Author Topic: Study NCI  (Read 11101 times)

Jaz

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #135 on: January 27, 2011, 07:28:02 PM »

I know the WPI is not involved  they are actually supplying the samples

This is contradictory.  Can you explain a bit further what you mean here Gerwyn?  How can the WPI not be involved in this study if they're supplying the samples?
« Last Edit: January 27, 2011, 08:06:12 PM by starryeyes »
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bakercape

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #136 on: January 27, 2011, 07:36:40 PM »
Interesting... I'll remove the stuff about the email then.  Thanks for the correction.

Thanks for listening to my personal experience. It would seem to differ from the info you were given.
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Gerwyn

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #137 on: January 27, 2011, 08:51:55 PM »
http://cfschronicles.blogspot.com/
Quote<blockquote>Secondly, it turns out that along with the doctor in charge, Dr. Frank Maldarelli, Coffin, Stoye and John Mellors are all involved along with their trusty IAP contamination assay.

From Heidi

Now, we, the crazy, frenzied patients who should be paying closer attention to our exercise routines and CBT are formally requested by the CAA and Hunter Hopkins to help out the NIH via NCI with a bit of research. (Full text below.)

First off, reminiscent of our dear departed friend Strauss - " You must also be willing and able to travel at your own expense to the NIH campus in Bethesda, Maryland for a screening evaluation." Secondly, it turns out that along with the doctor in charge, Dr. Frank Maldarelli, Coffin, Stoye and John Mellors are all involved along with their trusty IAP contamination assay.

These people WILL NOT STOP until they convince scientists that XMRV is a contaminate. Isolating XMRV, or showing an antibody response, or Coffin forcing Alter/Lo to use IAP on all the samples and holding up publication was not enough.

 (All Alter/Lo samples were negative for contamination with IAP.) The WPI reporting in supplemental materials that using PCR and certain kits held potential risks of contamination, so they went further and used culture and isolation of the virus was still not enough. I sort of wonder who the fanatics really are at this point - fanatical patients (and the fanatical scientists who love them), or "them"?

[/color][/size]
[/color]I was almost hesitant to blog anything about this issue until I saw this post on the Hunter-Hopkins Facebook page today. WPI is not involved in this study. [/size]



remember the names of the people who were encouraging entry into this trap
</blockquote>
« Last Edit: January 27, 2011, 09:07:00 PM by Gerwyn »

MEkoan

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #138 on: January 27, 2011, 09:33:22 PM »



This issue of the always excellent and relevant CFSChronicles is not to be missed!



http://cfschronicles.blogspot.com/

Quote
However, as I see these studies lining up with their trusty IAP tool in hand, a new magic wand that can further suspicion and doubt in the minds of scientists, doctors, and the public, I would like to beg patients to reconsider helping these particular researchers in any way. Assisting in studies with inherent design flaws, especially those headed by researchers predisposed to XMRV being a contaminate, holds us all back from finding the truth. In addition, this announcement seems to me to be premature. In fact, there is no evidence that their IRB has even been approved. Without this approval, no researcher is allowed to collect samples. It would be illegal. If they draw your blood without proof of having IRB approval, call them out on it!
Knowledge is knowing a tomato is a fruit. Wisdom is not putting it in a fruit salad.

Robyn

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #139 on: January 27, 2011, 09:48:23 PM »
Now is anyone ready to send their blood to Stoye?
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B8b_E

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #140 on: January 27, 2011, 09:54:35 PM »
Dr Enlander sent 100 samples to Kerr/Stoye in the UK to be tested for XMRV, apparently only around 10 were processed?
(You can't just 'lose' 90 blood samples unless you need them for something in the future).

Stoye is flumoxed as to where they can possibly be and is saying nothing (according to a blog),  that implies it mus be Kerr's fault says Stoye, ask him but he's conveniantly out of the way and not allowed to be part of the study anymore, so who has the blod samples? Did they vanish into thin air?

Ohh well...

The Sweet Smell of Success looms.....
« Last Edit: March 09, 2011, 04:22:31 AM by xMRV+BäbY »

bakercape

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #141 on: January 27, 2011, 11:46:52 PM »
Dr Enlander sent 100 samples to Kerr/Stoye in the UK to be tested for XMRV, apparently only around 10 were processed?
(You can't just 'lose' 90 blood samples unless you need them for something in the future).

