Author Topic: video: Voices from the Shadows, Mill Valley Discussion  (Read 1570 times)

Patricia

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video: Voices from the Shadows, Mill Valley Discussion
« on: December 14, 2011, 11:44:06 AM »
http://voicesfromtheshadowsfilm.co.uk/mill-valley-discussion/

Note:  Photos and videos are on linked page.

This is a very encouraging talk from Dr. Montoya.  Transcript of Dr. Montoya's talk is here:

http://www.mecfsforums.com/wiki/Montoya%27s_talk_at_Mill_Valley,_9/14/2011

He said:

Quote
If this disease receives the attention, the amount of money that is given to other diseases, we will have the solution within a 5-year period.


The screening of ’Voices from the Shadows’ at mvff was followed by a  discussion panel chaired by Zoe Elton.

Guest speakers were -

 • Dr Montoya from Stanford School of Medicine, a world authority on Toxoplasmosis and one of the foremost researchers and doctors for CFS. He is working in association with ME/CFS researchers from other top US universities and has recently instigated the Stanford Chronic Fatigue Initiative  http://chronicfatigue.stanford.edu/

 • David Tuller, a lecturer in public health & journalism for a new MA course he runs at UC Berkeley. He has frequently written for the New York Times on health issues, including several articles this year on ME/CFS.

 • Tina Caskey, an ME patient and author of ‘When Something’s Wrong’ www.whensomethingswrong.com/

 • Natalie Boulton, a film maker for ‘Voices from the Shadows’.
« Last Edit: December 14, 2011, 01:11:05 PM by Wildaisy »
Never be bullied into silence; speak your truth even when your voice shakes.

gracenote

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Re: video: Voices from the Shadows, Mill Valley Discussion
« Reply #1 on: December 14, 2011, 07:15:35 PM »
Really encouraging to read how committed Dr. Montoya is despite the lack of support he receives from his colleagues.

Thanks, Wildaisy.
You need to first decide this is a disease worth studying.
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Tango

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Re: video: Voices from the Shadows, Mill Valley Discussion
« Reply #2 on: December 14, 2011, 09:08:48 PM »
I want to know if he will do a HGRV study using clinically validated assays.
"I suspect there have been a number of conspiracies that never were described or leaked out. But I suspect none of the magnitude and sweep of Watergate." Woodward

"I would favor any name that does not impose (or give the appearance of imposing) taxonomic preconceptions on the nomenclature." Coffin

Sp!ndrift

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Re: video: Voices from the Shadows, Mill Valley Discussion
« Reply #3 on: December 14, 2011, 09:50:06 PM »
Thanks for posting Daisy, I had missed that one. Montoya never fails to bring tears to my eyes with his presentations. What a man!

Tango, last word I have, the pathogen part of Montoya's first study (blood draw last year) is running through Lipkin and the other parts of this study, e.g. genetics, are done by others. This is a ten year study approaching CFS from many angles.

He has completed the blood draw from patients for the NIH study (I am in that one too, don't do the cohort thing on me now :P   :-* ). The paper I signed says they are testing for XMRV and MLVs. Next he will do a blood draw for the CFI study. They are also working on a brain study at Stanford to try and find a biomarker for faster diagnosis.
Eddie would go

Tango

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Re: video: Voices from the Shadows, Mill Valley Discussion
« Reply #4 on: December 14, 2011, 09:56:24 PM »
Thanks for posting Daisy, I had missed that one. Montoya never fails to bring tears to my eyes with his presentations. What a man!

Tango, last word I have, the pathogen part of Montoya's first study (blood draw last year) is running through Lipkin and the other parts of this study, e.g. genetics, are done by others. This is a ten year study approaching CFS from many angles.

He has completed the blood draw from patients for the NIH study (I am in that one too, don't do the cohort thing on me now :P   :-* ). The paper I signed says they are testing for XMRV and MLVs. Next he will do a blood draw for the CFI study. They are also working on a brain study at Stanford to try and find a biomarker for faster diagnosis.

I have no confidence in Lipkin/NIH or CFI, which creates a conflict of interest.  They have not said a word about the once planned multi lab study.  This chopping and changing of design has to stop.  BWG did it, so did PACE (I know that is not virology, but the principle applies).  In the BWG they said MLVs - but what does that mean?  In the BWG they never used assays designed to look for other MRVs or different strains of "XMRV", and MLVs are mouse viruses.  Did it really say MLV?  That is shocking!

