Two HUGE stories - CFS, XMRV

Discussion in 'Fibromyalgia Main Forum' started by Elisa, Jun 9, 2010.

  1. Elisa

    Elisa Member

    Hi all,

    My news searches and feeds picked up these two recent pieces on CFS and XMRV...both are worth reading, they give the pulse of things out there.

    Here is the June 7, 2010 Chicago Tribune story with a pic of Dr Mikovits:

    http://www.chicagotribune.com/health/ct-met-chronic-fatigue--20100607,0,6405426,full.story

    Here is the June 9, 2010 blog response by Dr Jamie Deckoff-Jones - an XMRV postive doctor with an XMRV positive daughter...

    http://treatingxmrv.blogspot.com/2010/06/response-to-chicago-tribune-article-of.html

    God Bless,

    Elisabeth
    [This Message was Edited on 06/09/2010]
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    [This Message was Edited on 06/09/2010]
  2. Elisa

    Elisa Member

    Love to hear what all of you think on Dr. Decker Jones treatment choices...anti-retrovirals and it WORKING for her!
  3. spacee

    spacee Member

    this doc was so eloquent, yet simple it moved me to tears.

    Working for her and her daughter, right?

    Spacee
  4. Elisa

    Elisa Member

    Hi Spacee!

    I totally agree...AMAZING! A doctor taking a stand to help others with this illness. She's brave and couragous...it is so moving.

    She is bright too...I hope the WPI contacts her as a spokeperson too.

    Made me teary too - I wish each of us had a doctor that understood the devastation and that time is sooo important and we have lost so much...

    So great to hear from you Spacee - just makes me smile!!!!

    God Bless,

    Elisabeth
  5. Elisa

    Elisa Member

    Hi,

    Just a question - with this illness - as bad as it gets - is it abuse to take aways meds, like the antiretrovirals, if the child is improving?

    Which is abuse? Giving a retroviral or taking meds aways that are helping a child improve/recover?

    Elisabeth
  6. Elisa

    Elisa Member

    Hi,

    I support everyone's right to their own opinion.

    But keep in mind she is a Harvard educated physician and both she and her daughter have serious retroviral infections.

    I would hate to think that anyone would want a sick child to be separated from her Mother? That is not what anyone would want. Besides they would have to show harm and that is not what is happening. Actually, stopping/removing the meds now would give cause to child protective services a reason to remove the child...

    Anyway, its not my business what personal choices this family makes together in the privacy of their own home.

    I just wanted to share the article because it is a story of hope and of getting better - which we see so few examples of.

    Not interested in debating, just sharing with friends.

    God Bless,

    Elisabeth





  7. gapsych

    gapsych New Member


    I am not the only one in the CFS community who thinks like this. See the Phoenix Rising site on this very same subject.

    Is this story really restoring hope or is it delaying the letdown that may happen in the future? Is it realistic hope or is it hope out of blind faith?

    As a doctor this woman is unethical. As a mother, if her daughter is a minor, she is immoral. Personal opinion.

    Elisa said:
    "Anyway, its not my business what personal choices this family makes together in the privacy of their own home."

    For the most part I agree but it depends on the situation and I would not make a blanket statement. As someone who has worked with Child Protective Services, I would think this case would merit looking into. Believe me, they don't have the time to check on the little things. This one is a biggie if the child is a minor. If she is not a minor, then this does not apply.

    I am not debating this, just giving out information for a balanced view. I'm glad you posted this. It will be interesting to see what consequences both these articles will have in the future.

    gap


    [This Message was Edited on 06/09/2010]
  8. jdeckoffjones

    jdeckoffjones New Member

    My daughter is 20 and makes her own medical decisions. I am not prescribing for myself or my daughter. We have an excellent family practitioner caring for us.

    Best wishes,
    Jamie Deckoff-Jones MD
  9. simonedb

    simonedb Member

    great thread, thanks for highlighting the story.
    And thank you Dr Deckoff-Jones for the great commentary at the paper, this excerpt from your response captures one of major points:
    "In hindsight, it was obviously an infectious disease all along. It should have been apparent from the epidemiology. It will be a phenomenal teacher of the pathophysiology of human disease. It will illuminate genomics and evolutionary theory."

    I completely agree and its crazy but it took me like 17 years of this nonsense to realize it,
    institutionalized sexism and my own lack of med knowledge and my own insecurities and a spinal injury coinciding with it confused me but now I realize how insane this cfs/fms stuff is--sore throats, achy muscles etc wth sounds like fluish stuff to me, duh, how can all these rheumies keep a straight face when they see clients and prescribe anti-depressants.

    I am just livid about all of this as the pieces come together, some of the potentially best years of my life were colored in a harsher way than they needed to be because of this, I am going to do whatever I have to, to breathe down the neck of the institutions whose whose boot has been on my neck the last 20 years and help bust this baby wide open.
    [This Message was Edited on 07/19/2010]
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  10. gapsych

    gapsych New Member


    I would be very concerned about taking antivirals for XMRV without knowing just exactly what the role of XMRV has in CFS. At this point in time we really do not know if XMRV has anything to do with CFS other than possible association. It may be that the FDA/NIH study just found the same 2%-5%(?) percentage as the WPI in both populations. Hopefully, it won't be that and science will be able to eventually figure this out.

    I find it rather reckless that a doctor would actually go along with this.

    But you have to factor in personal choice. I understand how desperate people are but just do not get why people do this when you compare the risks with the benefits. But would be my choice.

    A brave person or someone with leaps of logic and the possibility of putting two people in danger? Realistic hope or blind faith? I guess it depends on your perspective.

    gap
    [This Message was Edited on 07/20/2010]
  11. spacee

    spacee Member

    Thank you Dr. Jamie for clarifying things from your perspective.

    I believe it was Mandy whose ID doc agreed to rx 30 days of an antiviral.

    Certainly more of this is happening than gets to the news.

    Just sign me up. There are degrees of this illness and some are willing
    to hang on but others feel life slipping away and need help ASAP.

    Kudos for sharing this Dr. Jamie.

    Spacee
  12. spacee

    spacee Member

    because I am tired of hearing it.The Ignore poster button has been pushed.

    Spacee
    [This Message was Edited on 07/20/2010]
  13. gapsych

    gapsych New Member


    I bet we agree more than we disagree on this topic.

    My concern is that people are taking speculation as truth.

    We don't know how XMRV and CFS are related. We have all these studies coming up with contridicting conclusions. All this needs to be sorted out.

    The Alter quote was by a journalist. Who knows how credible that is. We don't know what the FDA/NIH study is going to say. Did Alter mean that they found the 4-6 percent in both populations when he said the study had "confirmed WPIs findings" or was the study at WPI replicated? I know it is hard to accept but we don't know. Hopefully we will and soon.

    I find it worrisome when speculation is taken as the "truth". There is not anything wrong with speculating but when it is taken as truth then any other take is construed as meaning that person does not want XMRV found or are in on the conspiracy. It doesn't for me as I would love for XMRV to be found to be a cause of CFS/ME.

    Science is about exploring and looking at a topic in different ways. This is how progress is made.

    I am tired of all the conspiracy theories, and that anyone who dares to question the speculations are perceived as being negative. That's ridiculous.

    When we decide there is only one "truth", one way to look at things, that is when we split into "we" and "they" and that does not ultimately help the CFS/ME cause.

    So if other views bother you, then do hit the ignore poster button.

    But we can't fill in the gaps with information that may or may not be true and say this is indeed what is going on. Be honest. Call it speculation. Someday, hopefully, we will know the truth.

    I am just trying to be realistic.

    gap


    [This Message was Edited on 07/21/2010]