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XMRV positive by serology from WPI

Discussion in 'XMRV Testing, Treatment and Transmission' started by gracenote, Feb 23, 2010.

  1. gracenote

    gracenote All shall be well . . .

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    I emailed Judy two days ago and received a reply from her last night. Since I already know that I am positive by serology, I asked when I would know if I have an active infection or not.

     
  2. Kati

    Kati Patient in training

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    Wow, Gracenote, thanks for sharing this info- It's pretty sad and ironic that the institute that have found XMRV in CFS patients are being slowed down due to lack of funds. Make sure you write advocacy letters to allow research money for WPI, and if you can make a regular donation to WPI.Talk to your congressman. We can all do this from our beds.
     
  3. Countrygirl

    Countrygirl Senior Member

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    Gracenote, on first impressions, this sounds like terrible news! :Retro mad: Some (how much?) of the WPI's promised funding has been withheld! :eek: We need more information about this, as it could be serious, although I trust it is nothing more than a temporary hiccup. Dr Judy says it is because of 'efforts worldwide' to sabotage the validation of a link between XMRV and CFS. We know of the failed European attempts, but this could not be described as 'worldwide'. Is she, perhaps, referring to other influential negative studies of which we haven't heard, or are there other destructive factors at play, of which we would not be aware?

    Are we going to have to fund raise on a global scale to ensure that this research isn't buried, as it was before? I sincerely hope that there is no danger that the cat can be put back in the bag at this stage.

    I do hope that this isn't as potentially serious as it sounds. I am probably over-reacting because of our long history and it triggers memories of 1991.

    I wonder, Gracenote, if you could ask Dr Judy whether she could expand a little on her answer, so that we can be reassured whether this is serious or just a bit of a hiccup?

    The results of the UK Study will be crucial and I trust that a positive outcome will release more funding for Dr Judy.
     
  4. knackers323

    knackers323 Senior Member

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    hi countrygirl, what happened in 91?
     
  5. Countrygirl

    Countrygirl Senior Member

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    Hi knackers.

    I was referring to the Dr Elaine De Fraitus (huh??I haven't spelt her name correctly - sorry) story after she claimed she found a retrovirus in a large percentage of ME samples. It was brought to nought. I expect a full account is on PR somewhere, but I haven't the time to check it out now.

    Happy Easter!

    Warmest wishes,

    C.G.
     
  6. Gerwyn

    Gerwyn Guest

    if you have vertically transferred xmrv then you are very likely to be negative you will only have antibodies for a lifetime infection.There are ways that this virus could escape the immune system completely untill it becomes replicative.
     
  7. Gerwyn

    Gerwyn Guest

     
  8. Countrygirl

    Countrygirl Senior Member

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    Thanks for the information, Gerwyn. I really appreciate following your posts.

    Happy Easter.
     
  9. Abraxas

    Abraxas Senior Member

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    I too sincerely hope this is a temporary glitch that will be overcome? As Countrygirl says, more information would be good - Arrgh! what a rollercoaster!
     
  10. Countrygirl

    Countrygirl Senior Member

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    I was just thinking about your answer whilst doing the washing up....an otherwise mind-numbing activity.

    Dr Judy has found some autistic children to be positive for XMRV, and surely their infection would have been vertically transmitted. So, are you saying, perhaps, the test would be negative if vertically transmitted and non-relicating or negative if vertically transmitted, but replicating, thus possibly causing the symptoms of autism. In other words, vertically transmission of XMRV will give a negative result only if it hasn't triggered disease, if it should prove to be capable of that. Is that what you are saying, Gerwyn? Yet, I think I recall that you said earlier that non-replicating XMRV could cause disease. So, you could have vertical transmission, non-replication, disease and still not test positive. Is that right?

    Could a silent carrier who was infected by vertical transmission be infectious yet test negative?


