HGRVs - Constructive general discussion - for exploring HGRV research

[Bob]

I've started this new thread for constructive discussion relating to HGRVs, for those of us who are interested in following and exploring the research in depth.

Some of us are interested in exploring the possibilities of HGRVs, in a positive way, and I think it would be refreshing if we could discuss what interests us, without having to constantly argue with the voices that only believe that HGRV research is a waste of time, and who only wish to vigorously promote that view.

I've set up this thread as a safe space for those of us interested in exploring and discussing the research.

So I politely ask those members who are not interested in XMRV or HGRVs, or who think that HGRV research is a waste of time, or that XMRV is purely a contaminant, to respect the purpose of this thread and to not post here, and to allow others to be free to explore the subject that interests us.

--- --- ---

I'd be quite interested in us bringing together the various strands of research that indicate that there might be HGRVs associated with ME and prostate cancer, because I think I might have forgotten about some of it now.

And also it would be good to discuss exactly where we now stand since the BWG study and the partial retraction etc.

A good starting point might be discussing Judy's Invest in ME DVD presentation, which currer is currently making notes on.

(so, over to you currer )

 

[currer]

Ok Bob, I agree.

It is natural that we are all excited by the rituximab news, however some of us cant give up retroviruses!

 

[ukxmrv]

Thanks Bob for the thread

Currer, I'm very grateful to you for confirming that Dr Mikovits spoke about the BWG blood tubes at the Invest in ME conference. I jotted down that and magnesium but it was as far as I got.

 

[currer]

These points are on other threads. However they can bear repeating.

Dr Mikovits discusses some serology tests.-

They did a 2D gell electrophoresis test on patient antibodies. this runs the antibodies out on a gel and shows the antigen binding to the antibody.

The wiki about these tests is here. http://en.wikipedia.org/wiki/Two-dimensional_gel_electrophoresis

Dr Mikovits said that this revealed that the antigen was a HGRV and that there was no non-specific cross reaction going on.

Assuming the 2D electrophoresis can be accurately relied on to reveal the presence of an identifiable protein this must show an antibody reaction against MLV - like proteins and so cannot be asserted to be contamination.

I suppose the accuracy of this test relies on the accuracy with which a specific protein can be distinguished from another. Does anyone know how easy this is to do?

There seems to be a reference to the antibody test in this report from the Tullamore talk.
http://www.mecfsforums.com/index.php/topic,9903.0.html?PHPSESSID=5f8akq4pb35pp5k7qqpkn4ghb7

 

[currer]

The other point I was writing about was her reference to the use of EDTA as an anti - coagulant at the request of the BWG as this is normally used in HIV tests, and I supose they require some kind of uniformity in the blood testing procedures.

Dr Mikovits said that she uses heparin normally and that the switch to EDTA had reduced her accuracy to 10%, but that they were working on it.

She said the EDTA destroys magnesium and takes the LNCAP cells "right off the back of the flask" (whatever that refers to!)

Obviously this is a problem for the culturing process.

Now these statements are made rapidly in passing, as she moves on to another point.
I think it such a shame that she cannot publish because it is hard to interpret these facts with so little to go on.

I did not follow the BWG report in any detail, but as far as I remember it made no public reference to these problems.
I do remember that Dr Mikovits referred to this as a problem in the BWG in a reply to the patient community after the BWG and her move from the WPI.
Does anyone know whether this could have caused a problem to the final results?

 

[Bob]

Thanks for that currer.

The BWG's serology results were negative as well, and I'm not sure if the EDTA would explain those results?

I've watched Judy's Invest in ME DVD now... It was interesting but I didn't notice anything particularly new in it, did you? (Apart from the 2D gell electrophoresis test, which I'm reading about now.)

 

[RustyJ]

I've started this new thread for 'constructive' HGRV discussion, for those of us who are interested in following the research.

Some of us are interested in exploring the possibilities of HGRVs, in a positive way, and I think it would be refreshing if we could discuss what interests us, without having to constantly argue with the (valid) voices that believe that HGRV research is a waste of time.

(I politely ask those members who are not interested in XMRV or HGRVs, or who think that HGRV research is a waste of time, or that XMRV is purely a contaminant, to not use this thread, and to allow those of us who are interested to be free to explore the subject that interests us, without being challenged.)
(so, over to you currer )

Good move Bob. I had been dreaming of a thread where we could talk about HGRVs without having to be defensive.

 

[redo]

Ok Bob, I agree.

It is natural that we are all excited by the rituximab news, however some of us cant give up retroviruses!

They aren't contradictory. I think the most likely way a retrovirus would do harm would be through the immune system. So, when the drug stops the symptoms (cause it makes much of the autoimmunity go away) that's making the lives of the sufferers easier, but the cause (most likely a retrovirus IMO) is still there.

 

[Deatheye]

They aren't contradictory. I think the most likely way a retrovirus would do harm would be through the immune system. So, when the drug stops the symptoms (cause it makes much of the autoimmunity go away) that's making the lives of the sufferers easier, but the cause (most likely a retrovirus IMO) is still there.

