1.find vaccine before 2. tell the world about xmrv?

[Berthe]

Dear everyone,

Perhaps it sounds stupid, but there is something on my chest. The words of Le Grice keep on lingering through my mind.

Lessons from FELV will be well worn if we get to point of vaccine devt
- Vaccines for FELV several methods, using inactivated virus to other
- 44 100% effective
- Pathogenesis and immune correlates MUST be characterized to perform eval of vaccine and immune technologies for XMRV.

I was angry at that time and didn't understand what he was talking about. But now (pretty late) it comes to me. Are they using delaying tactics to 1. find a vaccine before 2. tell the world about the virus. Just in order to prevent a world health crisis?

Forgive me if this is discussed already. Troublesome mind

Love,
Berthe

http://www.onwilliglichaam.blogspot.com

 

[Sasha]

Hi Berthe - if XMRV is at, say, 5% in the health population (based on WPI & other's rates of XMRV in healthy controls), the scientists looking at the problem will realise that they themselves, and their families, have a 5% chance of being XMRV+. I would consider a 5% chance to be quite high (it's only 1 in 20; and of course, that 5% figure might be an underestimate due to relatively insensitive detection techniques, as the scientists will recognise).

Purely out of self-interest, I'd expect even the most sociopathic scientist to want to get XMRV and any disease link out in the open, and therefore research on it fully funded, as soon as possible. Everyone is at risk, not just those of us who are already sick.

I must admit I'm no good at political thinking but that's what occurred to me on reading your post! I also think a vaccine may be a long way off - too far down the line for anyone to keep a lid on XMRV, even if they wanted to.

 

[Berthe]

Hi Sasha,

I hope you are right, but my mind also considers the option of 'political thinking' more often then I want to. I've been in to many 'political' debates at university last years. You would think that the academic world is sincere and works according ethical lines. No way Jos! It's 90% politics and that scares me off.
I didn't want to justify the delaytactics. I don't know if there are any. I also don't know how long it would take to make a vaccine. If they can make a vaccine at all.

Love,
Berthe

http://www.onwilliglichaam.blogspot.com

 

[anciendaze]

Dear everyone,

Perhaps it sounds stupid, but there is something on my chest. The words of Le Grice keep on lingering through my mind.

Lessons from FELV will be well worn if we get to point of vaccine devt
- Vaccines for FELV several methods, using inactivated virus to other
- 44 100% effective
- Pathogenesis and immune correlates MUST be characterized to perform eval of vaccine and immune technologies for XMRV.

I was angry at that time and didn't understand what he was talking about. But now (pretty late) it comes to me. Are they using delaying tactics to 1. find a vaccine before 2. tell the world about the virus. Just in order to prevent a world health crisis?...

For any administrator, which LeGrice definitely is, the politics of science definitely require some such available response before public disclosure. You need to give the public an option which will funnel increased funding toward your own organization, not away. Survival of the organization you head is top priority for anyone who reaches the top.

The (non-zero) range of figures for infection of the general population is from about 2% to 7%, which translates, (in the U.S.,) into 6 to over 20 million. The cost of maintaining such a population on retrovirals to prevent further spread could be estimated at very roughly $1,000 per month per individual, even if everyone complied with treatment. That simply is not going to happen.

Admitting the situation is out of control, and nobody who has been doing medical research has an answer, is a sure-fire recipe for the kind of search for culprits and scapegoats nobody in research really wants. Having uninformed outsiders come in to reevaluate and restructure your organization is a nightmare.

On the other hand, a vaccine for this virus looks easier than one for HIV. The examples of effective vaccines for FeLV are promising. If we had a better idea of what we are up against, a crash program might be able to produce one quickly, though it would have to bypass some stages of normal development. The current state of technology transfer from medical research to medical practice is dismal. Putting an unprecedented public health crisis together with existing organizational constipation is unlikely to make anyone happy with the results.

Meanwhile, the parallels with other illnesses keep showing up. If these are not actually indirect results of the same viruses, the paradigm-breaking nature of this research could very well shed light on other areas with a history of "rumor viruses". (I would expect a human virus causing breast cancer to be a beta retrovirus, not gamma. However, the problems with detection might well be similar. Put this together with well-funded public awareness campaigns and you have an explosive mixture just waiting for a spark.)

I think this is very plausible, it would explain both LeGrice's statements, and his obvious lack of enthusiasm for his role in this situation.

 

[Sasha]

Hi Berthe - I totally agree that scientists are driven a lot less by ethics than we would like - I was hoping that their self-interest might match ours, but maybe not! Anciendaze makes good points about selfishness at the institutional level.

