    If I'm remembering right, EDTA is a pretty common thing to use in DNA extraction to stop the action of enzymes in the mixture that would otherwise degrade the DNA -- I've used it in this before, though I don't know if there are specific cases where it might be a bad idea for some reason...
  20. S

    The Fight is on...Imperial College XMRV Study

    Man, I'm sorry. I was getting all over the place with language and it probably made things more confusing for a lot of folks. In this study, the positive control used a plasmid that included the full XMRV genome, which means essentially that it's a little chunk of bacterial genome subcloned...
  21. S

    The Fight is on...Imperial College XMRV Study

    Honestly, I think the WPI response is fine. It's somewhat aggressive, but it'd be surprising given some of the statements they're responding to for them to not seem a bit PO'ed. I know I would be -- several of the quotes seen back in this thread are pretty much scientific fightin' words.
  22. S

    The Fight is on...Imperial College XMRV Study

    You're right, of course, I shouldn't have said anything about relative to the total DNA. If [XMRV] itself is about the same regardless of the other constituents of the sample, the primers shouldn't really care about the other stuff much for sensitivity purposes -- that is, if you've got x copies...
  23. S

    The Fight is on...Imperial College XMRV Study

    Well, it depends. I don't know what initial concentration those bands represent. But it does make sensitivity more of a concern for me. I sure wouldn't feel confident in using a signal that weak as my -only- positive reference, but maybe they have reasons to feel more confident about it. To be...
  24. S

    The Fight is on...Imperial College XMRV Study

    Kurt -- I just disagree on several of these points. I do expect labs to "do their own thing", to a degree. But using totally different tests can give totally different results, because the testing is still squishy. We've had long, long discussions on this forum about testing being squishy...
  25. S

    The Fight is on...Imperial College XMRV Study

    Saw it, and am pondering a bit. IF they could get their concentrations of +plasmid to what would be expected in a positive sample relative to other DNA, I don't see a problem. Of course, that's a pretty unweildy IF, given that we have no idea what sorts of viral loads, and in what sorts of...
  26. S

    The Fight is on...Imperial College XMRV Study

    Very, very interesting find. I hadn't looked at the figures, but damn, that is pretty faint. I mean, faint bands happen, but the positive control -- here, straight-up plasmid -- is the best amplification you're going to get. I sure wouldn't be confident in my assay if that was the best...
  27. S

    The Fight is on...Imperial College XMRV Study

    I'm unclear on whether it would really unblind the study, actually. They wouldn't be running vials of whole blood, they'd be running vials of extracted DNA. Which looks surprisingly like snot if you precipitate it, but in solution isn't really obvious, honestly. It wouldn't necessarily be an...
  28. S

    The Fight is on...Imperial College XMRV Study

    I don't really agree or disagree, honestly -- I'm kind of neutral on PLoS. They're reviewing for technical merit only. Something can be a fine experiment on its face and still not mean much in the grand scheme. Their goal of open access, I quite like, and they're also trying to get around the...
  29. S

    The Fight is on...Imperial College XMRV Study

    srmny -- I'm not sure I'm understanding your question, but let me try to see if I can clear it up a bit -- it appears that the Imperial College study did not have a control group, at least not in terms of "healthy people who don't have CFS symptoms", no. They used water, it seems, as their...
  30. S

    The Fight is on...Imperial College XMRV Study

    Here's what I see so far as potential problems with this study: - they didn't use the same methods as the original study. Both used nested PCR, but PCR is a tool, not a test. The tests themselves -- the primers used, etc -- are different. That may or may not make a difference in accuracy, but...