Article: XMRV at the NIH State Of Knowledge Workshop (SOK): The Mikovits Coffin Debate

Article: XMRV at the NIH State Of Knowledge Workshop (SOK): The Mikovits Coffin Deba

You can view the page at http://forums.phoenixrising.me/content.php?401-XMRV-at-the-SOK-The-Mikovits-Coffin-Debate-CFS-NIH

 

In case it's any help to anyone...

Alter was very clear that the science will be decided by the Blood Working Group 'panel' and the Lipkin 'panel'. He was also very clear about his position when speaking in public, which was consistently neutral and open minded, indicating that all of the research is strong, including Lo's, Mikovits' and Coffin's.

Here's some of what he said:

...I am stuck here between the diametrically opposed view points of Judy Mikovits and John Coffin, both of whose science I greatly respect. And I don't truthfully know who to cut or what to cut...

http://www.youtube.com/watch?v=hWN3rkbXCm4&feature=player_detailpage#t=26s

...I think that the data for the recombination, and the origin, through the nude mice is very convincing. I have to say that. And what is difficult for me is the next step of how it contaminated the laboratories. You know, you can say that it's in a reagent, it's in a tube, but every laboratory, including the Lo laboratory, uses multiple controls on every run, and they are always negative, and we have looked for mouse genome first by a very very sensitive nested PCR that was a hundred fold more sensitive than the PCR used to detect the polytropic viruses, and did not find any genomic DNA.
Then used your first IAP assay, and then your improved IAP assay, exactly as you gave us the formula, and do not find any contamination.
Now you can never rule out contamination 100%. But it isn't there, and i still don't know why the negative controls in Judy's lab are negative and why on the panels that have been done thus far, she's been able to distinguish samples from patients versus negative control.
...
I'm not denying that there may be contamination but I just wanted to put this into perspective...

http://www.youtube.com/watch?v=M2PEORRhdsw&feature=player_detailpage#t=345s

The fact that contamination can occur, does not mean that it has occurred. There is as yet no direct evidence for contamination in either the Mikovits or Lo laboratories.

http://www.youtube.com/watch?v=hWN3rkbXCm4&feature=player_detailpage#t=412s

 

Sounds like he was moderating between 2 factions, trying to defuse the situation. He definitely was not convinced of any contamination in his or Judy's studies, so the studies stand at present.

Cort, may I ask why you are so against XMRV being the cause of ME/CFS? I have been sick for almost 2 decades now and I have always thought this illness feels like a viral illness that the body cannot rid itself of. I have daily chills. What causes prolonged viral activation? Wouldn't a retrovirus fit?

 

Sounds like he was moderating between 2 factions, trying to defuse the situation. He definitely was not convinced of any contamination in his or Judy's studies, so the studies stand at present.

Cort, may I ask why you are so against XMRV being the cause of ME/CFS? I have been sick for almost 2 decades now and I have always thought this illness feels like a viral illness that the body cannot rid itself of. I have daily chills. What causes prolonged viral activation? Wouldn't a retrovirus fit?

I know you're not asking me(!), but I don't see how you come to the conclusion that Cort is 'against XMRV being the cause of ME/CFS', just because he's giving attention to both sides of the story.

I'm sorry you've been sick for so long -- I've been sick for 14 years now and have had a really rough downturn the past six months so I would like answers as much as anyone.

While a retrovirus might indeed explain prolonged viral activation or overall ME/CFS, a lot of other things that are rarely discussed in the XMRV section of the forums might explain why we stay sick for so long as well.

Things like toxic (and hidden) mold, heavy metals, pesticides, fungicides and other chemical exposures that can screw up not only immune function but specifically thyroid, adrenal, hypothalamus and pituitary function, and especially liver detoxification (including methylation). Mercury alone can completely mess up so many parts of the body if one is susceptible.

Just think of all the chemicals and toxins that have increased in our lives in the last 50 years...and all the chemicals added to foods, all the plastics that leach out of bottles and microwave containers, etc., etc. We're surrounded by petroleum products! Do these things actually help rebuild our bodies, restore us to health, or could they be getting in the way of healing?

On and on and on...so many other possibilities.

But again, it could be a retrovirus too. If that's the case, we unfortunately probably won't know for at least 2-3 more years.

 

I have missed most of this discussion owing to other things going on in my life -(yes I am well enough now to have another life!)

Here's my twopennyworth. I think it possible that as Cort is known to run this forum, (to which many repair, including, to our credit, some researchers,) I think it possible that WHEN TALKING TO THE PRESS interviewees are getting increasingly careful of what they say.
They know whatever they tell Cort will be written up and discussed at great length in public here. What is more if they are researchers, their colleagues will also be able to see here what they have said.
This forum has become a major source of XMRV information for many people. Anyone interviewed by Cort will know that what they say will be all round the internet in no time and publicised, analysed and reassessed obsessively by us. They know some of us are not slow with the abuse either, if we dont like what they say! They may find this prospect embarrassing!

