Discussion in 'Active Clinical Studies' started by Dreambirdie, Jun 21, 2010.
Will Stanford send us the results or we must go there and pick up a copy?
i've been recently tested in Palo Alto for Dr. M's study
10 vials of blood did me in! the next day, down i went for a week. gums looked white. i was out of commission. i believe i got anemic on top of cfids.
Jane Norris told me she had sung Beatles' songs with someone! i brought a book, but wound up talking with Jane. she's very nice. was kind of mysterious getting there even with MapQuest directions. nice drive down from San Francisco.
we'll just have to put our results on hold and not worry about them. 6 mo's to a year is quite a while to wait.
i pulled out of the extra crash state from blood test. i wonder if that happened to anyone else. now i'm back to my usual downs & ups with cfids.
Dr. Montoya must have reliable testing protocol. i'd HATE for anything like what happened with CDC to happen with the XMRV part of his study.
situation with cfids has gotten ve-e-r-r-r-y interesting. i want CDC to eat crow. that's my fiendish wish- best, salome
Does anyone have the phone number for Jane---the study coordinator?
Please PM me, if you do. Thanks! ~DB
THANKS EVERYONE... I got the number.
The study is STILL OPEN, btw, to anyone interested.
Just went down yesterday for this study...Jane is soooooo nice. It's such a pleasure to walk into a calm, quiet medical facility where the person already completely understands this illness and what it's like! No explaining! No embarrassment! Just easy, friendly understanding.
I'm just sorry we have to wait so long for results--which by the way they do eventually send to you.
She said they still have not got enough healthy controls (they want two per), and have not started pairing people up, nor have they fully decided on the list of pathogens, so testing has not started yet. Start sending your healthy friends down there! SHe mentioned it was in conjunction with Columbia university--I wonder if they are taking healthy control samples there?
I followed Dreambirdie's excellent advice and super-hydrated beforehand with coconut water. I had one brief moment of wooziness (very brief) but have felt perfectly great since. I kind of thought of it as a bloodletting (!) which actually can be useful when the blood is toxic. Kind of like the Keith Richards approach.
It was altogether a pleasant experience, and I feel happy to have made my contribution to the science around this illness. Even if we don't benefit personally (though I hope we will) at least some future generation may reap some positive effect from our little offerings.
I thought they requested those announcements and phone numbers be taken down because they were bombarded and overwhelmed with applicants. Indeed Jane is a sweety. They do have a preclusion list of which I qualified for....bummed, haven't been in the city for a while. Oh well, I have been tested inside out with Dr P anyhow.....did 32 vials of blood and a treadmill my first day of testing. Yes, I was sick for days. Good thing I wasn't driving myself. Couldn't drive back then anyhow.
Little darling, it's been a long cold lonely winter
Little darling, it feels like years since it's been here
Here comes the sun
What are the requirements to be a healthy control in the Montoya study? I have a lot of friends back in the Bay Area I could mention this to.
I'll shoot an email to Jane to find out the specifics
It might be different if you are his patient
Mote of envy that you'll be seeing him--2yr waitlist!! Have fun!
If I understood your post correctly -you were initially precluded from the study?? So was I, but the requirements changed, and I was able to get in. You may also,
Thanks JAH, maybe I'll give em a call. Yes, I was precluded, but it was in the very early days of recruitment that I spoke with her, and if I remember right, they were still working on the exclusionary criteria.
Your really close...convenient for you. Glad you got in.
For some reason, I was thinking you were bay area when I posted my message- the fact that you are out of the area may preclude you- I know they are looking for local pwcs.
Results should be fascinating- really huge study. I feel lucky to have gotten in- just impatient for the results!
I'm about 5-6 hours from Palo Alto....don't remember that being a problem....but with my memory, anything is possible.
FYI-the study is still open.
They are still in need of healthy control subjects. I'm trying to recruit healthy controls. The sooner we get the study filled the sooner we'll get the results.
Study still going on.
I just had blood drawn last week. They said they are still looking for a few more PWCs, and aren't having trouble finding controls. However, I was told that none of the blood has been tested yet, due to "negotiations," so it still might be a while. I was also told 6-12 months. I'd like to see the results of the study.
Has anyone received their blood results yet?
While they will now be woefully outdated, I really wanted something comprehensive to move forward from.
Two and a half years! Sheesh!
leela NO results yet! They said it would be 6-12 months to get them.
It's almost 3 years for me. I had my blood drawn in early June of 2010.
Ridiculous to drag the wait out so long for people who are so ill. Pathetic, actually.
What I don't get is *surely* they've run it through all the tests by now, or most, wouldn't you think?
I can see how long *analyzing* the data might take, but I'd really like to see what blood results they've got now,
even if it's not complete.
Me too. I wanted the results 2 years ago.
It makes me question their competence a bit. Will the results I get really be MINE?
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