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!
Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
Discuss the article on the Forums.

DeFreitas 1991 Retrovirus/CFS Study

Discussion in 'XMRV Research and Replication Studies' started by Aftermath, Oct 13, 2009.

  1. PoetInSF

    PoetInSF Senior Member

    Messages:
    167
    Likes:
    8
    SF
    I've heard somewhere that Jay Levy, one of the XMRV discoverers I believe, wasn't able to reproduce De Freitas' work either. Maybe he'll have something to say about it if what she claimed discovered was indeed XMRV.
     
  2. cfs since 1998

    cfs since 1998 *****

    Messages:
    577
    Likes:
    4
    The virus she isolated remained unidentified. It had one genetic sequence similar to HTLV-II but not others and she speculated that it was a different type of retrovirus altogether. She named it "CFIDS Associated retroVirus."
     
  3. winsomme

    winsomme

    Messages:
    14
    Likes:
    0
    Dr DeFreitas - CFS Radio Show

    Dr DeFreitas did an interview on the CFS Radio Show run by a Dr Mazlen in the NYC area back in the 90s i believe.

    You used to be able to get the transcripts for all the people interviewed on the show. Many are still available on various sites but I don't see the one with Dr DeFreitas. Dr Mazlen interviewed many of the names that we have seen associated with CFS over the years and the interviews were very interesting.

    I remember the interview with Dr DeFreitas quite well. She mentioned he studies looking for the HTLV-II virus and she also mentioned another scientist in her lab spotting something under the microscope in the CFS samples that seemed to be affecting the mitochondria of the infected cells.

    I am hoping that one of our resourceful posters here will be able to track down the transcript of that interview. I think we will find it very revealing.

    She also mentioned that she had been in a car accident and that was why she had to give up her lab....

    anybody else remember this radio show and the transcripts?
     
  4. Alice Band

    Alice Band PWME - ME by Ramsay

    Messages:
    175
    Likes:
    0
    UK
    The interview is still on the Netherlands ME-NET group

    (start of interview)

    Dr. Mazlen
    Our guest today is Elaine DeFreitas who is a pioneer of the virology
    area as well as a specialist in retroviruses, but more importantly Dr.
    Elaine DeFreitas, much to her credit was one of the first people to
    tackle Chronic Fatigue Syndrome as a serious disease and that's why
    I'm honored to have her as a guest today. She's spent a lot of her
    time and effort and also significant resources in terms of grant money
    and technicians looking into a viral etiology for Chronic Fatigue
    Syndrome and we owe her a debt of gratitude for that because she
    helped to give the disease creditability at a time when it was really
    lacking creditability. Now, without any further delay, I want to
    welcome to our show our eminent guest, the renowned virologist Elaine
    DeFreitas from Florida. Elaine welcome to our Chronic Fatigue Syndrome
    show.

    Dr. DeFreitas
    Thank you very much, Dr. Mazlen, it's a pleasure for me to be here.

    Dr. Mazlen
    I think since it's really basically your show today to talk about
    things, you might want to give us a little background because you got
    into studying the viral etiology or looking for a viral etiology for
    this disease very early. Maybe you want to just mention what led you
    into it or what prompted you to do that.

    (and from the end)

    Dr. DeFreitas
    Unfortunately, my laboratory won't be doing anymore work on this
    project and a cruel fate of my being in a motor vehicle accident and
    the resulting disability I have from that,

    I was unable to maintain my
    laboratory but I can tell you that other people, other very brave and
    hardworking people are still working on this problem and I really feel
    that in the next year there will be a number of very definitive
    studies coming out indicating not only what may cause this disease but
    an effective treatment for it as well and what I had mentioned before,
    a diagnostic test.

    And this, I think, once and for all, these
    findings, coming out of the number of excellent medical schools in the
    country, will put an end to the debate that involves whether this
    disease is merely another type of depression, which it is definitely
    different from and will show it to be an infectious disease and a
    disease which is treatable and I think the patients will be happy to
    hear that.


    https://listserv.surfnet.nl/scripts/WA.EXE?A2=ind9711b&L=me-net&D=1&O=D&P=1966

    Maybe you will have to join the group to read it all?
     
  5. anne_likes_red

    anne_likes_red Senior Member

    Messages:
    839
    Likes:
    260
    Retrovirus links were studied elsewhere too...

    I read this on the Associated New Zealand ME Society website recently.

    "ANZMES members will recall that Nancy Klimas visited New Zealand in 2006, during that time we visited Dr Mike Holmes who had worked at Otago University Micro Biology Department and had found retrovirus back in the early 1990s in the blood of those with ME/CFS, and had presented a paper on this in 1994 together with electron micrographs of the virus. Unfortunately due to ill health Dr Holmes was unable to publish all the research he completed. Another international specialist is now considering doing a review on this."

    Heather Wilson President ANZMES

    http://www.anzmes.org.nz/retrovirus_xmrv_and_mecfs.html

    I haven't located the specific 1994 paper mentioned above online. (Dr Holmes was published as MJ Holmes and Michael Holmes.)
     
  6. Alice Band

    Alice Band PWME - ME by Ramsay

    Messages:
    175
    Likes:
    0
    UK
    I don't have the paper but I remember the virus and Dr Holmes. By coincedence I did a search of all my old notes and emails and research saved.

    It was thought to be like a Visna virus at the time (sheep retrovirus member of the Lentivirus family?)

    If I find the paper I'll post more info here
     
  7. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    I was just standing off to the side and heard him say to someone else 'this is not Elaine DeFrietas virus'. For what its worth! Time will tell all. Wish I knew how she turned out in the end - she sure went through a rough, rough time.
     
  8. anne

    anne Guest

    Maybe he meant it in a "Not your mother's jeans?" kind of way?

