The Race to Retract Lombardi 2009...

[JT1024]

Is it possible to name even one lab that has the ability to consistently run an assay for the accurate detection of human gamma retroviruses?

And if not, on what basis is the claim that HGRVs exist being made?

I believe Drs Mikovits, Lo, and Ruscetti all have the ability to accurately detect HGRV's. However, some researchers (and people like you), will go to any length to discredit these findings. Time will tell, won't it?

Perhaps we'll all be dead but again, IMHO, this is not going away.

There is proof that zoonotic infections occur (http://vetmedicine.about.com/cs/zoonotic/a/zoonotic.htm) ,

that replication competent retroviruses have been created in the past (http://www.springerprotocols.com/Abstract/doi/10.1007/978-1-59745-409-4_17),

and it is an issue of great concern to manufacturers http://www.millipore.com/publicatio...69e1fe3852571ea00763c1e/$FILE/SDS1705ENEU.pdf

and the government (http://www.fda.gov/ohrms/dockets/dockets/05d0310/05d-0310-bkg0001-02-Reference-01-FDA-vol2.pdf).


Sorry for the long links but those unfamiliar with the existence of documentation to support my claims can read for themselves. On one of the links, you need to scroll down since the first page appears blank.

Have fun reading!

 

[RustyJ]

Is it possible to name even one lab that has the ability to consistently run an assay for the accurate detection of human gamma retroviruses?

And if not, on what basis is the claim that HGRVs exist being made?

Sam, because a lab cannot consistently [arguably] run an assay does not mean HGRVs don't exist. Again go into a dark room with a torch, you won't see anything unless you turn it on. Doesn't mean whatever you can't see is not there, which is what some would like us to believe.

 

[Lee]

rustyJ, your analogy is off.

What we have now is equivalent to someone going into the darkroom and saying, there's an enlarger in here, I saw it before, let me show you. Then turning on the lights and there's no enlarger to be seen. Your argument is that if you turn the lights back off, it's legitimate to say 'there *could* be an enlarger in here, its just that no one can see it.'

JM could not detect her virus, when samples were blind. She can make all the excuses she wants, the simple fact is they gave her blind samples, and she could not reproduce what she published.

Alter and Lo, in the BWG, used the same nested-PCR they had published, and could not reproduce their results.

No one else has detected virus at all, much less virus associated with ME/CFS.

And the XMLV association with prostate cancer turns out to be contamination as well.

At this point, there simply is no evidence (other then JM et al's proclamations, unsupported by data - thus, not evidence) no evidence that there is a gammaretrovirus infecting humans at all, much less one associated with disease.

 

[RustyJ]

rustyJ, your analogy is off.

What we have now is equivalent to someone going into the darkroom and saying, there's an enlarger in here, I saw it before, let me show you. Then turning on the lights and there's no enlarger to be seen. Your argument is that if you turn the lights back off, it's legitimate to say 'there *could* be an enlarger in here, its just that no one can see it.'

JM could not detect her virus, when samples were blind. She can make all the excuses she wants, the simple fact is they gave her blind samples, and she could not reproduce what she published.

Alter and Lo, in the BWG, used the same nested-PCR they had published, and could not reproduce their results.

No one else has detected virus at all, much less virus associated with ME/CFS.

And the XMLV association with prostate cancer turns out to be contamination as well.

At this point, there simply is no evidence (other then JM et al's proclamations, unsupported by data - thus, not evidence) no evidence that there is a gammaretrovirus infecting humans at all, much less one associated with disease.

Perhaps you could tell Ruscetti that.

 

[Angela Kennedy]

Perhaps you could tell Ruscetti that.

For that I would like to be a fly on the wall.

 

[Bob]

No one else has detected virus at all...

Perhaps you could tell Ruscetti that.

