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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Ancient Retrovirus Study/Tufts University & U. Illinois-Chicago

Discussion in 'Active Clinical Studies' started by FernRhizome, Jan 21, 2010.

  1. Rrrr

    Rrrr Senior Member

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    hi fern: i had mono when i was 21, and i think it was 1983. me and 2 of my best friends/roommates all got mono at the same time. they got better in 1 month and i was bedridden for 1 yr (with what i now assume was cfs or lyme). then it suddenly lifted and left all on its own. then 7 yrs later i got pneumonia and that turned into cfs. and i've been sick ever since. 20 yrs total, if you count the 1 yr in 1983. -- warmly, rrrr
     
  2. Bellyhill

    Bellyhill Guest

    hi
    This is Gagan.

    I am from NJ i just an account on this forum
     
  3. LaurelB

    LaurelB Senior Member

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    I am in this study, too. I did the survey by snail mail as well, since I can't speak above a whisper. I've had my blood drawn at home 3x and (I think?) I have about 2 more draws to go...
     
  4. xrayspex

    xrayspex Senior Member

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    u.s.a.
    Hey Rrrr I had mono when I was 16 and then again at 18 and 20 and then fine until a surgery at 29 triggered whatever it is that continues "cfs", 21 years for me.

    but hey I came to this thread to find out the scoop herv k18, I don't get it, where it fits in with cfs and why i hadnt heard more about it and why huber acted rude at the invest in me conference. what I dont get is why herv-k18 is called a retrovirus when supposedly there are only 3 retrovirues, usually its hiv, xmrv and the htlvs I believe, anyway the info:

    HHV-6 and CIHHV-6 may cause AIDS and Chronic Fatigue Syndrome by activating HERV-K18 which acts as a superantigen capable of bring down the whole immune system.

    HHV-6A infection induces expression of HERV-K18-encoded superantigen
    "The human endogenous retrovirus K-18 (HERV-K18) encodes a superantigen that causes deregulation of the immune system. This provirus is transcriptionally silent, but can be induced by Epstein–Barr virus (EBV) infection and IFN-α treatmen" --Albert K. Taia, Janos Lukab, Dharam Ablashic, Brigitte T. Huber

    http://www.journalofclinicalvirology...194-2/abstract

    how is the study going?
     
  5. Stevew

    Stevew

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    Florida
    I made some posts a while back that may answer your questions. Check out #36 and #34 in this thread.
     
  6. Stevew

    Stevew

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    Funding for study has been reduced

    I just did my 3rd interview and there was no blood draw this time. I was told that their funding had been reduced. They plan on continuing the full amount of time but without any more blood draws. Is it just me or has anyone else had this happen to them? Maybe I don't have the version of the HERV-K18 env "gene" that they are interested in looking at.
     
  7. LaurelB

    LaurelB Senior Member

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    Steve, I just had my last "interview" (I'm too sick to speak so my interview is just me filling out the forms). They told me the same -- no blood draw this time because they have lost much of their funding. I'm not sure what the point of the interviews is without a blood draw, but this was to be my last one anyway.

    I know someone else in the study and they were told the same. So, it's not just you.

    Does anyone know who is funding this study?
     
  8. Seizethecarp

    Seizethecarp

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    Hi. I am also in the study and have had 3 draws. My 4th was supposed to be Nov 2010 and I was wondering what happened. Then last week I received in the mail a personal custom crafted birthday card from the interviewer in Chicago. I called her to ask why no draw last Nov. and she said there wouldn't be any more draws due to reduced funding but there would be additional questionnaires. But she also said that they were applying to have the study redesigned to so as to allow them to "complete" it with the draw data on hand. I think that means that instead of 4 or 5 draws, only 3 would be needed to complete the study. Just guessing.
     
  9. frenchtulip

    frenchtulip Senior Member

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    I, too, am in the study. When they didn't contact me in Nov. for my scheduled interview and blood draw, I contacted them and learned about the funding problem. I believe I was chosen late in the selection process. I have had two blood draws and maybe three interviews (the first time there was no blood draw as I recall). And they didn't do an interview in Nov. When I contacted them they said, they would be sending out an explanation, but I haven't received one yet. I know the study is sponsored by NIH. I don't remember whether the University of Illinois is also providing funding.

    Today I received a letter asking for my participation in a breast cancer study sponsored by NIH and our state university. I'll need to find out if there are restrictions on participating in two NIH studies at the same time.
     

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