    No?

    Okay.
     
  9. Michelle

    Michelle Decennial ME/CFS patient

    Messages:
    104
    Likes:
    10
    Portland, OR
    Both DeFritas and Mike Holmes were marginalized by disability? Wow we've had the worst luck with this disease. Nice to see it starting to finally change. Hope it changes a bit for Drs. DeFritas and Holmes too.
     
  10. condra

    condra

    Messages:
    41
    Likes:
    0
    Fascinating thread.

    Has anyone been able to get in contact with Elaine DeFreitas since XMRV-gate?
     
  11. Mark

    Mark Acting CEO

    Messages:
    4,532
    Likes:
    2,016
    Sofa, UK
    There is no evidence that... (redux)

    Just a rather amusing and fairly sophisticated version of "There is no evidence..." that tickled me...

    Cold_taste described this as weird; I'd add 'sophisticated' to that description.

    Not a "new and spreading disease" - TRUE. Just a "spreading" disease.
    Not "on the verge of an epidemic" - TRUE. In the middle of one.

    Isn't language wonderful? It is so useful for communication...
     
  12. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Right on Mark! Well said.
     
  13. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    This is what I came across after XMRV was announced on 10/8:

    http://www.ncbi.nlm.nih.gov//pubmed/7595205

    Were they right?

    O_O

    And, does anybody remember this that Cold Taste of Tears posted further up this thread and I had expanded on before, albeit not very readable? This article is all about the Retrovirus CAV that Defreitas found: http://www.ncf-net.org/forum/revelations.html

    These quotes should be easier to read:

    Sure sounds a lot like retrovirus XMRV to me. They were also considering a lentivirus here Alice, but they weren't sure. Their tools for finding viruses and retroviruses are much more refined now but other researchers around this same time thought it might be a lentivirus too. They weren't sure, but had it pegged as several possibilities back then.

    XMRV infects both T and B Cells.

    What a shame that was never created.

    I'm not sure why Mr. Whittemore said XMRV is not CAV. I want proof! If they're not the same then we may have more than one infectious retrovirus in us.

    Is this important to find out?
     
  14. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    No, you're not the only one.

    Am I misremembering or wasn't it all covered in Osler's Web?

    DeFreitas Disease.
     
  15. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    I really like the sound of Defreitas Disease. Yes, this was all covered in Osler's Web.

    Look what I just found that correlates with the first link I gave in the post above:
    http://cmbi.bjmu.edu.cn/news/0310/106.htm

    Looks like retroviruses are often used in gene therapy which Jenbooks pointed out earlier. It also looks like the scientists believed they wouldn't cause humans diseases when used in this way. Looks like they were wrong.
     
  16. RE: The missing scientist Elaine De Freitas.

    Ok run this by me again

    Scenario: You're disabled from a car accident, bed ridden say... and you found something amazing that no one else would listen to you about. You know what you found, the CDC won't listen. You even published it, it's ignored. You're a scientist - this is your life's work to further the cause of the human race and alliviate suffering/disease.

    And you just give it all up as you can't walk? Never thought of putting all in a brown envelope and giving it to a friend to 'keep' - even if you were paralysed and had to talk with a speech computer? (People can take degrees being this disabled). To my knowledge she isn't paralysed. Even if she was, if she can blink - she can give commands to questions.

    Nothing is ever as it appears, especially if you accidently infect the worlds population with a DNA mouse virus. (Not that anything like that would ever happen) - whilst at the same time simutaneously these same infected people are being told they have somatization/hysteria that is effectively treated with altering the way you think, keeping an 'activity diary' and positive thinking! LOL

    Or maybe not LOL for the people dead, dying, and whose lives have been utterly destroyed.

    Yea, I think I'll just 'retire' and forget I found an unexplained retrovirus in people accused of being mentally ill - who have no signs of mental illness.

    GREAT IDEA ELAINE!!!!!!!!!!!!!!!!!!!!!

    Except I imagine she had no say in the matter.
    Shades of Dr David Kelly Perhaps?
    http://www.dailymail.co.uk/news/art...rdered-MP-spent-year-investigating-death.html

    We haven't heard one peep out of her.
    Isn't that extremely strange?
    Think about it....the potential pioneer of discovering the next AIDS is too sick to comment, as is her family, as are her old co-workers.
    As are the people who published the research, as is the CDC.

    Are they all suddenly elective mutes?
    Think about it....
     
  17. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Cold- Good points about DeFreitas.


    And that is an interesting article about the Kelly Affair. Here are some highlights:

    "When everyone is out to get you, paranoia is just good thinking."

    "We have ways of keeping you quiet."
     
  18. annunziata

    annunziata Senior Member

    Messages:
    111
    Likes:
    2
    Hudson Valley
    Dr. de Freitas' silence

    Cold Taste of Tears,

    I met Dr. de Freitas and I can tell you she was one feisty woman. I don't know why there has been no comment from her. I've wondered if Hillary Johnson has spoken to her. I would really like to hear what she has to say about XMRV. I hope she feels some measure of vindication, at least.

    Amy
     
  19. jenbooks

    jenbooks Guest

    Messages:
    1,220
    Likes:
    114
    Gene. Therapy

    I'm on iPhone so will be brief. MLV caused leukemia because they didn't remove promoter sequences from the virus. They removed other potentially harmful parts. These promoter sequences can switch on our own oncogenes (we were born with) and lead to malignancy. It's a little more complex than that but that is the basic idea.

    Similarly however XMRV may switch on oncogenes or upregulate replication of other viruses.


     
  20. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Thanks Jen,

    Does that mean they can now safely use MLV in gene therapy?
     

See more popular forum discussions.

Share This Page