As far as I understand it Judy once sad that B Cells ar harboring HGRVs. Killing them also would get rid of the viruses inside them. I guess destroying some of the HGRV bases would be positiv less places form where they could attack.
Any Information if and how the B Cells behaviour gets changed cause of the Infection by HGRVs?

Where does the "EDTA / heparin" statment from Judy come from? And why does the BWG FAQ say that every lab could choose to do the test they want but Judy seems to say the opposite?

"right off the back of the flask"

anyone can explain this?

Also it seems lot of papers refer to vp62 as XMRV. The BWG FAQ states that there is no HGRV. No published virus cloned sequenzed or isolated from humans. So what are all the gene sequenzes in the genbank? Ar they all vp62 even with the variances?

 

[RustyJ]

They aren't contradictory. I think the most likely way a retrovirus would do harm would be through the immune system. So, when the drug stops the symptoms (cause it makes much of the autoimmunity go away) that's making the lives of the sufferers easier, but the cause (most likely a retrovirus IMO) is still there.

Autoimmunity is just a mechanism not etiology, isn't it? Still needs a cause. This is the big gap in the rituximab story so far. So nothing can be ruled out. As currer? said somewhere, sometime, APOBEC3 is in the mix according to the good oncos (do you have this source currer?, so I can add to my wiki?); this seems to implicate a gamma. I would like to explore a little more this connection, if anyone can add to it. I can see the anti HGRVs mob using autoimmunity as a bit of a club to beat down any fresh outbreaks of mice plagues.

 

[RustyJ]

Thanks for that currer.

The BWG's serology results were negative as well, and I'm not sure if the EDTA would explain those results?

I've watched Judy's Invest in ME DVD now... It was interesting but I didn't notice anything particularly new in it, did you? (Apart from the 2D gell electrophoresis test, which I'm reading about now.)

Bob, Mikovits has suggested antibody response is muted or none existent when virus is not in blood. So it would not be unusual to get negatives. This was supported in macaque study. Given that some patients were on treatments would make this more so. The BWG was an extremely small study also.

The lack of antibody response is not unknown in other ARVs, eg HIV (the new neuro strains), and JCRV (particularly so).

As regards Mikovits IiME DVD, I have observed Judy come under attack for hinting at info which has not yet been published, so her lack of new info does not surprise me. Personally, I think this scientist rule is bigotted. It seems much is made of minor infractions against the CLUB, while everyone else is robbing the till.

 

[currer]

This is a repeat of another post of mine on the Ashford 50 study. (info taken from the DVD)

Dr Mikovits said that the blood was collected by independent phlebotomists, the blood aliquoted and sent to three inedpendent labs for testing. The audience laughed when Dr. M. muttered "who want to remain anonymous for fear of being attacked".

They searched for direct RNA in the blood so the blood was delay processed (left to stand) to lyse the cells and tested with nested primers.

The overall positive rate was 65% including positives from antibody and PCR.
http://forums.phoenixrising.me/show...hat-think-this-is-dead...&p=214428#post214428

Post #48 from villagelife contains a shot of the slide.

There are some further details on the DVD I'll include them when I have time.

What can the status of these tests be? If they were not done at the WPI, the VP62 contamination is irrelevant.
So how do we interpret these findings now.?

 

[currer]

Although I agree with you Bob, that there is not much new information available, I think what we need to do is to try to analyse the available evidence more carefuly without being distracted by attacks on Dr Mikovits science.

I dont question her statement that she has more studies which cannot find a publisher.
I want to try to draw together the implications of the evidence available, published and unpublished.

On that point I suppose it is OK to talk about the Ashford 50 study now?
It was published as an abstract inthe first international XMRV conference. (how far away those days seem now!)
http://regist2.virology-education.com/abstractbook/2010_8.pdf

 

[redo]

As far as I understand it Judy once sad that B Cells ar harboring HGRVs. Killing them also would get rid of the viruses inside them. I guess destroying some of the HGRV bases would be positiv less places form where they could attack.
[...]
The BWG FAQ states that there is no HGRV. No published virus cloned sequenzed or isolated from humans. So what are all the gene sequenzes in the genbank? Ar they all vp62 even with the variances?

Yes she said. There's been one in vitro study showing it could reside in the b cells, but that said, it doesn't mean that it has to be that mechanism which makes the rituximab patients better in case it's a retrovirus behind this. Could be through other immune pathways. Perhaps through chaning the immune system actually making it more fit to this particular job (less likely), or through direct positive effects on a harmful immune system overactivated by a retrovirus (most likely).

Could you give a link to the BWG faq? They say they didn't find HGRV, or that there are no HGRV?

 

[Tony Mach]

Please, by all means, investigate Gamma Retro Viruses just don't call them HUMAN Gamma Retro Viruses. There just isn't any evidence to support that XMRV/MLV/variants are involved in any human disease be it ME/CFS or cancer.

