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The Chronic Fatigue Initiative and Interview with Mady Hornig
In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, 'searcher' delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results ...
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Medical breakthrough puts Reno in spotlight

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by _Kim_, Nov 1, 2009.

  1. _Kim_

    _Kim_ Guest

  2. hvs

    hvs Senior Member

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    Nice catch, Kim. Fun to read.

    And I don't think we've heard this news in this detail before. Though we're right to gnash our teeth over some of the news out of the CFSAC meeting, this is gives hope to us and our families:

    The worlds largest pharmaceutical companies have been calling the institute asking if they can test their lines of a drug now used to treat patients with HIV, another retrovirus, to see if their anti-viral drugs can be adapted to treat Chronic Fatigue Syndrome patients.
    They want us to send them the (XMRV) retrovirus so they can screen huge libraries of compounds and see what they have that could work, Mikovits said. They already have drugs to treat HIV, so they could redesign a compound for the XMRV virus. Since they already have FDA approval, they could get something out to people fast.


    The new reality of the XAND era should be: get an XMRV test, get treated by an ID doc.
  3. Roy S

    Roy S former DC ME/CFS lobbyist

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    “We kept waiting for them to say something,” Mikovits said. “I was nauseous. Bob (Silverman) waited a long a time, and then he looked up and said, ‘Well, this is going to change their world.’”
    And it has.
  4. Wayne

    Wayne Senior Member

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    XMRV Eureka Moment

    Hi Kim,

    Thanks much for posting this.

    Wayne
    ........................................

    Judy Mikovits remembers that eureka moment when she realized that she and her team of researchers at the Whittemore-Peterson Institute in Reno had discovered a new retrovirus that could lead to a possible treatment, even a vaccine, to combat Chronic Fatigue Syndrome.

    It was January 22, and we were in a San Diego restaurant called the Yard House, said Mikovits, who had gone there with fellow scientist Vincent Lombardi to present the results of their research to Frank Ruscetti and Robert Silverman, two of the worlds leading virologists.

    We kept waiting for them to say something, Mikovits said. I was nauseous. Bob (Silverman) waited a long a time, and then he looked up and said, Well, this is going to change their world. And it has.
  5. Finch

    Finch Down With the Sickness

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    Whittemore Peterson Institute

    From the article:

    I don't think the above can be stated enough. The fact that a nonprofit institution is solving this is truly amazing. Kudos also to the University of Nevada Reno (UNR). I had not heard about their contributions.
  6. Jerry S

    Jerry S Senior Member

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    Hi Kim

    I just let the Washington Post know they've been scooped by the Reno Gazette-Journal.
  7. anne

    anne Guest

    Nice, Jerry!
  8. Wayne

    Wayne Senior Member

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    Washington Post Scooped

    Brilliant! :)
  9. Jerry S

    Jerry S Senior Member

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    Thanks, guys! I'm going to have to chill for a while. I'm getting overloaded.

    Carry on.
  10. annunziata

    annunziata Senior Member

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    LOVE IT. Their Woodward and Bernstein days have gotten lost in the mists of time.

    Amy
  11. Jimk

    Jimk

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    I hope you'll excuse the brief rant that this generated from me. Certainly there is a lot for us all to rant about in these new discoveries given the many years of neglect and active disdain from a number of medical disciplines.

    We are probably looking at a turf war among disciplines in medicine as to who has the "right" to treat CFS patients. Personally, given my experience with ID docs over the years, and the policies of the field in general towards long term infections, I hope it is not the ID docs that get this turf. They have constantly and consistently denied any kind of bacterial or viral involvement in CFS/FMS, denied the legitimacy of any long term infections such as borrelia and Chlamydia pneumoniae by evidence of high IgG in the absence of IgA, denied the reality of a medical cause to all this suffering. As a group they have, in my personal experience, been the most hidebound, the most constrained by their conventions and the most unwilling to use their expertise to think outside the box. Nothing of this new knowledge has come from them, but they may be raking in the bucks for diagnosis and treatment. It's galling.
  12. Advocate

