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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Negative XMRV CFS study with Ila Singh's name on it (University of Utah)

Discussion in 'XMRV Research and Replication Studies' started by Jemal, May 4, 2011.

  1. sensing progress

    sensing progress Senior Member

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    do we know who paid for the Singh/et al study? Was it University of Utah?
  2. kurt

    kurt Senior Member

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    There is just no way Singh is part of an anti-CFS conspiracy, she is diminishing her own research by this finding, you don't do that if you are an unethical person, or someone who would let themselves be paid off. And remember, Dr Bateman was part of this study, two conspirators like that? Not likely. This was simply a real scientific result and they drew what to them was a logical conclusions.

    Hi Sergio, this is great news that GcMAF is helping. IF GcMAF can reactivate your macrophages (WBCs), then of course any infection will be better handled, viral, bacterial, fungi, even cancer cells. So I don't think your improvement says anything necessarily about XMRV, but it does say your CFS involves immune dysregulation. Hope the improvement continues!
  3. ixchelkali

    ixchelkali Senior Member

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    I think we have to take this study seriously. This isn't a schlock piece of work, or a study by people with a hidden agenda. Dr. Singh is one of the top retrovirologists in the world. Lucy Bateman has been working with and advocating for ME/CFS patients for decades. We know she's "on our side." If we start suggesting that anyone who doesn't get the results we hope for has been bought, or is out to get us, or is incapable of good work, or otherwise is not operating in good faith, we will lose all credibility. We have said that what we want is good quality research. Well, we got it. This is a well designed study with a well defined patient cohort. It was meticulously done and documented. It doesn't have the result we hoped for, and that's very disappointing. But if we don't accept the results of good science when we get it, we will start to look like the nutcases that Tsoudero and Chalder and their ilk paint us to be.


    Well, it does address that question:

    And I remember Judy Mikovits saying early on that many of the samples were negative the first time they tested them, so they tested them again and then they were positive, especially if they tested them by culture.

    I had read that GcMAF is an immunomodulator. Nancy Klimas and others have shown that our immune systems are all screwed up, so anything that helps fix that should help us get better. Or maybe there is an as-yet-unidentified pathogen that it's fighting. There are also a whole bunch of infections that have a higher-than-normal prevalence in ME/CFS patients, like parvovirus, Epstein-Barr, HHV6, etc. Even if they aren't the cause of ME/CFS, clearing up smoldering infections seems bound to make us feel better.


    Clearly, we need more research. My great fear is that if XMRV turns out not to be the answer, that interest and funding for research will dry up again. We can't let that happen. Nor can we let the psychobabblists use this against us (and you know they will be making patronizing statements about poor, deluded patients).
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    contamination is what they used for defraitus many years ago, it easy for them to through that line out to disguard cfs studies, conspiracy stuff could be occurring higher then Singh, personally i dont know much about her or cr bateman, but i dont trust the cdc and the like, who knows they could have planted someone in there, wouldnt suprise me, maybe Bin Laden is working in there in disguise and putting rat droppings in all the labs????
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I dont mind if they dont find xmrv in their study, i just hope its legit and that if its proven that xmrv has nothing to do with cfs, then i hope they keep looking, not stop like they have done in the past and then relagate it to another form of depression. Im just very skeptical as this has all happened before.

    cheers!!!
  6. Wayne

    Wayne Senior Member

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    Hi Kurt,

    My OI/POTS improved significantly (probably 30% or so) after I was able to relieve some pressure on my cranial nerves using an atlas repositioning technique called atlas profilax. The improvement was immediate as well.

    Wayne
  7. Wayne

    Wayne Senior Member

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    This is the question that keeps coming up for me. Why oh why oh why oh why oh why doesn't somebody do an actual replication study? Does anybody have a plausible explanation for this? It's just sort of unfathomable to me that it isn't being done.

    That said, it seems this study did improve significantly on earlier studies, but it still doesn't add up for me. The main reason being I don't understand how almost all of the positives from the Lombardi paper could have been contaminated, but hardly any of the healthy controls?

    I seem to be in the minority in that I actually hope XMRV does not turn out to be causative, and that I am not infected with a retrovirus that has integrated itself into my DNA. But I sure would like to see some results that definitively prove it one way or another. I don't think these latest findings fit in that category. I would love to "move on", but I just don't think we're there yet.

