Testimony of Jamie Deckoff-Jones MD To CFSAC

Discussion in 'Fibromyalgia Main Forum' started by mbofov, Sep 19, 2010.

  1. mbofov

    mbofov Active Member

    This is really well worth reading: (see http://treatingxmrv.blogspot.com/2010/09/my-written-testimony-to-cfsac.html)

    Written testimony of Jamie Deckoff-Jones MD to CFSAC
    September 17, 2010

    To whom it may concern:

    I am a 56 year old emergency physician. I have been diagnosed with CFS, chronic Lyme Disease and atypical MS. My 20 year old daughter has been diagnosed with CFS and chronic Lyme Disease. I have been ill for 16 years and disabled for 6. My daughter has been ill for 7 years and disabled for 4. In the last few years, I have almost died twice and my daughter has been hospitalized for cerebral vasculitis. My husband has been ill for 7 years and is functional. My 15 year old son is clinically healthy.

    In October of last year, I read the Mikovits paper in Science. It was immediately apparent to me that our illness was of retroviral origin. In February, my daughter and I tested positive for XMRV by culture. We were both almost housebound at that time. With the help of a compassionate family doctor and the guidance of an experienced AIDS doctor, we started the three antiretroviral drugs that tested in vitro against XMRV in the Singh study. Six months later, my daughter has started community college and I am planning a return to part-time practice. As always with clinical medicine, there are confounders, but I do not think it possible that we have not been helped by antiretroviral therapy.

    Because the patients have no help, I started a blog to share our experiences with treatment and my clinical ideas. The response has been enormous. My email is filled with stories of unbelievable pain, neglect and abuse. The wasted lives and wasted talent are a national disaster. Instead of contributing, a staggering number of people are unable or almost unable to care for themselves.

    Since CFS patients don’t die from their disease for a very long time, there is a tendency to feel that there is no hurry. Good science takes time after all. But it is a progressive disease. There are a staggering number of patients who are too sick to wait. They need compassionate care. They’ve been denied basic care, even common decency, for decades. It’s been a year since the association between XMRV and CFS was elucidated. Scientists say causation has not yet been demonstrated. I say it should be a clinical assumption at this point. As a physician, it’s obvious from the stories and family histories of the patients contacting me. Where have the epidemiologists been all this time? I am an emergency doctor and this is an emergency!

    To me, it’s a miracle that existing safe drugs may be effective. It is a travesty that clinical trials have not yet begun. It brings shame on the medical profession that doctors are unable to connect the dots. If there was a hurricane or an earthquake, everybody would be rushing to help. Even if all resources are immediately mobilized, many will be lost. The patients have very advanced disease. It is beyond a disaster.

    New babies are being born with it every day. Is it possible that AZT in pregnancy will prevent it, as it does HIV? Why is nobody trying to find out?

    The WPI has single-handedly made things happen for patients. Why are they not funded? They are a tiny non-profit. They have handed the world the answer on a silver platter. Is our government ever going to step up to the plate?

    Jamie Deckoff-Jones MD
    Santa Fe, NM
  2. quanked

    quanked Member

    This letter is right on target. There is too much discussion, too much debating, too much misinformation and too much caution going on with CFIDS and XMRV.

    For those who want to try, and for those who feel they must try, treatments like Jamie Deckoff-Jones then I believe they should be able to find medical providers to help them. Some of us are very cautious, some of us are just cautions and some of us are ready to take some risks to find our way back to a higher level of functioning.

    I am cautious by nature. But I have to tell you that the idea of be able to work, even part-time, is exciting and wonderful to me. I am not one that has to wait 10 years for studies that prove out the treatments but I am also not a great risk taker--I do calculated risk (or I use to) taking fairly well.

    This letter is the most uplifting news I have had in a long time. Thx again.
  3. spacee

    spacee Member

    Great post.

  4. gapsych

    gapsych New Member

    I am not comfortable with Dr. Jamie Deckoff-Jones giving a presentation. I know she is popular with some in the CFS community but she is not with all. But that is beside the point.

    Science has to be cautious. As someone said too much misinformation. We don't even know what the role, if any, XMRV or the pieces of RVs, have in CFS. There have been hopefuls in the past such as EBV, the Defritis RV, etc. and they never panned out.

    She is testifying before a committee made up of the very people who make decisions on funding. Researchers are saying that doing trials for treatment are just going to muddy the waters until we sort out what went on with all the studies as well as the definition of CFS.

    She is making leaps in logic about treatment that may or may not work and the treatment can do permanent damage to the body.

    In her letter, she says it was immediately apparent that XMRV is the cause of CFS but that is only one possibility and we really don't know that yet.

    I understand how desperately people want XMRV to pan out and hopefully it will. We also have to be realistic. I also understand that she has made a personal choice. But this is magical thinking and fitting the science into a preconceived bias.

    I think she will give the wrong message to the decision makers as she has gone against what is being recommended by most researchers and the medical community.

    Here is a description of what the committee does.

    Chronic Fatigue Syndrome Advisory Committee (CFSAC)
    The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include:

    factors affecting access and care for persons with CFS;

    the science and definition of CFS; and

    broader public health, clinical, research and educational issues related to CFS.

    Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women's Health, which is part of OASH.

    "Dr. Wanda K. Jones, Principal Deputy Assistant Secretary for Health in OASH, will continue in her role as the Designated Federal Officer for CFSAC."


    I am not being negative but realistic. There are others in the CFS community who agree with this view and we have to be careful about how we present ourselves to the very people who are going to fund the research.

    Her personal choice is her personal choice. To testify about this is going against the scientific thinking. I am not saying that she shouldn't do be getting this treatment. I just don't think she will make the best impression.

    How seriously will the committee take what she says? Will they see a desperate woman taking desperate measures or a risk taker? Do we want to take that chance.

