First International XMRV conference

aruschima

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I agree , an outrage, but i heard on another board she will be speaking...... Kati, can you tell us what exactly Micovits said and what exactly she is upset about, in her own words, please ?!
With so little information it is not possible to judge the situation.
 

Kati

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Aruschima, this is a public forum that many many people can see, and I do not want to jeopardize dr Mikovits' integrity as a scientist.
 
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Hi aruschima - it sure is an outrage. Did you see Frickly's post?

I emailed Dr. Mikovits and asked if she would be speaking and she is "not invited". How can you have an International XMRV Workshop and not invite the person to speak that started this all. No one would be discussing XMRV if it were not for her. We have to make sure this committee knows that we noticed and it is not ok.
Could you please let that other board know that Dr Mikovits has not been invited to be one of the speakers so will NOT be speaking. They can confirm for themselves by checking the conference program of invited speakers http://www.virology-education.com/index.cfm/t/Program/vid/1FFCB7B8-FB88-C1D2-92C420E3BCEB0FB0

And if you passed along the request that anyone who thinks this is a bad thing to send an email to the organizers (addresss and a sample letter that can be used in full, part, for ideas or ignored can be found here http://apps.facebook.com/causes/posts/506487?m=3a6488f5 ), that would be terrific.

thanks

sb:)
 
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Kati

Does it look like they are trying to dismiss the link with XMRV, or marginalise Mikovits role in the research, or both. Want to get a better idea of what we are fighting for. Thanks.
 

jspotila

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Abstracts that researchers want to present at the meeting are due on July 30th, and the organizing committee (of which Dr. Mikovits is not a member) is responsible for reviewing the abstracts and selecting some for presentation at the meeting. Even though Dr. Mikovits is not an invited speaker, is she or anyone else on her team precluded from submitting abstracts? Presumably this would be another great opportunity to present data before it is published, as I believe Dr. Mikovits did in Europe earlier this year. Does anyone know if she's been told not to submit an abstract?
 
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Abstracts that researchers want to present at the meeting are due on July 30th, and the organizing committee (of which Dr. Mikovits is not a member) is responsible for reviewing the abstracts and selecting some for presentation at the meeting. Even though Dr. Mikovits is not an invited speaker, is she or anyone else on her team precluded from submitting abstracts? Presumably this would be another great opportunity to present data before it is published, as I believe Dr. Mikovits did in Europe earlier this year. Does anyone know if she's been told not to submit an abstract?
Jenny,

There are 9 invited guest speakers. Not inviting Dr Mikovits to be a guest speaker, if not THE keynote speaker is, as THomas Hennessy Jr on the fb page said:

Not including Judy Mikovits at a meeting discussing XMRV and the possible links to "chronic fatigue syndrome" <snip> is like not including Jonas Salk, when speaking of the Polio vaccine. It is like speaking of Apple computer and not mentioning Steve Jobs, or Microsoft and not mentioning Bill Gates, Jr., or like having an HIV conference in 1985 and not inviting Dr. Jay Levy and Dr. Luc Montagnier. Like having a "moonwalking" convention and not inviting Michael Jackson. Like having a seminar on Black American Presidents and not inviting, Barack Obama.

It seem the extremest of insults to not invite her to be one of the guest speakers and make her only avenue to participating being submitting an application. Like inviting 9 researchers to speak on polio at the 1st polio conference, including those who can't find it, and not asking Jonathon Salk.

Is the CAA doing anything to ensure that Dr Mikovits is one of the invited speakers?

Jenny - you said
Presumably this would be another great opportunity to present data before it is published, as I believe Dr. Mikovits did in Europe earlier this year.
Is this a snide comment? When I corresponded with the organizers of the Prague conference, they said that they would not be publishing abstracts, slides etc as the purpose of the conference was to encourage the sharing of new information, results, techniques etc, pre-publication so that it would be a cutting-edge environment (in my words - rather than last year's news).
 
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Jspotila

I know you are trying to say there are other ways for Mikovits to take part, but that is not the point. I'm sorry but Mikovits should not be sidelined, she discovered the damn link. This also does not make her a patient advocate, just as looking at prostate cancer did not make Klein a patient advocate. It makes her a damn good scientist. Doing this is the same as them trying to marginalise CFS patients, in fact this it what they are doing by not inviting her. It is a disgrace, and I am sure all patients will want Mikovits to be there right at the forefront of further research into XMRV and CFS. I will fight for that, as I am sure will most patients. We don't abandon someone who is trying to help us.

I will contact the CAA about this, because they too, I am sure, will not want the lead scientist on XMRV CFS to be pushed to one side. They need to speak out about this and get some heads rolling. What a disgrace.
 
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I will add, that if Mikovits is not speaking, then no one with a good understand of CFS is! Ruscetti is not a CFS specialist, he was also not the main author of the paper. People are clearly trying to push Mikovits out. Why? The research into XMRV needs Mikovits! This workshop should not continue with her.
 
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Here's a question for the organisers. When the NIH/FDA study is published, and all he'll breaks loose. How will you explain to the media that Mikovits is not invited to talk at the 1st XMRV conference. When she discovered the link. I will also tell them that the BBC will be well informed of this.
 

muffin

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Assay Development- Dr. William Switzer, CDC, Atlanta (THIS IS A SCAM CONFERENCE)

Hi aruschima - it sure is an outrage. Did you see Frickly's post?

