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HGRVs - Constructive general discussion - for exploring HGRV research

Discussion in 'XMRV Research and Replication Studies' started by Bob, Oct 25, 2011.

  1. Daffodil

    Daffodil Senior Member

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  2. Daffodil

    Daffodil Senior Member

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    i just realized the title of this thread is "constructive general discussion". i guess my swearing is not very constructive, is it LOL
  3. leela

    leela Slow But Hopeful

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    In this case, Daff, I'd say it is indeed constructive! The whole "euthanasia by stealth" perspective can evince nothing but a bunch of expletives, especially if you're one of us!
  4. Daffodil

    Daffodil Senior Member

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  5. Daffodil

    Daffodil Senior Member

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    isnt it funny? a NEW RETROVIRUS TRANSMISSABLE BY SALIVA and no one is even talking about it on TV? AM I INSANE or is this bigger news than anything thats on tv right now?

    is this a JOKE?

    cuz its FKING HILARIOUS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
    RL_sparky likes this.
  6. alex3619

    alex3619 Senior Member

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    Hi Daffodil, the problem as we are all aware is that for most the whole HGRV issue is disproved. Some people failed to find it. Some other people failed to find it. Those in authority said it wasn't there. Therefore it isn't. That is the kind of reasoning in the media - spin over substance.

    HGRVs are not proven. There are questions hanging over them. They are also not disproven. Its an open question. The media and most commentators have taken the failure to prove HGRV involvement as evidence of absence. It could be right, but that position is also not proven. This story will take a long time to unfold I think, especially since most who were interested once have lost interest, and funding is likely to dry up.

    I do hope that Roche puts more funds into their positive finding though. We need answers. Answers twenty years ago would have been too slow and too late for so many of us. Twenty years on the human cost has just got bigger. I don't think we can see the end of this in sight, but I think we can see the end of the beginning. Who knows where it will lead? In many ways it is better if HGRVs are wrong, so I have no problems if that can be demonstrated conclusively instead of suggestively.

    We still need the Lipkin study.

    Bye
    Alex
  7. Daffodil

    Daffodil Senior Member

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    alex....lipkin is finding retrovirus too, just not sure of the details.

    you are right..there is no end in sight, at least not for the very sick. i have been on the only treatment there will be for a long time..and i have been on it for 2 yrs. i am still gravely ill.

    dr. levine in NYC told me yrs ago that if i was lucky, i would experience 10 - 15% improvement in my life. as much as i despised her for saying it, looks like she was right.

    perhaps i should try and accept that i will be a casualty...but that would just lead to more depression and suicide.
  8. dannybex

    dannybex Senior Member

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    Sue,

    I don't understand why you said "on the only treatment there will be for a long time.." ???

    There are literally dozens of treatment options, depending on one's individual circumstances and exposures, both bacterial/viral/fungal and environmental, etc.. Many folks on other parts of this forum are seeing decent improvements by trying some of these options. As Alex says, the whole HGRV issue is unproven...it could go either way. In the meantime you could look into some of these other treatment protocols or suggestions. Many of them are backed up by research you can find on pubmed.

    And I wonder, have you ever questioned if Dr. Levine's opinion was wrong? Just because she was so bleak in her opinion, doesn't make it the truth.

    Just a suggestion. :)

    Dan
  9. Daffodil

    Daffodil Senior Member

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    Dan.....i have been tested for everything and am negative for all other infections. I have nothing I can treat. The only thing left is GcMAF and DeMeirleir doesnt even use that on people with high IL-6 like mine. I have done antivirals. There is nothing left. I cannot move to take Ampligen and cannot afford it anyway. So, it's looking pretty bad for me. I can no longer get ot of bed at all, but to go to the bathroom and sit at the PC for 1 hr max.
  10. dannybex

    dannybex Senior Member

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    Hi Sue,

    I'm sorry you're very sick. I am too, so take this with a large grain of salt, but I was thinking more about non-drug options, in my previous comment.

