Post XMRV - For those that think this is dead...

[JT1024]

Just thought I would post something since certain individuals seem to think XMRV is dead and they hope that HGRV research (at least public knowledge of it) goes away.

It is not going to happen! Are you kidding? Do you honestly think that big Pharma and various government agencies can buy off or silence scientists world wide in this day and age?

I think not.

Despite attempts by numerous parties with vested interests, research will continue and will be released via the internet....even if peer reviewed journals fail to publish. It is their loss.

People who were previously naive have been educated to the risks that have been taken without the consent of the general public. Trying to silence them at this point is futile.

 

[Nielk]

I don't know either way whether xmrv is real or not. I'm just wandering what makes you so certain about it?

 

[kurt]

Who is trying to stop XMRV research? Labs can study whatever they like, even if they just waste their own money. I suspect if something new were to be discovered it could be published, although probably there would be more careful about documentation of the studies.

What people are trying to do is reach a consensus opinion about the claims made by WPI about XMRV and ME/CFS. Outside labs could not validate their claims. WPI was unable to replicate their own experiment (the BWG) which is the kiss of death in science. The emerging consensus is that there is no real evidence of XMRV in ME/CFS, and also no evidence of ANY MLV family member virus. At this point any lab wanting to convince other researchers there is XMRV or HGRV will have to prove conclusively they are not suffering from the problems WPI had. Meaning they would have to succeed in a blinded study like what was done by the BWG, and outside labs would have to be able to validate the finding.

You are welcome to your opinion, we all have that right. My opinion is that there is no obvious transmission method for a blood-borne infection in ME/CFS given the outbreaks, lack of ME/CFS developing in sexual partners, etc. I don't think there ever was a good chance for an MLV infection to explain our illness. But that's just an opinion, time will tell what is going on here. IMHO, there are and will be answers, ME/CFS is a real, biological illness and sooner or later its pathology will be tracked down.

Incidentally, I think RichVank has a good idea that needs to be explored further (if you have not watched his recent video presentation in Sweden, it is well worth the 3 hours to watch). That is a good direction, he has been working on ME/CFS for 15 years now, and in my opinion his ship is about to come in, metaphorically speaking. Seriously, if anyone is feeling hopeless because of the XMRV/HGRV situation, just watch that video!

 

[barbc56]

What Kurt said.

 

[markmc20001]

WPI was unable to replicate their own experiment (the BWG) which is the kiss of death in science. The emerging consensus is that there is no real evidence of XMRV in ME/CFS, and also no evidence of ANY MLV family member virus.

Most likely the problem is the WPI did not go back and try their tests again with this VP62 clone Silverman created AND that the 20 other tests referenced without running the WPI assays.

Of course we might never know the scientific truth if the replication is never done.(which to me is plain nausiating. This kind of MAJOR negligence would never happen in a private corporation trying to find an infectious disease)

 

[richvank]

Incidentally, I think RichVank has a good idea that needs to be explored further (if you have not watched his recent video presentation in Sweden, it is well worth the 3 hours to watch). That is a good direction, he has been working on ME/CFS for 15 years now, and in my opinion his ship is about to come in, metaphorically speaking. Seriously, if anyone is feeling hopeless because of the XMRV/HGRV situation, just watch that video!

Hi, Kurt.

Thanks for your comments, and I'm glad you liked the video. Of course I'm biased , but I do agree that there are signs lately that a tipping point is being reached in the acceptance of my hypothesis by the research community as being at least worth considering. So.....stay tuned!

Rich

 

[kurt]

Most likely the problem is the WPI did not go back and try their tests again with this VP62 clone Silverman created AND that the 20 other tests referenced without running the WPI assays.

Of course we might never know the scientific truth if the replication is never done.(which to me is plain nausiating. This kind of MAJOR negligence would never happen in a private corporation trying to find an infectious disease)

If the WPI botched the BWG, then they certainly are free to run another blinded study and get the assays right. If they do not run such a study you have to wonder ...