I think that we need to bear this in mind. Interviewees will be very careful of what they say if it goes on this forum and may edit or colour their opinion when they give it to Cort as they may wish to quiet what they percieve as our troublesome interest in their science or our rushing to embarrassing or extreme conclusions.

I am sure there is a wish to quiet down the interest in XMRV among our group of patients. This may lead to some assessments of the research being rather negative, especially when talking to Cort.

Not that I agree with them, of course. I enjoy these discussions and we have more right to them than anybody as we are the ones who pay by suffering from this illness.
But remember, that many medics are unused to the power the internet gives to the public to become involved in matters that were previously only the concern of an elite.

It is quite possible Cort was told all this as he remembers it. But it may not be the whole truth, all the same.


(I am rather proud of this analysis as you will note it has the advantage of leaving both groups of disputants in the right, and only accuses Dr Alter of diplomacy.)

 

Yes please do Asleep - your posts on this thread have been awesome!

I second that!

 

What scares researchers away is not the patient community, but rather the very UGLY POLITICS of this disease.
Have a look for yourself, if you dare to be so brave.

[video=youtube;KhB-701-BMU]http://www.youtube.com/watch?v=KhB-701-BMU[/video]

A chilling summary. And you're right Gracenote.

 

A chilling summary. And you're right Gracenote.

PS... I'm Dreambirdie. But yes, REALLY CHILLING! So much so that it froze my jaw open.

 

While a retrovirus might indeed explain prolonged viral activation or overall ME/CFS, a lot of other things that are rarely discussed in the XMRV section of the forums might explain why we stay sick for so long as well.

Things like toxic (and hidden) mold, heavy metals, pesticides, fungicides and other chemical exposures that can screw up not only immune function but specifically thyroid, adrenal, hypothalamus and pituitary function, and especially liver detoxification (including methylation). Mercury alone can completely mess up so many parts of the body if one is susceptible.

Just think of all the chemicals and toxins that have increased in our lives in the last 50 years...and all the chemicals added to foods, all the plastics that leach out of bottles and microwave containers, etc., etc. We're surrounded by petroleum products! Do these things actually help rebuild our bodies, restore us to health, or could they be getting in the way of healing?

On and on and on...so many other possibilities.

But again, it could be a retrovirus too. If that's the case, we unfortunately probably won't know for at least 2-3 more years.

Good points, Dan. Having severe MCS in addition to CFS, I am total agreement of the need to address toxicity issues and liver detoxification.

Personally, I am on both sides of the fence with all this XMRV hoopla. ON the one hand, I really appreciate the enormous attention that XMRV is giving to CFS... attention we would NEVER get otherwise. XMRV has put us on the map, and given all these official government agencies at least a little food for thought, which will hopefully further our cause to be taken seriously and get us more funding for continuing research... (yes, a girl can dream).

ON the other hand, because of my MCS I will never be able (or willing) to take toxic drugs like ARV's... and for that reason I don't have all my eggs in the XMRV basket. I am open to finding what works for people like me, and that may be much more along the lines of alternative medicine and TCM...

There's a lot we don't know yet, but it's good to support ALL the ways we can improve our health and better our lives.

 

PS... I'm Dreambirdie. But yes, REALLY CHILLING! So much so that it froze my jaw open.

Sorry Dreambirdie! I think I got confused with your similar avatar colours???

 

Haven't been able to post follow-up on the workshop as I would have liked, but there's one little aspect that caught my eye that I'd like to share, from Dr Alter's review of XMRV. His slide titled "Contamination: Out Damn Spot" raised a laugh, and prompted me to look up the full quote - which I imagine he may have considered when presenting this slide...

Out, damned spot; out, I say. One, two,why, then tis time to dot. Hell is murky. Fie, my lord, fie, a soldier and afeard? What need we fear who knows it when none can call our power to account? Yet who would have thought the old man to have had so much blood in him?

Some interesting prose in there! "What need we fear who knows it, when none can call our power to account?" Intriguing to speculate as to whether Dr Alter had any of this in mind. Even on the more superficial reading, the image of Lady Macbeth trying to rub out in imaginary spot of blood is a suggestive one - and one which could probably be read from either side of the XMRV argument...

Dr Alter's other analogy, the reference to King Solomon, is interesting to contemplate as well. The concept of letting go of claim to ownership, out of genuine love for the baby, is a suggestive one. This aspect was also hinted at in Dr Coffin's comments, when he wished to put an end to XMRV but accepted that there may well be other similar retroviruses implicated in CFS. Is it possible that Dr Alter was somehow trying to suggest that letting go of the insistence on the specific XMRV label of what the WPI found - and letting go of ownership of the research itself - might be a way to save the research itself? If so, then I wouldn't advise that course of action myself, but the controversy over XMRV has often seemed to be about one of ownership as much as anything, so the analogy seems suggestive.