    Regarding high IL-6, the following studies suggest that omega 3 fatty acids, vitamin b12, vitamin D, riboflavin (b2), and the bioflavanoid quercetin all help lower or normalize IL-6 levels:

    "Omega-3 fatty acids have strong anti-inflammatory effects, suppress interleukin 1 beta (IL-1 beta), tumor necrosis factor-alpha (TNF alpha) and interleukin-6 (IL-6)..."

    http://www.ncbi.nlm.nih.gov/pubmed/18296320

    "...IL-6 production induced by PHA and ConA on Day 4 of the culture was suppressed by an average 60-70% when methyl B12 (80-8,000 ng/ml) was added to the medium..."

    http://www.ncbi.nlm.nih.gov/pubmed/1339917

    "Riboflavin inhibits IL-6 expression...Riboflavin is a water-soluble vitamin that reduces the production of proinflammatory mediators and oxygen radicals."

    http://www.ncbi.nlm.nih.gov/pubmed/18714675

    "Quercetin inhibited the production of Ang II -induced interleukin-6 in the culture in a dose-dependent manner."

    http://www.raysahelian.com/interleukin.html

    This is just a wild guess of course, but perhaps some of the drugs you've been using have depleted some of these nutrients? Just guessing of course, but it should be noted that Jamie Deckoff Jones and her daughter have been using both b12 and folate to improve their methylation (detoxification) and have seen improvements by doing so.

    Hope you feel better and stronger during the coming year.

    d.
  11. Daffodil

    Daffodil Senior Member

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    hi danny:). i am sorry you are in the same boat. thanks for the suggestions.

    i actually seeing a naturopath on monday cuz i will be starting the myer's cocktail or glutahione...not sure if i can afford both. i have never seen a naturopath before and have always avoided that sort of thing...but its the only place i can get the IV stuff. who knows..maybe the nutrients will help for a little while.

    its so scary to run out of options and just wait for a crisis to happen.

    i did ask dr. enlander and apparently, he still uses gcmaf on people with high IL-6.

    i watched demeirleir's presentation and it doesnt look like he is getting such great results with gcmaf. only like 1/3rd of people report improvement in cognition i think. doesnt sound good to me. but everyone seems excited about it so maybe i am missing something.

    everyday i think..what if i were someone very important? like the president? what if my parent was a great scientist who had connections? could i have my blood tested with cutting edge equipment? get biopsies? could i get well if i were someone famous and rich?



    xoxo
  12. Bob

    Bob

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  13. currer

    currer Senior Member

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    I wonder why the researchers focused on non Hodgkins lymphoma, as opposed to lymphoma generally? Because Hodgkins lymphoma is a cancer of the lymphocytes just as is non-Hodgkins lymphoma.

    So a suggested correlation between CFS outbreaks and a rise in lymphoma, which shows up within a couple of years of the CFS epidemic.

    The researchers focused on the cancers remarked on by the original doctors present during the outbreak.
  14. currer

    currer Senior Member

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    http://www.ncbi.nlm.nih.gov/pubmed/20032425

    Immunological similarities between cancer and chronic fatigue syndrome: the common link to fatigue?
    Meeus M, Mistiaen W, Lambrecht L, Nijs J.
    SourceDepartment of Health Sciences, Van Aertselaerstraat 31, 2170 Merksem, Belgium.



    Abstract
    Cancer and chronic fatigue syndrome (CFS) are both characterised by fatigue and severe disability. Besides fatigue, certain aspects of immune dysfunctions appear to be present in both illnesses. In this regard, a literature review of overlapping immune dysfunctions in CFS and cancer is provided. Special emphasis is given to the relationship between immune dysfunctions and fatigue. Abnormalities in ribonuclease (RNase) L and hyperactivation of nuclear factor kappa beta (NF-kappaB) are present in CFS and in prostate cancer. Malfunctioning of natural killer (NK) cells has long been recognised as an important factor in the development and reoccurrence of cancer, and has been documented repeatedly in CFS patients. The dysregulation of the RNase L pathway, hyperactive NF-kappaB leading to disturbed apoptotic mechanisms and oxidative stress or excessive nitric oxide, and low NK activity may play a role in the two diseases and in the physiopathology of the common symptom fatigue. However, in cancer the relation between the immune dysfunctions and fatigue has been poorly studied. Immunological abnormalities to such as a dysregulated RNase L pathway, hyperactive NF-kappaB, increased oxidative stress and reduced NK cytotoxicity, among others, are present in both diseases. These anomalies may be part of the physiopathology of some of the common complaints, such as fatigue. Further studies to confirm the hypotheses given here are warranted
  15. Bob

    Bob

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    I'm just going to explore a paper here that I think is interesting... It's a random paper that I found some time ago, and have just re-read it.
    Please excuse me, because this is quite a rough and vague discussion about why this paper could be interesting, picking out vague connections that may or may not be significant...

