Nancy Klimas answers XMRV questions

Discussion in 'Fibromyalgia Main Forum' started by Spinetti, Oct 15, 2009.

  1. Spinetti

    Spinetti New Member

    In today's New York Times Consults column Dr. Nancy Klimas answers readers' questions about XMRV.

    http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/
  2. chrissy12

    chrissy12 New Member

    This is a wonderful interview. A couple areas I was really impressed with was when she said that the CDC stopped the research from going forward and that researchers were afraid they would lose their job, too, if they kept looking for answers. Again, they wanted it to be all about psych issues.

    Also, when she stated she spends 1/2 time with HIV patients and other with CFS. She would rather have HIV, they are stronger and have more life. (I put it in my own word).

    I thought the interview was excellent...

    Again, I think we need to e-mail and blog this story so the Times will continue writing them.
  3. spacee

    spacee Member

    I have lab work done in 1991 by Paul Cheney, MD showing that I am positive for a NOVEL CFIDS Retrovirus. I am now sure that it was the one Dr. Defreitas discovered. That year I was seen at the NIH in the Infectious Disease Dept, they had a copy of that labwork and they never said a word about it. They were so busy destroying Dr. D's reputation. I met with the evil Dr. Straus who asked me only psychological questions. And then said I did not have CFS.

    He is dead now. Brain cancer age 60, but not before they pinned a "Medal of Honor" on him.

    This is just bad.

    Spacee
  4. chrissy12

    chrissy12 New Member

    how hard all of this is for you. You were one the people actually diagnosed with the Retrovirus and then all this deception. It bothers me and I have only been sick for almost 4 years.

    Hang in there and let's pray for truth to come to the top.... I read all of the reports trying to debunk the research and it sickens me. I have to give it up and hope TRUTH prevails.

    Sorry to hear you have a real personal stake in all of this...
  5. AuntTammie

    AuntTammie New Member

    "But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

    I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it."
  6. victoria

    victoria New Member

    from what I'm hearing, you are probably right. But it will probably take a few more years to find that out unhappily...

    as I said in another post, my new motto is from Emily Dickinson (she was always so pithy for her times!):

    "I believe and disbelieve 100 times in an hour, which keeps believing nimble."

    all the best,
    Victoria

  7. spbm

    spbm New Member

    This is a really great interview. It would be hard to read this and not come away with an understanding of the gravity and severity of this illness.
  8. RunningAntelope

    RunningAntelope New Member

    QFE:

    "But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

    I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it."
  9. quanked

    quanked Member

    "the CDC stopped the research from going forward and that researchers were afraid they would lose their job, too, if they kept looking for answers." The part I think you are referring to from the article is where Justin Reily poses a question to Dr. Kilmas, which, in the end, she does not answer. See below--

    Was a C.F.S. Virus Discovered Years Ago?

    Q.Back in the early 1990s, Dr. Elaine DeFreitas at the Wistar Institute in Philadelphia discovered a novel human retrovirus (very closely related to HTLV 2, with Spuma-viruslike aspects) in C.F.I.D.S. patients. This was subsequently confirmed by two other prominent researchers (and a commercial laboratory).

    Dr. DeFreitas was almost done sequencing its genes and published a meticulous paper in a top journal. Then the Centers for Disease Control and Prevention and the National Institutes of Health intentionally destroyed her reputation because it did not mesh with their vigorous assertions that C.F.I.D.S. was psychoneurosis. No one else has followed this up for fear that their career might likewise be destroyed. This was all detailed in the amazing book “Osler’s Web.”

    Is this the same virus as the “novel” XMRV?

    Justin Reilly
  10. AuntTammie

    AuntTammie New Member

    you're rt - I saw that, too......but considering that the article did not include all the questions she was asked (I know this bc one question refers to another one that is not printed)...anyway, considering that she didn't include all them but did choose to include this one, and she did not dispute it either, says a lot......I think that she has to be very careful, based on how the CDC does set out to destroy those with whom they are in disagreement, and since she knows that, she did not directly answer the question, but still managed to let its accusation stand
  11. Svette_Palme

    Svette_Palme New Member

    There are at least two layers of deception going on here, probably more.

    The CDC destroying reputations is one; they do that to keep CFS/Fibro/CFIDS from being accepted as "anything but psychological".

    And then there is another group going after research dollars, which they get only when they can show that their work will result in an "allready approved pill" being prescribed.

    There are a lot of games afoot.

    But what Dr. Elaine says about 'HIV being no big deal' because of the wonderfull drugs [which came about only through billions of dollars of research money] is out of line... I know there have been improvements, but so far the HIV drugs end up killing the patients - and we will only know if the latest HIV drugs [combinations of them] do not cause seriously harm after patients have been taking them for 10 or 20 years... but these newest drugs have only been used for about 5 years.

    For sure, the HIV patients are happy to have anything that extends their lives - my nephew refused the drugs and became seriously ill, with neurological damage - would she really rather have HIV than CFS?? I wouldn't.

    Call me negative nellie, but I am not going to get my hopes up based on the retrovirus work of these researchers. We have had our hopes dashed too many times, don't fall for it until they have something concrete.

  12. AuntTammie

    AuntTammie New Member

    I can understand why some people might be upset with her comparison, and in general I do not like comparisons that seem to try to one-up others, but I think that in this case, such a statement could finally give people a better idea of how bad CFS is.

    I don't think that she is saying that HIV is no big deal, anyway - just that the treatments at this point are far better than those for CFS, and that as a result, the quality of life people have with HIV can be better than it is for many CFS patients.

    I also think that rather than implying that HIV is no big deal, she was actually making the opposite point - it IS a big deal and people understand that, so in comparing the two, she was trying to get people understand the magnitude of CFS as well

    plus, she is certainly in a position to be able to see the impact of the two, considering that she works solely with CFS and HIV patients

    and, though I do not have HIV , I honestly think that I would rather have it than CFS, too
  13. GoWest

    GoWest New Member

    Spacee, I realize this was back in 1991, but did Dr. Cheney attempt to treat you for this virus? Are you still a patient of Cheney? Have you been diagnosed with any other infections, and have you been treated for any infections?

    Thanks,
    Paula