Dr. Mikovits of the WPI to Host Live Q&A Session Regarding XMRV 22nd Jan

[kurt]

I'd have loved to get more news on the CDC replication attempt than this. It sounds like they're still working together though.
I wasn't able to watch this. Was there any info on why PCR detection rates are so much lower than culture (I probably won't understand any explanation given, but it would be nice to try)? Any hints on when we might have these findings confirmed by independent groups?

She said something about waxing and waning of viral load, and the timing of the blood draw may be very important to get a PCR positive. They had multiple samples from the patients in the study, so could find the 'most positive' for each person.

I didn't catch anything like that question about PCR, but she said there were emailed questions she didn't have time to answer and they would be answered on ProHealth and maybe WPI, so maybe it will be answered there. Dr Bateman called the culture test the "gold standard" of tests and I think that is because the retrovirus can be at any stage of it's "life" in the other tests and maybe not show up or be detectable, but if it is reproduced in culture, it's there for sure.

That is only true if the antibody testing and PCR are reliable, because PCR must be used to establish the validity of antibody testing, and an antibody must be used to read the cultured sample.

I've had it 6 years, I hope that isn't too long, it might end up being 8-10 years by the time anything comes along to treat it, I feel awful now, I was so optimistic.
Why wouldn't they be able to treat it later on?

That part did not make sense to me. Older infections will certainly be harder to treat, because with retroviral infections after a certain point the virus is established in your own DNA. From that point on you have to treat the down-stream effects of the infection more aggressively. But you still can stop further replication of the retrovirus with ART, and in time, once your own cells have been replaced, the retrovirus should be mostly out of your DNA. But that could take several years, some cells are replaced more slowly, and some neural cells are never replaced, so I guess if the retrovirus is in the nerve DNA you may just have to treat neural symptoms for the rest of your life. Maybe that was what she meant.

 

[Hysterical Woman]

Looks like the talk might be up here:

http://www.ustream.tv/recorded/4153940

Unfortunately, it cuts out after about 30 min? But at least it is something.

 

[Hysterical Woman]

Looks like it might be up here:

http://www.ustream.tv/recorded/4153940

Unfortuntately it cuts off around the 30 min. mark.

 

[Lily]

I've had it 6 years, I hope that isn't too long, it might end up being 8-10 years by the time anything comes along to treat it, I feel awful now, I was so optimistic.

Why wouldn't they be able to treat it later on?

Knackered maybe this will help - Back in November, Dr. Klimas responded to a question from a woman in the the audience who asked specifically, if

...even though you’ve been sick for 30 years, is your prognosis or treatment with an anti-viral going to be different than someone who’s been sick for a year?

Dr. Klimas responded:

My answer is don’t be discouraged by that. OK - just don’t be! There is something about being older…um… that the immune system just doesn’t reconstitute as quickly. Younger people – not so much duration – younger people are going to do better than older people, but the older people are gonna do well too, if we can project from our HIV experience.

Perhaps that is what Dr. Mikovits intended to infer. I think that's pretty hopeful.

 

[Sushi]

I just checked--it is just the first 27 minutes. Maybe later they will put the rest up?

Sushi

 

[Knackered]

Knackered maybe this will help - Back in November, Dr. Klimas responded to a question from a woman in the the audience who asked specifically, if

Dr. Klimas responded:

Perhaps that is what Dr. Mikovits intended to infer. I think that's pretty hopeful.

Wow thanks!, I feel so much better now, I'm only 26!

THANKS I think I'll sleep easier tonight. I was so worried.

 

[Hysterical Woman]

I just checked--it is just the first 27 minutes. Maybe later they will put the rest up?

Sushi

Yep, Suhsi, thanks

It cuts off around that time. At least it is something.

This is the organization that posted it on Facebook:

http://www.facebook.com/#/pages/XMRV-Global-Action/216740433250?ref=nf

Maxine

 

[Sushi]

Hysterical Woman!