    Do we need this kind of PR? I don't think so.


  5. mbofov

    mbofov Active Member

    Elaine DeFreitas' work on a retrovirus did not pan out because the CDC and everyone else failed to replicate her work, just as the CDC this year failed to replicate the WPI study. If left up to the CDC, there would be no research right now into XMRV. We are just extremely fortunate that the NIH finally picked up the ball.

    If you read Osler's Web, you will see where the CDC begged off flying from Atlanta to Philadelphia to duplicate DeFreitas' work due to lack of plane fare. For that, evidence of a retrovirus has languisehd for the last 18 years, quite probably resulting in the further contamination of our blood supply, not to mention the thousands of people languishing with CFS for the last few decades.

  6. gapsych

    gapsych New Member

    Yes her work was not replicated. Yes the CDC study was not replicated. This is how science sometimes works.

    I have read Osler's Web and frankly was not impressed at all. Too simplistic, leaps of logic and oh so filled with conspiracy theories when another perspective could explain what happened.

    What happened with the CDC as well as other agencies was a sign of the science at the time but in the end science will advance our cause. We just aren't there yet. :>)


    ETA I am not sure how this relates to Jamie Deckoff Jones?

    [This Message was Edited on 09/20/2010]
  7. mbofov

    mbofov Active Member

    You wrote: "There have been hopefuls in the past such as EBV, the Defritis RV, etc. and they never panned out." so I responded, explaining in part why DeFreitas' work on a retrovirus "never panned out" as you say. It didn't just happen not to pan out. The story is rather complicated, as you know, but a significant part was a claim by the CDC that they didn't have plane fare to go to her lab, so she could show them exactly what she was doing, at a time when they were misappropriating funds from CFS research.

    I would assume for science to work that studies should be replicated. You change things around and you're not doing the same study.

    Now why the CDC couldn't be bothered to do this, well, they never showed much interest at all in discovering any physiological basis for CFS, dismissing study after study.

    I completely disagree with you that Osler's Web was simplistic (it was anything but! -it was so dense and so full of verified footnoted information, it's hard to read).

    But anyways, no point in debating that.

    So now you know why I raised this issue.

    Also, just look at how AIDS got all its funding - its patients acted up. They were very vocal and demonstrative, and they got results. For the most part CFS patients are too weak to do much of anything and we don't have our families' support for the most part so we are in a very vulnerable position, which I think has led to the miserable neglect of this illness.

    So I see nothing wrong with speaking out. So what if we look desperate? We are desperate! Our lives have stopped, some of us for decades.

    The two reasons I have read why other current studies failed to find XMRV (including our illustrious CDC) were (a) either they used a differnet patient population or (b) used a different methodology, or a combination of both. When both these criteria were the same, voila! they get the same results. It's not rocket science (although it is science)

  8. gapsych

    gapsych New Member

    I have said how I feel and that's enough as far as I am concerned. I truely have compassion for Dr.Deckoff Jones and her family.

    I guess I am the "tough love" advocate but am an advocate nevertheless.

    Rest assured, I am not the enemy. :>)


    [This Message was Edited on 09/21/2010]
  9. mbofov

    mbofov Active Member

    You're right, we all do want the same thing - to get well! I can't even really imagine it, I've been sick for too long.

  10. hensue

    hensue New Member

    We are desperate and who cares how we come off. Seems nothing else helps.

    I am praying the doctor and her daughter continue to get better.

    When it comes to your child you will do anything to get them better and to have a life.

    What have we got to lose another 20 years suffering or longer???
  11. quanked

    quanked Member

    The activism that took place during the period when HIV/AIDS awareness developed was/is very instructive to any group of people seeking attention of the authorities/institutions/indviduals/the larger population/etc. regarding an illness that is not getting the support/funding/concern/etc. it needs and deserves.

    CFIDS/ME/FM creates a weak and vulnerable group indeed. I sometimes wonder how we can ever garner the support (be it emotional, financial, intellectual, etc) we need from the entities that can help change the way we are seen and treated given our exhaustion. Hell, many of us cannot even whip up the support of our family or friends.

    I can envision this--thousands of us on motorized beds and chairs (with large banners attached to our motorized resting units communicating to observers our most important issues) rolling toward the entrance of the cdc and other government entities that have consistently failed to do their job where we are concerned. For those of us who can we will be shouting slogans and demanding the recognition and support we need and deserve. We will have spokespersons speaking for us who have the energy and focus that we often do not possess. The news media will be recording our stand. I suppose this is more of a fantasy than anything but I find it to be a comforting fantasy right now.

    In grad school I learned that many of us believe that, historically, when populations become very unhappy with its government these people often revolt (I did, prior to this class). However the real truth is revolutions are, historically speaking, rare. Revolution comes only when groups of people have nothing left to lose. I think I am there--I do not have much to loose--my life, as it once was, is gone and has been for nearly 10 years.

    Some of us appear desperate some say? Well, duh! If we do not behave in some prescribed way we will loose credibility? Geeshhh! I would like to know what government entity on this planet sees these dd's as a credible physical diseases!

    I think the story about the cdc not traveling to the lab because they lacked plane fare says it all. What a lame, sorry and absolutely unbelievable excuse.

  12. u&iraok

    u&iraok New Member

    This doctor was desperate, saying she's almost died twice so I think that must have colored her coming to such a quick determination that it was immediately apparent this is of retroviral origin.

    I understand her desperately reaching out for something to help her and it's noble of her to be a guinea pig and I'm glad she's doing better but I think we need to watch this story closely especially in light of what kjm says about the dangers of the drugs used. It's too soon. A lot of people have taken things that have worked for a while. Let's see in a year how she's doing.

    [This Message was Edited on 09/23/2010]