And perhaps tell the following researchers the same thing:

Sanggu Kim, Namshin Kim, Beihua Dong, David Boren, Serena A. Lee, Jaydip Das Gupta, Christina Gaughan, Eric A. Klein, Christopher Lee, Robert H. Silverman, and Samson A. Chow, Emily C. Knouf, Michael J. Metzger, Patrick S. Mitchell, Jason D. Arroyo, John R. Chevillet, Muneesh Tewari, and A. Dusty Miller, Federico Andrea Santoni, Oliver Hartley, Jeremy Luban, A. L. McCormick, PhD, R. H. Brown Jr, MD, DPhil, M. E. Cudkowicz, MD, MSc, A. Al-Chalabi, PhD, FRCP and J. A. Garson, MD, PhD, Kyle Summers, and Bernard Crespi, Jason J. Rodriguez, and Stephen P. Goff, Harriet C. T. Groom, Melvyn W. Yap, Rui Pedro Galo, Stuart J. D. Neil, and Kate N. Bishop, Tobias Paprotka, Narasimhan J. Venkatachari, Chawaree Chaipan, Ryan Burdick, Krista A. Delviks-Frankenberry, Wei-Shau Hu, and Vinay K. Pathak, John E. Gorzynski, Daria Drobysheva, Leda Bassit, Raymond F. Schinazi, Kristin Stieler, Nicole Fischer, Yuhe Yan, Qingping Liu, Kurt Wollenberg, Carrie Martin, Alicia Buckler-White, and Christine A. Kozak, Hongwei Jia, HaoQiang Zheng, Shaohua Tang, Walid Heneine, Urisman A, Molinaro RJ, Fischer N, Plummer SJ, Casey G, Klein EA, Malathi K, Magi-Galluzzi C, Tubbs RR, Ganem D, Silverman RH, DeRisi JL, Robert Schlaberga, Daniel J. Choeb, Kristy R. Browna, Harshwardhan M. Thakerb, Arnold RS, Makarova NV, Osunkoya AO, Suppiah S, Scott TA, Johnson NA, Bhosle SM, Liotta D, Hunter E, Marshall FF, Ly H, Molinaro RJ, Danielson BP, Ayala GE, Kimata JT, Tobias Paprotka, Narasimhan J. Venkatachari, Chawaree Chaipan, Ryan Burdick, Krista A. Delviks-Frankenberry, Wei-Shau Hu, and Vinay K.

http://forums.phoenixrising.me/showthread.php?12518-List-of-XMRV-Research-Studies

 

[currer]

I would be interested to know, Lee, what your opinions are about ME.

Do you think likely to be a psychosomatic disorder, or a biophysical one? Why?
In your opinion what are the most important symptoms? Why?

And why do you think it presents in the way it does? Why does this disorder become chronic?

What factors do you believe perpetuate this disorder, and why do we see this specific symptom complex?
Are there associated diseases? Why?

What do you think accounts for the varied recovery rates we see? And are there any true "recoveries"?

Why has it become so much more prevalent in the last couple of generations?
What do you feel about the numbers of children with this disorder?
Is it more common in certain families? why?

What treatments do you think most effective? Why?
Do you think we have adequate treatments already, both in effectiveness and range?

Do you personally know anyone with ME? How do you feel about their illness, and how has your personal knowledge of them affected your response to this disorder?

 

[Jemal]

Nice list Bob

Anyway, the NIH just awarded almost $800.000 to another XMRV/gammaretrovirus study, that looks into the role XMRV/gammaretroviruses might have in the spreading of HIV. Obviously it's not just Judy Mikovits that believes gammaretroviruses might be causing problems.

 

[currer]

Hi Sam,

Despite the problems of the BWG, (an I acknowledge that the results were disappointing for us all,) there is evidence from serology, immunological studies and Dr Snydermans cancer study, including his antiretroviral treatment, to show that this hypothesis has value, ties in with other research findings from other perspectives, and must be followed through.

There are many possible reasons for the failure of the BWG, including the use of EDTA instead of heparin as an anticoagulant for blood culture. In her IiME talk, prior to the unblinding of the BWG results, Dr Mikovits said they had worked hard to co-operate with the BWG but the use of EDTA reduced the accuracy of their blood culture tests to 10%
Whether or not this is adequate to explain the BWG failure is not, as far as I am concerned, the point at all. The point is that this could be a medical breakthrough which recasts our previous understanding of illnesses where the cause is not known.

I do not understand the call, (and from patients, too,) for a premature end to this exciting and revolutionary line of research and for the highly unpleasant criticism of Dr Mikovits, who has done more to stimulate research in this area than anyone in the last fifty years.

At this stage, more is going to be unknown, than known.

It is true that the hypothesis of retroviral infection in the population is threatening to biomedical industry and government health agencies. But we need to know the truth, because this problem will not go away if it is denied.

