New unofficial data on XMRV in CFS according to WPI

[natasa778]

I just posted this on related thread, reposting here as this is the first time 85% positives are mentioned - she must mean commercial tests + science study combined?

Autism One, Chicago
Saturday, May 29, 3 pm
Judy Mikovits, PhD, presents:
XMRV
Chronic fatigue syndrome (CFS) and autism spectrum disorder (ASD) share common clinical features including immune dysregulation, increased oxidative stress, increased expression of proinflammatory cytokines and chemokines, mitochondrial dysfunction and chronic active microbial infections suggesting an underlying immune deficiency may be involved in subgroups of CFS and ASD. We recently demonstrated the first direct isolation of an infectious gammaretrovirus, XMRV, from the blood of CFS patients. We have developed quantitative assays to detect XMRV replication and infection in cell culture. Moreover, we found evidence of XMRV infection in >85% of more than 200 CFS patients tested to date. These data implicate a role for XMRV infection in the pathogenesis of CFS. Because of the clinical similarities of CFS and ASD, we hypothesized that XMRV infection may also be detected in subgroups of ASD. This presentation will update the status of XMRV research, show evidence of XMRV infection in ASD and discuss the implications of XMRV infection in the pathogenesis of neuroimmune disease including ASD.

 

[omerbasket]

I, like you two, don't know. But My thought is that it does not contain the VIPdx tests, since a few months ago Dr. Lombardi said they tested 300 people (Dr. Mikovits is talking about 200), and that 36% of them tested positive (and it seems as a huge jump to over 85%). Therefore I think it may be one of the following:
1) More likely - the tests that WPI has done. Dr. Peterson said in the CFSAC meeting in october 2009 that an independent laboratory had confirmed the WPI's results, by checking 15 patients that are un-related to the WPI's study and that has CFS, and as I understand at least 13 of them were found to be XMRV positive. So, now we have the 101 patients of the original study and the 15 patients of the confirmation examine - and we have now a total number of 112 XMRV positives out of 116. Now, I think it's possible that the WPI has done some other examines on his own, that he did not publish, or maybe these includes samples that were examined before the WPI decided to make a big study with 101 patients. And, there is this WPI study with UK patients - has it started already? Because if it did, might it include results from these patients?
2) It's possible that Dr. Mikovits included patients that were tested by VIPdx also by a serology test, a test that perhaps was done in the WPI's labratories.

 

[maryb]

. And, there is this WPI study with UK patients - has it started already? Because if it did, might it include results from these patients?QUOTE]

No it hasn't started we have all just been contacted by the phlebotomy firm due to organize the blood taking. It will be a while I would think before these results are out - we'll make sure you all get to know as soon as we do.

 

[dannybex]

I, like you two, don't know. But My thought is that it does not contain the VIPdx tests, since a few months ago Dr. Lombardi said they tested 300 people (Dr. Mikovits is talking about 200), and that 36% of them tested positive (and it seems as a huge jump to over 85%).

With all due sincere respect to Dr. Mikovits and the WPI, they really need to hire someone to proofread her press releases and/or emails, as it seems like each time she tries to clarify things or makes a new statement, things just get more confusing, leading to more questions...and more questions...

As you say, there's a huge difference between 36% and 85%.

And whatever happened to that 98% figure from last October-November?



d.

 

[gracenote]

The study I am in with WPI has included over 100 people. This study is testing not only ME/CFS patients, but many other conditions and includes healthy staff, family members and others. I don't think it is always clear when just ME/CFS patients are being talked about and when more inclusive criteria is being used.

So far in my study, we have the results of only 20 tests (WPI is planning to run all 4 testing methods on each blood sample), and 11 have been positive by serology. I don't know how many of the 11 positives were healthy, but I do know that the percentage was higher than the expected 3.8% which is causing a bit of concern.

I don't think Dr. Mikovits includes VIP results they operate separately. (I probably haven't cleared up any confusion; I think it's important not to read too much into separate statements at this time.)

 

[Esther12]

With all due sincere respect to Dr. Mikovits and the WPI, they really need to hire someone to proofread her press releases and/or emails, as it seems like each time she tries to clarify things or makes a new statement, things just get more confusing, leading to more questions...and more questions...

As you say, there's a huge difference between 36% and 85%.

And whatever happened to that 98% figure from last October-November?



d.

It's not ideal, but it seems they're opperating on a bit of a shoe-string. I'm not so concerned about us being confused by it, but I do worry that it could be confusing other researchers and leading to them taking the WPI less seriously, especially with the three negative XMRV/CFS studies. They're in a difficult position, with CFS patients being so desperate for news, and CFS being so surrounded by quackery that they may feel it's important to get their new out... but I'm not sure it's the best stratergy.