    Detection and immunochemical characterization of a primate type-C retrovirus-related p30 protein in normal human placentas.
    Lois et al. 1984
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC391952/pdf/pnas00621-0247.pdf

    "We now report that normal human term placentas contain
    a protein antigen of -30,000 daltons (under dissociating/
    reducing conditions) that is physicochemically similar to
    reference murine and primate type C retrovirus p30s and
    antigenically cross-reactive with p30 of the SSAV/GaLV
    primate retrovirus group
    ."

    12 out of 14 Normal Human Placentas were found to "contain a protein or polypetide [...] that is antigenically cross-reactive with p30 core protein of the simian sarcoma-associated virus/gibbon ape leukemia virus [GALV] primate retrovirus group and is physicochemically similar to reference murine and primate retrovirus p30s."

    (Interestingly, GALV is supposed to be very similar to XMRV, and it is also what the CDC are said to have contaminated DeFreitus' samples with.)

    Now where have we come across the p30 protein before? I think it was in relation to Judy Mikovits' slide-gate research. I'm not sure if I am right about that? I need to look it up to check the details.
    "P30" seems to be a very similiar, but not identical, protein, in many different viruses (i'm not certain about that tho).
    If all p30s are very similar, then that makes this research very interesting.

    In this paper, they seem to be suggesting that this could be human endogenous gene expression, rather than infection from an exogenous virus, or at least that is what they are interested in investigating:
    "This finding might lead to an understanding of endogenous type-C gene expression in humans."

    I guess this study is a bit out of date because of the human genetic sequencing that has been carried out since 1984. They should know by now if humans carry endogenous type-c viral DNA.

    But whether it is an endogenous or exogenous viral protein, it's interesting research...

    Now why does the following sound familiar? Because JM found budding retroviruses revealed under electron microscope:
    "Electron microscope studies reveal the presence of budding type-C retrovirus like particles in virtually every normal human placenta examined."


    It goes onto say that:
    "Recent investigations in molecular biology (13-16) indicate that normal human chromosomal DNA contains nucleotide sequences that are homologous to the genes of retroviruses previously isolated from mice and primates and have the structure of an integrated, but incomplete, type C retrovirus"


    It's all food for thought.
    The suggestion here is that the presence of the p30 protein could suggest that humans have type-c endogenous retroviruses, or partial retroviruses, that can be expressed in certain circumstances, such as in the placenta. These endogenous human retroviruses are similar to primate and murine retroviruses.
    It would be interesting to see how this info corresponds to more up-to-date info on the human genome, and whether the p30 protein can be expressed in human by endogenous retrorviral DNA.

    How is all of this relevant?
    1. If endogenous viral particles or proteins are being expressed within us, then I think that there is a possibility that they could interact with exogenous viruses if we are exposed to them, especially as the endogenous particles are so similar to murine viruses as this research suggests. I think Jamie Deckoff Jones says this type of event can happen.
    2. If this paper detected exogenous viral particles, then it seems very similar to JM's research.
    3. If the P30 protein is a consequence of endogenous viral gene expression, then this could be relevant to JM's work, in which she detected p30 proteins.

    I think that the p30 protein is relevant to the work that Judy was doing (i'll have to look for her work again, to make sure i'm correct about that), and opens up the possibility that she was detecting the same p30 particles (either human endogenous or an exogenous infection).


    This research paper led me to the following research paper which finds human endogenous retroviral sequences on the Y chromosome:

    Human retroviral sequences on the Y chromosome
    J Silver et al 1987
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC365247/

    This got me thinking further... What if the X chromosome contains certain endogenous sequences that could interact with our immune system or with MLVs?
    Would this make women twice as likely to get ill (if this was part of the mechanism of getting ME) because they have two X chromosomes? Or would their chances of getting ill be increased more than that, leading to a higher exposure to risk? i.e. twice the number of chromosomes could increase the risk of illness by four times.
    What is the ratio of men to women with ME? I think it's said to be 4:1?
    What if the risk of becomming ill is squared with each extra x-chromosome? So having two X-chromosomes means 4 times the risk of having one X chromosome. This would make the risk for women four times greater than for men. i.e. 4:1

    My maths might be a bit dodgy there, but could this be a possible answer that would be worth investigating?


