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First Public Presentation by WPI Researchers

Kati

Patient in training
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Oh, and if you have XMRV, you are actually probably sicker and in poorer than you feel, which for most of us is saying a lot.
Levi, can you please talk a bit more about that? Did you mean in poorer condition?

Did they talk about what's coming up for them?

Thanks for the fresh update- looking forward to hear more.

Kati
 
R

Robin

Guest
You must be exhausted! Thanks so much for the update!

Thats the good news. The bad news if that she apparently does not intend to soft pedal the transmissible nature of XMRV, and stated that it is probably a lot easier to spread around than the aids virus because it is found in saliva.
HIV is in saliva too (and tears and breastmilk) but it such a tiny quantity that it's almost impossible to transmit that way. I wonder what the concentration of XMRV is in saliva? So many questions...
 

MEKoan

Senior Member
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I find it refreshing that nothing is being soft pedaled.

Yeah, mention of cancer risk and Pick's disease is frightening but we have the benefit of finding out about potential links and potential treatments in one fell swoop.

Knowledge is power.

Even knowing just this much inspires me to do what I know is helpful - pace, meditate, avoid or deal effectively with stress. The stakes may be higher than I knew.

It is also good to remember that there are some who have been dealing with this for a very long time (30 years since onset for me) and if I could stop my cognitive problems now, I'd be very happy indeed. No need to leap to worst case scenario.

On the other hand, this no nonsense approach may insure that we get appropriately aggressive and timely treatment. That's a good thing.

I want to know.

Again, Levi, thank you very much!

Peace out,
Koan
 

Rrrr

Senior Member
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UOP and VO2??

you wrote:
In the future, it looks like UOP will be collaborating with VO2 studies in CFS patients.

question: what is UOP and VO2?

thanks for this summary of the talk! i hope we can watch it tomorrow on YouTube, anyone know?

rrrr
 
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Levi
You must be drained. THanks so much for getting this much out to us tonight! Great to hear your good impression of Mikovits. I find myself craving data. I will be patient.
islandfinn
 
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Levi,

Thank you so much for making the trip and reporting back to us so promptly. I know that you are exhausted from it. We are all very grateful to you.

srmny
 

dannybex

Senior Member
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Thats the good news. The bad news if that she apparently does not intend to soft pedal the transmissible nature of XMRV, and stated that it is probably a lot easier to spread around than the aids virus because it is found in saliva.
Thanks so much Levi -- that was very kind of you to post after such a long and probably very (extra) exhausting day!

I too wonder about that last comment however, as the HIV virus is found in saliva -- she must know that -- but is not transmitted that way.

Also interesting to learn that the German research was faulty.

Thanks Levi,

Dan
 

Finch

Down With the Sickness
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Thank you Levi!

Levi - It's so good of you to try to give us this information when you're so wiped out! I certainly appreciate it, and it's very helpful to all of us who are waiting to know what the next steps are going to be.

We're an awfully impatient lot, but we have good reason to be, I know.

I hope you're getting some good rest. The stimulation alone must be overwhelming!

Guys - the CFSAC meeting is only two days away! I hope Cort gets his wish and that lots of people are there.
 

Advocate

Senior Member
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you wrote:

question: what is UOP and VO2?
UOP is University of the Pacific, which is where Judy Mikovits spoke.

The university has a Fatigue Lab there that measures the volume of oxygen (VO2) you can consume while exercising at your maximum capacity. The Fatigue Lab does this two days in a row, and they have found that people with CFS consume less oxygen on the second day. Cort did a great blog on this, and on Staci Stevens, the director of the lab.
 

mezombie

Senior Member
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Many thanks, Levi!

I know how exhausting it is to attend these types of things, let alone report on them. It's very kind of you to do so.:)

I was particularly interested in this part:


Oh, and the German Study. They were using an old test and not looking at the correct tissues to find XMRV (lymphocytes), so they never found any virus. That study will probably get repeated.
I'm glad Mikovitz is so on top of things like this. She will need to be as Reeves and others gunning for her will no doubt use crappy tests, incomparable research subjects, and the like to try to discredit her work.
 
D

Djembe

Guest
any idea when the info from this talk is going to be available, maybe a transcript of what Judy talked about or a video ? Would be interesting to hear more about the research that was done and the implications it has for people suffering from ME/XAND
 

dannybex

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Danny,
Right, she knows that, but the context was the apparent spread of the disease in various locations surrounding documented outbreaks like Incline Village or N.C. These outbreaks have resulted in apparent "hot spots" that have a higher incidence of background asymptomatic XMRV in the general population.

She said, "the patients compounded the controls" in these areas particularly Reno, so controls where selected from areas as far away as Maryland, which has a low incidence of XMRV. So she was considering the epidemiology of XMRV when she said that. Follow up studies by epidemiologists will be fascinating.
That's for sure!

Followup question: Did she say if the controls in the outbreak areas had higher levels of XMRV (higher than the average 3.7%)?

Also, did she say anything about the environments where these outbreaks took place, i.e., possible mold, pesticide, chemical exposure issues that may be involved?

Thanks Levi,

d.

p.s You do realize that you'll probably become a 'Senior Member' in the next day or two from all the questions you'll get? :)
 

dannybex

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Thanks Levi...

Hopefully they'll post a video of it in the next couple of days, maybe on YouTube? It would be really interesting to learn about the XMRV levels in the 'healthy' folks in the outbreak areas.

Thanks so much,

d.
 

Cort

Phoenix Rising Founder
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It sounds like outbreaks really could make a difference. The NCI will be looking very closely at these controls. They're obviously very important to knowing the overall spread of the virus in the population (which is why researchers have called for more information on just to those controls were).

If they're close contacts then they could overstate the prevalence of the virus. But if they're all from 'non outbreak' areas then you have a truer sense of overall prevalence.

Non Outbreaks - But what about people who are not in 'outbreak' areas. I assume that most of us were not. ME/CFS is everywhere or is it? Now I'm wondering again if she's talking about a certain subset of patients. Is this the outbreak ME/CFS or the endemic ME/CFS? Maybe its both - maybe certain conditions (another virus?) increase the infectivity of XMRV - causing an outbreak. If they're not there you get a very slow spread.

That Reeves said the virus was 'ubiquitous' sticks in my mind. Maybe he was misquoted but if he wasn't he's not an idiot - no one who works for the CDC - a highly acclaimed place to be - is an idiot. If he said that he has some reason for saying that. What does he mean by that? What a weird statement . What was that all about? us

Endoretrovirus - Then there is the endoretrovirus angle; is this a retrovirus that's been embedded in our genome for millennia that has escaped and is replicating in our cells? Andrew Lloyd wondered about this and someone from the WPI emphatically said No! but then Joey reported that Dr. Peterson didn't close the door on that possibility.