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Article: An Altered Reality for ME/CFS: Dr. Mikovits Breaks the News on the Alter Pap

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 17, 2010.

  1. Cort

    Cort Phoenix Rising Founder

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    Have hope! Allow yourself to feel a little better. Honestly work on imaging yourself being well -actively do that and that will help carry to when the right treatments become available. I do that - its very relaxing :)
     
  2. Daffodil

    Daffodil Senior Member

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    XMRV has to be it. its too late for me to wait for another retrovirus to be found. i don't think they are going to be looking for another virus for a long time..they are very busy with just this one.
    -S
     
  3. CBS

    CBS Senior Member

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    PNAS has a liberal pre-print policy but their rules regarding discussions of accepted publications with reporters appear to be a bit more restrictive:

     
  4. cruzgirl

    cruzgirl

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    Daffodil: I don't know if that is true that they are not looking for more viruses. While watching Mrs Whitmore on the piece by her and her daughter today she spoke about a way the blood services may test things so that all diseases would be excluded. So it must be a very interesting test they have to do this.

    I think that medicine is at a cusp right now and will find many diseases are from viruses. I put an article in the forums here about Crohns disease and how they feel they may have a virus in the gut that is causing it. I am interested in this as many family members have Crohns disease. The other reason I put the article in was more to give hope, as I am sure more disease have developed because of viruses.
     
  5. CBS

    CBS Senior Member

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    I'm not sure that this is the case. During her interview on Virology Blog, Dr. Singh clearly implied that this could very well be the beginning of new ways to look for previously undetectable pathogens. Who knew that PCR alone would be insufficient to detect a retrovirus? Who knew that retroviruses could exist in the blood at such low copy numbers? Very little effort has been spent on finding viral infection in fluids and tissue other than the blood. All "low hanging fruit." We may be watching the beginning of a paradigm shift. As Dr. Klimas stated in December (or January?), there are a lot of bored retrovirologists out there who got into the field because a 10-20 years ago HIV was still challenging and innovative. She expects that many will jump at the chance to research and treat a new disease. Ironic that the disease that so few wanted to study (even simply acknowledge as real) just might be the key to a new way of looking for or treating our most challenging diseases.
     
  6. Daffodil

    Daffodil Senior Member

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    thanks cruz. i just hope and pray i have XMRV. i agree that there will be viral causes found for so many diseases. just cannot wait anymore.

    perhaps i will get a VIP panel again and see if my NK functions have improved and if my RNase L has gone down further.

    i read about a guy on ampligen who's NK function and RNase L improved but he was still really sick. then i hear of others who responded in 2 weeks.

    if it's just a question of waiting i will do it...but not knowing is killing me!

    -S
     
  7. August59

    August59 Daughters High School Graduation

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    Could have been Planned!!

    PNAS might have allowed Dr. Mikovitz to announce the findings in exchange for publishing her findings to be annouced later in the year. PNAS might not be real happy with CDC anyway! Just a thought!
     
  8. Cort

    Cort Phoenix Rising Founder

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    This is inspiring stuff. I really wonder about hard to find viruses in the central nervous system . They could be very hard to find in the blood yet doing damage in the brain. It could be that central nervous system viruses will the be last one they figure out how to spot. This finding makes Dr. Singhs autopsy study all the more interesting. What will she find??? I hope CBS can sneak into her lab and look at some slides. :victory:
     
  9. Cort

    Cort Phoenix Rising Founder

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    I imagine that PNAS is VERY happy at these results. The DHHS actions indirectly suggested that they didn't have the best review policy. They are certainly amongst the winners here.
     
  10. mmorrison101

    mmorrison101

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    All I can say is, thank God for Annette Whittemore and the team she has put together. Maybe, maybe I will feel well again some day.
     
  11. Sasha

    Sasha Fine, thank you

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    I've kind of lost the plot now - have read so much about the PNAS release that it's all swirling about in my head - but is it the case that if the Alter paper is published in PNAS in this week's issue that it will go live on the website at 3pm today? I've become confused with all the talk of embargos & whatnot.

    Or did I see someone say a while back that being an important paper it wouldn't be expected to appear in their online edition at all, only in the print edition and without being announced in their early thingy? But would it get announced in a press release somewhere?

    If it's 3pm today, does anyone know what time that is in the UK? Totally lost all notion of how to work the time out now that we're in British Summer Time and not GMT (I think).

    :confused::ashamed::Retro redface: (that is meant to indicate puzzled stress with a hopeful ending!)

    Suspense... killing me...
     
  12. anciendaze

    anciendaze Senior Member

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    Yet more symptoms of ME/CFS.

