Ancient Retrovirus Study/Tufts University & U. Illinois-Chicago

[FernRhizome]

Hi Folks:
I am in a research study of Dr. Renee Taylor's (U.Chicago) and Brigette Huber's (Tufts). They are looking at ancient retroviruses being reactivated by the mononucleosis viruses EBV. They are looking at HERV K-18 genes. I don't fully understand the research but it sounds fascinating.

I am wondering who else is in this study? Is anyone else here on the phoenix site involved? Study patients are all over the U.S. and it is an ongoing study for two years with blood draws every six months. I even received a check for $50 for my first blood draw. The first income CFIDS has ever brought me! Our blood is starting to be worth something!

I am curious how this study which postulates that certain genes may cause EBV to reactivate an ancient retrovirus, might fit in to the XMRV research.

Cort: if you think this thread is better in the non-XMRV research topic area and think it needs moving please do so &/or let me know. I've added a link below which describes the study. Interstingly it is linking ancient retroviruses to both CFIDS and MS. Best wishes, FernRhizome

Link to description of the study which involves 128 patients around the U.S.:
http://www.redorbit.com/news/health..._chronic_fatigue_syndrome_multiple_sclerosis/

 

[Navid]

Hi Folks:
I am in a research study of Dr. Renee Taylor's (U.Chicago) and Brigette Huber's (Tufts). They are looking at ancient retroviruses being reactivated by the mononucleosis viruses EBV. They are looking at HERV K-18 genes. I don't fully understand the research but it sounds fascinating.

I am wondering who else is in this study? Is anyone else here on the phoenix site involved? Study patients are all over the U.S. and it is an ongoing study for two years with blood draws every six months. I even received a check for $50 for my first blood draw. The first income CFIDS has ever brought me! Are blood is starting to be worth something!

I am curious how this possible study which postulates that certain genes may cause EBV to reactivate an ancient retrovirus, might fit in to the XMRV research.

Cort: if you think this thread is better in the non-XMRV research topic area and think it needs moving please do so &/or let me know. Best wishes, Beth

does it matter where you live? how do you enroll.

thanks, lisag

 

[FernRhizome]

It doesn't matter where you live. A phlebotomist is sent directly to your house every six months, which amazed me! I live in a very rural part of New England. However the study was recruting participants about a year ago which is when I started the process of being considered for eligibility. It took them about a year to get up and running from the time they started recruiting. I am not sure how many folks around the U.S. are in the study. I'll e-mail them and ask them. Best wishes, FernRhiziome

 

[FernRhizome]

Hi Folks:
I just went back in to my first post in this thread and added the link that describes the ancient retroviral study at Chicago/Tufts. ~FernRhizome

 

[sarahg]

I am! They haven't taken any of my blood yet because one of my medical records requests got ignored by an old Dr's office and I have to resubmit the request, which they are currently mailing me the forms for. Fern, when I signed up for this, I too was in a VERY rural part of New England. Sadly no more, but they still want my blood. Which I am gladly awaiting being paid for. (but of course it will be more interesting to see what they find) I am hoping if this XMRV stuff keeps seeming like it is going to pan out that they will test for that too to see how it fits in.

ETA: maybe we should move this to active clinical studies so people will see it, what do you think?

 

[FernRhizome]

Sarahg:
Great to know another guinea pig in this particular study! Which NE state were you in? I asked them about XMRV and they said they are hoping to get funding so they can add XMRV testing into the regular study plan. But it sounded like red tape for funding was slowing that down. But it's a perfect study for XMRV since it's all over the map and over two years as well. I keep complete files at home on all my medical records so I never need to bother my drs. offices and can just send everything from home. I hope they get you onboard with the testing soon! Thanks so much for replying to the thread! ~FernRhizome

 

[hvs]

They are looking at ancient retroviruses being reactivated by the mononucleosis viruses EBV.

This is a fascinating possibility and would certainly jibe with the lab and clinical results that we see. (Remember, too, that most of us cannot get a reliable test for a chronic active infection of HHV-6 or HHV-7 from our GPs, and would never know it if we were infected.
I would think that they would want to look at the possibility of CMV, HHV-6, and HHV-7 doing the dirty work too, though.

 

[sarahg]

If I remember correctly, when I did the phone interview for the initial acceptance, they asked open-endedly about what viral reactivations I had, and that is what they wanted medical records on. I could be wrong but they made it sound like they were especially interested in people with both EBV and HHV-6 and the woman that did the interview was excited that I had Parvovirus-B19 reactivation. Well, not excited, but you know what I mean. So I think they are looking at all possible reactivation in their data...I don't know how that will be incorporated into the study though.

 

[Rrrr]

i am in the study, too. they took my blood and interviewed me 6 months ago and are doing again this coming week (every 6 months for 3 yrs, i think). i, too, asked if they will test our blood for xmrv, and they said they hope to, but if they do, they won't tell us the results til after the study (3+ yrs!).

i'm in MA.

rrrr

 

[FernRhizome]

Hi Rrrr! That means so far there are three of us in the study posting on this topic! Yeah!