********** If you want to only attract the believers and avoid the critics, fine, go ahead. You might feel better that you do something about our disease, but you are not helping the cause.

**********

 

[Jemal]

They aren't contradictory. I think the most likely way a retrovirus would do harm would be through the immune system. So, when the drug stops the symptoms (cause it makes much of the autoimmunity go away) that's making the lives of the sufferers easier, but the cause (most likely a retrovirus IMO) is still there.

Yes, I agree with this, they aren't contradictory (though more research is needed of course).
Anyway, I am just going to keep posting XMRV and gammaretrovirus research.

Also, I think it's impossible to discuss gammaretroviruses at the moment without some background noise. See post above.

 

[redo]

On many occasions, the research director of the WPI stated clearly in many conferences that xmrv cause ME/CFS plus other chronic illnesses including Fibromyalgia, Lupus, Lyme, A typical MS, ALS, Autism etc. without one scintilla of peer reviewed research to back up her claim. It became a fact because she said it and the patients bought line, hook and sinker.

Has she really said that? I know she has said she believes the retrovirus can be the cause behind the various syndromes you mentioned (and said with 'force'). I know it's far from typical for scientists to bring up unpublished work that way, but saying she thinks and saying she knows are two totally different things.

So she needs to find how to overcome this problem with how HGRV is spread. So they make a declarative statement that it is spread by aerosol.

Please give a source for that eco. I haven't heard anything about that aerosol statement.

I find your input and input from those taking the position you are doing both valuable and needed for a healthy debate (although this thread might not be the place to take that debate, since it's really (and very specifically) not meant to be a thread for such discussion, so I guess it'd be best if a moderator moved these off topic posts to another thread).

 

[redo]

The link you posted to the blogspot blog didn't work, but I managed to dig it up (here's a working link).

One private practice shared its associations with Mikovits and the WPI team. This practice started testing its neuroimmune patients and soon found they were treating XMRV positive patients with CFS, Fibromyalgia, Chronic Lyme Disease, Multiple Sclerosis, Parkinsons Disease, ALS, the list goes on. I think it is safe to say this is a private practice for adults, therefore were not seeing the children with autism in this example as we did with the family profiles from Part 1 discussion. Finally, it was noted that XMRV research has concentrated around ME/CFS to date, but larger studies on the presence of XMRV in these other neuroimmune diseases are coming.

While it's highly uncommon for researchers to put forth such connections without published proof, I can't say she's saying that she knows that this is fact, but I rather see it as speculation (you're welcome to tell me differently if I am wrong).

I looked through the 184 comments on "With A Little Help From My Friends" post but couldn't find the aerosol stuff. Could you tell me which keyword to CTRL+F for to find the comment?

I am not trying to pick out 1% of your post, as some sort of dishonest debate tactic. Rather I am genuinely interested to know. I appreciate your perspective Ecoclimber. Although I think using all them adjectives are unnecessary and doesn't raise the level of debate, only the level of conflict.

 

[Deatheye]

Could you give a link to the BWG faq? They say they didn't find HGRV, or that there are no HGRV?

http://www.cfids.org/xmrv/srwg-webinar-oct2011.pdf

10) All the SRWG labs optimized their assays to VP62. VP62 does not
exist in nature and Lombardi et al. is now known to have discovered
HGRVs.
Does your study include HGRV's? Or how do HGRV's relate to XMRV?
As demonstrated in a previous slide, although this study was initiated after
Lombardi et al. as a study of XMRV, as soon as Lo et al. was published the
mission of the study was broadened to include all MLV-like viruses. Thus,
almost all of the assays were designed to perform against MLVs in general
and were optimized and tested as such. As our study has demonstrated
there is no such thing as an independently validated clinically positive
sample against which to test. Currently there is no such thing as human
gammaretroviruses (HGRV). No published virus has been isolated, cloned
or sequenced from a human.

In regards to other oilnesses. I know I somwhere read somehting about a clinic doing testing on different diseases and they found the virus in some ilnesses over 80% of the people. But sadly I don't remember the details. :/ Not even who actually sad that. Anyone knows what I mean? I think it was a neurological clinic?

EDIT: I just noticed redos post. I think it's about that. But I'm sure that somewhere was a statment that actually mentioned a % of positiv findings in some ilnesses.

 

[Bob]

Bob, Mikovits has suggested antibody response is muted or none existent when virus is not in blood. So it would not be unusual to get negatives. This was supported in macaque study. Given that some patients were on treatments would make this more so. The BWG was an extremely small study also.

The lack of antibody response is not unknown in other ARVs, eg HIV (the new neuro strains), and JCRV (particularly so).

Yes, it was a very small sample. But Judy has detected plenty of antibodies before, and published a paper on her findings, so I'm not sure why you are so convinced that we don't have antibodies Rusty?

As regards Mikovits IiME DVD, I have observed Judy come under attack for hinting at info which has not yet been published, so her lack of new info does not surprise me.

I was just asking, in case anyone else has spotted anything in the presentation that I hadn't seen.