Much still remains to be understood. If this hypothesis is correct, it could revolutionise treatment, not just for ME, but for cancers and some other little understood "autoimmune" disorders as well.

Isn't this an outcome worth being a little patient for?

 

[Lee]

@ currer:

I don't have a clue what causes this disease. Neither does anyone else. Wanting an explanation is not enough to conclude that its a retrovirus. Yes, I have a very good friend who has ME, and I've watched it devastate her life for about a decade now. The defining symptom for her, and in general, is exercise/activity intolerance - lack of recovery from activity, which seems eerily similar to what overtraining felt like (albeit at a differing activity level) back when I rode bicycles.

The rest of your questions either don't have answers or are insulting attempts to try to show that I don't know what I'm talking about, or perhaps am 'an enemy' to people with ME. Knock it off.

 

[Nielk]

Sam, because a lab cannot consistently [arguably] run an assay does not mean HGRVs don't exist. Again go into a dark room with a torch, you won't see anything unless you turn it on. Doesn't mean whatever you can't see is not there, which is what some would like us to believe.

Justy,

If you go with this reasoning, anything is possible. Maybe, cfs should be tied with cancer cells. Just because they haven't found it in lab studies doesn't mean it's not there. If they would know how to find it (turn on the switch) then they would see it. Do you see how that logic doesn't hold up?

 

[currer]

Hi Lee,

Here is another question worth thinking about.

Why does no-one have any idea what causes this disease?

 

[Firestormm]

There are plenty of possible answers to that question Currer and none of them include retroviruses I am afraid. HGRVs do not exist and not as an association with or in CFS and/or ME patients.

Until Mikovits or anyone else can publish something suggesting that they do and then allow their experiments to be subjected to scrutiny, you are speculating (again).

Did you listen/watch/read the BWG Webinair conference out of interest? I posted another thread on it if you want to - it did seem very thorough, and the ones who let it down were Mikovits, Ruscetti and Lo, Alter (by 'let it down' I mean in terms of being able to prove that their previous 'association' claims and results were reproducible).

Part of me is struggling to understand why those who do comment are not relieved to find they are not carrying such a retrovirus and can now consider doing the kind of things that they were being told not to engage in by Mikovits and WPI.

But then of course it becomes clear that 'proof' is in the eye of the beholder I guess as is interpretation. And even if Lombardi et al is retracted in full and Lipkin draws a blank (assuming he goes ahead) - it will never be enough to disprove a changing theory will it?

And by that I mean, there will always be the possibility that a retrovirus is involved. My fear is that even if some more effective treatment does come on stream in the near future - for those who are unequivocal about a retroviral cause - they will refrain from trying any treatment that does not involve some sort of ARV and will influence other patients also.

Edit:

Sorry have been expanding on my thoughts after reading all the posts over the past few days.

 

[Firestormm]

Nice list Bob

Anyway, the NIH just awarded almost $800.000 to another XMRV/gammaretrovirus study, that looks into the role XMRV/gammaretroviruses might have in the spreading of HIV. Obviously it's not just Judy Mikovits that believes gammaretroviruses might be causing problems.

Could you post a link to the details please Jemal I am interested/intrigued. Thanks.

 

[Bob]

@ currer:
...
The rest of your questions either don't have answers or are insulting attempts to try to show that I don't know what I'm talking about, or perhaps am 'an enemy' to people with ME. Knock it off.

I can't speak for currer, but I think the questions that currer asked were designed to make you aware of what a complex disease this is, and what a complex history it has, in case you weren't already aware. For many ME patients, it's not just a case of "is XMRV the cause of ME: Yes or No?" (and that's the end of the discussion), but we are interested in exploring the possibilities, and some of us think that retroviruses could be a good fit to the disease. Not all of us do though, and some think that it couldn't possibly be a viral cause. Even if XMRV is as dead as you believe, some of us are still interested in wider retrovirus research, and in seeing where it leads. There has been quite a substantial amount of research carried out on XMRV, as I demonstrated with my list of researchers, and the research is ongoing. Whether there are going to be any answers for ME patients in this line of research, and whether contamination is the sole reason for all the positive ME and prostate cancer studies to date, I don't know, but I am still interested in the research, along with all the other interesting biomedical research that is being carried out at the moment, as highlighted at the Ottowa conference.