 

[cfs since 1998]

I, like you two, don't know. But My thought is that it does not contain the VIPdx tests, since a few months ago Dr. Lombardi said they tested 300 people (Dr. Mikovits is talking about 200), and that 36% of them tested positive (and it seems as a huge jump to over 85%). Therefore I think it may be one of the following:
1) More likely - the tests that WPI has done. Dr. Peterson said in the CFSAC meeting in october 2009 that an independent laboratory had confirmed the WPI's results, by checking 15 patients that are un-related to the WPI's study and that has CFS, and as I understand at least 13 of them were found to be XMRV positive. So, now we have the 101 patients of the original study and the 15 patients of the confirmation examine - and we have now a total number of 112 XMRV positives out of 116. Now, I think it's possible that the WPI has done some other examines on his own, that he did not publish, or maybe these includes samples that were examined before the WPI decided to make a big study with 101 patients. And, there is this WPI study with UK patients - has it started already? Because if it did, might it include results from these patients?
2) It's possible that Dr. Mikovits included patients that were tested by VIPdx also by a serology test, a test that perhaps was done in the WPI's labratories.

With all due sincere respect to Dr. Mikovits and the WPI, they really need to hire someone to proofread her press releases and/or emails, as it seems like each time she tries to clarify things or makes a new statement, things just get more confusing, leading to more questions...and more questions...

As you say, there's a huge difference between 36% and 85%.

And whatever happened to that 98% figure from last October-November?

The 36% is from VIP Dx and the 85% is from WPI. Dr. Mikovits said they are completely separate and she doesn't have access to VIP data. I don't see a contradiction. And 98% of 101 versus 85% of 200, of course when you test more people the percentage will change; again, I don't see a contradiction.

 

[dannybex]

The 36% is from VIP Dx and the 85% is from WPI. Dr. Mikovits said they are completely separate and she doesn't have access to VIP data. I don't see a contradiction. And 98% of 101 versus 85% of 200, of course when you test more people the percentage will change; again, I don't see a contradiction.

I thought VIP DX was doing the testing for WPI? Wasn't that the reason VIP Dx was set up in the first place?

sorry...still confused.

d.

 

[gracenote]

VIP is doing commercial testing with the public. WPI is involved in research and is still actively collecting data. They are doing their own testing.

 

[Cort]

You guys really broke this down well! Thanks for the illuminating discussion. Where is that report from - do we have a link to it?

 

[V99]

It's here http://conference.autismone.org/abstracts.cfm?a1year=2010#mikovits1

Look for Judy Mikovits on the left, select this, and you are then sent to the write up, which is near the bottom of the page.

 

[gracenote]

It's here http://conference.autismone.org/abstracts.cfm?a1year=2010#mikovits1

Look for Judy Mikovits on the left, select this, and you are then sent to the write up, which is near the bottom of the page.

Here's the write up. (I added the paragraph breaks for easier reading).

Judy Mikovits, PhD

Dr. Mikovits holds a PhD from George Washington University, with her thesis in HIV Latency in Monocytes: Mechanism(s) of Immune Activation. The goal of her 3-decade research career has been to understand how human retroviruses dysregulate the delicate balance of the immune response leading to the development of chronic disease. Her research has focused on translational research in government, biotechnology and academic settings.

She joined Whittemore Peterson Institute for Neuroimmune Disease (WPI) in November of 2006 as the WPI's first research director charged with establishing a translational research program aimed at identifying biomarkers and underlying causes of chronic fatigue syndrome (CFS) and other debilitating neuroimmune diseases with overlapping symptoms such as fibromyalgia (FM), atypical multiple sclerosis and autism spectrum disorder (ASD). She sought to examine these complex and poorly understood diseases using a systems biology approach.

Following the establishment of a blood sample repository containing more than 1000 samples from 200 patients and 200 controls taken at different time points over a 3-year period using standardized sample collection/processing methods critical for obtaining comparable data sets from different sample types/methods, Dr. Mikovits established a collaborative network of world-renowned experts in retrovirology, human genetics, immune cell biology, flow cytometry, bioinformatics and drug development.

This collaborative research network is using state of the art multiplex strategies such as a viral microarray, proteomic profiling a, gene expression and HLA/KIR analysis to decipher the pathophysiology of CFS. This approach resulted in the detection of a new infectious human retrovirus XMRV, in the majority of CFS patients tested. XMRV presents a testable hypothesis as a new human pathogen associated with neruoimmune disease and cancer.

