WPI USA XMRV testing/study--IT HAS STARTED

Messages
52
Likes
3
Location
FL, PA
hi all. i am new to this forum. been lurking a while. not new to cfs. had for many years, but only diagnosed a few years ago. i read and post over at prohealth.

i have been reading this thread with interest! both me and my brother (only sibling) have classic cfs. i would think wpi may want some of our blood. we have all kinds of crazy high titers to ebv and hhv6. and i have had the rnasel test- with very abnormal results. so we would probably be good "candidates" to look for xmrv in.

does anyone know-- is this study free to participants? if not what is cost for bloodtest thru the study? i do have insurance- but have noooo idea if it might cover xmrv test-- prob not.

what is cost of xmrv bloodtest NOT thru the study (if i go thru one of my drs.)??

thanks!!!!!!!!!!!! this is an exciting time. i hope something works out to help cfs patients!!!!!!!!!!!!!!!!!! i have read that canada and australia have recently banned cfs patients from donating blood. yay!!!!!!!!!

bigmama2
 

JillBohr

Senior Member
Messages
247
Likes
0
Location
Columbus, OH
hi all. i am new to this forum. been lurking a while. not new to cfs. had for many years, but only diagnosed a few years ago. i read and post over at prohealth.

i have been reading this thread with interest! both me and my brother (only sibling) have classic cfs. i would think wpi may want some of our blood. we have all kinds of crazy high titers to ebv and hhv6. and i have had the rnasel test- with very abnormal results. so we would probably be good "candidates" to look for xmrv in.

does anyone know-- is this study free to participants? if not what is cost for bloodtest thru the study? i do have insurance- but have noooo idea if it might cover xmrv test-- prob not.

what is cost of xmrv bloodtest NOT thru the study (if i go thru one of my drs.)??

thanks!!!!!!!!!!!! this is an exciting time. i hope something works out to help cfs patients!!!!!!!!!!!!!!!!!! i have read that canada and australia have recently banned cfs patients from donating blood. yay!!!!!!!!!

bigmama2
Hey Bigmama1, please go to the link I post below to sign up on the research form. Please be sure to list all of your family members and the various illnesses they have had.

https://www.wpinstitute.org/patient/volunteer_form.html

Also, if you want to pay for a test, you can get tested through VipDX for $450.00. You can call them at 775-351-1890 and ask for an XMRV test kit.
 
Messages
5
Likes
0
Location
Boston area
OMG! Ya'll are Hi....larious! This deserved my best Texas accent. :)
I'm so glad some of you are getting smiles from the pix Rrrr posted. I almost never post here -- except for my very rare appearances in blue shower caps or visiting blood labs. :) But you all are so great, and so brave!

On the way to the lab yesterday, Rrrr and I were the yin and yang of reactions. Rrrr was on a crazy-can't-stop-smiling adrenaline high, while I was so overwhelmed I started crying at the drop of a pin. (Or needle -- my veins were so elusive it took three sticks to get the four vials filled. I'm so lucky it doesn't bother me!)

It IS overwhelming, all that is happening now. It may sound nuts, but I'm almost afraid to feel as excited and hopeful as I do now. I pray SO hard that this is "it" for all of us. ... Jan
 

Rrrr

Senior Member
Messages
1,571
Likes
735
someone sent this to me. it is from the NIH database and she found the description of this study, which was awarded in sept 2009.

<http://www.researchgrantdatabase.com/g/1R01AI078234-01A2/NEW-STRATEGIES-TO-DECIPHER-THE-PATHOPHYSIOLOGY-OF-CHRONIC-FATIGUE-SYNDROME/>

NEW STRATEGIES TO DECIPHER THE PATHOPHYSIOLOGY OF CHRONIC FATIGUE SYNDROME

Judy Anne Mikovits, Research Director
Whittemore Peterson Institute, 6600 North Wingfield Pkwy, Sparks, Nv 89436

Grant 1R01AI078234-01A2 from National Institute Of Allergy And Infectious Diseases

Abstract: Chronic Fatigue Syndrome (CFS) is a complex disease estimated to affect between 0.5%-2% of the population in the Western world. Its pathogenesis is thought to involve both inherited and environmental (including viral) components, as with other chronic inflammatory diseases such as, multiple sclerosis, rheumatoid arthritis, and atherosclerosis. Consistent with this chronic inflammatory context, CFS patients are known to have a shortened life-span and are at risk for developing lymphoma. We hypothesize that chronic inflammatory stimulation from active and recurrent infections of multiple viruses on a susceptible host genetic background leads to the pathogenesis characterized by CFS. The overall goal of this research project is to define these viral and host parameters in European and American cohorts of CFS patients that correlate with distinct disease phenotypes, including the development of mantle cell lymphoma (MCL) in a subgroup of the American cohort. In Aim 1) we will identify and confirm novel viral infections in European and American CFS patient cohorts. 1.1) we will use two complementary methods for detection of novel virus mRNA massive parallel signature sequencing (MPSS) and a custom DNA microarray. 1.2) Quantitative polymerase chain reaction Q-PCR will be used for confirmation of virus gene expression. 1.3) immortalized cell lines will be developed to isolate virus and elucidate links between virus and host cell gene expression. In Aim 2), we will elucidate genetic factors of susceptibility and the dysregulation of the host defense system. Specifically, we will determine 2.1) PBMC gene expression of 88 human genes previously confirmed as being differentially expressed in CFS 2.2) serum chemokine and cytokine profiles using multiplex suspension antibody arrays on a Luminex platform 2.3) HLA, KIR genotypes and whole genome SNP profiles 2.4) Defects in the type I Interferon signaling pathway. In each subaim both cohorts will be compared to normal and disease controls using specimens of serum and PBMC taken at multiple time-points from individual patients and taken from our unique and extensive sample repository. This study will provide information necessary for development of treatment and diagnostic strategies for distinct subgroups of CFS patients, and may identify novel virus associations, genetic signatures and biomarkers, which can predict the development of MCL, thus enabling use of preventive therapeutics. The proposed research will provide significant insight into the disease mechanisms of Chronic Fatigue Syndrome so accurate testing and specific treatments can be developed with a goal of curing the disease and preventing life-threatening complications

