WPI USA XMRV testing/study--IT HAS STARTED

[JillBohr]

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.

Is there anybody here that has some weight (influence) that can get Frickly in? She is definitely a prime candidate for this study. Please. I want more ME/CFS mothers in this that have children with autism.

 

[Frickly]

Already heard back from Judy M!

She said the study has begun and they are pulling together the list now and then need to get approval to proceed. She said she did want to study me as they are putting families with overlapping disease symptoms at the top of the list. They are trying support their hypothisis that XMRV creates an underlying immune deficiency. She says they have over 4000 forms and she has copied my email over to the patient coordinator. :victory::victory:

 

[Rrrr]

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.

NO, i never got confirmation from the questionarre either!!! i suggset you call or email WPI to ask. why not?

 

[Rrrr]

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?

i agree with yr last question!!!!!! -- rrrr

 

[Rrrr]

Is there anybody here that has some weight (influence) that can get Frickly in? She is definitely a prime candidate for this study. Please. I want more ME/CFS mothers in this that have children with autism.

i have emailed with judy, like so many of us have, but i don't have any more weight than anyone else. i think she is in spain for the next week, so will have limited access to email. but she seems to respond to just about ALL emails all of us send her, right? again, i'm not special. she replies to all emails from all of us.

 

[Rrrr]

She said the study has begun and they are pulling together the list now and then need to get approval to proceed. She said she did want to study me as they are putting families with overlapping disease symptoms at the top of the list. They are trying support their hypothisis that XMRV creates an underlying immune deficiency. She says they have over 4000 forms and she has copied my email over to the patient coordinator. :victory::victory:

YAAAAY!!!!!

and 4000, wow!

 

[lostinthedesert]

Automated responses from wpi may have gone into some folks spam box. I wonder if a persons doctor matters. The first study used patients of well known docs.

 

[JillBohr]

i have emailed with judy, like so many of us have, but i don't have any more weight than anyone else. i think she is in spain for the next week, so will have limited access to email. but she seems to respond to just about ALL emails all of us send her, right? again, i'm not special. she replies to all emails from all of us.

Oh Rrrr, of course your special. As you can see, Frickly did get her answer. I do wish we could have Judy cloned. sigh.

 

[Rrrr]

jill: thanks! i needed that today. anyway, judy's optimism is sooooo infectious, isn't it?

my friend in boston got her xmrv test kit today from WPI re the study!!!!! i did not get mine yet. fed ex is delivering them.

 

[Rrrr]

my xmrv test kit for the WPI xmrv study came today via fedex! it includes 4 test tubes (lavender tops), instructions, patient consent form, return mailing stuff.

i will type up the patient consent form that came with the test and post it here in the next day or two, but i'm too tired to do it now. but i thought i'd at least send you the official study name:

"New Strategies to Decipher the Pathophysiology of CFS"
Protocol # B09/10-019
Sponsor: NIH-NIAID #R01AI078234

I love the name of this study, and it is great to see that the NIH is a sponsor!!!!!! does that mean this is part of the really large federal study????

They say in the patient consent form that there will be 400 participants. And when I talked to the phlebotomy company rep today, she said she had 80 names now, and will get 200 more shortly. So that means that there are about 120 slots left (unless they have filled them all already?).

Rrrr

 

[willow]

i will type up the patient consent form that came with the test and post it here in the next day or two

Really! That would be great Rrrr. Thx so much

And Good Luck with the test!

An exciting time for PWME. Federal studies, big pharma involvement. It's almost like a real disease!!!

 

[Rrrr]

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

meanwhile, i just got off the phone with tammy, the phlebotomy services rep. she says there is no traveling phlebotomist in the boston area right now (i think she just suddenly quit?) and it will take them a week at least to find one. so i have to drive 30 min to get the test done at a pre-designed lab (can't go to any old lab for some reason). i will try to go tomorrow. with another cfs-er (showercap lady, for those who know her).

tammy said that if i go tomorrow, i am the 5th person in the country to get the study test done. and that WPI can only handle 20 test kits being sent to them each week. and, as you may recall, the letter i got stated that there will be about 400 participants in the study total. if they can only do 20 per week, that means the study will be going on for many many weeks.

rrrr

 

[InvertedTree]

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

tammy said that if i go tomorrow, i am the 5th person in the country to get the study test done. and that WPI can only handle 20 test kits being sent to them each week. and, as you may recall, the letter i got stated that there will be about 400 participants in the study total. if they can only do 20 per week, that means the study will be going on for many many weeks.

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.

 

[madmax]

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

Western blots to look for viral proteins

 

[rebecca1995]

i'm sitting here crying. my life is so so hard right now, just about hell, actually. and has been for 20 long years. and this is the first time i feel like someone in the medical community is throwing me a life line. i sure hope i'm xmrv positive.

Rrrr...I know exactly what you mean. I've appreciated how the WPI has stepped up and moved aggressively on our behalf. Like, I loved it when Annette Whittemore said flatly at CFSAC, "CFS is not a psychiatric illness and never has been. " (Or something like that.) No qualifications or equivocations, you know?

I hope you're positive too, since you do...:Retro smile: Good luck with the blood draw and everything!

 

[Andrew]

I signed up at the WPI web site a long time ago. I have not been notified about this test. Should I be worried?

 

[ahimsa]

Thank you for keeping us updated on this study

Thanks to Rrrr (hope that's spelled right - LOL!) and others for keeping us updated about this study. I'm so happy to read these updates and find out what's happening.

I also filled out a WPI patient questionnaire a long time ago. I did not get any reply, automated or otherwise. I actually did not expect a reply or confirmation (I figured they would get too many inputs to do it manually and probably had not set up something automated) so I didn't think anything about not getting a reply until now. I simply assumed that I'd only be contacted if they wanted to include me in a research study.

So, did some people got a confirmation email? I've only seen people saying that they did NOT get an email reply of any kind but have not seen that anyone did get a confirmation email (unless I've misread or misunderstood something here - very easy for me to do).

 

[dmarie4301]

Hi ahimsa!!! Fancy meeting you here!!! I called and was told I would be contacted. Then I got an email saying I was on a study, (Im still wondering if that means IN a study)....anyway, sounds like they are backlogged. They need to hire more lab workers. Hmmm, maybe I wil become a member here soon.

Donna

 

[Dr. Yes]

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

Thank you for submitting your research questionnaire to WPI. Your information will help us understand more about the prevalence and impacts of neuro-immune diseases.

In many cases the information you have provided will be enough for us to learn more and you will not be contacted for more information or blood samples. Some people may be selected for inclusion in future studies, and if you become one of those people, we will contact you for more information and possibly blood or similar samples. If you are not selected for future studies, please know the information you have submitted is helping us as a part of our research database.

Again, thank you for your willingness to help.

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.

 

[ahimsa]

Wow, two quick replies - thanks!

Thanks to both Donna (hi!) and Dr Yes for the very quick replies.

Dr. Yes, your hypothesis sounds about right to me. I think I signed up within a couple of days of when WPI first posted the questionnaire on their web site. It was earlier than Feb. but I don't remember when it was.