WPI USA XMRV testing/study--IT HAS STARTED

[Rrrr]

The WPI is way behind. I was tested along with over 150 other patients as part of a study back in September/October. I and others are still waiting for our XMRV results. We've tried sending emails etc.... but have received no response. So far only a few results have trickled in.

I'm just saying not to expect results anytime soon. It has been over 6 months for me and still no end in sight with getting my results.

i wonder if this study that you are in, inverted tree, and the one i (and 399 others) will be in are going to be on similar timelines or different time lines. the study that you are in, can you tell us who is conducting it? the study i am to be in is the one with the NIH, and i assume that it is part of the big federal study that is now happening, but really, i have no idea if i'm right. i did put a call into the study's patient advocate, debbie taylor-cramer, to ask her these questions. have not heard back.

separately, as mentioned earlier, i never got an email response back from the WPI when i first filled out the questionnaire (sp?) on their website. so i filled it out again just the other week AND emailed judy mikovits 6 or so names and addresses of cfs friends who wanted to be in the study. only 4 of the 6 names have been contacted.

tammy, the rep from the phleb services, said she is so busy, and her phone is ringing off the hook, that she is going crazy. and i think she meant from this xmrv study. she alone is handling it. no one else at her office! just her. and it is 400 patients.

 

[InvertedTree]

Oops-I got a private email correcting me about the numbers. It was closer to 200 people and was conducted by Dr. Gordon and Dr. Mikovits. It sounds like you and the 399 others will get your results quicker since it is funded by NIH. I am a patient of Dr. G.

I think that everyone at the Whittemore Peterson Institute is so busy with everything that it makes sense they wouldn't be able to respond to all inquiry's. I don't want to sound like I'm critical of them at all. I think our answers lie with WPI.

I'm bedbound and not responding to any treatments so like everyone else I'm anxious to get my results.

I hope you get tested quickly and that you get your results soon Rrrr.

 

[Rrrr]

Oops-I got a private email correcting me about the numbers. It was closer to 200 people and was conducted by Dr. Gordon and Dr. Mikovits. It sounds like you and the 399 others will get your results quicker since it is funded by NIH. I am a patient of Dr. G.

I think that everyone at the Whittemore Peterson Institute is so busy with everything that it makes sense they wouldn't be able to respond to all inquiry's. I don't want to sound like I'm critical of them at all. I think our answers lie with WPI.

I'm bedbound and not responding to any treatments so like everyone else I'm anxious to get my results.

I hope you get tested quickly and that you get your results soon Rrrr.

oh, inverted tree, i hope we ALL get tested and resulted (!!) quickly. this is a hellish illness. i hope dr gordon, who i have heard good things about, gets you in some trials/studies soooooon.

 

[Kati]

I think it's important not to feel rejected because you haven't been chosen for a specific study. For one WPI can't take everyone, and for 2, WPI likely has specific criterias of inclusion and exclusion for their studies. As vague examples, on the Science study, they didn't want controls that were in contacts or family members of patients with ME/CFS. That would screw the results!

In the same way for their future studies, they are looking at patients with specific features, for instance they are studying family members that have ME/CFS AND Autism. Age range, length of illness, family history, etc... They get to pick for what is needed at the moment. Perhaps the next study will be your turn, or mine. Let's be thankful that there are studies happening and that we are getting closer to a solution.

 

[Rrrr]

I think it's important not to feel rejected because you haven't been chosen for a specific study. For one WPI can't take everyone, and for 2, WPI likely has specific criterias of inclusion and exclusion for their studies. As vague examples, on the Science study, they didn't want controls that were in contacts or family members of patients with ME/CFS. That would screw the results!

In the same way for their future studies, they are looking at patients with specific features, for instance they are studying family members that have ME/CFS AND Autism. Age range, length of illness, family history, etc... They get to pick for what is needed at the moment. Perhaps the next study will be your turn, or mine. Let's be thankful that there are studies happening and that we are getting closer to a solution.

kati is so right. now i feel like i came off as if i were gloating that i got in this study. ugh. not what i meant to do! i really feel like we are all in this together. all the info that comes out of all the studies -- dr gordons, the UK study, etc -- will, in the end, help all of us to find a cause and treatment.

warmly,
rrrr

 

[willow]

i hope to type up (and post here) the letter that came with the kit soon, but i'm super sick.

Sorry Rrrr I think I missed something key when I read this thread- how sick you are. Re-read and still feel like I've missed something. But yup it's Hellish, or feeling that way just now...... Maybe it will feel lighter tomorrow.... even a little would be good.

Anyway, I know you know this but please don't do it if it will take too much out of you or stop you from doing things you need to do. Plus I'm in the UK so quite possibly it's different. No way i can read a 3 page or even a 1 page document and process and fully understand it in less than 2 or so hrs.... and unless I do it's not informed consent. I'll try again to get details of the UK one.

