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VIP Dx/WPI Combined PCR/Culture Poll for ACTIVE and LATENT Infections

I Have Taken Both the PCR/Culture Tests From VIP Dx Labs; My Results Were....

  • I have severe ME/CFS: I tested positive to both the PCR and the Culture tests

    Votes: 4 8.5%
  • I have moderate to severe ME/CFS: I tested positive to both the PCR and the Culture tests

    Votes: 8 17.0%
  • I have mild to moderate ME/CFS: I tested positive to both the PCR and the Culture teststhis

    Votes: 0 0.0%
  • I have severe ME/CFS: I tested positive to the Culture test only

    Votes: 3 6.4%
  • I have moderate to severe ME/CFS: I tested positive to the Culture test only

    Votes: 7 14.9%
  • I have mild to moderate ME/CFS: I tested positive to the Culture test only

    Votes: 4 8.5%
  • I have severe ME/CFS: I tested negative to both the PCR and the Culture tests

    Votes: 6 12.8%
  • I have moderate to severe ME/CFS: I tested negative to both the PCR and the Culture tests

    Votes: 13 27.7%
  • I have mild to moderate ME/CFS: I tested negative to both the PCR and the Culture tests

    Votes: 2 4.3%

  • Total voters
    47

LJS

Luke
Messages
213
Location
East Coast, USA
What I find the most interesting of this poll is the percentage results. Right now there is 25 positives and 15 negatives, that means 63% of CFS patients who reported results in the poll tested positive for XMRV by at least one test, which is similar to the WPI Science paper. Over in the culture only poll thread the results are almost exactly 50% positive 50% negative, which raises a lot of questions for me because WPI claims the culture test is the gold standard test.
 

helen41

Senior Member
Messages
567
Location
Sleepy Hollow Canada
Oh, I didn't want to read that, 3CFIDS. Mine went in mid Nov, and they charged me Dec 30. I was hoping that meant my results were imminent. I thought 8 weeks was long- 14 is TOO long!
 

3CFIDS@ourhouse

still me
Messages
126
Location
Southeast US
Helen, I'm sorry about that! I did receive my serology results already, but am still waiting for the culture. My husband and daughter are waiting for serology, but theirs were not sent in until December 1. Maybe they have a batch of results ready to go out next week ;).
 

3CFIDS@ourhouse

still me
Messages
126
Location
Southeast US
I couldn't vote again on the poll, but for the record, my husband's culture test came back positive last week. His serology was negative. My results were just the opposite- positive by serology, negative by culture. And our daughter was negative on both. So, I feel like the waters are just about as muddy as they were before. Is she a false negative, are we false positives? We're all sick, but my husband functions at a higher level than either our daughter or me. Along with a lot of other people, I will be very glad when the testing controversy is resolved. What are some of the other tests (NK, elastase, cytokine???) that would show evidence of retroviral infection? I know I've seen some mentioned, but would appreciate being pointed in the right direction. Thanks!
 

BEG

Senior Member
Messages
1,032
Location
Southeast US
Yeah! My pcr and serology tests came back negative from VIpdx. Thank goodness I don't have a retrovirus, yet I could be a poster child for the Canadian Criteria. What is it I have? And why?
 

TinyT

Senior Member
Messages
150
Location
Australia
Yeah! My pcr and serology tests came back negative from VIpdx. Thank goodness I don't have a retrovirus, yet I could be a poster child for the Canadian Criteria. What is it I have? And why?

Me too Brown-eyed girl. Both pcr and serology tests were negative. Voted already on the serology poll though, oops. I am glad that I dont have a retrovirus, dont have to worry about transferring it to my fiance or my future child. I am a poster child for the CCC too. What do I have? Is it just POTS and connective tissue disorder or ME/CFS also?

Could we be so unwell to get false negatives? Do they need to be testing via other methods? tissue samples?
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Hopefully a new company will bring out a new test for XMRV Ruscetti/Mikovits HGRV.
We need it urgently

Why? There's been no proof whatsoever that ME/CFS has any connection to retroviruses. And there is no such thing as an XMRV Ruscetti/Mikovits HGRV.

But keep trying to push this ancient non-starter.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
Please let me politely correct people's confusion as some don't appear to be fully informed on the science. This is understandable, as to find out even grains of accuracy, you have to read various papers and remember countless press release statements. Which I do.

1) XMRV doesn't exist as human infection but the 2009 'XMRV' SCIENCE paper also demonstrated SFFV sequences. The mention of SFFV was ordered to be removed from the main paper and added to the 'extras' (additional work). Without this, they wouldn't allow the paper to be published. In addition, the publishers requested the title of the WPI paper to refer to 'XMRV' despite Mikovits wanting it to be in reference to family of human gamma retrovirus title, not limited to XMRV. If WPI had published on SFFV and not XMRV, we'd now all be having treatment (nearly 7 years has been wasted so far).