    Advocate Senior Member

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    On the Reno newspaper website, I'm unable to get the main story, in the left-hand column. The right hand column (full of interesting stuff) appears correctly. Anyone else having this problem?
  13. anne

    anne Guest

    hvs is not going to argue with you there, Jimk, I promise you that.
  14. jewel

    jewel Senior Member

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    A few quick points. First, thanks so much for posting this wonderful in-depth coverage! The side stories really do add texture to the development of the institute and to Dr. Mikovits' motivation for working in this field. (Ironically, the reporter is a good friend and previous colleague of my spouse. They worked together for many years in Reno, until he moved to So.Cal in the mid 1980s, which is when we met... She doesn't know I have had FM (and CFS symptoms...) for all these many years... ) I had no problem getting onto the RGJ article clicking onto the hyperlink in the earlier post, or by going directly to the RGJ website... It is a well-done story. I new to these forums so I don't know how to do this, but could someone email the article to Advocate? It is 3 pages, so I hesitate to cut and paste to post here. Don't know if there are limits or the correct protocol...I hope that Advocate gets to read it, though... Re: ID docs, is that infectious disease doctors? I've never seen one, but a friend of mine with a documented IGg deficiency and a multitude of infections has not had great experience with the ones she has seen. But, isn't this Montoya's specialty? If the retrovirus pans out for at least a subset of patients as a cause, doctors will begin to take that seriously. At any rate, I think any type of biomarker or diagnostic test will be helpful in this field, whether it is XMRV or cytokine signatures (?) and/or some other easily accessible way of documenting that the patient has CFS or possibly related condition. Finally, the article clearly states that the WPI is a non-profit, which means donations would be tax-deductible; this makes me more inclined to put the word out to trusted family and friends, to request that they donate as well. (I am still "in the closet" with many (most) people I know as to my own health symptoms, dx, and concerns... ) Thanks, J.
  15. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Well

    Well, I would rather every specialty want me instead of no specialty want me, as it is now.

    And, I think we need to go according to where the main issue is. If it ends up being an infectious disease, then let's go there. True, they may be the worst at not seeing anything but what is shown on labs, but with XMRV, we will have the labs.

    What I can't understand is rheumatologists. I have never understood that. But a physician's referral line for UAB, a university medical center here in Birmingham, will refer you to a rheumatologist if you have CFS. I refuse to go. A GP makes more sense than that.

    My gyno referred me to a rheumatologist when he suspected I have CFS.

    I went to one rheumatologist while I was looking for one to treat me. Although frustrating to me after being referred to her and waiting three months to get in to see her, when I asked about CFS, she said, "Oh, I don't treat that." So I asked where I should go. She suggested a neurologist.

    Tina
  16. hvs

    hvs Senior Member

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    Ha, JimK. You have me smiling. You haven't by any chance, been to that big fancy clinic in your town and have them treat your case with anything but the utmost determination and interest, have you?? ;)

    I guess my prediction is that once those docs actually have a target to go after, it won't matter that they've up-until-now demonstrated all of the curiosity of snails.

    PMing you.
  17. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I

    I am so glad to see Peterson get the recognition and respect he deserves. It has been a long time coming. He obviously values the care of his patients above all those worldly things, but it's nice for him to get these things anyway.

    I am so touched by this story. This calls for another book. Someone needs to do just a biography on him. Make it a movie.

    Call Lifetime.

    Tina
  18. shrewsbury

    shrewsbury member

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    Brilliant Jerry!

    You accomplish more in a few short sentences and actions than I do in a few days activities!:D:D

    if:)
  19. Andrew

    Andrew Senior Member

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    Thanks, Kim. That page covers a lot of new ground.
  20. dannybex

    dannybex Senior Member

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    This is very interesting...

    "Whittemore-Goad said she was about 11 or 12 when she first began getting headaches and suffering from extreme fatigue that no amount of sleep could relieve.

    Id be in the classroom listening to the teacher, and Id have to put my head down on the desk and rest awhile, she said. I had flu-like symptoms, and my heart would race for no reason.

    After years of being treated for the symptoms, she began seeing a local homeopathic doctor, and by age 17, she started feeling well enough to enroll at the University of Nevada, Reno.

    But the university required she be current on her measles, mumps and rubella vaccinations.

    I got the vaccination, and I relapsed and never recovered. My gall bladder and appendix got infected, and they had to be removed. I also was having chronic pain.


    So...homeopathy...the dreaded "H" word on that 'other board', helped her recover enough to consider going back to school, but then vaccinations caused her to seriously relapse.

    Seems to me that there's more going on here than just XMRV...possibly many other factors involved, depending on one's history...

    ???

    d.

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