I just checked--it is just the first 27 minutes. Maybe later they will put the rest up?

Sushi

 

[gracenote]

From the ProHealth web site:

MERE WORDS COULD NOT EXPRESS OUR THANKS TO DR MIKOVITS FOR HER XMRV PRESENTATION ON JANUARY 22. THOUGH STORMS CAUSED AREA INTERNET SERVICE TO GO DOWN FOR A TIME DURING THE 2-1/2 HOUR EVENT, UNINTERRUPTED VIDEO & THE SLIDES WILL BE POSTED ON PROHEALTH.COM NEXT WEEK.

 

[boomer]

treatment

Yes, there have been people with AIDS that were a couple of weeks from dying that got on medication and are hiking and doing well. However, I didn't listen with my ear to her presentation the whole time but I got the impression that they have not found any medication for now that can be used. I figure that several months have gone by now and I am sure every combination and purmutation of drugs has been tried and yet no mention of any effective treatment. Not even AZT which has been in a trial. I am a little disappointed.

 

[Hysterical Woman]

Hysterical Woman!

I just checked--it is just the first 27 minutes. Maybe later they will put the rest up?

Sushi

Hi Sushi,

We were cross posting, yep only the first 27 minute. I got it from Facebook, but there was a comment that they were having the same problems as many others who watched it, I don't think they will be able to add the rest.

Maxine

 

[Hysterical Woman]

Sushi,

Here is a link to the organization that posted that part on Facebook:

http://www.facebook.com/#/pages/XMRV-Global-Action/216740433250?ref=nf

Maxine

 

[bluebonnet]

Did she say that an antiviral only targets viruses; it wouldn't target a retrovirus? That to target a retrovirus, you have to have an antiretroviral?

 

[Dr. Yes]

Yes. That's why she said that taking antivirals when you were tested for XMRV would not have affected the result. (Which isn't what VIPdx said, is it? I thought they were saying to lay off the antivirals before you're tested...)

 

[Knackered]

If it turns out XMRV is the cause now and I'm able to get better and get a job Dr Mikovits's going get a huge bunch of flowers from me. I won't say what Wessely's going to get if I run in to him!

 

[usedtobeperkytina]

Comments

Didn't get to listen to it. But read all the comments. I see my question was answered. I asked if supplements to boost immune system, particularly Nk Cells might cause the virus to be turned on and speed up replication. I see she said supplements for NK cells might be helpful.

Also, I see she said what I have been saying on these boards again and again, female sex hormones trigger the virus which may explain why women likely get the illness more than men. But that doesn't mean the men don't have the virus.

Also, I notice she agrees with Bateman and Klimas that it is vertically transmitted.

I found the comments about treating early interesting, especially since there isn't a treatment for XMRV yet. But it does match what I think. I think the virus being active for a long time, the secondary viruses flourishing, can lead to an immune dysfunction that becomes stuck and can't recover on its own. Well, some recover over years. But don't fret, most immune system dysfunctions can be treated. I expect that even if they can't stop the progression that XMRV causes, they will find treatments for the immune system, too.

Tina

 

[Dolphin]

link to the PDF slides from the show, takes awhile to downloadf.

http://www.wpinstitute.org/news/docs/Invest_in_ME_20090529_Mikovits.pdf

Although useful to have, I don't expect those are exactly the slides she used. They are the slides when she spoke at the Invest in ME conference in London in May 2009 before the XMRV connection was announced to the world. Maybe some are the same.

 

[flybro]

Cheers Tom sorry. and oops

 

[Lily]

Although useful to have, I don't expect those are exactly the slides she used. They are the slides when she spoke at the Invest in ME conference in London in May 2009 before the XMRV connection was announced to the world. Maybe some are the same.

Those don't look like today's to me:Retro smile: At least not the ones she used during the first 35 minutes:Retro tongue:

 

[julius]

usedtobeperkytina,

Do you know offhand any supplements to boost nk function? I came across AHCC, which looks very intriguing.