Stoye is flumoxed as to where they can possibly be and is saying nothing, it must be Kerr's fault says Stoye, ask him but he's conveniantly out of the way
and not allowed to be part of the study anymore, so who has the blod samples? Did they vanish into thin air?

Ohh well...

The Sweet Smell of Success looms.....

Maybe he ate them. :)
“Any man who is attached to things of this world is one who lives in ignorance and is being consumed by the snakes of his own passions”
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dsdmom

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #142 on: January 27, 2011, 11:48:39 PM »
Maybe he ate them. :)

 ;D ;D ;D ;D ;D ;D ;D

Thank you for the laugh!

jillNZ

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #143 on: January 28, 2011, 10:06:08 AM »
Now that Jamie Deckoff Jones is working for the WPI - can't she answer the question of whether the WPI have even been made aware of this study and what they think of it.
I really couldn't make head nor tail of Gerwyns email - like others said the words "corrupt, crime of humanity etc" didn't sound like Judy. She is much shrewder than to say word like that when she knows they'd go public.
I think the study is being cheap to be sure and they should be just replicating the WPI methodology with well described patients from a decent CFS dr that uses the CCC criteria. What they seem to want to do is to cover all the issues raised by one sweeping study instead of fastidiously doing science as it should be done. I can kinda see on one hand that t hey see they have a ready pool of patients in the biobank - but its hardly ethical. As I say can someone get to the truth with Deckoff Jones maybe or maybe even ph Annette.
I for one get sick of us all having to watch over our shoulders all the time for incompetent scientists - it reminds me of me having to be my own lawyer and now own project manager. It seems you can never trust a professional. So I understand  all the sceptiscism. Its just depressing and a major pain in the butt. Did AIDS patients have to go thru this? The other Dr to ask would be the Conout guy who will also be working at the WPI. Hillary are you out there???
Jill
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Patricia

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #144 on: January 28, 2011, 11:06:29 AM »
JillNZ, if you still have doubts, please read Heidi Bauer's blog article:

http://cfschronicles.blogspot.com/    Heidi is WPI's "Advocate of the year" for 2010. 

The blog includes this explanation:

Quote
If Dr. Maldarelli is actually saying this, it comes off to me like a ploy to gain patient trust and to dare the WPI to speak out against the NCI study. If the WPI speaks out against it, then they risk looking as though they are defensive, or that they are working directly with patients to turn them away from other studies. If they don't speak out against it, then there are naive patients falling for what seems like a great opportunity to find out their XMRV status for "free", which, let's face it, is what many patients are really looking for when signing up for a study. The way this was phrased by Hunter Hopkins FB is a no win for WPI.
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Jean

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #145 on: January 28, 2011, 09:44:50 PM »
When I posted my comments on the Maldarelli study I had not seen anything about it on the forum. I did not know what to think of it. I wanted to know what others thought. I was just repeating what I had been told not advocating joining the study. I did not know I had been lied to.
Jean

lulu

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #146 on: January 29, 2011, 01:55:18 PM »
I agree with all of Dr. Yes's points. And can't help noticing how many aspects of this resemble another study recently touted on our forum by a senior scientist that did not have IRB approval and murky, even misleading statements about methods and collaborators. Please be careful folks.

lulu

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #147 on: January 29, 2011, 06:20:53 PM »
Well now that you mention it ger, yes.

jillNZ

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #148 on: January 31, 2011, 09:57:07 AM »
Thank you V99 and Wild Daisy and Dr Yes for your comments.  I just can't believe this bullshit is happening. Call me naive. Mike Holmes used to go to the US conferences and come back saying how suspiscious  the patients were in their government and its researchers. He concluded that the patients were right after sitting for sometime on the sideline watching. He was the only decent correspondent that would talk about these issues - or was astute enough to pick up on them. Dr Vallings sidesteps these v important issues. He realised just how political it all was back in the early 90s. God I hope Warren Tate is up for all this. My god - its more than a labyrinth. It is like kenny said - a crime against humanity.

If I had any money I'd give it to the WPI - by God they are being screwed. I will try my hardest to "guide" dearest Warren on this potholed road. Here in NZ we can ph these people - or atleast I used to ph dear Mike.
Jill
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awol

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #149 on: January 31, 2011, 10:01:07 AM »
If I had any money I'd give it to the WPI - by God they are being screwed. I will try my hardest to "guide" dearest Warren on this potholed road. Here in NZ we can ph these people - or atleast I used to ph dear Mike.
Jill

Thanks. I think anyone new to te field can really use a guide.