Discussion in 'Active Clinical Studies' started by FernRhizome, Jan 21, 2010.
Good move! I approve! Thanks, FernRhizome
This is exciting! Did all of you come down with EBV when you got CFS? I did but I'm not in this study.
The only virus I was tested for when I first got sick was EBV...I had no antibodies to it whatsoever so the idiot doctors I was going to settled on "well you have a virus, but we have no idea what it is" because all my bloodwork was indicative of fighting a viral infection. Maybe I could have pursued it more with them, but at that point I had been ill for over a month and was ready to move on to other doctors and get the heck away from them! So sadly, I will probably never know what that initial infection actually was. I would guess parvo or an enterovirus of some kind, but it's all speculation.
But within a year I was retested when I was diagnosed with CFS, and had (unbeknownst to me) caught it sometime in that year, presumably when about 3 of my friends came down with it about 4 or 5 months after I got really sick. But I was so sick already I never noticed it. Now my EBV tests transiently show active infection.
Interesting Sarah. It seems that many PWC initially test negative for EBV but then show it later. I wonder if we have a different strain or something?
Do you know if the study is still open, or do you have the link? I would love to have some free testing, I have plenty of blood to share with them!
The study at this point is underway and I think it is closed. But you could always contact Dr. Renee Taylor just in case they still need a few folks. I think there are 128 of us in the study from around the U.S. ~FernRhizome
PS I had a severe case of mono in college, but then bounced back and had a healthy life until about 12 years later when I contracted a viral syndrome which kept coming back each month and then five months later I contracted something else, some major major influenza thing and that was the end of life as I knew it and the years have rolled by, all 17 of them....my EBV is quite elevated.
The question I have about the ancient retrovirus study we are in is why they are collecting blood samples every six months. I would assume they are looking at genetics but it doesn't seem like our genetics would change every six months for two years? Does anyone have any thoughts on this? And for many of us far into our illness we no longer have such severe ups and downs we just live at whatever level we've finally grounded at......and have learned how to live within that envelope. So I've been a bit mystified as to what they'll find with the repeated testing??? ~FernRhiziome
I spoke with the grad assistant about this FernRhizome, but I need to really think about the conversation and try to remember what she said.
(governator voice) I'll be baack.
This is a great question, I can't believe it never occurred to me. Must be my $%@# CFS brain fog.
I don't know the answer but you asked for our thoughts so...
My first guess is that they want to see if there is a correlation between the expression of the HERV-K18 env gene and the EBV's EBNA-2 gene, or other infection source. They could possibly do this without looking at DNA. They could just look for the proteins.
Viruses go through cycles where they are sometime dormant. Maybe the want to see how many people test positive only half of the time.
Genes have a promoter region usually right next to the gene that determines whether the gene is turned on or not. A gene is usually turned on or off based on something attached at this point. I think methylation is one way to do this. Methylation is where a hydrogen atom is replace with a carbon atom that has 3 other hydrogen atoms attached to it. I suspect that this cannot be found when looking at DNA. I have heard that a gene can be turned on or off by a change to the DNA also. The gene that makes your eye color be brown is turned off in people with blue eyes. This is because the DNA of the promoter region is different in people with blue eyes. I doubt though that some infection is changing the DNA of the promoter region of the HERV-K18 env gene. Who knows?
I have my first blood draw this Tuesday and also a phone call where they ask me lots of questions. I will ask to see why they are taking our blood more than once.
Thanks Stevew! Good luck with the draw and questions. I think they are doing disability questions each time too, which suggests they are looking for a correlation. So there may be some folks in the study early in their illness/diagnose who may still get better and others of us who may nose dive for some reason. So it may be that that is why they want the "time" piece of four separate draws over two years. But it still seems funny to me if it's genetics....if viruses go through cycles and can become dormant than wouldn't we feel better when they were dormant? And that doesn't seem to happen? ~FernRhizome
After some thought, the best I recall the conversation was that they will be looking at the blood work and trying to determine if anything correlates to the answers to the questions.
In other words, if you are feeling better or worse on draw #2 than draw #1, can they see anything in the blood to account for that.
Obviously, this is a very simplified explanation, but it's pretty close to the way it was communicated. I couldn't get any info on the specifics of what was being looked at.
My fatigue level is not too terribly bad (compared to some of the others on this forum). When things are going well I can ride my bike for 15 minutes once or twice per week. If I overdo it I will "get the flu" and it will take two months to get back to "normal." During that time I will have a sore throat, cough a lot and be very weak and tired. I would be interested to see if they can notice any differences in my blood between the two situations.
I was supposed to have my blood drawn and phone interview today but because the blood draw was postponed the phone interview is also postponed. I was able to ask some questions though.
They are trying to correlate the answers to the questions with what they find in the blood. They are looking at the HERV-K18 env gene to see if it is activated, presumably by looking for env proteins. They are also looking to see the level of EBV and HHV-6 activity.
I was told I could request information about what they found in my blood when the study is over. This could be 3 years from now. She did not know exactly how detailed that report would be. She said there were 130 people in the study and they still need to get 30 (of the 130) started. This will by my first blood draw (2 days from now).
I was told they were trying to get additional funding to look for other potential culprits, possibly XMRV.
Stevew: thanks for the great update! I am still a bit mystified why it's a two year study (the third year I imagine is for paper writing)......~F
A two year study would be only 4 blood draws to look at and compare.
I'm starting to wonder if knowing something in 3 years isn't optimistic, since Steve is a year "behind" me. If there are still 30 people to get started, we could be waiting for awhile.
It's great they're trying to get more funding to look at other things, but for myself I know I won't be waiting that long for an answer to my XMRV status. I'll pay for it and they can have my results for free. ;-)
I would like to know what is going on inside me but I am in no hurry until there is something they can do about it. Is there any benefit in knowing if you have XMRV or not?
SeaShel: You are right! If they are that far behind in getting all the participants into the trial it will be 3 years before they even have final results to work with! ~Fern
Just got my call for draw #3 at the end of the month.
Since so much has happened since the last draw, I wanted to ask a lot of questions.
Missy, the grad assistant I had been working with, has moved on (she did let me know last time that there would be someone new).
Unfortunately, the new person is very hard to understand through the thick accent and can't even pronounce my name.
I might have to ask my question and then hand the phone to hubby to try and understand the answer. Sometimes mental effort exhausts me faster than the physical.
Fern and all, if there are any ??? you want me to ask, let me know. I will for sure be asking again about the study timeline.
Wow, I am still waiting for my 2nd draw. Thanks for posting Shelley. I think it's always worth asking each time if the XMRV funding has come through! My interviewer also had a very thick accent, and I was worried about getting through the questions but it went okay. She seems to know her stuff pretty well and askes for question numbers/letters to be sure, so I think you'll be fine. Good luck with it! Glad we've got this thread going! ~Fern
Just got off the phone with her, and did ask the XMRV funding question.
She said they were still waiting to hear from ???. It was a 3 letter acronym, and I thought I knew it but it has all ready flown right out of my brain. ack.
Thanks for the reassurance around getting through the questionnaire process!
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