The rushed 'negative' studies, didn't look for SFFV and didn't follow the scientific method. The scientific method replicates the exact science in which the original paper used, the recipie as it were. No study, ever did this, including the 'Lipkin' Study. Without a full replication study, no findings are fully reliable. Also, none of the assays used were proven to be reliable in the negative studies, as they were (literally) home grown - e.g. weren't tested to work what WPI found (SFFV), or to work by independent sources - because they weren't after SFFV, but XMRV, which was never there.

This massive error alters findings in science and microbiology if you don't use a proven, effective method to detect a pathogen.

2) The WPI test didn't 'just' detect XMRV it detects all known gamma retroviruses, presumably some of which have since been patented. You can search for these patents online. I have read them. The latest (to my knowledge) of treating a gamma retrovirus 'related' infection was last updated in 2014.

3) Many patients with housebound Lyme and ME with crippling neurological symptoms tested POSITIVE culture, and received a NEGATIVE PCR test.The PCR test was later pulled by VIPDX as it was deemed inaccurate.Some even tested for Silverman XMRV and (of course) tested NEGATIVE too. This indicates a retrovirus (of unknown source) grew in culture, as that's what the assay probes were set to. This is why there is a HGRV in these patients, or another pathogen (such as Lyme) which has retroviral genes inserted into it (more likely) as HIV (AIDS virus) envelop protein GP120 etc, were inserted into Mycoplasma protein coat to create GWS, plus other more 'exotic' natural nasties. The scientist who made this public was assassinated in broad daylight in America, shot in the head. His researcher companion, was hounded out of his University job and his family threatened.

Science and Politics controlling science is a dirty business. Why do you think Psychiatry is in control of CFS with CB/GET fraud, when CFS isn't even categorised as mental health disorder?!

The following point is critical:

20 year old frozen blood samples of CFS (nothing to do with Mikovits or the WPI) also tested positive for MLV's (not XMRV), however the paper was pulled under coercsion. This is evidenced by the fact the researchers not related to Mikovits or the WPI released a statement after their paper was retracted saying they stand by their original findings. In other words, they know what they found, and it wasn't 'XMRV', but something else..

4) The 2011 Alter/Lipkin paper also demonstrated SFFV antibodies in lab workers and patients. This was despite the samples being spiked and Fauci stopping any further work on the samples that were positive by not allowing positive samples being tested in a 3rd round of tests (outrageous). This is against all known
scientific protocol and of course, prevents and further positive association to SFFV. Ruined science.

5) US Lab workers are being monitored for these infections and their close contact family members. Why test them if these retroviruses don't exist?
Because....

6) After what the WPI really did find (HGRV's not XMRV), Cerus Intercept tech was offered to the US Government and Cerus have made hue profits since. Cerus technology cleans the blood supply of retroviruses that the WPI met with Cerus on and informed Cerus there was a problem of huge importance! If no retrovirus existed, why have they since made huge PROFITS selling this technology? No government would be foolish enough to pay millions for something that isn't there.

7) Researchers, other than the WPI and Mikovits have since found human cell lines contaminated with retoviruses. Hence Mikovits was correct that there is a risk of transmission from lab to human, in oncology research. Unfortunately the researcher who helped reinvigorate this line or research 'shot himself' weeks before his positive paper was due to come out, and as they are deceased, can no longer continue their work. This reminds me of Dr Jeff Bradstreet, Autism Pioneer who also 'shot himself', died, fell in the river then managed to hide his own body, after being dead. (Police report states his body was well hidden).

So there is the answer to people who say HGRV's in CFS doesn't exist.
Lab workers are humans, they meet other people in society and they potentially spread it (at least from sex and blood donation) and possibly by air transmission.

Anyone is free to ignore the science, but that's where it stands. It also stood in 1991, but unfortunately the scientist Elaine De Freitas was run down by a car, the same one who found reverse transcriptase (like the Australians) and also photographed what they found using an electronmicrosope. So that's all the proof you need, microscopes don't have bias, as the images aren't HTLV, or HIV, they are another human retrovirus in CFS.
 
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dannybex

Senior Member
Messages
3,561
Location
Seattle
@Research 1st -- if what you say is true, then why oh why doesn't Mikovits and Co post their sequences (or whatever you call them) to GenBank to prove to the world they exist, like EcoClimber and others have requested, so many, many times?

It's my understanding that De Frietas' experiments failed when the samples were blinded. She was unable to distinguish between healthy controls and patients. Interesting that she never spoke up during the XMRV hysteria, but Mikovits insisted her retrovirus wasn't the same as Defreitas'.