Could you please let that other board know that Dr Mikovits has not been invited to be one of the speakers so will NOT be speaking. They can confirm for themselves by checking the conference program of invited speakers http://www.virology-education.com/index.cfm/t/Program/vid/1FFCB7B8-FB88-C1D2-92C420E3BCEB0FB0

And if you passed along the request that anyone who thinks this is a bad thing to send an email to the organizers (addresss and a sample letter that can be used in full, part, for ideas or ignored can be found here http://apps.facebook.com/causes/posts/506487?m=3a6488f5 ), that would be terrific.

thanks

sb:)
Program
Please note, taking into account Labor Day on September 6, the program of the 1st International Workshop on XMRV will start in the afternoon of September 7.
Invited Speakers
We proudly present the following list of confirmed speakers for the 1st International Workshop on XMRV:

Host Restriction Factors
Dr. Kate Bishop, NIMR, London, UK

Viral Integration
Dr. Sam Chow, UCLA, Los Angeles, USA

Basic Virology
Dr. John Coffin, Tufts University, Boston, USA

Prostate Cancer
(keynote lecture) Dr. Eric Klein, Cleveland Clinic, Cleveland, USA

Animal Models
Dr. Robert Silverman, Cleveland Clinic, Cleveland, USA

Pathogenesis
Dr. Ila Singh, University of Utah, Salt Lake City, USA

Assay Development
Dr. William Switzer, CDC, Atlanta, USA
ARE THEY KIDDING US WITH THIS ONE?????

Chronic Fatique Syndrome
Dr. Frank Ruscetti, National Cancer Institute, Frederick, USA

Vaccine Development
Dr. Ellen Sparger, University of California, Davis, USA
 

muffin

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Cdc - trying to kill xmrv research with switzer doing assay? Scam conference!

wilco.keulen@vironet.com, francis.collins@nih.gov, amy.marcus@wsj.com, Kathleen.Sebelius@hhs.gov,


I have sent Amy Marcus at the Wall Street Journal an email on this scam conference. I have also sent emails to the above - others might do as well. Let us not overwhelm amy Marcus at WSJ though. Might let her know that the CFIDS community is in an uproar since this is yet another way to damage XMRV research, but we can't over do it with her.
 

Kati

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With the best of my knowledge, V99m both. This is the fight of our lives.

Remember that if they dismiss the link between CFS and XMRV, it is easier to see PWC as hysterical, psychiatric, malingerers. These are people with an agenda and with interest into dismissing WPI and Judy and the link between XMRV and CFS.


Kati

Does it look like they are trying to dismiss the link with XMRV, or marginalise Mikovits role in the research, or both. Want to get a better idea of what we are fighting for. Thanks.
 

Kati

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Thank you so much Muffin. Now we are waiting for answers. Not the fake kind.


wilco.keulen@vironet.com, francis.collins@nih.gov, amy.marcus@wsj.com, Kathleen.Sebelius@hhs.gov,


I have sent Amy Marcus at the Wall Street Journal an email on this scam conference. I have also sent emails to the above - others might do as well. Let us not overwhelm amy Marcus at WSJ though. Might let her know that the CFIDS community is in an uproar since this is yet another way to damage XMRV research, but we can't over do it with her.
 

*GG*

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wilco.keulen@vironet.com, francis.collins@nih.gov, amy.marcus@wsj.com, Kathleen.Sebelius@hhs.gov,


I have sent Amy Marcus at the Wall Street Journal an email on this scam conference. I have also sent emails to the above - others might do as well. Let us not overwhelm amy Marcus at WSJ though. Might let her know that the CFIDS community is in an uproar since this is yet another way to damage XMRV research, but we can't over do it with her.
I sent emails to these 2: wilco.keulen@vironet.com and francis.collins@nih.gov Should I send 1 to Seblius as well?
 

Kati

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Gaston, it won't hurt anything to send one to Mrs Sebelius as well, other than your finger tips. In fact you may even lose your fingerprints on it :innocent1:

In doing so you increase awareness and attention to our cause and real science, less corruption.

Thank you so much .

Kati
 

taniaaust1

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I want to cry and feel sick. This is terrible.. Dr Mikovits not being a part of this first conference on it when she was responsible in finding it in CFS... and just as bad, Dr Switzer talking on the Assay stuff when he couldnt even find it, why isnt someone who could find it talking on that.

They must be joking!!!
 

taniaaust1

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I emailed the contact person for this conference
"Scientific program:
Wilco Keulen (wilco.keulen@vironet.com) "

My email goes as follows (for anyone who dont have the energy to do their own, they can copy mine. Dont forgot to add your own name at bottom).

I was looking at the list of invited speakers for the conference and was shocked to see that Dr Judy Mikovits isnt taking part as she was the one to find this virus in CFS, I wonder why she wasnt invited.

Dr. Frank Ruscetti is not a CFS expert so I dont understand at all how he's been invited to speak on CFS, while someone like Dr Judy Mikovits (who is an expert on this) has been ignored. Can you please give an explanation on this?

Also I'd like to know why the talk on Assay Development is being done by Dr. William Switzer. Most are aware that Dr William Switzer couldnt even find XMRV. Why hasnt someone who is capable of finding it, been given the spot of talking about Assay Development?

This is the first XMRV conference and it dismays me to see that some of the speakers arent at all experts in the fields they are speaking on.

Yours Sincerely
************

ps Hoping to hear back"
 

xrayspex

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Hey, I appreciate the activism; one little constructive critique tanaaist--if anyone uses that letter, I would correct the spelling of "explaination" to explanation and include the appropriate punctuations etc My emails and posts on the web are never as careful as when I send a pro letter so not saying am great on that myself, but think will be taken more seriously if appears as pristine as possible in grammar etc....

Also I don't think the conference is pretending to be on CFS per se, but a workshop on xmrv in general?