Author Topic: Study NCI  (Read 10811 times)

Tango

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Study NCI
« on: January 25, 2011, 11:40:31 PM »
http://www.facebook.com/notes/xmrv-global-action/nci-looking-for-patient-blood-samples/10150093145081797
Quote
NCI Looking for Patient Blood Samples
by XMRV Global Action on Tuesday, January 25, 2011 at 11:13pm
From Hunter-Hopkins Center, 1-25-11
 
From The CFIDS Association of America regarding the NIH study on ME/CFS & participating in the study. (see infomation in the comment section below) -M
 
Several teams of researchers at the National Institutes of Health (NIH) have been studying XMRV and have been working to develop new and more sensitive laboratory tests for it. One NIH team at the National Cancer Institute, has recently rec...eived approval to obtain samples directly from CFS patients. To be eligible for the study, you must have a diagnosis of CFS and must be under the care of a physician. You must also be willing and able to travel at your own expense to the NIH campus in Bethesda, Maryland for a screening evaluation.
 
The researchers are specifically trying to reach individuals who have already been tested for XMRV so they can compare the results of their new tests with the results obtained using other tests. People with positive or negative results will be eligible to participate. The NIH will share samples obtained in this study with other laboratories that have tests for XMRV. The goal is to determine which kind of test is best to detect XMRV. All participants will understand and give written consent before any samples are obtained, tested or shared. Participants have the right to withdraw from the study at any time.
 
Individuals who meet criteria for this study will make an appointment to receive a physical examination, routine laboratory tests and research tests at the NIH Clinical Center in Bethesda, Maryland. This study will not provide any medications. No new therapies, including antiretroviral therapies, will be tested in this study.
 
If you are interested in participating, please contact Dr. Frank Maldarelli, the study contact, at his office directly at (301) 435-8019 for more information.
http://www.facebook.com/HunterHopkinsCenterFans

« Last Edit: February 08, 2011, 12:05:04 AM by v99 »
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B8b_E

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #1 on: January 26, 2011, 12:28:55 AM »
How unfortunate.

''Hunter-Hopkins Center'' is named after Allison Hunter, who died from ME.

Quote
Hunter Memorial Foundation (AHMF, Australia). This foundation was founded by the family and friends of Alison Hunter to provide information and advocacy to persons with CFS/ME, and to promote international research collaboration. (The Hunter-Hopkins Center was also named in memory of Alison).
http://www.ahmf.org/index.html

Canadian National ME/FM Network

dsdmom

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #2 on: January 26, 2011, 01:33:08 AM »
Could someone please explain to me the rationale behind these scientists wanting to use previously tested patients. I am looking for answers other than "to prove wpi wrong" . 
Is there an actual scientific reason for doing something like this or is it unprecedented?


*Mod Note - Miller's name was removed per forum rules. 
« Last Edit: January 26, 2011, 01:45:30 PM by starryeyes »

bakercape

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #3 on: January 26, 2011, 02:14:04 AM »
Appears to be a de-discovery mission. First egoclimber/Cort and now the CAA.
   I bet this one is an attempt to tear down Rucetti's work.
   Isn't Legripe from the NCI too? Just because Ruscetti works there doesn't mean we can trust the whole institution. I'm sure the NCI has factions and rivalries.
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dsdmom

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #4 on: January 26, 2011, 02:20:04 AM »
If this really is unprecedented I don't even know what to say. I feel like the truth is never going to get out if the government keeps suppressing the truth. It is so disconcerting. Or really, devastating.

Patricia

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #5 on: January 26, 2011, 03:06:26 AM »
And why is the CAA pushing this study?

Quote
Dear SolveCFS BioBank participant,

   Thank you for your continued participation in the SolveCFS BioBank. The CFIDS Association is establishing several new research collaborations and anticipates expanded interest in the BioBank during 2011. We are also in the final stages of migrating our clinical questionnaire to an online format and will be contacting BioBank participants to update their information when the on-line format is ready.

  From time to time we will share information about other opportunities to participate in research studies that follow a different protocol than has been approved for the BioBank, like the one below. You can choose whether to follow-up on these opportunities or not. Whatever your decision is, it will not affect your current or future participation in the BioBank. Rest assured that we will not share any information about you with these research teams, and they will not disclose any information to us about your participation. All the privacy and confidentiality measures you count on will remain in place.

   NEW STUDY RECRUITING DIAGNOSED CFS PATIENTS: As you may know, in late 2009 researchers reported the presence of a virus called XMRV in individuals with CFS. XMRV has also been reported in prostate cancer and has been found in a small number of healthy individuals as well. There is a growing body of research about XMRV, but there is presently no firm understanding about the role it may have in CFS or prostate cancer, or how the virus got into the human population. Laboratory studies have shown that the virus is difficult to find because it is present at low levels in the blood, and sensitive testing is necessary to detect it. For more information about XMRV, please visit the resource page on the CFIDS Association's web site at http://www.cfids.org/xmrv/default.asp

 Several teams of researchers at the National Institutes of Health (NIH) have been studying XMRV and have been working to develop new and more sensitive laboratory tests for it. One NIH team at the National Cancer Institute, has recently received approval to obtain samples directly from CFS patients. To be eligible for the study, you must have a diagnosis of CFS and must be under the care of a physician. You must also be willing and able to travel at your own expense to the NIH campus in Bethesda, Maryland for a screening evaluation. 