As for Cerus, they've been in business for almost 20 years and work with hundreds of clients, only one of which was the Whittemore Peterson Institute. Their profits no doubt are a result of many different applications. And no mention of retroviruses on their main page:

"Cerus Corporation is a biomedical products company focused in the field of blood safety. The INTERCEPT Blood System is designed to reduce the risk of transfusion-transmitted infections by inactivating a broad range of pathogens such as viruses, bacteria and parasites that may be present in donated blood. The nucleic acid targeting mechanism of action of the INTERCEPT treatment is designed to inactivate established transfusion threats, such as hepatitis B and C, HIV, West Nile virus and bacteria, as well as emerging pathogens such as Chikungunya, malaria and dengue."

http://www.cerus.com/Investors/Investor-Overview/default.aspx

Anyway, the question still stands: If there are these other retroviruses or HGRVs, then why doesn't she post them to Genbank?
 

shannah

Senior Member
Messages
1,429
@Research 1st
What is the story on montoya s pts showing 85% positive to an unnamed RV and his controls were something like 6%. Contamination wasnt mentioned in his research, it was just dismissed as not important .

This is certainly a very valid and haunting question. I don't think I've ever heard any explanation offered. Why is no one answering it or attempting to clarify it?
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
This is certainly a very valid and haunting question. I don't think I've ever heard any explanation offered. Why is no one answering it or attempting to clarify it?
Yes very good question.

Everyone is so intent on bashing Mikovits they are missing some things. There could be other retroviruses like Montoya is saying. We cannot ignore the possibility of other unnamed RV's.
 
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Large Donner

Senior Member
Messages
866
Research 1st said:
What is the story on montoya s pts showing 85% positive to an unnamed RV and his controls were something like 6%. Contamination wasnt mentioned in his research, it was just dismissed as not important .

This is certainly a very valid and haunting question. I don't think I've ever heard any explanation offered. Why is no one answering it or attempting to clarify it?

Lipkin said:
We also found retroviruses in 85% of the sample pools. Again, it is very difficult at this point to know whether or not this is clinically significant and given the previous experience with retroviruses in Chronic Fatigue, I am going to be very clear in telling you - although I am reporting this at present in professor Montoya's samples neither he nor we have concluded that there is a relationship to disease. I will repeat one more time:
We have found retroviral sequences but their relationship to chronic fatigue syndrome at this point is unclear and in fact if i were to speculate I would say they are not going to pan out.

https://docs.google.com/file/d/0B-NT-7M70igudmZVSVJUTnZVclU/edit

So there you have it. Nothing to see here nothing to further investigate, because he already decided it wont pan out. Its just evidence of a bunch of RV sequences and cos its ME its going to be of no significance. All this time later and we still just have his speculation. That's good enough for us cos its only ME, right?
 

shannah

Senior Member
Messages
1,429
Research 1st said:




Lipkin said:


So there you have it. Nothing to see here nothing to further investigate, because he already decided it wont pan out. Its just evidence of a bunch of RV sequences and cos its ME its going to be of no significance. All this time later and we still just have his speculation. That's good enough for us cos its only ME, right?

@Large Donner

Thanks so much for digging out the transcript and providing the exact quote. This was dated September 10th, 2013 so 2 1/2 years ago!
 
Messages
5,238
Location
Sofa, UK
I'm repeating what was stated earlier in the thread. I believe it was @heapsreal. #30. I think @Research 1st mentioned it elsewhere too but I'm not sure.
Heapsreal referred to (a group of) Montoya's patients having coming out 85% positive for retroviral sequences on one of Lipkin's tests. The same quote indicates that neither Lipkin nor Montoya were saying there is a relationship to disease in what they found, and Lipkin said he didn't think the finding would pan out.

Where does that get to 'Montoya is saying there could be other retroviruses'?

That kind of jump is where so many misunderstandings come from - and a lot of nonsense too. It's always better to check the source and stick with what someone actually said - and it's especially important when checking the source not to ignore or re-interpret the comments that don't suit your purposes.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I was not bending things to fit some "agenda" that I don't have. I'm not smart enough to do that.

I just think it's naive/wrong (pick your word) to completely rule out the possibility of some unknown virus making us sick. Retro or otherwise. Period.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
Heapsreal referred to (a group of) Montoya's patients having coming out 85% positive for retroviral sequences on one of Lipkin's tests. The same quote indicates that neither Lipkin nor Montoya were saying there is a relationship to disease in what they found, and Lipkin said he didn't think the finding would pan out

To me it sounds like they dont really know its a factor or not. How deeply have they researched this. How did lipkin come up with his answer?

Doesn't sound right to say that theres no relationship to cfs when the cfs group were 85% and the control group were extremely low .

They are still researching retroviral cause of MS , so its not a far stretch to think its a possibility in cfs.

We arent saying xmrv but what we are saying is what about other RVs. Why are people so against searching this further. The book is far from shut on RVs or any virus for that matter as technology improves the understanding of these infections .

Why close the book. People are allowed to ask the question on RVs. If others dont like it then they don't have to read the threads but theres plenty of interest here on this subject.