HIV managed to get well-established in the public eye decades before a vaccine was a possibility - if a vaccine looks easier for XMRV, I wonder if it might look near enough to be worth delaying for but I don't think that institutions are really in charge of the process. I think that journal editors are in control of what gets published and that scientists are in charge of submitting their stuff; as long as research can get funded, I don't think it can be suppressed - at least not for long, and not internationally.

Anciendaze, what's a rumour virus?

 

[anciendaze]

...Anciendaze, what's a rumour virus?

The kind of finding Robin Weiss was talking about. One which most people on this forum will recognize was the claim by Elaine DeFreitas that a retrovirus was behind ME/CFS.

She thought the fragments she found were similar to HTLV I and II, but didn't finish characterizing it, before she was placed in the position of passing a double-blind test. HIV would not have been discovered if similar requirements had been placed on researchers, and their funding was cut off, at a similar stage. Another showed up in her work on MS, but that was an outbreak in the Florida Keys which has always been viewed as an anomaly. (I think this was atypical MS, very likely related to XMRV.) She had a mess on her hands, trying to tease out a single retrovirus from samples from patients with multiple infections.

At that time, I don't think the tendency of virus to recombine had been taken sufficiently seriously. There's no telling what was in those cultures, but the TEM micrographs showed some virions with the right size and shape for a retrovirus in the same class as XMRV. Nobody followed up.

Before her a researcher named Panem found clues to a retrovirus associated with Lupus. Again, nobody believed, nobody followed up.

There has been a stream of reports of a human analog of murine mammary tumor virus in humans. In mice, this happens to be a cause of breast cancer. In humans, all these have been taken as examples of bad research. Nothing appears to have been settled in the last 20 years.

If my thoughts about blindness caused by unexamined assumptions are correct, these could be failures due to the same problems which currently beset research on XMRV. Beyond the immediate concerns of a public health crisis over ME/CFS, there must be people thinking ahead to what happens if many more of their research publications are dug up and reexamined with critical eyes.

 

[Sasha]

Thanks, anciendaze - I'd heard about Elaine DeFreitas's work but not the other stuff. That's fascinating that HIV research wouldn't have passed the requirements set for her finding at that stage.

So a rumour virus is a virus about which there are rumours?

Interesting that just a few years ago people mocked the idea that cancer was in any way "catching". My impression as a non-medical bod is that any notion of a viral contribution to diseases such as MS etc. has come out of nowhere in the last ten years or so - did I just not know about what was going on in the medical literature?

 

[Berthe]

So Anciendaze,

If I understand your position, you think this xmrv virus will be the rumourvirus of the future?

Love,
Berthe

http://www.onwilliglichaam.blogspot.com

 

[anciendaze]

So Anciendaze,

If I understand your position, you think this xmrv virus will be the rumourvirus of the future?...

I certainly hope not! I'm thinking the evidence is now strong enough to force reevaluation of assumptions. The first researcher to pursue a course which violates common assumptions takes a huge risk; the second is in an ideal position to capitalize on the change.

One thing which has disappointed me about the dispute is the failure to articulate the assumptions in play. It would also be handy if naysayers would make statements about how you would know if something violating assumptions did turn up. As I've said elsewhere, you can eliminate the possibility of contamination by discarding all positive results. I don't even have to have a laboratory to confirm this hypothesis. The appeal to counsel of "older and wiser" researchers like Robin Weiss clearly emphasizes past assumptions without even stating what those are. This is not the behavior of people who want things to become clearer.

 

[George]

The difficulty with the vaccine part is that a vaccine would only potentially protect those who don't have the virus now and everybody would have to get it in order for it work. Vaccinating the entire world would be unlikely but I suppose they could give it a try. At an estimated 5% infection rate to many people have the virus (way more than HIV) to try to contain the epidemic. It's way past containment which, is why I think there may be an attitude of "no rush". If it turns out that this virus is not directly pathogenic per se but rather "inflammatory" or causing inflammation which leads to- aggressive tumorgenisis in cancers, dis-regulation of immune and other systems and brain and spinal inflammation then these guys may be planning on just digging in for the long hall.

I was personally hoping for very low control numbers since lower numbers there would isolate the virus to just us and I was hoping that it was just ME/CFS patients so that we could force fast treatment programs much like AIDES. But with so many infected (3 to 7%) and so many systems and illnesses involved (ME/CFS, prostate cancer, autism, MS, other cancers) potentially it looks more like a long hall kinda thing. (sigh)

 

[Berthe]

Thank you Anciendaze,

I were sure you were hopefull, but at the same time a bit pessimistic about the 'progress' made since the discovery of WPI. I understand the mechanisms at work for the moment, but fear them at the same time. If the scientific world remains using delaying techniques, refusing to aknowledge what we so far know it becomes a matter of human rights.

