Ancient Retrovirus Study/Tufts University & U. Illinois-Chicago

sarahg

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I am having my first blood draw on march 17'th. Here is a suggestion, Shelly and others, if you have questions, it is easy enough to ask them by e-mail. They are usually pretty prompt (within a day or 2) at getting back to you, and that way you can cut out any accents and also have a record of the responses. I usually have to read their emails like 3 times to absorb them. Obviously doesn't work for the interviews, but for the in-between stuff, it's ok.
 

FernRhizome

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I would imagine the funding might be from NIH or NIC....there letter acronym? Or even WPI?....but you would have remembered that probably! ~Fern
 

SeaShel

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I finally remembered - it was that they were waiting to hear from the IRB.

From my former life, that's Institutional Review Board, not even close to funding yet.

Shelley
 

FernRhizome

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Thanks Shelly......what was your formal life? where you involved in medical research or government? I think it's great we all keep asking the study organizers about the XMRV......our continued interest can only help spurr their committment.....:)
 

SeaShel

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Hi Fern -

I've tried to avoid a formal life, but in my former life I did a variety of things for a implantable medical device company. (sorry, couldn't resist - I catch myself doing the wrong word thing all the time also).

Nothing technical though, my final position was in HR. Knowing IRB is just an osmosis thing from writing job postings and interviewing and sitting in on lots of meetings when I was in the production supervision area and working with new product development folks and clinical trial and qa folks.

Between the time that has passed since I've been able to work, and the cfids memory and cognitive issues, things are increasingly fuzzy. I was actually kind of surprised and happy that IRB even rang a bell.

Shelley
 

FernRhizome

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Yes, I had to look at HR for awhile before I realized it meant Human Resources! Won't it be great two years from now when the paper comes out on us and we can all discuss it on this very thread! But maybe there will be an XMRV treatment by then & we'll all go dancing instead! ~Fern
 

sarahg

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Having my first blood draw on Wednesday. It's just blowing my mind that somebody is going to come to my house to take my blood.Very responsible way to design a study, so as not to exclude people who would look at having to go somewhere and think there is no way they could do it.
 

Kati

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Now Sarah, you don't have to clean your home just for the phlebotomist to come for the blood draw ok??? :tongue:
 

FernRhizome

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Sarahg:
I know! When the Chicago folks told me they'd send someone to my house no matter where I was in the U.S., even a rural state, I was incredulous. I think I asked them several times to confirm it! And, living in a rural state, when the phlebotomist showed up I actually found myself a bit anxious about exactly how my blood would be kept in the right temperature on the 2 hour ride it had back to a big city for preparation and shipping. ~Fern
 

SeaShel

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On top of them coming to the house, the first one I had the woman was so excellent at her job that I didn't even feel the needle! (Second one not as good, but still better than anyone at my doc's office.)

My experience is that they are in and out of your home lickety split also.

They really couldn't make it any easier to participate.

Shelley
 

sarahg

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Well, I've given my blood. The phlebotomist was nice, although very dressed up for st. patricks day. So now my interview is at like 4 or 5 I don't remember. I guess I'll see when they call.

Fern- I was living pretty much as rural as you are (same state even...but you knew that) when I first signed up for it and I was shocked. I kept saying "you're going to come HERE????... HERE?" Lived on a dead end dirt road with no electricity, and it made no difference to them. Course I sadly don't live there anymore...but the point is they would have come. Crazy.

I noticed the mailer that my blood went in was addressed to be sent to Tufts. Is that everyone's experience, or does some go to chicago as well?
 

FernRhizome

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Brigette Huber is at Tufts and she is doing the blood work for the retrovirus research part of the study. Chicago is where the other researcher, Renee Talyor oversees the questionnaires and patient recruiting etc. They are collaborating. Glad it all went well! Hopefully the WPI testing will be as broad based as this study, once they get rolling. Surprised none of us have had a phone call yet from WPI. ~Fern
 

sarahg

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Oh my the whole survey thing is like reading a standardized test out loud. I nearly lost my voice by the end.

Thanks Fern for the info. I've got my fingers crossed that they get the funding eventually to run XMRV tests on all the samples. I bet all of you have your fingers crossed too.
 

SeaShel

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Hi GG,

I was told somewhere along the line that they have the number of subjects they need.

Shelley
 

Rrrr

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Fern, I followed a similar path. I had mono in college and did not recover for a year. Then it went away for 7 yrs. Then I got pneumonia and never recovered from that. That was 20 yrs ago. As mention a while back, I'm in this Tufts study, too. -- Rrrr

The study at this point is underway and I think it is closed. But you could always contact Dr. Renee Taylor just in case they still need a few folks. I think there are 128 of us in the study from around the U.S. ~FernRhizome

PS I had a severe case of mono in college, but then bounced back and had a healthy life until about 12 years later when I contracted a viral syndrome which kept coming back each month and then five months later I contracted something else, some major major influenza thing and that was the end of life as I knew it and the years have rolled by, all 17 of them....my EBV is quite elevated.
 

Rrrr

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save your voice!: i did the survey via snailmail. they said that was okay. the 2nd time i did it, the first time was verbal. but the 2nd time, i just printed it out after they emailed it to me and i filled it out and mailed it back.

Oh my the whole survey thing is like reading a standardized test out loud. I nearly lost my voice by the end.

Thanks Fern for the info. I've got my fingers crossed that they get the funding eventually to run XMRV tests on all the samples. I bet all of you have your fingers crossed too.
 

FernRhizome

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Rrrr good idea about the snailmail survey. Wow, I've been sick 18 years.....you've got two more years on me! What year did you have mono? I had mono in '78, I think, then was fine until '92 (14 year break there....). ~fern