Relevance: The proposed research will provide significant insight into the disease mechanisms of Chronic Fatigue Syndrome so accurate testing and specific treatments can be developed with a goal of curing the disease and preventing life-threatening complications
Project start date: 2009-09-28
Project end date: 2014-08-31
Budget start date: 28-SEP-2009
Budget end date: 31-AUG-2010
PFA/PA: <http://grants.nih.gov/grants/guide/pa-files/PA-08-246.html>PA-08-246
1R01AI078234-01A2 (2009): $335600

http://www.researchgrantdatabase.co...-PATHOPHYSIOLOGY-OF-CHRONIC-FATIGUE-SYNDROME/
 

Rrrr

Senior Member
Messages
1,571
Likes
735
Where are all the other US folks who are in this WPI/NIH study??????? so far i only know of 5 people (all how are friends of mine, from Boston to San Diego) who have gotten their xmrv kits from WPI to be participants in this study. are there others? is there anyone on this forum who got contacted by the phlebotomy services folks??? anyone?
 

Hope123

Senior Member
Messages
1,264
Likes
1,082
Where are all the other US folks who are in this WPI/NIH study??????? so far i only know of 5 people (all how are friends of mine, from Boston to San Diego) who have gotten their xmrv kits from WPI to be participants in this study. are there others? is there anyone on this forum who got contacted by the phlebotomy services folks??? anyone?
I really hope they're going to use their online registry rather than just expect folks to re-email them to get into any current XMRV study. Not only would it create another mess of e-mails if people re-emailed them, it would also be unfair to the folks already signed up for the registry and are expecting to get called if their profiles match what they are looking for.
 

Gemini

Senior Member
Messages
1,167
Likes
2,559
Location
East Coast USA
someone sent this to me. it is from the NIH database and she found the description of this study, which was awarded in sept 2009.

<http://www.researchgrantdatabase.com/g/1R01AI078234-01A2/NEW-STRATEGIES-TO-DECIPHER-THE-PATHOPHYSIOLOGY-OF-CHRONIC-FATIGUE-SYNDROME/>

NEW STRATEGIES TO DECIPHER THE PATHOPHYSIOLOGY OF CHRONIC FATIGUE SYNDROME

Judy Anne Mikovits, Research Director
Whittemore Peterson Institute, 6600 North Wingfield Pkwy, Sparks, Nv 89436

Grant 1R01AI078234-01A2 from National Institute Of Allergy And Infectious Diseases
Rrrr,

Thanks for posting info' re: the NIAID Grant awarded WPI to study infections and genetics in US and European patients over five years, 2009-2014. Quite a comprehensive study design.

Awarded before publication of the October 2009 Science article which is interesting timing.

Gemini
 
Messages
993
Likes
824
Location
Ohio, USA
Rrrr - you guys are so cute in the photos - it's great to see smiling, what a great day :victory:


I'm a little disappointed to see this is a 5 year study - does that mean that we will have no results at all until after the end - they wouldn't release anything before then would they?

So glad to see this going on!

Kristina
 

Rrrr

Senior Member
Messages
1,571
Likes
735
hi kristina,

i think they will tell folks their results all along the way of the 5 yr study... i hope! i got that impression from judy m.

rrrr
 

Rrrr

Senior Member
Messages
1,571
Likes
735
just got a message from tammy from phlebotomy services, the group doing the blood draws for this WPI/NIH study, the one this tread is focusing on. i had left her a voicemail asking where they are at in the study, how many folks have they sent the test kit out to, etc. i asked because i'm shocked that no one on this phx rising board/forum besides little old me has gotten the call, the kit and done the test (as part of this study).

well, tammy said this: she has personally called 100 study participants so far. (not sure how many she has sent the blood draw kits to -- she implied it is hard to reach people.) and she is expecting another list of study participants she is to call -- about 100 from WPI -- in the next day or two.

rrrr
 

lululowry

Senior Member
Messages
103
Likes
0
Location
Athens, Georgia
:victory:Those pics are AWESOME! :victory: Yay for y'all!:D

Just put a smile on my face, which was not easy to do as I have just been reading about the situation in the UK courtesy of DysautonomiaXMRV on the 5th Invest in ME/CFS Conference - Programme May 24 2010 thread. :eek:

Seriously, y'all are helping each and every one of us!
 

FernRhizome

Senior Member
Messages
412
Likes
4
Has anyone heard if we'll be notified of our study results within a certain time frame? Will be told as they are done, individual contacts, one by one, in order of how our blood samples were collected? Or will they wait six months until all the tests are done before we get our results? I have e-mailed Debbie to ask but if anyone else knows or hears could you please post that information? I'd hate to have to wait six months! Would be nice if they could do them in batches & let us know sooner.
 

Rrrr

Senior Member
Messages
1,571
Likes
735
judy m said she'd send out the test results from this study to individuals about once a month. but i never got my results yet, and it has been well over 1 month.

did you give a blood sample, fern, for this study?????

Has anyone heard if we'll be notified of our study results within a certain time frame? Will be told as they are done, individual contacts, one by one, in order of how our blood samples were collected? Or will they wait six months until all the tests are done before we get our results? I have e-mailed Debbie to ask but if anyone else knows or hears could you please post that information? I'd hate to have to wait six months! Would be nice if they could do them in batches & let us know sooner.