XMRV symposium June 9

What i have to say, i'm really a bit fed up about "tactics". We are waiting and i don't think anyone should let us wait longer than necessary.

 

I can understand why Mikovits wants to stay low for a while and it might actually be a smart move. Anything she publishes will be suspect for a lot of people at the moment, better to let others do some of the work for now. I really hope to see the positive studies, but we will see.

What I don't understand is why she doesn't post everything to genbank, especially if it could remove doubts.

 

Thanks OS for writing your great report and then for answering our questions. You must need a proper rest by now and I'm very grateful that you would update us.

If we patients could give medals you would deserve one!

 

I would be interested in the audio recordings. Sounds great. Thanks for sharing your info from the symposium.

 

Thank you OS for this .your report was really generous a bit of an inside track and I for one badly needed some good news .xmrv doesnt sound too dead at all in this .HOpe it all comes to fruition. Getting it to us so quickly was great of you .thanks again .definitely time to take good care of you now,and I
I hope the dreaded payback will be gentle ! Take care .

 

thank you, OS!!!!!

 

Again, thanks so much OS! Heroic reporting --and of course we are greedy for some more! So after you rest up, if you find anything more of interest in your recordings, we are all ears. And if there is some sense that you shouldn't put it on a public forum, maybe we could request it privately?

Hope you aren't pooped from the efforts.

Best wishes,
Sushi

 

Thanks OS for your great report here. It is good to see the way these particular scientists work so well together - doing things their way to keep the Anti sniping at bay too.

 

Hey OS,


Good report. I was there also yesterday (I'm the one asking about the rnasel, to which we got an evasive and confusing answer)
I would like to add 2 things that might be important to us:

1) Ruscetti is in the middle of analysing tissue samples for x and p's, and he said the preliminary results looked very promising. He literary said to someone in the audience asking a question about it " let's say you will be very happy when the results get published".

2) Mikovits talked about the rituximab trail in Norway which yielded very good results. Patients got better conciderably, not only the symptoms improved, but also the cytokine/chemokine profiles improved considerably. Only downside is that the improvement did not last. Patients got worse again after being of the drugs for a while. This drug kills of all the cd20's, that's how she got to the conclusion that CD20's probably are an important reservoir for x's and p's. Since the bone marrow is producing new cd20's after discontinuing the medecin. She also told us that several pharmaceutical companies have shown intrest in her work and are willing to start investigating new drugs, and clinical trails, once the contamination storm blows over, which means after the lipkin study gets published. This is the all or nothing study to her (600 blinded samples for which she will need the rest of this year to get them all tested).

Regards,

K

 

Hey Ikke,

thanks for your additions! Can you elaborate on the RNASE-L answer you've got ?

Thanxs,
OS.

 

OS: THANKS so much for your magnificent report on the Conference , and THANKS IKKE for adding on Ruscetti and Mikovits!

Great job guys!
Sergio

 

I agree - thanks very much!

 

Thanks for the additional information ikke! Was Mikovits positive about the Lipkin study, as in she seemed confident that the study would validate her findings?

Because I am reading more and more about bone marrow, I was looking into bone marrow biopsies... I hope we are going to be spared those.

 

OS,

Ruscetti stated in his presentation that all XMRV+ had a defect in their RNASEL which is our primary defence against virusses, hence viral infections seldom come alone ( coinfections with EBV,CMV, HHV...). So after his presentation I asked him if this defect was the cause that we got infected with XMRV, or if it was the XMRV making our RNASEL defect. He responded to that, looking at Mikovits, with the words " I'm not sure if we can answer that question." Then Mikovits said that she hadn't heard the first part of my question after which I restated my question. She than explained how rnasel was our first line of defence against viruses, which wasn't really to the point, and finally Ruscetti said that both where possible. Some get infected because their rnasel is defective, and some have their rnasel become defective after xmrv infection. So I'm not really sure what to make of it. Maybe there is still some investigating being done on this issue?

Regards,

K

 

Hi Jemal, I was found GAG sequences of XMRV in the stomach by a gut biopsy prescribed by KDM, confirming the positive cultured done a year before at VIDdx. Maybe, if this procedure is improved, we can spare the marrow biopsy...

Sergio

 

Thanks serg. I have had two stomach biopsies and they weren't too bad. Though the second one wasn't pleasant, as by then my throat and stomach had become inflamed.

 

Very good to hear Ruscetti say these things about biopsies. Makes you wonder what's going on at the NCI when they post a message that XMRV is contamination... Don't they have a boss at the NCI? Or is the boss pro-contamination, but for some lucky reasons Ruscetti is nevertheless able to continue his work? I just can't believe if Ruscetti were to present his results to someone higher up in the pyramid they would let the NCI post this message. Unless for whatever reason they want this supposed misinformation out there at this moment.

 

A huge standing ovation from the forum for OS and ikke... 10 positive studies would sure make the next year much easier on those fighting the good fight. Again thank you very much...........now go rest

 

You're right Jemal, i can see this, but what makes me angry is that obviously the entire environment they are working in is so perverted (sorry) that they have to apply that kind of tactics instead of everybody working to find a solution for us as quickly as possible.

 

Jemal,

Mikovits was very positive about the Lipkin study and appeared 100% confident that she would be able to complete this study resulting in a confirmation of her original findings. The only thing that seemed to bother her is the fact that she will need untill the end of the year because of the fact that she needs 21-42 days per sample.
Another thing that bothers her is the fact that she has diffrent x and p strains that would show that there is a bigger difference in DNA then in the samples that are currently in the genbank, but the WPI does not currently have the money to do the complete gene sequencing.

Regards,

K