Thanks Rrrr
willow x

 

[garcia]

I signed up in February and got the following email notification soon afterwards:

I'm going to take a complete guess and say that maybe they did not start sending out email notifications until somewhat later in the process.

I signed up first week of March and got the same email.

 

[Dreambirdie]

I signed up last week and got that same email too.

I wrote Judy to ask if I had been too late to get in and she responded with: "not to late ..it is a 5 year study! Cheers, Judy"

 

[Dr. Yes]

I signed up last week and got that same email too.

I wrote Judy to ask if I had been too late to get in and she responded with: "not to late ..it is a 5 year study! Cheers, Judy"

Judy says "Cheers"?

That's a bartender for you.

 

[alphahusky]

Thanks to the person who posted Dr. Mikovits email. I did the forms last week, I just emailed her about possibly getting into some study before the baby is born in Oct., as many know here I am just so upset that I breastfed my daughter and have now been told by my doctor not to breastfeed the baby I'm expecting. If I had some result, it would take weight off my mind. I also have a first cousin who has Asperger's (Autism Spectrum), so I included that info. Perhaps nothing will happen, but one never knows. I haven't read this whole thread to see if they've stopped calling people.

 

[Hope123]

I registered with the WPI the first week the registry came out but haven't heard anything. Not only did I get an e-mail confirmation, I got a snail mail letter asking for a donation.

 

[Robyn]

I registered when it first came out also but haven't heard. I e-mailed Dr. Judy but haven't heard anything. I think she's still in Europe.

 

[Andrew]

I signed up in February and got the following email notification soon afterwards:
I'm going to take a complete guess and say that maybe they did not start sending out email notifications until somewhat later in the process.

According to the email, we might not be contacted at all.

 

[Dr. Yes]

According to the email, we might not be contacted at all.

Right, they will only contact you if they select you for a research study or clinical trial; they are running several over the next few years, so I guess they will select from the volunteer pool as needed.

 

[HopingSince88]

I applied to them online too. I got an email confirmation. I figured that if they ever got some decent funding that they may do a larger study, and then they may call.

 

[Robin]

If you can afford to, and you want to be tested, it's probably better to pay for a kit. Judy has said that $ from diagnostics helps fund research so it's kind of a donation. I had initially asked if I could be in a study but I think I'll just pay for testing. Not that I'm financially flush or anything, but I know there are others who are struggling a lot more. I'll let someone else have that slot! (Unless I'm selected to be in a study for a specific reason.)

 

[SunnyGal]

I filled out the questionaire the first week or two it was available as well. Didn't hear anything back. In December my LLMD asked me to get tested and after much consideration over the cost, I went ahead with it, partly because I'd heard some of the money goes back into research. It was a lot of money to put out but I'm fortunate that I could do it and very lucky that my results came back positive.

I contacted WPI to see if they'd know I was positive so could be included in clinical trials. There doesn't seem to be a clear way for people who test positive through VIP Dx to get that info back to WPI. The person who emailed me back from WPI told me to fill out the questionnaire again and in the first area where you write comments to tell them I'd filled out the form before and have tested positive. They said that they have people who enter the data from all the questionnaires and they'd add to my data my XMRV+ status to my initial data in their database. I did as they suggested but I've no idea if this actually happened. I am hoping that when clinical trials get started that I'll get a call.

I assume that those of you who test positive through a WPI study won't have to worry about whether they know you're positive or not! That's another benefit of getting tested through a WPI study.

Good luck, Rrrr!!! Really hope your results are positive. Since the WPI is doing the testing I would think you have a really good chance of them finding it if you've got it. They're the cream of the crop testing after all!

Sunny

 

[Rrrr]

XMRV testing day

XMRV testing day for Rrrr and Amusante (aka Showercap lady, who is not wearing her shower cap).

With no traveling phlebotomist in the Boston area right now, we dragged our butts to the closest designated lab. Amusante wisely called the day before and told the lab manager we'd need a specific appt time and could not wait in the waiting room without needing to lie down. So even tho the lab was full of "customers" (mostly getting drug testing for federal jobs) there was no waiting for us! The lab manager made sure we were well taken care of. And the lab staff were great. They called Tammy in WA to find out that there was, in fact, no need for a saliva swab (tho it says there could be in the instructions) and then they listened compassionately while we told them what this study is all about. They were very happy for us. Even as we told the lab staff how important this was to us and everyone with CFS, we made a party out of the outing. It was a celebratory feeling indeed -- even through the exhaustion and brain fog and post-outing crash.

May we all get tested, treated and healed! May we all get our lives back!!!

Warmly,
Rrrr

 

[gracenote]

You guys are great.

 

[JillBohr]

You guys are great.

I second that! I love those pics! Those should be FRONT PAGED! Heee Heee. I love it. I love it. I love it. Rrrr - you so awesome.