    Wayne
  8. Snow Leopard

    Snow Leopard Senior Member

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    How is this not an attempted replication study? They attempted to replicate the findings of both the Lo and Lombardi studies, they even tested some of the WPI patients.
  9. WestOzGirl

    WestOzGirl

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    I don't appreciate my intelligence being dumbed down by another negative XMRV study. I have been living in my body long enough (both healthy and unfortunatley unhealthy) to know that I'm infected with a retrovirus. The disease eitology and epidemiology of ME/CFS has been ignored long enough. We are sick with a retrovirus and co-pathogens. GET IT!!!
  10. Sea

    Sea Senior Member

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    It's an attempt at validation of Lombardi results but it is not a replication. To do that one would have to follow the Lombardi protocol precisely
  11. Sea

    Sea Senior Member

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    "WHY did they only test for 14 samples of the Science study, out of which only TWO were positive?"

    There's been a bit of confusion on this one. They tested samples from 14 patients found positive by WPI. Only 2 of those patients were in the original Science study
  12. Snow Leopard

    Snow Leopard Senior Member

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    How close does if have to be? (How long is a piece of string?) They did attempt to replicate the WPI methods (such as viral culture) as closely as they could.
  13. bertiedog

    bertiedog Senior Member

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    To clarify whether Dr Singh could find any positives she has said the following -


    There is only one XMRV that we know right now. We used our own tests as well as two of the tests that Dr. Mikovits used (a nested PCR and viral culture assays). We studied 300 of our own samples and 14 samples from individuals that Dr. Mikovits has found repeatedly positive in her hands. Our controls behaved as expected, i.e. positive were positive and negative were negative. We did not find any XMRV in any of the samples tested. And our tests are incredibly sensitive. We took extraordinary care and over a year and half to do these studies. My aim was, and remains, to get to the truth so that the patients are helped. I do not think there is any association between XMRV and CFS.



    How can those of you say her assay couldn't find any positives? From the above you are plain wrong. Surely its time we began to face some facts, XMRV just might not be it however much we wanted it to be.

    Sergio's post is very positive and we need to hang onto that and find out ways how we can all be given the chance to try GcMAF to modulate our immune systems to give us a chance to get well.
  14. Jemal

    Jemal Senior Member

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    What does Professor Racaniello know that we don't? :D

    -------------------------
    CreekFeet Kassy Fatooh
    @ @profvrr Thx but now all seem equally suspect: WPI CC NIH &FDA media, Singh assays; who will prove conclusively one or another did it right?
    12 hours ago

    profvrr Vincent Racaniello
    @ creekfeet Stay tuned, there is more to come in the next weeks.
    11 hours ago
    -------------------------

    So more news is coming soon? Could be negative or positive of course...
  15. lansbergen

    lansbergen Senior Member

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    Right. I do that too but with another immunomodulator.

    As I do not take anything else and do not dieet it must be the immunomodulator making the immunesystem be able to fight it better.
  16. eric_s

    eric_s Senior Member

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    Something useful about headache

    That's a strange title to my post and usually i don't like it if people say that even bad things have something good about it.
    But this morning i woke up with a headache and that familiar feeling of dry eyes plus a sick feeling in my stomach. Usually i don't have these things, luckily i only get them after pushing myself too hard, physically.

    Yesterday at night, i went out. It really wasn't a day to celebrate and i don't like having to laugh etc. when something bad just happened, but here in Alicante i know someone from Switzerland and because now that i'm back here after some weeks and have found that she moved, i texted her and she asked if i want to go out. I thought ok, i'd like to do something quiet, but i was really not in a mood to go to a party. But later she told me it's her birthday and i didn't want to decline, so i went. Sometimes it's too crazy.

    Well, anyway, XMRV really changed a lot for me, because even before that, i never accepted anyone saying ME/CFS is not physical, but now, with XMRV, it looked as if we would finally be validated and people could no longer deny this and we would be close to a good treatment. I'm not saying we have to forget XMRV, but certainly it was not very good news.

