WPI USA XMRV testing/study--IT HAS STARTED

[Rrrr]

you are right, leaves, but i guess i want to ready just in case. and, if i'm lucky, i will (many of us will) get into some xmrv trials soon. didn't someone say that WPI is hoping to start some trials by fall 2010?

 

[citybug]

do you know if it is about testing, or for further study? are they sending any more questionnaires for you to fill out? Do you know how many vials they are taking? Very exciting, hope I get a call.

 

[hensue]

Rrr
So happy a lot of people are getting tested. It is a pretty nerve racking expierence whatever happens. Then it kind of levels out if you are positive and you wait for the next thing to happen.
Hopefully clinical studies real soon.
I am ready and I know you want to be validated that you have been sick and a cause for it after 20 years. I am so ready to help this younger generation!! Whether I get well or not it is not fair.
I know I have been told many times life is not fair.

It is not fair that children and teenagers and men and women in the prime of there life be struck by such an illness. That most people do not comprehend and I hope they will some day.

I just hope this is a big piece of the puzzle.

Leaves you are right there is nothing the Docs can do but we will be ready when they :victory::Sign Good Job:say ok.

I support WPI so much! They have been wonderful to so many people!!!

 

[spindrift]

All 4 tests? Someone help me here. I thought there was only PCR, culture and serology. So what is the fourth one?

 

[Rrrr]

do you know if it is about testing, or for further study? are they sending any more questionnaires for you to fill out? Do you know how many vials they are taking? Very exciting, hope I get a call.

hi kdp,

i am assuming this study is part of reconfirming the original Science paper results. or maybe it is part of the big federal gov't study now underway? maybe it is to find folks who ARE xmrv positive, so they will have folks to use in their drug trials? i am not sure. i think there will be some paper work coming with the kit on thursday, and i'll be sure to tell everyone what is in that paper work. not sure if it will include more questionnaires. i have no idea how many vials they are taking. but i hope it is a lot, so they can feel free to study my blood for years to come.

warmly
rrrr

 

[Rrrr]

All 4 tests? Someone help me here. I thought there was only PCR, culture and serology. So what is the fourth one?

i know! i thought that, too. i'll let you know what the paper work says when the kit comes.

 

[fred]

UK folks: in the UK study, what tests are included? all 4, like the USA test? and in the UK study, how many folks are they testing?

Yep, all four. There are 225 people taking part, I think, and 50 samples have already arrived in Reno. The rest are on hold until the volcano ash clears.

 

[jimbob]

remember everyone that you have to be a patient of one of only four doctors in the country! I begged them to let me in this one because of who my former doctor was, but gloria said no. She is sending me a consent form for maybe the next one.

 

[Hope123]

remember everyone that you have to be a patient of one of only four doctors in the country! I begged them to let me in this one because of who my former doctor was, but gloria said no. She is sending me a consent form for maybe the next one.

Jimbob, I think you're confusing this WPI study with the CFIDS Association of America Biobank (which restricted participation to 4 doctors currently). I'll let Rrrr answer but I think WPI is drawing their participants from people who registered with them on their website in the past and which you can still do I believe.

 

[Frickly]

I am happy for everyone that got in the study but sad that I was not chosen. I am curious about what they are looking for in participants.

 

[JillBohr]

I am happy for everyone that got in the study but sad that I was not chosen. I am curious about what they are looking for in participants.

Be patient Frickly. Well, at least try. You may still be included. Perhaps you can try emailing them.

 

[jimbob]

thanks hope, you're right. my COGNITIVE function isn't too good today!

 

[Rrrr]

I am happy for everyone that got in the study but sad that I was not chosen. I am curious about what they are looking for in participants.

hi frickly, did you fill out the questionnaire on the WPI website (look for their research section). i don't think they are being picky about who they select. it seems to me that they are taking everyone for the study. they will likely cut it off when they reach a certain number, but just fill out the questionnaire and/or email judy mikovits herself (i posted her email address a bit earlier in this thread).

rrrr

 

[Rrrr]

clarification: i just called the phlebotomy company (WPI is using) again to clarify and i'm sorry to report that i got the info wrong! the test kit won't come to anyone tomorrow, it is being mailed out tomorrow. it will not get to us til next week.

by the way, the phlebotomy company will send a phlebotomist to yr home if you need it. this is to be arranged with the phlebotomy company, again, if it is needed. the company's ph number is 888-664-4382, and i think you'd talk to Tammy. (a good ph number to have on this thread, as it may come in handy later for some of us.)

rrrr

 

[shannah]

Well I have to admit that I just emailed Judy Mikovits to ask if we Canadians dared to hope that we might be included in this upcoming study. Within 10 minutes I received these exciting words:

"Yes, we are working in Canada too and will get to you!"

It has been a l-o-n-g six months trying to wait so patiently.

 

[serenity]

i just filled out my questionnaire. wow, big decision for me to go ahead & do it but i did!

 

[*GG*]

Rrrr,

I emailed the WPI because I believe that I filled this questionarre out a while back, I asked them to confirm. Did you get a confirmation that the form was complete/completed? I am also to become a patient of Dr Fenselstein but they have not given me a date yet! I already see 3 CFS "specialist". Just started getting so damn fed up with this illness about 2 years ago, suffering for only 7 years now. 1 for my sleep and the 1st best 1 I see on a consistent basis.

 

[Kati]

Well I have to admit that I just emailed Judy Mikovits to ask if we Canadians dared to hope that we might be included in this upcoming study. Within 10 minutes I received these exciting words:

"Yes, we are working in Canada too and will get to you!"

It has been a l-o-n-g six months trying to wait so patiently.

Shannah this is the best news I've heard in a while. Thanks!

 

[dmarie4301]

I had received an email from Debbie Taylor-Cramer (with her lab room # in the address too), March 28th, that I would be on a study and would be called in three months if not sooner. Maybe I will get a call.

I also had emailed them about becoming a patient at WPI, and was told this by Angelina: " At this time we are not scheduling appointments. Once we are ready we will contact everyone - I will add your name to that interest list. Once you are contacted you can ask questions about insurance, etc. Studies will be ongoing so you may not have fit a specific need for any current testing but could at a later date."

I dont know why she said at the end there that I may not have fit into their testing needs, but there you see it. So, I dont know if I will get a call now or not.

I also have an important question for you all: How do they know if any of us fit the Canadian Criteria for sure??? Ive never been tested for NK killer cells, etc, etc., just have the label of CFS. I thot they would want to know more about my history. Wouldnt this possibly skew results if they are just putting people in the study based on one tiny questionaire??? Is that very thorough?

 

[Frickly]

Hi, everyone I filled out the research form on wpi a couple of months ago. I just emailed Judy Mikovits to tell her that I have cfs, my twin sister has lyme and my son has autism. Who wouldn't want to study us? Will wait and see what happens.