Thank you again for responding.

Love,
Berthe

http://www.onwilliglichaam.blogspot.com

 

[anciendaze]

The difficulty with the vaccine part is that a vaccine would only potentially protect those who don't have the virus now and everybody would have to get it in order for it work...

It could protect cells that are not already infected, even if the infection is in other cells in the same body. This is how vaccination against rabies after infection works. The virus is still there, but replication is stopped. The very low numbers of infected cells we have been seeing could be an artifact of test assays, but I'm inclined to think otherwise; low rates of replication appear to be real. Holding the virus at bay, and giving the body clues about how to distinguish infected cells, might even give those infected relief.

I was personally hoping for very low control numbers since lower numbers there would isolate the virus to just us and I was hoping that it was just ME/CFS patients so that we could force fast treatment programs much like AIDES. But with so many infected (3 to 7%) and so many systems and illnesses involved (ME/CFS, prostate cancer, autism, MS, other cancers) potentially it looks more like a long hall kinda thing. (sigh)

This could be true, but our state of ignorance is such that I wouldn't assume so. If you assume nothing can be done, it is pretty certain nothing will be done.

While most people appear to be assuming having two species of virus makes things harder, I'm wondering about Mikovits "It takes two to tango". If both XMRV and PMLV are necessary for active disease, either one could be a weak point. Another aspect is the frequent association with common, even ubiquitous, viruses like EBV. XMRV could be operating by complementing genes in coinfections, (supplying genes they lack,) or actually recombining with coinfection sequences. In that case, acting against the coinfection might give relief from symptoms, even if it did not eliminate the cause of the disease.

I'm still thinking about other approaches, concerned with genes activated by XMRV infection. We simply don't know much about what is possible there. Even if most researchers don't think ME/CFS is a serious disease, the connection with high-profile illness pretty well forces them to look for illness prior to onset of these, and explain why the disease does not always follow a lethal progression in some people. Guess who becomes interesting in that case?

 

[Berthe]

I'm still thinking about other approaches, concerned with genes activated by XMRV infection. We simply don't know much about what is possible there. Even if most researchers don't think ME/CFS is a serious disease, the connection with high-profile illness pretty well forces them to look for illness prior to onset of these, and explain why the disease does not always follow a lethal progression in some people. Guess who becomes interesting in that case?[/I]



Who? (major brainfog).

Love,
Esther

http://www.onwilliglichaam.blogspot.com

 

[Sasha]

I'm still thinking about other approaches, concerned with genes activated by XMRV infection. We simply don't know much about what is possible there. Even if most researchers don't think ME/CFS is a serious disease, the connection with high-profile illness pretty well forces them to look for illness prior to onset of these, and explain why the disease does not always follow a lethal progression in some people. Guess who becomes interesting in that case?[/I]



Who? (major brainfog).

Love,
Esther

http://www.onwilliglichaam.blogspot.com

I think anciendaze means us - we become interesting because we are sick with XMRV and haven't yet progressed to other major diseases (i.e. ones that are better-established as major diseases in the eyes of researchers).

 

[Sasha]

I'm still thinking about other approaches, concerned with genes activated by XMRV infection. We simply don't know much about what is possible there. Even if most researchers don't think ME/CFS is a serious disease, the connection with high-profile illness pretty well forces them to look for illness prior to onset of these, and explain why the disease does not always follow a lethal progression in some people. Guess who becomes interesting in that case?[/I]



Who? (major brainfog).

Love,
Esther

http://www.onwilliglichaam.blogspot.com

I think anciendaze means us - we become interesting because we are sick with XMRV and haven't yet progressed to other major diseases (i.e. ones that are better-established as major diseases in the eyes of researchers).

 

[anciendaze]

Sasha is right. I now realize I could have phrased that better. I'm thinking that people with, e.g., chronic lymphocytic leukemia or mantle cell lymphoma, worry about surviving 5 years. Most of us demonstrate survival with this infection for longer periods. While many things are going wrong, they are not so wrong that this kills us. That says part of the pathology can be found by comparing us with those recognized as having progressive disease. Separating any single part of the pathology in a complex disease is a major part of understanding it; it is hard to tell specific features from the general signs which just say "this person is sick". When present medical science does understand pathology, this is generally how it gains that understanding.