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Lipkin presenting at WPI

toddm1960

Senior Member
Messages
155
Location
Rochester, New York
Great links Jemal, I wasn't fond of Lipkin after some remarks came out a while ago this only adds fuel to the fire. In these corporate states of america the NCI doesn't work for the people, it's all about money. The lawsuits could run into the trillions.....oh I forgot they are trying to take away the peoples rights to have a class action lawsuits. This again is right out the playbook on how to kill virus discovery, it worked on Defreitas, it worked on SV40 and it's playing out on Mikovits
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I would have thought that all Lipkin has to do is to draw the blood, freeze it, code it and distribute it.

So unless he is part of some government conspiracy to destroy the XMRV viruses before they can be detected, then I think we just have to sit and watch this one play out, however frustrating that is for us. If there was a conspiracy, then we couldn't do anything about it anyway.

In the mean time, there might be some other positive XMRV/CFS studies published.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Well, there's some reason for concern. Read this:

http://www.theatlantic.com/past/docs/issues/2000/02/002bookchin3.htm
http://www.cancer.gov/cancertopics/factsheet/Risk/sv40

It concerns a virus called SV40 that got into humans because of polio vaccinations. Although the first article is from 2000, there's a lot of stuff in there that I recognize from the current XMRV standoff.

I was rather positive about the Lipkin study, but now I am having some real concerns.

(Found these links on the ProHealth website)

I've always thought it was interesting that the mass immunisation program for polio was rolled out in 1955, and that's when the Royal Free outbreak occurred.
ME used to be described as a polio-like illness, and it was suggested that maybe ME became more prevalent after the polio vaccine program because the polio vaccine only protected against the distinct polio enterovirus. Maybe other enteroviruses flourished after the polio vaccine was introduced, which cause ME.
But who knows, maybe there have been retroviral contaminants in vaccines that have caused certain ME outbreaks?
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
I would have thought that all Lipkin has to do is to draw the blood, freeze it, code it and distribute it.

So unless he is part of some government conspiracy to destroy the XMRV viruses before they can be detected, then I think we just have a sit and watch this one play out, however frustrating that is for us. If there was a conspiracy, then we couldn't do anything about it anyway.

In the mean time, there might be some other positive XMRV/CFS studies published.
What i think we could do (those of us who have these contacts, i don't have them) is to talk to the Mikovits and Lo labs about the study design and possible concerns. And if they think those concerns are justified and there are risks, try to figure out what could be done to neutralize these risks.

With the necessary support from patient groups (big enough number of people), i guess we should be able to have an influence on the study design, but the clock is ticking.
I'm not saying there have to be changes and i'm not able to judge a study design, as i've said before i just hope the Mikovits and Lo labs have thought well about everything.
 

Jemal

Senior Member
Messages
1,031
The first link went to page 3 of the article. I corrected it in my original post and here is the correct link again:

http://www.theatlantic.com/past/docs/issues/2000/02/002bookchin.htm

Anyway, I am not a big conspiracy theorist. However, I do think the Lipkin study could turn out to be a flawed study (for whatever reason). There's a lot riding on it I it would be unfortunate if it would mean the end to most of the XMRV research. Apparently the NCI organised a Lipkin like study for the SV40 study... with every lab doing their own thing. It didn't turn out too great.

I think SV40 also tells us that even though there are many more positive studies than negative (as was the case with SV40) it doesn't matter if the studies are not embraced by powerful institutions like the NCI. As the NCI seems done with XMRV at the moment, I am not too pleased about that.

I have no information that tells me the Lipkin study is flawed by the way. I am just saying I am having some concerns now... sometimes ignorance is bliss.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
I have no information that tells me the Lipkin study is flawed by the way. I am just saying I am having some concerns now... sometimes ignorance is bliss.
For me, it will not be over as long as credible people are behind XMRV and their arguments make sense. But i'm pretty sure that the possible situation that the Lipkin/BWG/Maldarelli studies are negative, while we still have reasons to "believe" in XMRV is not where we want to get. It would probably be a lot of work to turn things around from there.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Of course you are entitled to your opinion, but i don't think in something as critical as this not having concerns or being confident is enough. A pilot will also walk around the plane and check everything and not just be confident in the mechanics or the manufacturer. The people in the Mikovits and Lo labs certainly are very experienced, but i hope they are aware of the potential risks and get heard enough to be able to make sure things go right.

This is a great analogy. Humans are fallible and the person best positioned and motivated to spot a fatal mistake is often the person who will be a fatality if there is one.