 

[Bob]

Could you post a link to the details please Jemal I am interested/intrigued. Thanks.

http://phoenixrising.me/forums/show...typing-with-other-viruses-in-HIV-transmission

 

[currer]

There are plenty of possible answers to that question Currer and none of them include retroviruses I am afraid. HGRVs do not exist.

Not until Mikovits and anyone else can publish something suggesting that they do and then allow their experiments to be subjected to scrutiny.

No Firestormm,

The correct answer is -

"No-one has any idea what causes ME because there has been no research looking into the biomedical basis of the illness."

That is why it is such a shame that patients themselves are so ready to comply with calls to criticise researchers and to prematurely shut down promising new research.

We are all patients here. I doubt if many are also researchers. But many laypeople seem to assume that science can come up with quick and easy responses to truly difficult questions in a short time.

The actual truth is "No-one knows yet."
There were many criticisms of the BWG, one being that it introduced too many variables before it had resolved the problems left over from phase 2.

As someone who has been ill for thirty years,- that is my entire adult life, I want to see proper in depth research done on the biomedical causes of ME.

A retroviral hypothesis fits with other medical hypotheses - they are not mutually exclusive. But it is important that they are fully investigated.

Yes, retroviruses are a political hot potato, because there is the problem of explaining transfer into the population of animal retroviruses. But we need to answer the true cause of this (and possibly other ) illness, not content ourselves with just the proximate cause.

Treating EBV, HHV6 or other infections, will not be a true answer to the problem, even if people get better, if retroviral infection underlies much of the change in disease pattern that we have seen in the last fifty years.
This change in disease pattern includes the unexplained rise in ME cases, but not only ME.

There has been an unexplained growth in lymphomas which has mystified oncologists, as well as a rise in auto-immune disorders and some cancers.

There are answers to these questions if we look for them. And it is vital that they are properly answered, because if there is retroviral infection in the population it is a serious public health threat.

Judy Mikovits retroviral hypothesis engages with these real challenges, which go far beyond the issues surrounding just our illness, ME.

That's why I am not relieved to "find out that I am not carrying a retrovirus"
My primary interest is not in that question. There are much more challenging and more interesting questions to ask now, and I want to see the research go ahead (without political interference) that is capable of supplying those answers.

 

[Firestormm]

Hi Currer,

True but also what Bob said above, plus many many other 'boring' reasons.

Hi Bob,

Thanks for the link. I have been subject to internet blackout these past few days, and am catching up.

 

[Angela Kennedy]

No Firestormm,

The correct answer is -

"No-one has any idea what causes ME because there has been no research looking into the biomedical basis of the illness."

That is why it is such a shame that patients themselves are so ready to comply with calls to criticise researchers and to prematurely shut down promising new research.

I quite agree currer. My only qualification is that there has been a lot of research finding biomedical abnormalities in ME/CFS, but they traditionally get 'cut off' from funding, further research etc. So most research finding biomedical abnormalities gets 'shut down' sharpish. This attempt to shut Mikovits down is more intense in its nature. There's something of a desperation to shut down this research, it appears.

This should be ringing alarm bells for the community. It's following a pattern of shutting down biomedical research into Me/CFS - but it's more intense.

 

[Esther12]

Hi Lee,

Here is another question worth thinking about.

Why does no-one have any idea what causes this disease?

The more I look in to different medical things, the more I realise how little we understand of most medical conditions - especially any that involve fatigue. Cancer, MS, connective tissue problems, depression, etc, etc - all lead to fatigue, but we don't have that good an understanding as to the exact mechanisms for it.

Lumping together everyone suffering from disabling unexplained fatigue was never going to lead to an easy explanation!

re the quizzing of Lee - I understand it, because lots of people can treat those with CFS like shit, or get caught up in some of the prejudices that seem to float around the condition... but lots of people don't, and while they know little of CFS, can be quite fair and understanding about it. A good way of pissing them off would be to demand answers to a load of unknowable questions before you're willing to listen to what they have to say. I think that us CFS patients have often had so many bad experiences related to CFS in the past, that it can make us incredibly prickly about things - in a way that can end up turning people against us.

I'm always keen to give people the benefit of the doubt and see how it goes... although it does quite often seem to go wrong with CFS, so I'm not saying this is definitely a good idea.