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XMRV positive by serology from WPI

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.

As a part of our research study we are screening thousands of patient/control samples for evidence of XMRV infection. XMRV research is in its infancy and essentially nothing is known about the life cycle of XMRV. These are not diagnostics tests nor does any test at this time determine active vs latent infection. We are attempting to isolate and sequence XMRV from as many people as possible. This is time-consuming and costly.

We had obtained a promise from a donor to pay to have these isolates sequenced (it costs ~$2500 per isolate). We have yet to sequence the isolates because of an inability to obtain the funding because of the efforts worldwide to make certain that XMRV has nothing to do with CFS. The WPI has not received any grant funding or promised donations because of the politics.

We appreciate your patience and support and will continue to do everything possible to get answers as soon as possible.

Kind regards,
Judy
 

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.
 

Countrygirl

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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.
 

Countrygirl

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knackers323;64456]hi countrygirl, what happened in 91?
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.
 
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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.
 
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Gerwyn

Guest
I have been trawling through the posts trying to find an answer to a query I have, particularly as the UK testing is now about to start. I would be grateful if some of our scientific boffins could clarify the following.

How likely is it that someone who has been severely ill for years, but much improved at the time of testing, will get a positive result, even if the illness was caused/associated with XMRV? As the virus is difficult to detect at the best of times, will a test subject in a period of remission still be likely to prove positive to the serology test? I would be grateful if this could be clarified.

Thanks.
it really depends on whether you inherited the virus or not.the virus could make you very ill (at least in theory0 without ever replicating)
 

Abraxas

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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.
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!
 

Countrygirl

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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.
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
 
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Subquote from Judy Mikovits "As a part of our research study we are screening thousands of patient/control samples for evidence of XMRV infection. XMRV research is in its infancy and essentially nothing is known about the life cycle of XMRV. These are not diagnostics tests nor does any test at this time determine active vs latent infection. We are attempting to isolate and sequence XMRV from as many people as possible. This is time-consuming and costly.

We had obtained a promise from a donor to pay to have these isolates sequenced (it costs ~$2500 per isolate). We have yet to sequence the isolates because of an inability to obtain the funding because of the efforts worldwide to make certain that XMRV has nothing to do with CFS. The WPI has not received any grant funding or promised donations because of the politics.

We appreciate your patience and support and will continue to do everything possible to get answers as soon as possible.

Kind regards,
Judy ."
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.
 
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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?!
 
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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
 

Countrygirl

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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?
 
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Gerwyn

Guest
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?

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

IntuneJune

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Here are some thoughts that Dr. Mikovitz communicated to a source which I have paraphrased. This is third hand information. (Obviously, this does not carry the weight of “Dr. Mikovitz said,” but I believe it to be an accurate reflection of her current thinking.) I have permission to post.



It may be possible for some to develop antibodies after only being exposed to viral fragments, yet remain uninfected. (This is basically how a vaccine would work.) This could explain how some of the healthy population is positive.

Some who were expected to be positive have tested negative. Perhaps those who are the least sick and the most sick may not have free antibodies because it is bound in immune complexes.

It may be possible for some to have an immune defect that prevents them from expressing antibodies at all. They would then require culture testing, or possibly tissue biopsy to find the infection.

[/INDENT][/INDENT][/INDENT][/INDENT]
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
 

leaves

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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
 

Countrygirl

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=Gerwyn;64479]yes or by directly damaging mitochondria or both. damaged mitos might actually cause changes in dna integrity promoting the release of any latent viruses.
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.......?
 
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Gerwyn

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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.......?
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
 

Countrygirl

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Gerwyn;64479]yes or by directly damaging mitochondria or both. damaged mitos might actually cause changes in dna integrity promoting the release of any latent viruses.
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....