What do you mean by the replication never being done? I have been told it is impossible to perfectly replicate the conditions of any series of test like those reported in the Science article. Anyway, whether or not a perfect replication is completed is irrelevant, what matters is the preponderance of evidence and the explanatory power of the outside validation experiments conducted (which is the N, the statistical power, etc). Even if a perfect replication matched the original WPI finding, that would not prove anything because a replication is not the same as validation. The original claim failed dozens of attempts at validation. These are trained experts running all the studies and they know how to find a virus, regardless whether it is live, is integrated in a cell's DNA, or has been activated through some demethylating or other stimulating agent. They always were able to calibrate the test, usually to the conserved portion (pol) of the DNA, which means they would detect ANY MLV, and notably, WPI did not report that type of pol gene testing. Also, most of them used more sensitive tests than WPI's nested PCR (which is more subject to contamination). So if multiple test designs can not find a virus, there is reasonable doubt, rational suspicion that the original finding is a testing artifact of some type (meaning, there is an interaction between reagents, patient DNA in a certain group of patients, a common contaminant, etc). One other point, several labs DID use WPI's test design, so there was serious effort to replicate as well as validate the original finding. Anyway, as I mentioned, there is no restriction on someone's research in this area, they are free to continue trying to prove their original claim, or trying to prove something else. But the scientific community has to draw its own conclusions and it seems for the most part they have.

 

[fla]

HGRV's should continue to be investigated. If they do have something to do with causing M.E., they are probably everywhere and only genetically predisposed people develop full blown M.E. (partial methylation cycle block) from them.

 

[barbc56]

HGRV's should continue to be investigated. If they do have something to do with causing M.E., they are probably everywhere and only genetically predisposed people develop full blown M.E. (partial methylation cycle block) from them.

From the BWG.

Currently there is no such thing as human gammaretroviruses (HGRV). No published virus has been isolated, cloned or sequenced from a human.

You can believe otherwise all you want but you can't dress it up as science.

 

[fla]

You can believe otherwise all you want but you can't dress it up as science.

Huh? Scientific research is about finding things that are not yet known. I'm not a "believer" of the unknown pathogen theory personally but I am a scientist so I must agree that all avenues be investigated until an etiology is agreed upon by science.

 

[*GG*]

Who is trying to stop XMRV research? Labs can study whatever they like, even if they just waste their own money. I suspect if something new were to be discovered it could be published, although probably there would be more careful about documentation of the studies.

What people are trying to do is reach a consensus opinion about the claims made by WPI about XMRV and ME/CFS. Outside labs could not validate their claims. WPI was unable to replicate their own experiment (the BWG) which is the kiss of death in science. The emerging consensus is that there is no real evidence of XMRV in ME/CFS, and also no evidence of ANY MLV family member virus. At this point any lab wanting to convince other researchers there is XMRV or HGRV will have to prove conclusively they are not suffering from the problems WPI had. Meaning they would have to succeed in a blinded study like what was done by the BWG, and outside labs would have to be able to validate the finding.

You are welcome to your opinion, we all have that right. My opinion is that there is no obvious transmission method for a blood-borne infection in ME/CFS given the outbreaks, lack of ME/CFS developing in sexual partners, etc. I don't think there ever was a good chance for an MLV infection to explain our illness. But that's just an opinion, time will tell what is going on here. IMHO, there are and will be answers, ME/CFS is a real, biological illness and sooner or later its pathology will be tracked down.

Incidentally, I think RichVank has a good idea that needs to be explored further (if you have not watched his recent video presentation in Sweden, it is well worth the 3 hours to watch). That is a good direction, he has been working on ME/CFS for 15 years now, and in my opinion his ship is about to come in, metaphorically speaking. Seriously, if anyone is feeling hopeless because of the XMRV/HGRV situation, just watch that video!

So what did the FDA study done by Lo and Alter find?

GG

PS Is there a link to this video you speak of?

 

[jace]

Why, when I try to access page two of this thread, do I get this message?

Forbidden

You don't have permission to access /showthread.php on this server.

Additionally, a 404 Not Found error was encountered while trying to use an ErrorDocument to handle the request.

ETA Aha! Make a post and up it comes!

ggingues, here's the link to Rich Van K http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/

The BWG was not a replication, btw, Kurt.

 

[Esther12]

It is not going to happen! Are you kidding? Do you honestly think that big Pharma and various government agencies can buy off or silence scientists world wide in this day and age?

No.

