MONTOYA STUDY needs more participants

[Dreambirdie]

If you live in the Bay Area and want to be in the Montoya study, please contact Jane Norris at 650 723 8126. She is the study coordinator. They will be testing our blood for 40-50 different pathogens FOR FREE. These tests would normally cost thousands of dollars.

For more info, please read this link: http://thoughtsaboutme.wordpress.co...udy-with-dr-montoya-looking-for-participants/

 

[eric_s]

Will they also test for XMRV?

 

[Dreambirdie]

Will they also test for XMRV?

It's on their list.

 

[leela]

Hey--does anyone have a line on when the results might come through?
Have they started testing the samples yet?
I was wondering the other day if the blood is even still viable for some of the tests.
Wasn't there something about not freezing the blood when testing for XMRV (or did I remember that wrong)?

 

[eric_s]

In the Lo study they also tested old, frozen samples and found MLV-related sequences in there. So it's probably not any freezing that is a problem. But Judy Mikovits said many times that freezing can be a problem, i just don't know what she mentioned exactly.

 

[mellster]

No idea when results are due, but prob not before the end of the year (that's what I was told when I gave my samples). XMRV is on their list.

 

[Wally]

I gave my blood on May 16, 2011 and I was told that they only needed about 10 more patients to complete all the blood draws. We were told that testing was anticipated to be completed in about 6 months with the outside time frame being 8 months. Each patient who is part of the study will receive a copy of the results. If you want more details on the study, I am sure you could call Stanford's CFS Clinic and ask if they still anticipate completion of the study by the end of the year.

 

[searcher]

Jane told me a few weeks ago that they have all the blood samples and that testing should start soon. She didn't have an estimate on when the results would be back.
They are doing an additional research study evaluating EEGs on CFS patients and controls. It pays a small stipend and you can contact Jane if you are interested.

 

[Dreambirdie]

Jane told me a few weeks ago that they have all the blood samples and that testing should start soon. She didn't have an estimate on when the results would be back.
They are doing an additional research study evaluating EEGs on CFS patients and controls. It pays a small stipend and you can contact Jane if you are interested.

YAY! FINALLY! I had my blood drawn in June of 2010, and I have been waiting for over a year now.

Thanks for the info about the EEGs. I will check this out.

 

[mellster]

I was turned down on the EEG due to being on LDN but I am more interested in the blood results anyways. I am not sure whether soon even translates into this calendar year, I have heard the same from Jane but the assistant for the EEG study (Ian) told me it could be up to a year still - which I find hard to believe. Let's shoot for end of this year

 

[silicon]

I was also turned down for the EEG study because I told the interviewer that my thyroid is low and that I'm not taking any medication to "control" it. But anyway, I'm also far more interested in what's going on with my blood than with my (alleged) brainwaves...

 

[Mr. Cat]

I will take part in the EEG study next week. I am not on any meds, don't smoke, and don't have any comorbid neurological conditions, so I was accepted. It pays a stipend, but you don't get your individual results.

BTW, when I was talking to Jane, she asked me if I wanted to participate in a third Montoya study, to start in a few weeks, which will have something to do with XMRV. It consists of a blood draw plus an hour of questions. It pays a stipend, but you don't get to know your results. I did not get in because I work part time, and this study is for very sick folks who aren't able to work. If you are very sick and interested, give her a call.

 

[eric_s]

It's good to see there's so much going on at Stanford...

 

[Dreambirdie]

When I spoke to Jane on Friday, she said they (FINALLY!) had enough controls to begin the actual testing. So maybe we will have our results in a few months.

 

[mellster]

Thanks, DB, waiting eagerly..

 

[SaraM]

Any news about Stanford recruiting for their new study(blood test for Xmrv)?

 

[mellster]

Dreambirdie, any news from Jane? Maybe I will shoot her an email..

 

[Dreambirdie]

Hi Mellster,

I wrote Jane an email around x-mas. She said they had begun testing the blood, but wouldn't give me any time frame for when they would (finally) be done.

Science moves REALLY slowly.

 

[Wally]

As of last week, I was told that the Lipkin/Stanford study was finished collecting samples, but the research was still ongoing. No confirmation could be provided that the study was still on track to be finished early this year. (Note this is the study where participants will receive a copy of their tests results.

The second Lipkin/Stanford study is being run by the NIH. The NIH study involves 5 or 6 different locations and it involves 150 CFS patients and 150 controls. Participants will not receive their individual results for this study. A $150 stipend was given to participants in this study. The researchers at Stanford believed (as of the last week) that they will have collected all the blood/exams/questionnaires from their group of participants by Wed. Jan. 18th. I don't know how the collection is going at the other sites, but I was told that they believed this study was going to be on a fast track once all the locations had finished collecting their samples.

Stanford has another CFS research study that they are gearing up for involving how CFS patients cardiovascular system is working in comparison to healthy controls in the same age group.

It may just be hopeful thinking, but I do believe both of the studies that Stanford and Lipkin are involved in will be completed this year.

 

[SaraM]

Thanks Wally.