The researchers are specifically trying to reach individuals who have already been tested for XMRV so they can compare the results of their new tests with the results obtained using other tests. People with positive or negative results will be eligible to participate. The NIH will share samples obtained in this study with other laboratories that have tests for XMRV. The goal is to determine which kind of test is best to detect XMRV. All participants will understand and give written consent before any samples are obtained, tested or shared. Participants have the right to withdraw from the study at any time. 

 Individuals who meet criteria for this study will make an appointment to receive a physical examination, routine laboratory tests and research tests at the NIH Clinical Center in Bethesda, Maryland. This study will not provide any medications. No new therapies, including antiretroviral therapies, will be tested in this study.   

If you are interested in participating, please contact Dr. Frank Maldarelli, the study contact, at his office directly at (301) 435-8019 for more information.   

Participation in this study will not be coordinated through the SolveCFS BioBank and any questions about it should be directed to the NIH.   

With best wishes for health and progress in the new year,   

Gloria E. Smith
SolveCFS BioBank Coordinator
The CFIDS Association of America
   
Our Mission:
 For CFS to be widely understood, diagnosable,
curable and preventable.
 
Our Strategy:
 To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.
 
Our Core Values:
 
To lead with integrity, innovation and purpose.
       
« Last Edit: January 26, 2011, 03:09:43 AM by Wildaisy »
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Robyn

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #6 on: January 26, 2011, 03:24:44 AM »
And guess who's been sending patients CAA's way for the biobank study for months now?  Klimas for one.  Isn't the Blood Working group  working to develop new and more sensitive laboratory tests.  Exactly why do they need XMRV positive blood and why are they not replicating WPI's methods?
« Last Edit: January 26, 2011, 03:32:37 AM by Robyn »
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B8b_E

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #7 on: January 26, 2011, 03:30:17 AM »
Is that correct?

Do we have a source, if so that's pretty incredible Robyn. (Incredibly sad).

It's almost as if the rumour Nancy Klimas got turned away at the WPI door for a job, and is saying F8ck Y&u to the WPI. This could be incorrect though. Maybe Nancy Klimas had does research before for the CDC and Reeves/Unger? Who knows.

However, we need to make sure this is accurate before getting majorly pissed off with Nancy Klimas.

I must say it's quite strange Nancy Klimas has access to many 100's if not 1000's of patients and hasn't done an XMRV ''CFS' study with the VIPDX culture test.
(In contrast to Paul Cheney & Kenny De Meirleir & Dr Bell - teaming up with Hanson).

It makes you wonder if  Nancy Klimas's 'Chronic Fatigue' patients, are just that.   Perhaps not all, but the majority?

Nancy Klimas was the first out of the gate when XMRV news broke, the first after the WPI. I reallt appreciated her taking the trouble to do some videos, and go on TV even.  It is quite bizarre what is apparently happening and I can't think why unless there is a simple explanation.

And that could be???....
« Last Edit: January 26, 2011, 03:33:20 AM by =Br0keN= »

bakercape

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #8 on: January 26, 2011, 03:32:52 AM »
Makes me think of this clip below. ;) 

This could be a very slick setup. Use the NIH and NCI name to entice patients to be trusting and give samples. I mean the NCI has Ruschetti and the NIH has Alter so they must be the good guy institutions.But they are large institutions with many conflictions. And these two men seem to not be involved in the study or providing samples.
   So a negative result could have the effect of diminishing their work and to remove/ distance there institutions from XMRV and friends research.
    And the CAA advertises it? I have never smelled setup like this before.
   I hope I'm wrong. But those who have been tested hold the cards now. We have the power as others have pointed out. If they want our blood they need to prove to us they can find the viruses. We owe them nothing.

Admiral Ackbar's "It's a trap!" scene

« Last Edit: January 26, 2011, 04:04:44 AM by bakercape »
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Robyn

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #9 on: January 26, 2011, 03:43:16 AM »
Is that correct?

Do we have a source, if so that's pretty incredible Robyn. (Incredibly sad).

It's almost as if the rumour Nancy Klimas got turned away at the WPI door for a job, and is saying F8ck Y&u to the WPI. This could be incorrect though. Maybe Nancy Klimas had does research before for the CDC and Reeves/Unger? Who knows.

However, we need to make sure this is accurate before getting majorly pissed off with Nancy Klimas.

I must say it's quite strange Nancy Klimas has access to many 100's if not 1000's of patients and hasn't done an XMRV ''CFS' study with the VIPDX culture test.
(In contrast to Paul Cheney & Kenny De Meirleir & Dr Bell - teaming up with Hanson).