 

[gracenote]

Following the establishment of a blood sample repository containing more than 1000 samples from 200 patients and 200 controls taken at different time points over a 3-year period using standardized sample collection/processing methods critical for obtaining comparable data sets from different sample types/methods

This is the first time I remember reading that the blood bank contained samples from patients AND controls taken at different times over three years.

I didn't realize she had this to work with.

 

[FernRhizome]

gracenote: which wpi study are you in? Are you int he UK study? I didn't think any new US study had started up yet with WPI? ~Fern

 

[gracenote]

gracenote: which wpi study are you in? Are you int he UK study? I didn't think any new US study had started up yet with WPI? ~Fern

It's a study with Gordon Medical Associates here in sunny (finally) California. They started drawing blood from patients and staff and others in mid September (before the Science study was published, but not a part of that study), and are still adding patients of GMA to the study.

 

[julius]

Gracenote, do you have any information on how they recruited for this study you are part of? Anything that might give a clue to the 'cohort'?

 

[gracenote]

Gracenote, do you have any information on how they recruited for this study you are part of? Anything that might give a clue to the 'cohort'?

They are purposefully trying to include people with a variety of illnesses along with healthy people. For insurance reasons, the study has been limited to current patients and staff of GMA. An extensive questionnaire is filled out that asks about symptoms, medical test results, where you've lived and traveled, other family members who might be ill, etc. It's specifically not a CFS/ME study, although a large percentage of the patients will fit that diagnosis or have a Lyme diagnosis as they specialize in these diseases.

 

[Otis]

Adding an observation from Courtrygirl

Countrygirl noted in a parallel thread an interesting subtly in the presentation notes which I wanted to move over to this thread.

Gracenote pasted in the information from the 'Presenter' column. The 'Presentation' column reads as follows:

Chronic fatigue syndrome (CFS) and autism spectrum disorder (ASD) share common clinical features including immune dysregulation, increased oxidative stress, increased expression of proinflammatory cytokines and chemokines, mitochondrial dysfunction and chronic active microbial infections suggesting an underlying immune deficiency may be involved in subgroups of CFS and ASD.

We recently demonstrated the first direct isolation of an infectious gammaretrovirus, XMRV, from the blood of CFS patients. We have developed quantitative assays to detect XMRV replication and infection in cell culture. Moreover, we found evidence of XMRV infection in >85% of more than 200 CFS patients tested to date. These data implicate a role for XMRV infection in the pathogenesis of CFS.

Because of the clinical similarities of CFS and ASD, we hypothesized that XMRV infection may also be detected in subgroups of ASD. This presentation will update the status of XMRV research, show evidence of XMRV infection in ASD and discuss the implications of XMRV infection in the pathogenesis of neuroimmune disease including ASD.

Regarding words in red above Countrygirl made the following observation which is worth noting.
- This is a little more reserved than her previous statement that her working hypothesis is that XMRV is to CFS what HIV is to AIDS. So is she taking a step back from her original suggestion that XMRV is causal?

I won't speculate but if anyone has any insight it would be appreciated.

Otis

 

[Countrygirl]

Thanks Otis! :Retro smile: I didn't realise that a new thread had been started.

 

[Gerwyn]

Countrygirl noted in a parallel thread an interesting subtly in the presentation notes which I wanted to move over to this thread.

Gracenote pasted in the information from the 'Presenter' column. The 'Presentation' column reads as follows:

Chronic fatigue syndrome (CFS) and autism spectrum disorder (ASD) share common clinical features including immune dysregulation, increased oxidative stress, increased expression of proinflammatory cytokines and chemokines, mitochondrial dysfunction and chronic active microbial infections suggesting an underlying immune deficiency may be involved in subgroups of CFS and ASD.

We recently demonstrated the first direct isolation of an infectious gammaretrovirus, XMRV, from the blood of CFS patients. We have developed quantitative assays to detect XMRV replication and infection in cell culture. Moreover, we found evidence of XMRV infection in >85% of more than 200 CFS patients tested to date. These data implicate a role for XMRV infection in the pathogenesis of CFS.

Because of the clinical similarities of CFS and ASD, we hypothesized that XMRV infection may also be detected in subgroups of ASD. This presentation will update the status of XMRV research, show evidence of XMRV infection in ASD and discuss the implications of XMRV infection in the pathogenesis of neuroimmune disease including ASD.

Regarding words in red above Countrygirl made the following observation which is worth noting.
- This is a little more reserved than her previous statement that her working hypothesis is that XMRV is to CFS what HIV is to AIDS. So is she taking a step back from her original suggestion that XMRV is causal?

I won't speculate but if anyone has any insight it would be appreciated.

Otis

It is a different way of saying the same thing HIV causes aids XMRV causes ME . if anything the statement is stronger