From the 1st annual XMRV conference

[George]

At the very end Frank Ruscetti shut Dr. M down (grins) she almost spilled the beans on a study that he's doing right now evidently. In answer to the question about what is the mechanism behind HTLV causing both a neurological as well as cancer. Even though this was not designed for general population consumption there seems to be a lot of good stuff going on behind the scenes.

What I found interesting is that there seem to be three camps, the group that says it doesn't exist (which is getting smaller) the group that says that is does exist and it's a pathogen and it causes illness and we're going to be famous and you're not (and is attracting big names) and the group of clueless people who want someone to tell them what to do next.

Did anybody else get the impression of lines drawn in the sand and that everybody thinks "they're right"???

 

[Bob]

Highlights from my notes:


Mikovits - says (we have) "at least 50 positives from the London area".

Mikovits - we had independent confirmation, from 3 different groups, of the research studies you heard about today (I suppose this means the WPI's UK study of 50 patients).

Mikovits - blood working group has discussed/seen problems with collection and storage - processing protocol needed.

Mikovits - we set up this study to look at all the viruses - Does CFS have an underlying immune deficiency like HIV? This is the hypothesis we are following and have setup chips to look at all different viruses. (is JM referring to her ongoing study that links XMRV to immune irregularities?) (couldn't take good notes here, as JM talks like a speaking bullet!)

 

[julius]

Dainty,

I think the larger point they were making about drug trials was that it's not the time to be tying up money and resources in them now, as there is little overall benefit.

 

[Sasha]

I understand that for scientists, the name of their game is caution, replication, and ensuring they fully understand something before "jumping ahead" to treatment. I get that. What they don't get is that the name of our game is trial and error, anecdotes, and personally acceptable risks. It isn't ideal, but it's what we've got and it's how we live, and until we're presented with another option that's what we'll continue to do no matter what the scientists tell us. Don't like it? Then give us an alternative. We can't wait another decade or two for you to make up your minds.

I just think that they have no idea how sick some of us are. They're very new to this and their focus is on the retrovirus, not the details of CFS. They're at the beginning of a learning curve.

 

[Mark]

The big news for me was Judy saying that with the blood working group, just over the last few weeks have figured out that collection and processing issues are almost certainly the reason for diverging results of different studies.

Definitely one of the most significant points.

 

[VillageLife]

dr mikovits said in the live Q&A that she has around 50 CFS UK positives from around the London area, that's the uk study yipeeeee!

 

[Dainty]

I just think that they have no idea how sick some of us are. They're very new to this and their focus is on the retrovirus, not the details of CFS. They're at the beginning of a learning curve.

That's true. Our symptoms can sound so benign on paper.

 

[Rita]

At the very end Frank Ruscetti shut Dr. M down (grins) she almost spilled the beans on a study that he's doing right now evidently. In answer to the question about what is the mechanism behind HTLV causing both a neurological as well as cancer. Even though this was not designed for general population consumption there seems to be a lot of good stuff going on behind the scenes.

What I found interesting is that there seem to be three camps, the group that says it doesn't exist (which is getting smaller) the group that says that is does exist and it's a pathogen and it causes illness and we're going to be famous and you're not (and is attracting big names) and the group of clueless people who want someone to tell them what to do next.

Did anybody else get the impression of lines drawn in the sand and that everybody thinks "they're right"???

I hope in the third group are that that know there are a very sick patients waiting for some relief and are waiting too may years(like Mikovits) .Researchers have a big ego, thats very clear.

 

[KnightofZERO]

At the very end Frank Ruscetti shut Dr. M down (grins) she almost spilled the beans on a study that he's doing right now evidently. In answer to the question about what is the mechanism behind HTLV causing both a neurological as well as cancer. Even though this was not designed for general population consumption there seems to be a lot of good stuff going on behind the scenes.

What I found interesting is that there seem to be three camps, the group that says it doesn't exist (which is getting smaller) the group that says that is does exist and it's a pathogen and it causes illness and we're going to be famous and you're not (and is attracting big names) and the group of clueless people who want someone to tell them what to do next.

Did anybody else get the impression of lines drawn in the sand and that everybody thinks "they're right"???

I got the impression some of the people are not at all too fond of each other.... I think there is a one more "camp" thinking it might be an artifact of immune suppression and not primary. The views on clinical trials were all over the board.