    Thanks
     
  11. Cookie Monster

    Cookie Monster

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    I wonder if Dr Judy M is possibly referring to part of the main $1.6m NIH project that Dr Jonathon Kerr in the UK is/was due to be involved in? ie was it dependant on XMRV being proven to be a worldwide concern?

    If the impending uk study comes back with good results then maybe that will be a catalyst to release that chunk of the grant funding, and for J Kerr to get back into being fully involved with XMRV research?

    I would also suspect that by mentioning "efforts worldwide" it just avoids any repercussion that could result from publicly making more direct accusations.
     
  12. JAS

    JAS

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    I am just hoping that is why Glaxo Smith Kline stepped in to run a study, Dr Mikovits said that she had been working with a couple of pharmaceuticals...perhaps they know it is here, their drug retrovir is already proven to have an affect on XMRV in vitro when combined with another drug..perhaps they are trying to sort this out for her...or am I just wishful thinking?!
     
  13. Gerwyn

    Gerwyn Guest

    Before I begin I should state that My comments are based on the Behaviour of other retroviruses in general and MuLV in particular

    In autism I would hypothesise vertical transfer and the virus activated(in my view by vaccines or environmental poisons).The released virus could then bind with xrv1 receptors which are needed to form synapses in a developing neural network.The consequences would be and are devestating.If non replicating I would expect the test to be negative

    Mulv can integrate into and damage mitochondrial DNA and induce mutations.mitochondria replicate by cloaning so this damage could also be transferred through the generations.this would come from the mother.Xmrv integrated in this way would also be highly likely to produce a negative result but still cause disability and PEM.


    One could also inherit integrated XMRV from a non ME father and damaged mito from mother resulting in god knows what but still theoretically be negative to test

    XMRV could also act as a mobile gene switch again causing illness but not provoke any kind of antibody response
     
  14. Countrygirl

    Countrygirl Senior Member

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    Thanks Gerwyn. I shall read that through a couple of times to digest it.

    One thing that particularly interests me is your reference to environmental poisons. My illness began when chronically exposed to pentochlorophenol, lindane, diedrin and OP when my timber house was soaked in it. I have also been involved with campaigning for the farmers who were poisoned by OPs. Are you saying that chemicals such as these could act as a trigger for XMRV?
     
  15. Gerwyn

    Gerwyn Guest


    yes or by directly damaging mitochondria or both. damaged mitos might actually cause changes in dna integrity promoting the release of any latent viruses.
     
  16. IntuneJune

    IntuneJune Senior Member

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    This is the category I would fall in. Because of an immune deficiency, I do not produce detectable antibodies.

    I am 64 and the immune deficiency was not found until four years ago.

    How many others out there in our community would fall in this group I wonder. Should the researchers be doing cultures and muscle biopsies as the standard for testing in the first place.

    June
     
  17. leaves

    leaves Senior Member

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    Uhmm from mikovits comments I understand that you can be positive for the VIP culture test and still not have xmrv??!! Because you came into contact with viral fragments??!! Omg ! So I may not have xmrv?? All this is driving me nuts
     
  18. Countrygirl

    Countrygirl Senior Member

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    Gerwyn, thank you. I have wanted to know the answer to that question for years. Very interesting.

    Now, I'm wondering could these chemicals cause the symptoms of ME without activating latent viruses? Gerwyn.......?
     
  19. Gerwyn

    Gerwyn Guest

    yes by directly damaging mitochondra especially those in cells of the immune system and brain where the mitos have about ten copies of dna each
     
  20. Countrygirl

    Countrygirl Senior Member

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    Gerwyn, thank you. I have wanted to know the answer to that question for years.

    Now I am wondering whether exposure to these toxins could cause the symptoms of ME without activating latent viruses. Gerwyn......?

    (I've posted this question twice......the first one vanished....somewhere.)

    Huh?? Something strange is happening. My lost post has just appeared and two others previously on this page vanished. Perhaps a mod could erase the duplicated post?? Please....
     

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