    Yesterday i read a blog post here where somebody asked herself wheter it's all in her head, she just needed to push herself more etc. I hope we will never hear something like that from doctors or other healthy people again, but thanks to this sh...y headache this morning i'm reminded that ME/CFS is physical without any doubt. And so i know that i will not stop pushing for more research in the right direction and that we are right and that sooner or later (and it will definitely be sooner, if we act instead of just wait for people to save us) the truth will be found. Even if it was not XMRV, which remains to be seen, there are plenty of other interesting paths to follow, like the spinal fluid proteins, brain scans, the successes of antiviral interventions, the immunological abnormalities etc. One of those or maybe all of them will lead to the truth about ME/CFS, i believe. We just have to keep on pushing for more resources to be put into good research in whatever way we can.
  17. FancyMyBlood

    FancyMyBlood Senior Member

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    Hi Jemal,

    I've been walking with this speculation for months now. I know it's just speculation and it's probably just a silly idea, but I'm going to write it here anyway. One thing that was debated heavily were the statements of Coffin at the State of the Knowledge conference. I'm going to say this out of my memory, so please anyone correct my if I got it wrong;
    When he got the question why patients kept testing positive with the antibody tests, he answered that it could be other virus(ses) reacting with the XMRV assay. He also said he thought they should leave XMRV, at least the GRV they knew as XMRV. This particular quote struck me because he also said they should keep looking for (GR?) virusses in ME/CFS. This could mean he had another contamination paper in the publishing process, but it could also mean he knows something about another virus (leave XMRV, at least the GRV they knew as XMRV). Maybe it's nothing, maybe both.
    But what strengthened my speculation were the words of prof. Racaniello in WSJ yesterday:

    I'm not a virologist but to me it looks like there is at least something in our blood. They only need to search what that something is!
  18. eric_s

    eric_s Senior Member

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    I think they tested 14 samples from persons the WPI found positive and 2 of them were in Lomardi et al. It's better you check that again before believing me, but i think it was that way.

    There are some questions that come to my mind right now.

    Ila Singh had found XMRV in prostate cancer. What tests did she use there? Did she look in blood or only in prostate tissue? Sorry but i'm too tired and lazy to check by myself right now. She did not find any XMRV in the WPI's "positives" but i think she reported to correctly identify the positive controls. What type were those? Spiked samples?
    If so, what could be really interesting, would be for her to test the blood of some of her XMRV+ prostate cancer cases. I'm no scientist, but i would like to see someone's assay correctly identify a clinical sample.

    There seems to have been a new Switzer, CDC study http://www.plosone.org/article/info:doi/10.1371/journal.pone.0019065#abstract0
    and even though they say they don't find an association between XMRV and prostate cancer, they also say that they have found it and that it was not contamination.
    So this would prove XMRV is a virus, not just false positives resulting from mouse material and that it's out there in the human population. Which would, for example, make Coffin's statement, that XMRV should be left behind, seem quite wierd and to me, even irresponsible.
    If they say what they've found does not mean there's an association between prostate cancer and XMRV, then i think it can only mean that there's XMRV in the general population at that percentage. So that would mean the 0/0 studies are either wrong, were very unlucky in their cohort selection or XMRV does not occur everywhere.
    Actually, to me, it seems like big news the CDC has found XMRV, even if i don't see a big reaction to it yet.
    Unfortunately their study does not say anything about healthy controls.
    What i'd like to see now, is Switzer using his blood assay from the negative ME/CFS studies on those XMRV+ prostate cancer cases. That would show what they are worth. So, i'm waiting...
  19. eric_s

    eric_s Senior Member

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    And one more thing, even though it might make me unpopular, at least in another place.

    I think it's time for the WPI to give a solid reply to all of this. I've donated to them, so have many of us, they want us to visit their clinic once it opens and they're asking us to become an "advocate for answers" (i've signed up by the way).

    I will support them all the way with everything i have, but i think it's really time for them to show us some proof or very solid arguments, if they want our support. What about all that unpublished work? And what about that idea, for example. Why don't they offer to test 50 or 100 samples provided by a trusted, non-WPI-affiliated patient organisation or ME/CFS doctor. Half of them healthy controls and the samples would have to be blinded. Would that be very expensive? I don't think so. Ok, it would cost them time, but it might also get them a lot of additional support.
  20. toddm1960

    toddm1960 Senior Member

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    The question that stands out to me is, why does another negative study get published within weeks of completion and positive studies remain unpublished for years? Who in the publishing industry has decided postive studies are wrong and negative studies correct? Something or someone is holding back positive studies, we know they are out there, why aren't they published? The only way to compare the two is to see both.......this is just like 1992, we're not seeing both.

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