The assays being used are once again only searching for VP62/XMRV, but that isn't what Lombardi et al or Lo et al found. 

How can anyone pretend a study is looking for the viruses found, but only look for a single different virus that no one ever found?  I'm not even mentioning the critical clinical validation.

Science is not served by doing this.  Anyway Mikovits and Ruscetti are out. 
« Last Edit: December 14, 2011, 10:01:38 PM by Tango »
"I suspect there have been a number of conspiracies that never were described or leaked out. But I suspect none of the magnitude and sweep of Watergate." Woodward

"I would favor any name that does not impose (or give the appearance of imposing) taxonomic preconceptions on the nomenclature." Coffin

Sp!ndrift

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Re: video: Voices from the Shadows, Mill Valley Discussion
« Reply #5 on: December 14, 2011, 10:03:03 PM »
  ;D ;D ;D 8) Well, at least you didn't do the cohort thingy on me. :-*  :-*  :-*  I gotta run, doc appointment.   
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Tango

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Re: video: Voices from the Shadows, Mill Valley Discussion
« Reply #6 on: December 14, 2011, 10:06:43 PM »
  ;D ;D ;D 8) Well, at least you didn't do the cohort thingy on me. :-*  :-*  :-*  I gotta run, doc appointment.

LOL.  They won't even found background levels, so cohort doesn't mean a thing until they use proven assays.

Can you find out if they did say MLVs on that form though? 

They can't be looking for other MRVs and the found MRVs because the assays are set to VP62, but if it says MLVs they are only saying mouse viruses. I think that would be misleading patients.
"I suspect there have been a number of conspiracies that never were described or leaked out. But I suspect none of the magnitude and sweep of Watergate." Woodward

"I would favor any name that does not impose (or give the appearance of imposing) taxonomic preconceptions on the nomenclature." Coffin

Patricia

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Re: video: Voices from the Shadows, Mill Valley Discussion
« Reply #7 on: December 14, 2011, 10:23:52 PM »
Tango said:
Quote
Can you find out if they did say MLVs on that form though? 


Sp!ndrift posted (above):
Quote
The paper I signed says they are testing for XMRV and MLVs.
« Last Edit: December 14, 2011, 10:31:50 PM by Wildaisy »
Never be bullied into silence; speak your truth even when your voice shakes.

Tango

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Re: video: Voices from the Shadows, Mill Valley Discussion
« Reply #8 on: December 14, 2011, 10:29:41 PM »
MLVs are mouse viruses through.   MRVs are those that infect humans.

Mikovits and Ruscetti also never did detect VP62/XMRV, but other MRVs.  Some that will be other xeno/poly hybrids, but as yet we don't know. 
"I suspect there have been a number of conspiracies that never were described or leaked out. But I suspect none of the magnitude and sweep of Watergate." Woodward

"I would favor any name that does not impose (or give the appearance of imposing) taxonomic preconceptions on the nomenclature." Coffin

Sp!ndrift

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Re: video: Voices from the Shadows, Mill Valley Discussion
« Reply #9 on: December 15, 2011, 02:57:23 AM »
Apologies, I was in a hurry earlier today because I needed to get to the doctor. I have to make a correction. I was wise enough to check my papers to see exactly what they wrote and it did say MLVs. Unfortunately, I got that off of the accountant statement, not the consent I signed. I can't find the copy of the consent. If all fails, we'll just blame the accountant. 8) Trust me, the murder is always the accountant. :-* <— for my accountant friend  ;)

I know there are others from this forum in the study. If someone has a copy of their consent form, please check and post. Thanks!


Anyway Mikovits and Ruscetti are out. 
 

Nope! http://www.cfsnovel.com/blog/?p=409
When will you ever trust me, Tango??? Can you at least try sometimes?   :-\  :-*

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Patricia

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Re: video: Voices from the Shadows, Mill Valley Discussion
« Reply #10 on: December 15, 2011, 03:17:40 AM »
Tango:
Quote
I have no confidence in Lipkin/NIH or CFI, which creates a conflict of interest.  They have not said a word about the once planned multi lab study.  This chopping and changing of design has to stop.  BWG did it, so did PACE (I know that is not virology, but the principle applies).  In the BWG they said MLVs - but what does that mean?  In the BWG they never used assays designed to look for other MRVs or different strains of "XMRV", and MLVs are mouse viruses.  Did it really say MLV?  That is shocking!

