Article: CAA Talks With the Experts on XMRV

You can view the page at http://www.forums.aboutmecfs.org/content.php?219-CAA-Talks-With-the-Experts-on-XMRV

 

In fact, Dr. Mikovits believes that a swarm is necessary for some of these viruses to survive - that they simply don’t ‘live alone’ - and, indeed, this is what they have find in CFS patients.

Now that is an interesting possibility.

 

Indeed it is...I don't know why she said that but it is most intriguing. Most people who test positive do harbor several of the variants or viruses or whatever you want to call them.

 

I haven't yet seen any discussion of whether that's significantly different from the situation with HIV, which similarly mutates so fast that every HIV positive patient has a "swarm" of different strains.

My scientist BIL had a good line about viruses and how crazily fast they mutate: "Basically, anyone who studies viruses REALLY believes in evolution."

 

I haven't yet seen any discussion of whether that's significantly different from the situation with HIV, which similarly mutates so fast that every HIV positive patient has a "swarm" of different strains.

My scientist BIL had a good line about viruses and how crazily fast they mutate: "Basically, anyone who studies viruses REALLY believes in evolution."

Totally OT but that was what I always thought in my mind when ever I heard someone argue that evolution didn't exist. Have they ever heard of HIV drug resistance? Scratch that, have they ever heard of or experienced antibiotic resistance? You can watch fast growing bacteria evolve in a dish to become resistant to drugs - I did it in my freshman science class.

Anyways, back to the regularly scheduled programming. Interesting report. I anxiously await the Sept XMRV conference.

 

"Dr. Mikovits has no doubt about the provenance of their original discovery. Her answer indicated that she feels the issue was settled with publication of the Alter/Lo paper and that its time to move on"

Nice article. Sorry if my post sounds blunt, but I am pissed that we still spend energy trying to prove that XMRV exists and should be studied or spend money on it.

Based on all on the news i read about genetic related illnessses lately, and how viruses modify DNA or how genetics determine disease, it is clear science is way ahead of the news the public is being spoon fed just now. Scientists have been testing retorviruses for use in gene therapy for years. How could they not know the affects of retorviruses have on genetics, if they are using them to try and correct diseases caused by what they are calling "genetic defects" or "environmental factors"? The scientists know about XMRV. Just look at how much more detailed Dr Lo knowledge was of WPI, who supposably just found this very hard to find new virus. Dr Lo steps in and shows the WPI how it is done by finding all these variations. It's a complete joke!

The real story is how the shrowd of deception has been jerked at the CDC by the conflicting story at NIH, and what powers are influencing the CDC(big business, or something else).

The only thing we are missing now is funding. I think it is coming, but we need to push for more.

http://www.veteranstoday.com/2010/0...gulf-war-veterans-at-va-hospitals-questioned/

 

swarms, variants, complementation, etc.

Indeed it is...I don't know why she said that but it is most intriguing. Most people who test positive do harbor several of the variants or viruses or whatever you want to call them.

This was touched on lightly in the "Does X (or P) mark the spot.." commentary by Courgand et al. They talked about "potential complementation and recombinational events that may lead to their transmission into humans". Complementation is a good way to describe a situation in which multiple infections allow one virus to use genes carried by another infecting the same cell without incorporating these into its genome. Recombination allows actual transfer of genetic material.

My own bias has been in this direction since I read that the XMRV genome has about the minimum genetic information to form reverse transcriptase, capsid and envelope. Evidence for multiple infections with ME/CFS has been apparent from day one. People looking for a single infectious agent have repeatedly come up short. When you eliminate all other infections, your cohort tends to vanish. This also fits the highly variable progress of the illness. Finding an infectious agent with precisely the right characteristics, and weaknesses, in strong association with the illness brings in a new viewpoint on possible pathology.

If this is established, I expect similar processes to play a major role in a variety of illnesses currently of unknown etiology.

 

I believe Dr. Sandra Ruscetti is looking hard at how these viruses interact with each other. I think it was Courgand that noted that the 'glycoprotein' (??) - some element of MLV's is able to transfer itself to other viruses including HIV and increase their effectiveness - talk about evolution in action......Wouldn't that be something if they found XMRV was able to interact with herpesviruses in particular....

 

Intriguing article - thanks so much for your diligent research!

 

Great article Cort. Nice job.

I know Dr. Komaroff is conservative- but I think the quote below is too conservative. The correlation seems pretty clear at this point- let's get on with the clinical trials and stop calling for 900 replication studies, while we suffer indefinitely. Especially ones to find out why the others couldn't find it- Who cares- I can't find it either...Start handing out Drugs!!!

"In summary, our study does not and should not settle the question as to whether mouse retroviruses
may be associated with CFS. It is one study, one piece of evidence. Scientific conclusions require
multiple studies, and multiple types of evidence. More work needs to be done, particularly among
those laboratories already engaged in the study of this question, to understand why their results are
different."

 

Cort: spelling in Dr Komaroff section: "...the ‘most likely explanation’ of the disorder is a ‘chronic infection’ that ‘very plausibly’ either occurs in the brain or effects the brain". Should likely be "affects" not "effects".

Thanks for the article! I'm finally letting myself get excited.

 

Six of the best

Great article Cort. Nice job.

I know Dr. Komaroff is conservative- but I think the quote below is too conservative. The correlation seems pretty clear at this point- let's get on with the clinical trials and stop calling for 900 replication studies, while we suffer indefinitely. Especially ones to find out why the others couldn't find it- Who cares- I can't find it either...Start handing out Drugs!!!

