Videos of Dr. Judy Mikovits' Presentation and Q&A, from the Jan 22 event sponsored by the HHV-6 Foundation and ProHealth, are available HERE
And now full transcripts of the entire event are available.
We all owe a great debt of gratitude to the small group of dedicated people on the Phoenix Rising Forums who transcribed the audio portion of the 2.5-hour event – with special thanks to the volunteers who transcribed the hard-to-hear questions from the audience in the Q&A video.
The transcripts, with notes on a few of the many points made, are as follows.
TRANSCRIPT OF XMRV PRESENTATION (VIDEO #1)
Part 1 - Transcribed by ‘thefreeprisoner’
• Introduction by Whittemore Peterson Institute Founder Annette Whittemore
• Important background by Dr. Mikovits – “Retrovirus 101,” and a careful explanation of the process Mikovits, et al. used in testing for XMRV in CFS and healthy samples.
Parts 2 and 3 – transcribed by ‘Kim’ and ‘froufox’
• How they determined that XMRV both in prostate cancer and CFS is a new human retrovirus (not a rodent virus); that it is an ‘exogenous’ virus, meaning it isn’t part of the human genome like ‘endogenous’ viruses, but is a foreign virus; and then that XMRV can be infectious in both prostate cancer and CFS.
• One question now is, what types of cells are the main ‘reservoir’ for XMRV – those that have the machinery necessary to replicate the virus to high levels? If the virus in plasma was coming out of the tissues, what would be the tissue reservoir?
• How they determined that hormones turn on XMRV transcription (the replication and division of the virus) - progesterone, androgen receptor, testosterone, and more still unidentified such as possibly estrogens & estrogen-like compounds. Notably, prostate cancer is “a hormone responsive disease” and CFS is thought to occur primarily in women.
Parts 4 and 5 - Transcribed by ‘Sproogle’ and Garcia
• Also, cortisol – the stress hormone – is an on/off switch for the virus with the stress response.
• To illustrate a possible path of replication - using the path of HIV for example - the initial infection may create a spike in plasma viral load along with flu-like symptoms or no noticeable symptoms. Then with time, other infections, stress hormone spikes, and inflammatory responses can cause other upward spikes in the viral load until a 'tipping point' into illness is reached. “Not every cell can replicate the virus but virus can get into every cell.” The body becomes subject to invasions because the immune system loses effectiveness.
• Again using HIV as an example, development of highly active anti-retroviral therapies allowed control of the retrovirus, and for most patients, the ability to get the immune system back to functioning well vs. opportunistic co-infections. Once infected by a retrovirus, it is there to stay.
• The good news is, XMRV is the first simple human infectious retrovirus known – much simpler than HIV and apparently less changeable.
• All three known human retroviruses (HIV, HTLV, XMRV) are infectious, are associated with neurological diseases and cancer, increase susceptibility to opportunistic infections, and are not airborne like “contagious” diseases.
• Both HIV & HTLV have variants, some less pathogenic or with different profiles, so XMRV may well have variants also. Also geographic distribution might vary a lot. HTLV for example is common only in certain parts of the world.
• If you think you might be infected, follow the HIV precautions. Don’t donate blood or tissues, don’t share razors or toothbrushes to avoid blood transmission, use safe sexual techniques, and don’t breastfeed after six weeks when the maternal antibodies go away.
• Replicate studies. A slide shows participating researchers, and WPI “will send the reagents out to anybody to replicate the work and find out more about the disease” – on a nonprofit basis.
• Prevalence. A Blood Working Group (fed govt., National Heart, Lung & Blood Institute, National Cancer Institute, and many more) is investigating XMRV presence, distribution, not necessarily disease.
• Want to understand the tissue reservoirs (Lymph nodes? Bone marrow? Brain?)
• Already actively working with drug companies to develop anti-retrovirals & immune-based therapies for clinical trials.
• Understand transmission. Now planning a family study that will include families with diseases across the spectrum – fibro, other neuro-immune diseases, maybe higher incidence of cancer – plus healthy people.
• Is XMRV a causal factor in CFS & prostate cancer?
• What’s worldwide incidence, and where? Japanese study found 1.7% in their country. Researchers in Canada, UK, Germany, Sweden, Norway, Netherlands, Italy, Spain participating so far.
• Does it affect cancer risk?
What About Diagnostic Tests?
• The best diagnostic test is a serology test that will be the number one test to look for antibodies. It is done in a lab and is very cumbersome, and WPI is near validating it clinically.
• Meanwhile WPI licensed its current technology to VIP Dx which is using WPI’s “proprietary culture method and PCR in combination with a Western Confirmation.” [The PCR tests for presence of viral RNA or DNA.] VIP Dx donates anything above costs to XMRV research, as WPI is a nonprofit organization. Two other companies’ tests, which may be using too little blood, are discussed.
• You may have reasons you want to be tested now – such as thinking about ways to support your immune system or protect your family while the search for drug possibilities proceeds.
• There’s no real reason to pay for a diagnostic test because we can participate in research studies and fund those studies and you get better data. WPI invites participation in its future studies, through which testing will be free.
• WPI wants your blood for research. We are looking for study participants, via an online Volunteer Questionnaire.
* * * *
XMRV Q&A SESSION (VIDEO #2)
Parts 6 and 7 – Transcriptions by 'Advocate', 'JAS', 'Lily', 'thefreeprisoner', 'Kim' & 'Garcia'
• With other retroviruses you can be infected and be carriers and not be sick. With XMRV might there an immune defect or other reason some people get sick and others don’t?
• About 40% of those tested by VIP Dx have been positive, but right now if you test negative you’re not necessarily negative, even at VIP Dx – the serology test [for antibodies in blood serum] is needed. Maybe your virus levels are low and didn't show up but you may have made antibodies.
• As soon as we have the serology test we’ll go back and do all the negatives.
• We’ll license our test to anyone. We’re a non-profit so everybody will pay the same royalty.
• The virus uses the cell’s lipids [fats] to make its membrane. We don’t know if there’s a connection of any kind with cholesterol levels.
• What might help before therapies if any are found? Decrease inflammation; non steroidal anti-inflammatories; things that will balance cortisol. And since women at a particular time in their cycle get sicker, lowering hormone levels is a possibility – in the lab, progesterone up-regulates the virus.
• Supplements [antioxidants] can help a lot because retroviruses cause a lot of oxidative stress. Things like N-acetylcysteine and glutathione (the detox type). Things that upregulate NK cell function. Stay out of stressful situations. Vitamin D is excellent immune system enhancer... Note I am not a medical doctor.
• Patients should definitely NOT now be looking at taking AZT. Anti-retrovirals will need to be tested before specialists know which ones to use. Hang in there but hold off for the moment.
• We do very much expect to see an association with inflammatory breast cancer as with the inflammatory prostate. We’re also looking at lymphoma – with several groups of researchers.
• As for the possibility of a vaccine, while there’s no HIV vaccine yet, HIV is very complex and constantly changing. But XMRV is simple and hasn’t changed from our 1984 sample to the 2008 samples.
• Studies are looking at patients with many co-infections – including Lyme. The hypothesis is that XMRV infection may keep Lyme or others from clearing.
• Retroviruses don’t infect people differently. Everybody gets infected, but some immune systems control them and keep them down.
• We were able to find the XMRV in 67% of samples with PCR by looking at multiple samples from the same patient over time – usually 4 - raising the chances that a sample would be taken when the patient [viral level] was high.
• As for whether XMRV might “piggyback” on EBV or other pathogens to get into an affected individual, there is no evidence of that in any retrovirus.
And much more regarding ongoing studies and plans….