Just e-mailed the study assistant and she wrote back to say there are 128 patients from around the U.S. in this study. I added that info to my original post. ~FernRhizome

 

[muffin]

FROM THE SAME HHV-6 SITE: STUDY ON THOSE WITH CONNECTIVE TISSUE DISORDERS AND HHV-6: I AND MY FAMILY MEMBERS HAVE A CONNECTIVE TISSUE DISORDER. MANY OF MY FRIENDS WITH FIRBO ALSO HAVE A CONNECTIVE TISSUE DISORDER. Also, those with POTS seem to have a higher precedence of a Connective Tissue Disorder, according to my internist. See also Dr. Peter Rowe (Johns Hopkins, re: POTS, Connective Tissue Disorders and Fibro,first noted in children)

Reactivation of HHV-6 Infection in Patients with Connective Tissue Diseases. Francesco Broccolo and colleagues found that HHV-6 viremia (but not HHV-7) occurred in a significantly higher percentage of patients with autoimmune connective tissue diseases (ACTD) compared to healthy controls (44.8% versus 2.6%) with the highest reactivation frequency (70%) observed in patients with scleroderma. The data suggest that either HHV-6 acts as a pathogenic factor that predisposes patients to ACTD development or ACTD predisposes patients to HHV-6 reactivation. See Abstract from the Journal of Clinical Virology.

 

[Rrrr]

and there is one other from our website/forum who is in the study, too. i won't share her online name as i have not asked her if i can. she lives just a few miles from me in MA.

rrrr

 

[Dr. Yes]

Hi Muffin :worried:,

That study ties in with the prevalence of folks with fibro having hypermobile joints.. Don't know if they've studied that in ME/CFS, but I have both ME/CFS and hypermobile joints (not fibro, to my knowledge) AND HHV6. And orthostatic intolerance (NMH, not POTS). There seems to be some correlation between types of dysautonomia and hypermobility, too. Weird.

FernRhizome - do you know if that study is still taking patients? Or where to ask?

 

[*GG*]

I am in NH and am also interested, I will subscribe to this thread. I think that makes about 70 now! Ouch. But FernRhizome please contact me with the info please. I have friended you.

Seems like you are into plants FernRhizome?

 

[FernRhizome]

Hi folks:
As far as I know the study is no longer taking patients, the enrollment process was about a year or more ago and it was sent out to a lot of the CFIDS websites and co-cure which is how I saw it and decided to apply. I have heard from one of the lead CFS researchers that the lead doctor on the study, Renee Taylor, at Chicago University does superb work and I know they are hoping to add XMRV to that study. So it certainly wouldn't hurt for those of you who are interested to contact her lab and ask if at any point the study will be expanded beyond the 128 current patients. If their XMRV funding comes through maybe they will expand things.

RRRR, I'd love to know the other New Englander in the study! It would be neat sometime if we could have a little New England study gathering!

Ggingues: I do like plants! I used to be a gardener (alas). And the thing is that in the winter a fern dyes down to nothing but it's rhizome but that's enough to keep it going throughout the winter, so I thought it was a good analogy for surviving CFIDS. ~FernRhizome

 

[sarahg]

Yeah I don't think they are still taking people. Is it odd that every single person who has responded on this site is/was living in New England when the study started? 2 from ME and 2 from MA is what I counted so far...My guess is because it's a reasonable driving distance from Tufts. FernRhizome, if you don't mind my asking where do you live in Maine, just the region if you're not comfortable giving out a town? I ask because if you're close to where I was I have some great Dr. and alternative practitioner reccomendations and I know how hard it is to find doctors there. The primary care Dr. I finally found there was probably the best doctor I have ever or will ever have in my life. Had to go through a couple awful Dr's to finally find her, though.

 

[FernRhizome]

I think the 128 folks in the study are scattered all over. The phlebotomist they send is from within the state, mine drove 2 hours within Maine to come to me. They are subcontracted. So I think it's just a funny coincidence that those of us so far on this thread are in New England.

Sarahg: would love to hear about your physician. I'll e-mail you privately. Thanks! ~FernRhizome

 

[SeaShel]

I'm in!

I've had 2 draws so far.

Shelley

 

[frenchtulip]

I'm in the study too.

I live in the Rocky Mountain region. I had my papers in a long time before they got around to me. They came in late November to take my first blood draw and then I did a phone interview. Although I don't fully understand all of the research, I think it will yield some good info. I really wanted to participate in this study and have my CFS used to help with an understanding of the illness. The $50 was a nice surprise. I think I will donate it to other CFS research since I wasn't expecting it.

 

[FernRhizome]

Cool! There are now five of us here in the Chicago/Tufts study and another person on the forum, too, that rrrr knows (unless it is SeaShel or frenchtulip?). ~FernRhizome