The assays being used are once again only searching for VP62/XMRV, but that isn't what Lombardi et al or Lo et al found. 

How can anyone pretend a study is looking for the viruses found, but only look for a single different virus that no one ever found?  I'm not even mentioning the critical clinical validation.

Science is not served by doing this.  Anyway Mikovits and Ruscetti are out. 


That's okay, Tango.  Other people have confidence in Lipkin--and Mikovits and Ruscetti are NOT out.  Looks like you're wrong about Lipkin.

http://www.cfsnovel.com/blog/?p=409


Never be bullied into silence; speak your truth even when your voice shakes.

Robyn

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Re: video: Voices from the Shadows, Mill Valley Discussion
« Reply #11 on: December 15, 2011, 03:32:44 AM »
I have no confidence in Lipkin/NIH or CFI, which creates a conflict of interest.  They have not said a word about the once planned multi lab study.  This chopping and changing of design has to stop.  BWG did it, so did PACE (I know that is not virology, but the principle applies).  In the BWG they said MLVs - but what does that mean?  In the BWG they never used assays designed to look for other MRVs or different strains of "XMRV", and MLVs are mouse viruses.  Did it really say MLV?  That is shocking!

The assays being used are once again only searching for VP62/XMRV, but that isn't what Lombardi et al or Lo et al found. 

How can anyone pretend a study is looking for the viruses found, but only look for a single different virus that no one ever found?  I'm not even mentioning the critical clinical validation.

Science is not served by doing this.  Anyway Mikovits and Ruscetti are out.

Must be talking to a bad source.  hmmm  So it's WPI out, Mikovits & Ruscetti in.
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verveine

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Re: video: Voices from the Shadows, Mill Valley Discussion
« Reply #12 on: December 15, 2011, 03:37:07 AM »
Thanks for posting Daisy, I had missed that one. Montoya never fails to bring tears to my eyes with his presentations. What a man!


Me too.  We need more like him!

Tango

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Re: video: Voices from the Shadows, Mill Valley Discussion
« Reply #13 on: December 15, 2011, 11:00:49 AM »
Apologies, I was in a hurry earlier today because I needed to get to the doctor. I have to make a correction. I was wise enough to check my papers to see exactly what they wrote and it did say MLVs. Unfortunately, I got that off of the accountant statement, not the consent I signed. I can't find the copy of the consent. If all fails, we'll just blame the accountant. 8) Trust me, the murder is always the accountant. :-* <— for my accountant friend  ;)

I know there are others from this forum in the study. If someone has a copy of their consent form, please check and post. Thanks!

 

Nope! http://www.cfsnovel.com/blog/?p=409
When will you ever trust me, Tango??? Can you at least try sometimes?   :-\  :-*

.

I have never not trusted you Spin, but this is the HHS departments and that is not confirmation.  We need this on the NIH website.
"I suspect there have been a number of conspiracies that never were described or leaked out. But I suspect none of the magnitude and sweep of Watergate." Woodward

"I would favor any name that does not impose (or give the appearance of imposing) taxonomic preconceptions on the nomenclature." Coffin

Tango

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Re: video: Voices from the Shadows, Mill Valley Discussion
« Reply #14 on: December 15, 2011, 11:01:54 AM »
Must be talking to a bad source.  hmmm  So it's WPI out, Mikovits & Ruscetti in.

No, I know this has to go on the NIH website or they will mess with the study details like they did in the BWG. 

For now it is a rumour. 

What has Lipkin ever done for ME patients to make people implicitly think he is a god?  This is fauci's hired gun.

We also don't want a study that would only include Mikovits and Ruscetti, as what is the point in that.  It's not as if anyone but Lo et al. looked at the viruses found. 

We also need them to be clear this cannot ever be said to be definitive.  It is only one study.
« Last Edit: December 15, 2011, 11:07:26 AM by Tango »
"I suspect there have been a number of conspiracies that never were described or leaked out. But I suspect none of the magnitude and sweep of Watergate." Woodward

"I would favor any name that does not impose (or give the appearance of imposing) taxonomic preconceptions on the nomenclature." Coffin