I think it's unlikely that Lipkin, Coffin, Singh are part of some anti-ME science conspiracy in the way that the usual suspects are. But I am concerned that they have been unduly influenced by others who are: Wessely thru McClure and perhaps Robin Weiss and by Fauci, Unger and other malfeasors at CDC and NIH.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I've always thought it was interesting that the mass immunisation program for polio was rolled out in 1955, and that's when the Royal Free outbreak occurred.
ME used to be described as a polio-like illness, and it was suggested that maybe ME became more prevalent after the polio vaccine program because the polio vaccine only protected against the distinct polio enterovirus. Maybe other enteroviruses flourished after the polio vaccine was introduced, which cause ME.

Interesting. Hadn't thought of that. Sounds plausible to this layperson.

But who knows, maybe there have been retroviral contaminants in vaccines that have caused certain ME outbreaks?
 
Messages
13,774
If the study comes out negative, then I think the onus would be Ruscetti, Alter, Mikovits, to present some pretty compelling new evidence before they could say the Lipkin study was flawed. They've been involved in designing it, it's a pretty simple thing to test (what % of CFS samples come up positive, what % of healthy controls)... aside from some extraordinary conspiracy (and I really don't think it's in the interests of those in power to allow a retrovirus to spread unchecked through their populations!), I don't see how it could go wrong.
 

Jemal

Senior Member
Messages
1,031
If the study comes out negative, then I think the onus would be Ruscetti, Alter, Mikovits, to present some pretty compelling new evidence before they could say the Lipkin study was flawed. They've been involved in designing it, it's a pretty simple thing to test (what % of CFS samples come up positive, what % of healthy controls)... aside from some extraordinary conspiracy (and I really don't think it's in the interests of those in power to allow a retrovirus to spread unchecked through their populations!), I don't see how it could go wrong.

Well, if WPI detects XMRV, FDA detects MLV's and CDC detects nothing... which is a possibility, because all laboratories can use their own methods, I am not sure the Lipkin study will resolve the controversy (which the study should be designed to do!). I know Lipkin is going to count every positive as a positive, so not all laboratories have to agree a sample contains a virus, but I have no idea what the impact and final conclusion is then going to be. I can already see a lot of the scientists screaming contamination again... I know the reagants will be checked, but there are other possible sources of contamination as well.

Now, if the WPI, FDA and CDC are all suddenly detecting XMRV/MLV's in the same samples, we will have another story. But somehow I don't think we will see a lot of change. Meaning the CDC will probably still detect nothing... but I hope they give me a pleasant surprise.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Well, if WPI detects XMRV, FDA detects MLV's and CDC detects nothing... which is a possibility, because all laboratories can use their own methods, I am not sure the Lipkin study will resolve the controversy (which the study should be designed to do!). I know Lipkin is going to count every positive as a positive, so not all laboratories have to agree a sample contains a virus, but I have no idea what the impact and final conclusion is then going to be. I can already see a lot of the scientists screaming contamination again... I know the reagants will be checked, but there are other possible sources of contamination as well.
I don't think this would be too much of a problem, since the samples are blinded. So it would be proof that at least "something" is in there. And since all the blood was collected at the same time in the same way, by a party other than the labs doing the testing, it would be more or less clear that that "something" is inside the subjects and not some sort of contamination. Or am i missing something?
 
Messages
13,774
I don't think this would be too much of a problem, since the samples are blinded. So it would be proof that at least "something" is in there.

Right. Regardless of the nature of the results, if dramatically more CFS samples were being classed as positive by any of the labs involved, there will be extensive work on finding out how/why.
 

Jemal

Senior Member
Messages
1,031
I don't think this would be too much of a problem, since the samples are blinded. So it would be proof that at least "something" is in there.

The WPI is finding something as well right now... I am not sure even with Lipkin's name on it, the contaminists will believe there is "something" there. They could claim the WPI is contaminating the samples, just by having them in their lab or using their specific methods? And as long as nobody replicates their methods, we are still at this standoff.

But maybe I am looking too negatively at this. We'll see I guess and I hope you are right.
 
Messages
13,774
I think that the independent blinding will deal with concerns about contamination. So long as there's any possible difference in the way CFS and control samples are handled by the WPI, higher positive rates for CFs samples can be explained in this way. This study removes that concern.
 

Jemal

Senior Member
Messages
1,031
I think that the independent blinding will deal with concerns about contamination. So long as there's any possible difference in the way CFS and control samples are handled by the WPI, higher positive rates for CFs samples can be explained in this way. This study removes that concern.

Thanks, that does makes some sense.

Well, we still have to see how it turns out. How the study is received depends on its results as well.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
If only they would stop the "chronic fatigue" thing... CFS would already be bad enough. I really think that in any occasion where somebody uses the term CF, we should correct them. Not in an annoying way, but i think we have a right that they use the correct name and don't say something that's just not correct and misleading. Annette Whittemore should tell Dr. Lipkin.

I liked that it seems as if Lipkin gets along well with Annette Whittemore and Frank Ruscetti. But he also said he doesn't believe it's one agent behind all cases of ME/CFS.