That's all a rather 'literary' kind of way of looking at things, but I found these two references in Dr Alter's talk held up quite well as analogies, so even though these are pretty tenuous and unscientific ideas, I thought they might be of interest to ponder. I rather like the idea that Dr Alter was trying to send some kind of coded messages to the two parties with these two references, even though it's highly unlikely to be true.

 

Sounds like he was moderating between 2 factions, trying to defuse the situation. He definitely was not convinced of any contamination in his or Judy's studies, so the studies stand at present.

Cort, may I ask why you are so against XMRV being the cause of ME/CFS? I have been sick for almost 2 decades now and I have always thought this illness feels like a viral illness that the body cannot rid itself of. I have daily chills. What causes prolonged viral activation? Wouldn't a retrovirus fit?

I think a retrovirus would fit absolutely. If you were to ask me to guess on where it will everything will end I would lean towards XMRV not working unfortunately. This viewpoint, from a laymen note, is from the many negative studies and the recent finding suggesting that XMRV was acccidentally created in a lab. I think XMRV has a upward hill to climb right now.

On the other hand I was very taken at the Workshop by how confident both Dr. Mikovits and Annette Whittemore were. Everything is riding on XMRV for them and I can only think that if I was in there shoes I would have checked and rechecked everything and I would be doing monthly blinded tests with patients and controls to see if everything was kosher. I can envision hundreds of control samples that were negative sitting there - and thinking if I had hundreds of negative control samples and a 1,000 or so positive CFS samples, well I would be quite confident too.

So I can definitely see a way out of this. I can tell you one thing, though, if XMRV works out after all the PCR and antibody tests that have been done and have turned out negative...I think its going to send a shockwave through the PCR community. Basically I think its going to have show some flaw that they had never thought of before. If you read the Satterfield interview you know where that community of researchers is coming from...

I really, really hope XMRV works out - for my sake and for yours and for ours. If it does I think it changes everything in CFS and it will lift all boats whether you have XMRV or not. It would be a great boon for us.

 

I have missed most of this discussion owing to other things going on in my life -(yes I am well enough now to have another life!)

Here's my twopennyworth. I think it possible that as Cort is known to run this forum, (to which many repair, including, to our credit, some researchers,) I think it possible that WHEN TALKING TO THE PRESS interviewees are getting increasingly careful of what they say.
They know whatever they tell Cort will be written up and discussed at great length in public here. What is more if they are researchers, their colleagues will also be able to see here what they have said.
This forum has become a major source of XMRV information for many people. Anyone interviewed by Cort will know that what they say will be all round the internet in no time and publicised, analysed and reassessed obsessively by us. They know some of us are not slow with the abuse either, if we dont like what they say! They may find this prospect embarrassing!

I think that we need to bear this in mind. Interviewees will be very careful of what they say if it goes on this forum and may edit or colour their opinion when they give it to Cort as they may wish to quiet what they percieve as our troublesome interest in their science or our rushing to embarrassing or extreme conclusions.

I am sure there is a wish to quiet down the interest in XMRV among our group of patients. This may lead to some assessments of the research being rather negative, especially when talking to Cort.

Not that I agree with them, of course. I enjoy these discussions and we have more right to them than anybody as we are the ones who pay by suffering from this illness.
But remember, that many medics are unused to the power the internet gives to the public to become involved in matters that were previously only the concern of an elite.

It is quite possible Cort was told all this as he remembers it. But it may not be the whole truth, all the same.


(I am rather proud of this analysis as you will note it has the advantage of leaving both groups of disputants in the right, and only accuses Dr Alter of diplomacy.)

I like it as well

 

Why all the negative PCRs for XMRV?

Cort wrote:
I think its going to send a shockwave through the PCR community. Basically I think its going to have show some flaw that they had never thought of before. If you read the Satterfield interview you know where that community of researchers is coming from...

Cort, you may recall that researchers used to say they couldn't find mycoplasma using PCR. Roche held the patent on how to find mycoplasma, and other labs had to pay them for the procedure. It looks like Mikovits knows how to find XMRV, at least one strain of it, but the others looking for it are not using her PCR method. I will not speculate as to why. But didn't both Mikovits and Singh take out a patent? Also Satterfield charged patients money to run a test for XMRV that in fact had never found XMRV period.

Correct me, if I have misunderstood any of this. My conclusion for now is that Mikovits and Lo know how to find XMRV and have found it in CFS patients. The rest are not willing to exactly copy their PCR method, maybe for monetary reasons, so their results are negative. Money makes the world go round. I can see Liza dancing now.

Paula Carnes