"In summary, our study does not and should not settle the question as to whether mouse retroviruses
may be associated with CFS. It is one study, one piece of evidence. Scientific conclusions require
multiple studies, and multiple types of evidence. More work needs to be done, particularly among
those laboratories already engaged in the study of this question, to understand why their results are
different."

Fine post Recovery soon.

1) HIV had one replication study to be confirmed as causing AIDS.

2) We may already have six studies finding XMRV in CFS before 1 year has passed since the SCIENCE paper was made public in october 2009.

i) Lombardi, SCIENCE paper in American patients by WPI
ii) Alter/Lo, PNAS paper in American patients by FDA
iii) Cheney's ME/CFS in Americans patients and worldwide
iv) De Meirleir's ME/CFS in European patients
v) Mikovits/InvestinME ME/CFS in UK patients
vi) Blomberg/ME Research UK in UK patients

Hopefully Professor Komarrof can see all this data? As you said Recovery Soon, ''stop calling for 900replication studies, while we suffer indefinitely'' Time for him to take a lead or get left behind in the rush that is sure to come. 17 million is a hell of a lot who want/need medications to try, even if they are not initially ARV's. Ampligen would be a good start.

 

Fine post Recovery soon.

Aren't they all, Sunshine?

 

Aren't they all, Sunshine?

:victory::victory::victory:

 

Cort: spelling in Dr Komaroff section: "...the most likely explanation of the disorder is a chronic infection that very plausibly either occurs in the brain or effects the brain". Should likely be "affects" not "effects".

Thanks for the article! I'm finally letting myself get excited.

Thanks 'affects' and 'effects' is a tough one. (So is 'its' and "it's' )

 

I thought the idea of enlisting the forums to help proof-read, as much as anything else in terms of corrections and feedback, was actually a very good one that I've had in mind for a while - some way of actually editing a copy in members-only space could work very well I think.

 

I'm glad to read this article. Here is my opinion, which I have stated before: I've found the controversy around the different variations, XMRV and MLVs, to be overplayed from the beginning. Dr. Lo "started it"; yet in the Q & A period afterwards, he contradicted that impression of different viruses when he quietly said that these variations, this degree of variability, was both normal and expected among viruses. He gave the example of hepatitis, as I remember. What he barely mentioned under his breath was the possibility that differences in patient cohorts could be causing the differing results--with the CDC's paper.

My feeling about all this, starting with Dr. Lo but going on to the other commentators, both in the media and here, was that the viral variations as an issue was overweighted. It was a red herring, a false trail that most charged right down, while the cohort difference in particular was greatly underweighted. To me, there was politics in this. I think that the CDC has to save face/have its face saved. What is useful to this end is to criticize the opponent's work, while the CDC gets time to step by step move away from its old position. It must not be bluntly confronted or shown to be wrong. Why? The CDC is the biggest player around, by far, with the greatest resources. Scientists needing contracts and research dollars respect that. The small players like the WPI are not only safer to criticize and challenge, but this is how it is going to be played, until the CDC can move slowly from its old position, keeping its respectability intact. Its respectability is important as the guardian of public health.

That is how I regarded the presentation by Dr. Lo and Alter's findings and the commentary afterwards. There is a political context to this science. We want the science to move forward, but are wise to consider the politics.

The best thing to do? Allow the CDC a graceful way to change position, is one suggestion.

 

I agree that the MLV variation question seems to have lost importance with Dr. Mikovits stating the WPI has seen variation from the beginning. Why Alter/Lo were able to find MLV's without finding XMRV is a more interesting question (if a less important one). Is XMRV not in the NEast? (Or was it not when those blood samples were first taken?) Or did they just miss it? They did not replicate the WPI's methods- which, I think, is actually quite encouraging but maybe that means they just missed it.

Thus far the Alter/Lo has not proven the CDC's findings wrong (0 MLV's or XMRV) - which is interesting and unfortunate. If they had found MLV's in the CDC's samples that would have been so much easier - then they could say its the methodology the CDC used. but since they haven't found anything yet...its either sample preparation removed them or it is a very different cohort.

 

I agree that the MLV variation question has been overplayed and even distorted by the press. You have the same thing (variations) with HIV and hepatitis. While the general public may not be able to grasp this, the scientists are well aware, including the denialists. As for XMRV not being present in the northeastern US, I can tell you for certain that it is and has been for a long time. I am XMRV positive and have spent my entire life in the NE and my symptoms date back nearly 20 years. IMHO, the CDC continues to use the wrong patient cohort on purpose and are a disgrace to the scientific community. How many more positive studies is it going to take?!!! The thing that surprises me is that the drug companies seem to be dragging their feet on this. I recall at least one of them stating that they want to see causation proved before they'll do drug trials. WTH? What is it going to take, if not drug trials, to prove causation?

 

the cohort difference in particular was greatly underweighted. To me, there was politics in this. I think that the CDC has to save face.
The best thing to do? Allow the CDC a graceful way to change position, is one suggestion.

I completely agree. They purposefully defined this condition in a way so that no one could ever find any connecting link amongst the patients, until someone came along and actually started looking in the right people. That's like searching for vaginal cancer in an all male population- And then holding back clinical trials until you figure out why you couldn't find it. How long do we suffer til they save face? What a joke.

The thing that surprises me is that the drug companies seem to be dragging their feet on this. I recall at least one of them stating that they want to see causation proved before they'll do drug trials. WTH? What is it going to take, if not drug trials, to prove causation?

I don't get that either. There's a fortune to be made.