WPI expects to start XMRV study (with XMRV testing) in early March 2010

Messages
1,575
Likes
162
extract from Dr Cheney and Dr Mikovits Feb 20 2010 - transcribed by Garcia

Part 2 [10mins to 20mins], between Kim and Lilly.

Judy (continued): So we will very shortly have all of the testing available but for now the best way to look for the virus is to participate in research studies and I know there was one question on: You told us that research studies are going to be online, when are they are coming online at the WP institute? Well we received word, we were waiting for word from our institutional review board for human assurance. We were waiting for approval of our studies, literally since October and given that this is a new human retrovirus our institutional review board went out really in every way to make sure that we protect patient privacy and now they are convinced we should have approval at the end of this month, in March for an XMRV study across a number of diseases and patient populations, next week.

So if youve applied to the website and youre waiting for an answer and you havent gotten one, we are going to start working through that list next week and begin these studies to do large-scale testing. And we at the institute can do all 4 tests, and we will know beyond a shadow of a doubt if youre infected with XMRV.
Make sure you've applied to the WPI website if you're interested in participating!
 

Frickly

Senior Member
Messages
1,049
Likes
39
Location
Texas
Thanks Islandfinn, I do hope I can be involved in the study. Do you know if autism was discussed and what the status is on autism/xmrv studies? I would love to get my son involved in that.
 

Kati

Patient in training
Messages
5,488
Likes
19,600
Frickly I am not sure if she discussed autism in the talk yesterday but the text from IF implies different diseases especially autism- why don't you register him too?
 
Messages
553
Likes
6
Location
Eastern High Sierra
Ah, thanks very much for the transcribed extract, and that's a great idea: I understand that even for those who can hear it the discussion is difficult to understand so maybe more folks can transcribe just the most pertinent and understandable parts.

Hoping we ALL get to take part in the study!
 
Messages
1,575
Likes
162
Thanks Islandfinn, I do hope I can be involved in the study. Do you know if autism was discussed and what the status is on autism/xmrv studies? I would love to get my son involved in that.
Hi Frickly,

Me too - I want to be in the study sooooo badly.

I wasn't able to listen to or read the Cheney/Mikovits web talk. I just saw the bit of transcription that Garcia posted and this jumped out at me. I wanted to make sure that everyone knew about the upcoming study & got their applications in if they wanted a chance to participate.

In this excerpt, she does say
an XMRV study across a number of diseases and patient populations
and WPI has referred to autism before, so I hope so. Maybe something more was said in the rest of the talk - you could check the transcripts here. Did you register your son seperately and mention him in your application? If I were in your shoes, I think I'd register us both separately + emphasize everywhere possible that what the other has, and if there are any other family members with possibly-related diseases, as well.
 

Frickly

Senior Member
Messages
1,049
Likes
39
Location
Texas
Thanks Natasa! This is excellent news. I just registered my son on WPI and remarked that I was his mother and had CFS. If they call me then I wonder if I can get my identical twin sister in on the study. People love to study twins! :)

btw Judy will be speaking at Autism One conference in Chicago, last Saturday in May I think. Also David Kirby will be speaking on xmrv amongst other things on the same day.
http://www.autismone.org/content/world-changes-may
Edited to add: I just started a new thread under "Media Events, talks" as I thought the conference deserved a thread of it's own.

Thanks Natasa,
 

SeaShel

Senior Member
Messages
111
Likes
0
Location
AZ
I told a friend last night that I feel like Arnold Horshak in the "Welcome Back Kotter" tv show.

Bouncing around in my chair, waving my arm wildly in the air - Horshak had his own weird noise he made, but I'm just screeching "pick me pick me pick me".

I've never ever wanted my blood drawn so badly or been so willing to try whatever allopathic med they want me to try. In Dr Judy I trust!

:-D

Shelley