    These are all very rough and ready thoughts, but i'd be grateful for any thoughts or feedback?
  16. Bob

    Bob

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    My brain is over-stretched today, and I'm still trying to read and interpret the paper...
    But there's a lot in it, and the more I read, the more interesting it is...

    Here is another bit more that caught my eye:

    It's talking about segments of normal human chromosomal DNA... The paper says:

    "The human DNA segments contain sequences that have the structure
    of an integrated but incomplete type C retrovirus and
    show homology to the polymerase (pol) gene of BEV and to
    the p30 gag, p15 gag, and polymerase genes of Moloney MuLV (14, 15).
    "

    Here the Moloney MuLV crops up again, which it has many times in association with XMRV.
    Two of the known XMRV strains are said to be recombinations of XMRV and Moloney virus.
    So, to me, this makes the possibility of reactivity between human endogenous retroviruses, and MLVs even more likely.
    If a human is infected with an MLV (not an MRV), or MLV particles from vaccines, could that MLV recombine with human endogenous particles, produced from such human endogenous retroviral genes as the those homologous to Moloney MuLV? And in doing so, could this create a novel infectious human retrovirus.

    Or, otherwise, maybe human endogenous retroviral particles, which are homologous to MLVs may be expressed in unusual amounts in ME patients, and maybe these could be what is being detected in all of these studies that find MLV-like retroviruses in humans.
    If some other stress on the body releases endogenous retroviral particles into the blood stream of ME patients, then this could cause symptoms in itself.

    Or it could be all purely down to laboratory contamination from cell lines. Whatever it is, I find it all very intriguing.


    I think there much be so much historic information out there about MLVs; viruses similar to MLVs; human endogenous retroviruses; and possible human infection with novel retroviruses, that we can't possible keep abreast of all of it, or even become familiar with a small fraction of it!
  17. Jemal

    Jemal Senior Member

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    I just read a report by the Belgian High Medical Council published on 7 december 2011 (the Belgian government asked them to respond to the XMRV situation, a group of doctors and scientists was formed to investigate).

    Their conclusions are:

    - Currently there's no evidence that XMRV is associated with human disease or even infects people.
    - There are no reliable detection methods, so screening blood or tissues for example doesn't make sense right now.
    - Exclusion criteria for blood donors with ME/CFS or prostate cancer are deemed unnecessary as people with a serious disease or an active chronic illness are already not accepted as blood donors in Belgium.
    - XMRV can infect human cells in vitro and monkeys can be infected with the virus, so they do urge caution and advise to follow any further research. They also state that monkey studies show that the virus could not be found in blood after a month, but that a chronic infection takes place (virus gets activated after 9 months).

    Anyway, one of the more interesting pieces of this report is that they state that's it's possible that some patients carry another (related) virus that crossreacts to the XMRV tests...

    Source, but in Dutch:
    http://www.health.belgium.be/intern...@public/@shc/documents/ie2divers/19074522.pdf
  18. Bob

    Bob

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    Some of that seems very reasonable and sensibly cautious.
    But I'm not sure about the first line, because not all the XMRV-prostate cancer papers have been retracted, have they?

    I'm glad that they highlighted this bit:
    But it does make one wonder why we are still testing the blood in the XMRV research, and not tissue!
  19. Bob

    Bob

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    And Maureen Hanson hasn't published yet (has she?) and she says that the antibodies she has detected are worth investigating further, suggesting that they be as a result of an alternative, but similar, retrovirus to the XMRV that she was looking for.
  20. Jemal

    Jemal Senior Member

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    I remember reading that Hanson is not going to publish (at least for now)? I think she's also waiting for studies like the Lipkin one.

    Edit: here it is

    Everyone is very afraid of contamination at the moment. As these mouse viruses are popping up everywhere... And XMRV has become very controversial of course.

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