MONTOYA STUDY needs more participants

[Dreambirdie]

UPDATE on MONTOYA'S CFS PATHOGEN STUDY

I spoke with Jane Norrris this morning (6/1/12) to see what's up with the CFS pathogen study and when we would be getting our results. What she told me was that they are STILL in the process of testing the blood.

The testing is being done at Columbia University. There are approximately 450 samples being tested, half of which are controls. Three tests are being used to find the pathogens: masstag testing, greene chip testing, 454 sequencing (aka PCR).

And, she has NO IDEA when they will be done.

 

[SaraM]

Dreambirdie, thanks a lot for the update.

 

[mellster]

Thanks DB, she told me similar things via email but I didn't bother to posting it - apparently they are doing thorough 3 round testing and they were still at round one I think when I contacted her a month or two ago. My best guesstimate would be sometime towards the end of this year which is really a long time. Hopefully it will be worth the wait for some.

 

[August59]

I thought someone had stated the pathogen study was complete, so I obviously was mistaken. Could anyone briefly explain masstag testing process, as well the greene chip testing process. Is there anything special about the 454 test sequencing (PCR)? Thanks.

 

[charityfundraiser]

They just sent something in the mail to participants saying they had just finished recruiting 600 participants and will soon begin testing the blood. Yada yada explaining that medical studies take a long time, years, to complete. Well, fine, but then don't tell us at the beginning of the study that you'll send us results in 6 months! Gee, it's not the first time. One would think if they're always off by a magnitude of over 10 times, and been doing research for decades, they could recalibrate their original communications. From now on, I will substitute "years" for "months".

 

[mellster]

Yep - got the same letter - update your address with them if you have moved in the meantime and if you ever want to see some results

 

[Dreambirdie]

Yeah, me too. I got the letter, and it was NOT the same thing Jane told me on the phone--which was that 450 (not 600) samples had been collected.

It really does make me wonder how accurate the results are going to be, and if the ones I end up getting will REALLY be MY results. It's beginning to feel very messy.

 

[SaraM]

Any update on this study?

 

[Dreambirdie]

I wish, SarahM. Still no word about the results... 2 and 1/2 years and counting.

 

[MishMash]

I don't understand this.

Dr. Klimas is board-certified in "immunological testing". She has 20+ years in hunting for viruses in laboratory settings. She told me she does not trust labs in general, because the average lab will let the samples sit around for a long time. And the validity of the test results is perishable. Time does take its toll on blood samples. She actual visits where her lab work done, and inspects for exacting standards (at least when she used to be affiliated U of M).

If the goal is to test for pathogens, I don't understand why people are not going to Klimas' clinic to get this done. I think she would even prescribe Valcyte, if anybody wanted it. Is it the "study" aspect of Montoya's testing? Why has he shipped the samples off to Columbia University? Is being a good organizational manager also important in medical trials? And not just being a brilliant doctor at a renowned university in California. It is starting to appear that way.

 

[August59]

There should be some type of update on this study?

 

[knackers323]

?