1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

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

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

  1. SeaShel

    SeaShel Senior Member

    Messages:
    111
    Likes:
    0
    AZ
    Hi Fern - I'm not rrrr's study person, and guessing frenchtulip isn't also since rrrr mentioned the participant was on her side of the country. So maybe it is at least 6.

    I was very interested to be in this study because of the genetic predisposition aspect, since some of my cousins have varying autoimmune problems and one has a dx of "chronic epstein barr".

    I received my second check just before the XMRV news broke, and was never so happy to part with money in my life as I was to send it to the WPI. Talk about stretching a research dollar - receive from one study to pass it on to the next! :)

    Shelley
     
  2. frenchtulip

    frenchtulip Senior Member

    Messages:
    552
    Likes:
    341
    I'm not rrr's person.

    SeaShel, donating to the WPI is a great idea! I'm looking at a different nonprofit, OFFER UTAH, which is proposing XMRV research. I received a letter from them about the research:

    "OFFER applauds this breaking [XMRV] research but recognizes the imperative for more answers. OFFER would like your help in moving this science forward quickly. A leading XMRV scientist, Dr. Ila Singh, is here on the faculty of the University of Utah. Our own Dr. Lucinda Bateman, an experienced clinician and recognized expert on CFS, would like to harness the scientific genius of Drs. Alan and Kathy Light, recruit the local CFS patient population as volunteers and combine resources with Dr. Singh to study XMRV in CFS right now!"

    This work will involve some real heavy-weights and sounds very exciting. I will also volunteer as a subject in the study if I meet the criteria they need.
     
  3. SeaShel

    SeaShel Senior Member

    Messages:
    111
    Likes:
    0
    AZ
    Thanks for the info on OFFER UTAH. I will check them out, and watch for opportunities to be a study participant.

    It's ironic (or maybe synchronisitic?) that I used to joke that I originally got sick from a trip to SLC as a teen. I spent many summers in Utah as a kid, a lot of time in the mountains, and have wondered on and off over the years about the possibility of Lyme on top of everything else.

    Nice to "know" fellow HERV K18 participants - thanks for starting this thread Fern (you pooter, you).

    Shelley
     
  4. FernRhizome

    FernRhizome Senior Member

    Messages:
    412
    Likes:
    0
    Okay so here's those of us in the study so far: SeaShel, frenchtulip, Rrrr, Sarahg, and myself, FernRhizome. So that's five of us? Am I missing anyone? ~FernRhizome

    PS: frenchtulip: can you explain how a tulip from France is different than one from anywhere else? As a FernRhizome I am curious? ~b
     
  5. frenchtulip

    frenchtulip Senior Member

    Messages:
    552
    Likes:
    341
    FernRhizome

    Good question. It is my impression that French tulips generally are the long-stemmed type. I am a huge tulip lover, and the long-stemmed ones are my favorite.
     
  6. FernRhizome

    FernRhizome Senior Member

    Messages:
    412
    Likes:
    0
    Oh, that's interesting. I love tulips, the colors are so bold......good name to use. ~FernRhizome
     
  7. Stevew

    Stevew

    Messages:
    10
    Likes:
    0
    Florida
    New member / HERV-K18 specifics

    You can add me to the list. I am in Florida. It has been over a year since I was first contacted. My first blood draw will be in a couple of weeks.

    Does anyone know anything about HERV-K18? I understand there are 3 variants and one is more likely to cause CFS. It is supposedly an ancient retrovirus but there are only 3 variants. Without any selection pressure DNA will collect mutations but this only has mutated twice (to get 3 variants). Are all of the genes associated with the retrovirus being activated? i.e. are we making an entire functional virus? Or maybe just one or some of the genes are being activated and the gene products (proteins) are causing a bad immune response. Does anyone know?
     
  8. SeaShel

    SeaShel Senior Member

    Messages:
    111
    Likes:
    0
    AZ
    Oh my gosh Steve, I had no idea about all that.

    Not enought brain power to add anything of substance, so for now - thanks for that info.

