No one has heard anything from this seminar with Dr. Mikovits??
It seems as if someone might of at least received a "tweet" or something from the seminar. Especially since the title seems suggestive of a link between XMRV needing to be in the presence of another virus to cause problems. It just seems that is implying something, but it could just be me. Thanks
Sorry to say, the timing was all wrong for me to get over to UCLA on Fri. - on a good day, I could possibly have managed it, but I had had important business to conduct Thurs. which involved lots of driving and other exertions, leaving me badly PEM'ed.
My hope would be that the WPI would post something about the talk, at least a press release? But I don't see anything yet on their Facebook page or website.
I was wondering for obvious reasons and there was some conversation on another forum. There was interesting theories, but nothing sourced directly from seminar. I know what you mean about taking care of business, my "To Do" list keeps getting longer and longer. We have to keep the "Pace" to avoid the dreaded crash.
Thanks and maybe something will pop up soon as I'm sure somebody was taking notes. If there was any big news there would have probably been something publicly announced.
Cort may know something or get some info on Monday.
A friend of mine said he was going. I asked him to take notes, and he said he would. But I have not been able to get in touch with him to find out if he went. I hope he did, and I hope he can give us some insights. And, of course, I'll report here with what I find.
She's been addressing the problem of other labs/people not being
able to find the XMRV by teaching them on how to do it. She is breaking
up the disease into 2 parts. 1) the virus 2) the individual's DNA. She
is not sure if this is the only virus in CFS patients, when in fact she
has seen people with 2 and 3 virus's. She has identified 6 types of
defects in a persons DNA that makes them susceptible to the disease and
other diseases. She believes that a combination of AIDS drugs can
potentially cure a CFS patient. When asked about what type of doctor
should administer the AIDS drugs, she responded; an AIDS doctor. I
guess that there can be severe consequences, including liver failure.
Which is probably why she was presenting to AIDS doctors. She also
asked that they (UCLA) seriously consider clinical trials.
I felt that the UCLA doctors were receptive. There were several
questions and comments that were neutral to positive."
I knew someone had to at least pick up on something that came out of the seminar. The title to the seminar raised a little bit of speculation about more than one virus ("Does it take Two to Tango"). The need for more than one virus, plus glitches in one's DNA would go along way in explaining why we are all a little different and why we have healthy controls that are XMRV+.
Didn't Dr. Mikovits indicate in her initial findings that CFS patients had upwards of 20 - 30 viruses compared to healthy controls having only 8 - 10? On top of that you can then throw in Lymes (and etc...) bacterial infections. I can certainly see the anti-viral cocktails and/or anti-viral/antibiotic cocktails even playing a big part. I hope that the multiple viral assays are coming along well!!
If she can talk UCLA into starting "clinical trials" would be a great boost for us right now and I would hope get the ball rolling at a lot more institutions.
I understand your concern. If I'm to choose between XMRV being a sister of HTLV/Leukemia or brother of HIV/Aids, I'd rather tell people the first. It's because the damned connotation Aids has. On the other hand it's probably the best way to express the severity of the disease. First there is nothing, only something in your head and then all of a sudden it's linked to Aids. Pretty heavy stuff.
Despite the damned connotation I like the idea for Aidsspecialists to help us with the right medication. Actually I already found out where to go in my area for help. I'm waiting the testresults before I contact them. They mean hope to me.
Btw, thank you for filling in the blanc with Judy's 'two to tango'. I wish you all the best.
As far as i'm concerned, i don't mind. It helps us to be taken seriously and it brings us in touch with a group of doctors and researchers that are well funded, respected, have a lot of resources etc. And they already know a lot about HIV/AIDS, which might help us a lot, speeding things up. As soon as more facts about CFS are really established it will be clear to everyone that it's something different from HIV and also since probably around 7% of the population have XMRV, they can't marginalize us.
true. plus atypical MS, autism, cancers will have it...
everything just seems to upsetting....no cure....ARV's being so toxic...reading about all the deaths..... all the tissue damage from years of the disease...only to be topped off by researchers still debating contamination!