It makes you wonder if  Nancy Klimas's 'Chronic Fatigue' patients, are just that.   Perhaps not all, but the majority?

Nancy Klimas was the first out of the gate when XMRV news broke, the first after the WPI. I reallt appreciated her taking the trouble to do some videos, and go on TV even.  It is quite bizarre what is apparently happening and I can't think why unless there is a simple explanation.

And that could be???....

http://forums.aboutmecfs.org/showthread.php?4031-SolveCFS-Biobank-Beginning&highlight=klimas+caa+biobank

From the link:

A subject will be eligible for inclusion in current SolveCFS BioBank studies if they have previously been diagnosed with CFS by either the Fukuda (1994) research criteria or the Canadian (2003) clinical criteria by one of these four physicians:

• Lucinda Bateman, M.D., Fatigue and Fibromyalgia Consultation Clinic, Salt Lake City, Utah
• Stephen Gluckman, M.D., University of Pennsylvania, Philadelphia, Pennsylvania
• Nancy G. Klimas, M.D., University of Miami/Veterans Affairs Administration, Miami, Florida
• Charles Lapp, M.D., Hunter-Hopkins Clinic, Charlotte, North Carolina

The general inclusion and exclusion criteria listed below also apply. CFS patients will be preferentially selected if they have been diagnosed by the Canadian clinical criteria or have documented abnormal NK cell laboratory results.



I believe a few of Dr. Peterson's patients have reported they were referred to that Biobank study as well.

« Last Edit: January 26, 2011, 04:03:15 AM by Robyn »
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Robyn

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #10 on: January 26, 2011, 03:47:32 AM »
Remember I think the NCI has some scientists that came out with a negative XMRV prostate study. They tested like 800 samples or something. Could be part of the same group.  They are not working with Dr. Ruscetti. Gerwyn did an analysis on that paper I believe.

« Last Edit: January 26, 2011, 04:02:38 AM by Robyn »
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being

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #11 on: January 26, 2011, 04:14:24 AM »
Could someone please explain to me the rationale behind these scientists wanting to use previously tested patients. I am looking for answers other than "to prove wpi wrong" . 
Is there an actual scientific reason for doing something like this or is it unprecedented?

I think it might be because right now there are a lot of variables with varying degrees of possibility and/or probability which might explain the different results obtained thus far in XMRV research. Patient selection criteria, geographic location, assay differences, etc. are all on the table. From what I can tell re-testing the same patients would cut down on those variables.
« Last Edit: January 26, 2011, 01:48:09 PM by starryeyes »

Patricia

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #12 on: January 26, 2011, 04:23:59 AM »
being said:
Quote
I think it might be because right now there are a lot of variables with varying degrees of possibility and/or probability which might explain the different results obtained thus far in XMRV research. Patient selection criteria, geographic location, assay differences, etc. are all on the table. From what I can tell re-testing the same patients would cut down on those variables.

If they really wanted to be sure, they would replicate the original SCIENCE study, not be combing the countryside for people WPI has tested to re-test.

And, as someone has already pointed out, if their intentions were honest, all they would have to do is to contact WPI, which they have not done.  Instead, they have associated themselves with the CFIDS Assn of America.
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B8b_E

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #13 on: January 26, 2011, 05:11:19 AM »
Correct me if I'm wrong but:

Alter/Lo compared 15 years old stored blood with fresh samples and showed mutations, as is expected in a retroviral infection in humans.  All but one sample? was still MULV positive after this time.
Vs
WPI looked at fresh blood only and the SCIENCE paper did not use 15 year  old  sample being able to 'back date' the infection which Alter/Lo did.


Alter/Lo 'found' new types of MULV
Vs
WPI study was on XMRV, a subset of XMRV


Alter/Lo did 1 type of scientific experiment, looking at DNA
Vs
WPI used 5 methods and even photographed the infection.


So Wildaisy is certainly correct in saying no-one has ever replicated the SCIENCE paper.  Why is this? The nay sayers could XMRV research tommorow by proving the WPI wrong. Except they won't and they cannot. What conclusion does one draw from this? The answer is obvious. They have billions of $ budget and yet cannot find the time or resources to bother replicating the SCIENCE paper.

Which is hugely reminiscent of what the CDC did with Elaine DeFreitas's CAV retrovirus and 'CFS' back around 1991.  All those years ago.....
« Last Edit: January 26, 2011, 05:15:33 AM by =Br0keN= »

B8b_E

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Re: Do not join study - Dr. Frank Maldarelli at the NCI
« Reply #14 on: January 26, 2011, 05:16:11 AM »
Which reminds me, when is the Blomberg XMRV replication study out, 2011 or 2012?
That looks more promising than the Frank Maldarelli effort at the HHC.
« Last Edit: January 26, 2011, 05:18:16 AM by =Br0keN= »