    Shelley
     
  9. JustJack

    JustJack put on yer dancin' shoes

    Messages:
    53
    Likes:
    2
    Sacramento CA
    Hi guys,

    I am in CA and am in the study for 1 year now. I have had two blood draws so far and interviews. I like the interviews and the questions, they are very thorough.
    XO
    JJ in Sacramento
     
  10. determined

    determined Senior Member

    Messages:
    296
    Likes:
    62
    USA: Deep South
    Hi Steve

    Hi Steve...welcome to the forum. I'm not a member of this study but I am definitely interested. You are asking some good questions. I have already put this topic into a pubmed search; I feel like it's a very important area that we should all be thinking about.
     
  11. SeaShel

    SeaShel Senior Member

    Messages:
    111
    Likes:
    0
    AZ
    Sarah, I sent my own records.

    Not positive, but I think the main thing they are looking for is the "official" cfids diagnosis.

    Shelley
     
  12. FernRhizome

    FernRhizome Senior Member

    Messages:
    412
    Likes:
    0
    Okay so here's those of us in the study so far: SeaShel, frenchtulip, Rrrr, Sarahg, SteveW and Justjack and myself, FernRhizome. So that's up to seven of us?

    Sarahg: I posted this thread initially under XMRV because 1) the researchers are trying to get funding to add XMRV to this study. 2) Also because it's an ancient retrovirus and as a retrovirus I thought it might be a closer match to XMRV then to other research.

    But what does everyone else think about thread location? I can't help but think there may be a connection....such as folks with the ancient retrovirus might be more genetically predisposed for XMRV. Who knows? ~FernRhizome
     
  13. SeaShel

    SeaShel Senior Member

    Messages:
    111
    Likes:
    0
    AZ
    I would like to see it moved, for the reasons Sarah mentioned.

    I agree with your reasoning for where you posted it originally Fern, but know I'll find it easier in the less travelled Clinical Studies area. (I believe to the core of my being that we, or a subset of "we", have a genetic predisposition and hope that Dr Huber gets to the bottom of it - I think it may eventually explain a lot).

    My .02

    Shelley
     
  14. Stevew

    Stevew

    Messages:
    10
    Likes:
    0
    Florida
    Herv-k18

    Previously I asked if all of the HERV-K18 proteins are being made (in CFS patients) and if the (HERV-K18) virus is being assembled. I found the answer in this 2004 article:
    http://jvi.asm.org/cgi/content/full/78/14/7852
    Only one protein is being made. It is the env gene - one of the HERV-K18 genes. The env gene is activated by Epstein Barr Virus (EBV) and possibly XMRV too.

    Here is what I see happening, according to the article. The EBV infects a cell. EBV is a DNA virus so it is DNA that the virus injects into the host cell. The host cell makes the proteins encoded by the EB virus DNA. These proteins join together to make a new EB virus. Before joining to make a new EB virus one of the proteins, EBNA-2, will turn on genes belonging to the host cell, in particular the env gene from the HERV-K18 which is normally turned off.

    Another question I had that the article answers is how ancient is HERV-K18? This ERV is found in Old World primates but not in New World primates. I am guessing this means it (HERV-K18) is about 6 million years old. I had previously read that there are 3 versions of HERV-K18 and that one of the 3 version was more likely to be found in CFS patients. Perhaps they mean 3 versions of just the env gene and maybe that gene is not very large. This could account for there being only 2 mutations in 6 million years.

    With the env gene turned on the protein encoded by the env gene gets made. That protein is a superantigen which means our immune system has to go to work to fight it. Is this the root cause of CFS?
     
  15. FernRhizome

    FernRhizome Senior Member

    Messages:
    412
    Likes:
    0
    Stevew this is fascinating!!!! Thanks so much for posting! Wish I could totally understand all of it...maybe if I reread it several times....it's fun to know how old the retrovirus is....if it weren't for retroviruses we would not be human as they are what cause speciation!