Anyone who thinks that pharmaceutical companies are trying to hide evidence of a link between CFS and a retrovirus is nuts. Pharma would love to have CFS be caused by a retrovirus which required life-long treatment with ARVs. Which is one of the reasons why some of the theories of cover-up which a few patients are using to explain the growing evidence against HGRV/CFS are so misguided.

 

[wdb]

I also love the BWG comment - CURRENTLY there is NO SUCH THING... no PUBLISHED study etc. etc.

This is a rhetorical linguistic attempt control of thought - that ain't 'science'!

I see no problem with the BWG statement, you seem to be saying it's okay believe things exist before there is any good evidence that they do, there *could* be a family of unicorns running around on Jupiter - do you believe they exist too ? no, you can be open minded that they might exist but to believe in them now is not science.

 

[Angela Kennedy]

I see no problem with the BWG statement, you seem to be saying it's okay believe things exist before there is any good evidence that they do, there *could* be a family of unicorns running around on Jupiter - do you believe they exist too ? no, you can be open minded that they might exist but to believe in them now is not science.

But - firstly - there is EVIDENCE for the existence of HGRVs. There's NO EVIDENCE for unicorns on Jupiter (we're all agreed on that, right?)

It means that it should have been worded differently. They are claiming there's no such thing CURRENTLY. That's a fallacy. Things either exist or they don't, independently of our ability to name them, for one thing. Therefore, they cannot claim something does NOT exist currently, but will exist when they acknowledge it's there - which is what their language is denoting- obviously fallacious.

Note the 'no PUBLISHED' on top of that. It is KNOWN that unpublished work has been going on. The 'jury is still out' so to speak, and scientific positions would be tentative.

The fact this assertion is so UNTENTATIVE - and illogical linguistically - makes its position untenable.

 

[Angela Kennedy]

AND - has anybody elsed noticed how claims of scientific authority that we've been seeing are all based on rhetorical use of LANGUAGE, a social structure?

This is important- because the language is not accurately denoting the science in this latest debacle - it is being used for ideological purposes. Ignorance of this among people claiming scientific authority has led to heinous mis-use of language without contest. It shows how bad things have got, for example, when a female scientist is subject to highly sexist language about her eyes in a so-called scientific journal, and male scientists get to compare her to a female religious fanatic, and no-one except some of us bat an eyelid.

Are 'Scientists' becoming THAT ignorant, THAT dumbed down? It looks that way.

 

[Daffodil]

if xmrv is dead why do they keep doing studies on it? wasnt there a recent study showing it can infect neurons?

 

[wdb]

But - firstly - there is EVIDENCE for the existence of HGRVs. There's NO EVIDENCE for unicorns on Jupiter (we're all agreed on that, right?)

It means that it should have been worded differently. They are claiming there's no such thing CURRENTLY. That's a fallacy. Things either exist or they don't, independently of our ability to name them, for one thing. Therefore, they cannot claim something does NOT exist currently, but will exist when they acknowledge it's there - which is what their language is denoting- obviously fallacious.

No they worded it correctly, things are not considered to exist until there is sound evidence they do exist. There are infinite things that might exist, we can't assume everything to exist now that might feasibly one day be discovered to actually exist.

But you are right unicorns might not be the best example, there is more evidence that HGRVs exist than unicorns. How about greater than unity machines or precognition, both of those are being studied and both have some evidence for their existence but rightfully neither are currently considered to exist as as there is not yet any sound evidence.

 

[Guido den Broeder]

Actually, in science there is no such thing as evidence that something exists.

What science does is come up with a theory, build a model, formulate a hypothesis, conduct an experiment, collect the data, estimate the likelihood of the hypothesis being false against the data, adjust the theory, and repeat.

 

[Wonko]

Existence is a tricky concept, I've seen archeologists construct entire cities from a few shards of pot and a few partial skeletons, I've seen palentologists cconstruct entire ecosystems from a few shards of bone - yet unicorns, an animal for which we have skeletons which are over 99% complete and numerous historical anecdotal accounts of don't (and by implication, never have) exist? However I do find it a little unlikely they have perfected a space suit that they dont pucture, let alone space travel.

Next you'll be saying that Santa doesnt exist despite large parts of the world economy being almost totally dependant on Christmas, i.e. a lot of businesses only go into profit as a result of it.

Existence? Tricky one.....