    The Sun passes over the UK five hours ahead of the eastern US. Both have a Summer/Daylight-Saving time. (I'm still waiting to get all those saved hours back.)
     
  13. CBS

    CBS Senior Member

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    Never even crossed my mind (and how would you like to have done something like that and then be found out - can you say "witness protection program?" And if I were to recover my health enough to resume work - career suicide! :eek:. All that and Dr. Bateman is such a genuinely nice person. I'd be crushed by the look of disappointment on her face.
     
  14. Cort

    Cort Phoenix Rising Founder

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    I think we have the essential results now but the paper will be published in Sept. (Maybe they will speed it up now?)
     
  15. Sasha

    Sasha Fine, thank you

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    Thanks! My brain has left the building, basically.
     
  16. Sasha

    Sasha Fine, thank you

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    Aww... I thought we were still sort of hopeful for this week. I thought the September idea was only from that one interview with Dr Mikovitz in that local paper and that they might have got it wrong.:(:(:(
     
  17. Joanie

    Joanie

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    Hi Cort,

    I got the following reply from PNAS last week so hopefully soon............! :Retro smile:

    BW

    Joan


    ----- Original Message -----
    From: Salsbury, Daniel
    To: 'joan.crawford@virgin.net'
    Sent: Wednesday, August 11, 2010 10:10 PM
    Subject: FW: NIH/FDA paper on XMRV in CFS


    Thank you for contacting PNAS regarding this article. The article is currently in press and should appear online before the end of the month.



    Regards,

    Daniel





    Daniel Salsbury

    Managing Editor

    PNAS

    700 11th Street, NW

    Suite 450

    Washington, DC 20001

    ph 202.334.2682

    email dsalsbur@nas.edu

    From: Joan Crawford [mailto:joan.crawford@virgin.net]
    Sent: Wednesday, August 11, 2010 4:03 AM
    To: PNAS
    Cc: joan.crawford@virgin.net
    Subject: NIH/FDA paper on XMRV in CFS



    Dear Dr Schekman,



    I'm a researcher working, in the UK, with patients who have CFS. I understand that a paper by Atler et al (NIH/FDA researchers) regarding the prevalence of the retrovirus XMRV in patients with CFS has been accepted by the PNAS journal.



    I was wondering when this paper and abstract will appear on-line making the information available for press, medical professionals and patients?



    Warm regards

    Joan Crawford MSc CEng
     
  18. ixchelkali

    ixchelkali Senior Member

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    Well, what Dr. M said in the RGJ article was [bolding mine]
    If they can actually tell how it's doing the damage, that indicates that XMRV came first. Or if it turns out that treating XMRV restores the immune system, that will answer the question.


    Up until now, most of my hopes about XMRV have not really included the hope that I could recover. I have hoped that they're right about XMRV causing ME/CFS, so that there will be a diagnostic marker. I've hoped it would lead to respect and compassion for ME/CFS patients. I have hoped it would lead to treatment guidelines that recognize the immune system issues. I have hoped that it would lead to social support systems for patients. I have hoped I'll never have to hear that CFS is a "disease of unknown etiology" or any of the psychosocial gobbledygook that goes with that, again. I have hoped that with proven immune system damage, they would at least start testing for and treating the various opportunistic infections that we get. I've hoped it would finally lead to decent epidemiological studies.

    But I haven't let myself hope that treatments for XMRV would let me get my life back. I kinda figured that whatever damage XMRV does (assuming it turns out to be the cause), has already been done to me. I'm way past that 5-year mark. The most I've hoped for is that maybe antiretrovirals would keep me from getting worse, so that I wouldn't have to always fear ending up bed-bound and unable to care for myself.

    I'm almost afraid to hope for more. It's been so hard for me to achieve a level of acceptance, so painful to give up the dreams of what my life would be, so that I could stop grieving and say "Okay, this is my life, let me make the most of it. Let me enjoy what it is." I don't want to lose that. But I think I'm ready to entertain the possibility, the small hope, that I could be among those fortunate enough to recover.

    It's painful to think about the things I might do one day, because it's a reminder of how much I've lost and what I can't do today. I prefer not to dwell on that. But maybe I can risk the tears, to imagine that one day I might be able to walk in the woods again, to plant a garden, to feel that good tired that comes from working your muscles, to dance, to meet my grandson...

    It seems like such a small flicker of hope to hold up to such an immense desire.
     
  19. julius

    julius Watchoo lookin' at?

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    I didn't see anything about the paper. Could you give another link, or tell me how to locate it?
     
  20. Enid

    Enid Senior Member

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    Brilliant news Cort - thanks for posting.:Retro smile:
     

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