Thought the question on the CDC's criteria, and the question on "why these two illnesses? w/o necessary RNAseL involvement --the reason both illnesses were first looked at in the beginning" were good ones though i didn't hear them all.

 

[Bob]

At the very end Frank Ruscetti shut Dr. M down (grins) she almost spilled the beans on a study that he's doing right now evidently.

I wish we knew what Ruscetti was up to... It sounds ultra-interesting and significant!
Didn't Andrea say that he would be finally putting the questions to rest, or something like that?!

 

[Jessrose21]

I just think that they have no idea how sick some of us are. They're very new to this and their focus is on the retrovirus, not the details of CFS. They're at the beginning of a learning curve.

Exactly. And I don't know how we're going to get that across, especially with a stupid name like chronic fatigue syndrome. That's been our problem for over 20 years. "Chronic fatigue? Everybody has that. I'm tired all the time, too." Ugh.

 

[Mark]

There was some mumbling at the end which sounded potentially interesting. Did anyone catch it? What was the context for : "I DO know things that you don't know" (said by a man? My speakers were turned down low at that point. Anyone recording and able to clean up the audio?

I thought Mikovits body language was a bit poor when talking with McClure.

There wasn't any new info really.

Loved the mumbling. Wish I'd realised at the time that argument was with McClure.

But no new info??? Are you kidding?!

 

[Sasha]

Loved the mumbling. Wish I'd realised at the time that argument was with McClure.

But no new info??? Are you kidding?!

That was your eleven hundred and eleventh post, Mark! Lucky!

 

[Bob]

Some new info from the broadcast:


Judy Mikovits has at least 50 XMRV +ve samples from the London area... and has confirmation of the test results from 3 different groups.

Judy Mikovits' new study is looking at the hypothesis that CFS has an underlying immune deficiency like HIV... "we are following, and have setup chips to look at, all different viruses" (i.e. HHV-6 etc.)

The blood working group has identified problems with collection and storage - they've decided that a processing protocol is needed.

 

[Sasha]

Didn't somebody say that the director of the NIH (possibly the NCI, it was ambiguous) had stayed for lots of talks and had asked questions? That Frank Collins guy, possibly? It was one of the panelists, who was talking about the NIH & NCI and then said that the director, etc. but didn't say of which.

 

[ixchelkali]

Holy freep, I think my brain just burned up the closing comments did you hear?

"yeah, I know things you don't"

Yep, I heard that, too, on an open mike someone had forgotten to turn off. Along with "I'm more confused now that when I came here..." Funny!

 

[FancyMyBlood]

At the very end Frank Ruscetti shut Dr. M down (grins) she almost spilled the beans on a study that he's doing right now evidently. In answer to the question about what is the mechanism behind HTLV causing both a neurological as well as cancer. Even though this was not designed for general population consumption there seems to be a lot of good stuff going on behind the scenes.

What I found interesting is that there seem to be three camps, the group that says it doesn't exist (which is getting smaller) the group that says that is does exist and it's a pathogen and it causes illness and we're going to be famous and you're not (and is attracting big names) and the group of clueless people who want someone to tell them what to do next.

The existence of those 3 groups (although I think some can be arranged in subgroups) is easy to explain:
Members of the first group haven't been able to detect the virus.
Members of the second group obviously did detect the virus.
The third group is more comprehensive I think. I wouldn't call them clueless but rather call them 'neutral'. Some of them have been sent to learn more about XMRV and some of them just won't call it a day until an irrefutable explanation is found for the discrepancies.

Did anybody else get the impression of lines drawn in the sand and that everybody thinks "they're right"???

The lines in the sand come from the first and second group I guess (McClure vs. Mikovits). The majority (3rd group) hasn't got a clear opinion yet, further research has to drawn them over the line.

 

[creekfeet]

No way I can catch up with or follow discussion, still having major cognitive interference, but just want to say I caught all I could, thanks George for the notes you took, and I personally feel very hopeful about the potential for antiretrovirals no matter how some people try to obfuscate and interfere.

 

[Sasha]

Yep, I heard that, too, on an open mike someone had forgotten to turn off. Along with "I'm more confused now that when I came here..." Funny!

Typical academic conference, then!

 

[FancyMyBlood]

Holy freep, I think my brain just burned up the closing comments did you hear?

"yeah, I know things you don't"

Maybe it has been posted already, but do you know who said that?