    In fact humans would still lay eggs if it weren't for a retrovirus that caused the evolution of the placenta! ~FernRhizome
     
  16. Stevew

    Stevew

    Messages:
    10
    Likes:
    0
    Florida
    Retrovirus 101

    DNA is the double helix with the C, G, T and As. Each chromosome contains a long strand of DNA. There are 46 chromosomes, 23 from Mom and 23 from Dad. A segment of DNA that codes for a protein is called a gene. Each chromosome's long strand of DNA has many coding regions (genes). For a cell to make a protein it temporarily breaks open the double helix and copies the data in one gene onto RNA. RNA is very similar to DNA. One major difference is that it is only one strand where DNA has two strands making a double helix. The RNA that contains the information for a gene/protein is called messenger RNA, or mRNA. The mRNA is sent to the protein making factory. Don't worry right now how that works. The main point is that DNA is copied to RNA and the RNA is sent off to make proteins.

    A virus is a tiny ball. The ball is made out of protein and inside the ball is either DNA or RNA. The ball attaches to a cell and injects the DNA or RNA into the cell. A DNA virus injects DNA and the host cell starts making copies (DNA to RNA). The RNA is sent to the protein making factory. The proteins assemble into a new virus which goes out to infect other cells.

    An RNA virus injects RNA into the cell. A retrovirus is an RNA virus that also injects enzymes with the RNA. The enzymes copy the RNA into DNA and insert the DNA into a nearby chromosome (belonging to the host, you and me). So now our chromosome has a new set of genes that code for proteins that make a virus, wonderful. When you get infected this way it is called an exogenous retro virus.

    Normally you won't pass on exogenous retro viruses to your offspring. It would have to infect a gamete (egg or sperm) that would later become offspring that would survive with the virus. Occasionally though a virus does infect a gamete and gets turned off and then gets sent to offspring. So your baby would be born with the virus already in his/her genome but hopefully the genes would be turned off. When you get the virus in this manner it is called an endogenous retro virus (ERV).

    Each retrovirus may only have 10 to 20 genes. It appears that an ancestor about 6 million years ago passed on the HERV-K18 virus to us all, so we are all born with these genes but they are turned off. Turned off means that no proteins are being built from the information in these genes. One of the HERV-K18 genes, named env, gets turned on by some other infection. We start making the env proteins and these proteins are superantigens, which means our immune system works hard to get rid of all of them.

    Two candidates for turning on the env gene are EBV and XMRV. There are possibly many ways for the gene to get turned on.

    I am not a microbiologist. I learned this stuff by watching courses from The Teaching Company. One course in particular helped me with this. It is called Biology: The Science of Life.
    http://www.teach12.com/ttcx/CourseDescLong2.aspx?cid=1500
    They have 70% off sales all the time so don't pay $700 for this course. Ask them when it will be on sale.
    If I have made any mistakes then hopefully someone will correct me. I like knowing what is going on inside of me.
     
  17. determined

    determined Senior Member

    Messages:
    296
    Likes:
    62
    USA: Deep South
    article

    Thanks for the article, Steve. I printed it out and hope to read it soon. It sounds like you found a good resource for learning. In addition to that source, both Berkeley and MIT have what they call "open courseware." Both universities offer, for free, access to whole courses on biology and other subjects. It helps when the individual lectures are labeled - sometimes they are, sometimes not. If you google open courseware MIT or Berkeley you should find them. Thanks again!
     
  18. FernRhizome

    FernRhizome Senior Member

    Messages:
    412
    Likes:
    0
    SteveW:
    Thanks! That's a hoot you learned this form The Teaching Company. One of my bedridden years I was given their video course on anatomy and watched the whole 12 video series lying in bed.....! Your explanation is really helpful and I will print it out and add it to my folder on the ancient retrovirus study I am in and it's great to have it up here for all of us in the study! Thanks again. ~FernRhizome
     
  19. Stevew

    Stevew

    Messages:
    10
    Likes:
    0
    Florida
    Good call. I have watched some of the Berkeley courses titled "Physics for future presidents." This is a great course for most people because they don't make you do much (any?) math and you still get to be smart.
     
  20. determined

    determined Senior Member

    Messages:
    296
    Likes:
    62
    USA: Deep South
    love being a student

    I love those biology courses!! Nerd alert! I've listened to several semesters of biology from both institutions. More schools are doing this...there are also a lot of public health programs online. I remember how isiolated I was in the early years of this illness, and how thrilled I was to find William Crook's book on the "yeast connection." We've come a long way, babies!
     

See more popular forum discussions.

Share This Page