Volkskrant article: A virus in the blood or not?

[JillBohr]

I think that they will do anything to minimize the importance of XMRV, and, according to the title of the debate, maybe they're already planning their route (if plan A (XMRV doesn't appear at all in ME/CFS patients) fails, we have already a plan B).

Welcome Rivotril! It is great having you here. Subtr4ct posted a great thread on Fidelity of target site duplication and sequence preference during XMRV integration. The whole paper can be found here:

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0010255

Robert Silverman is one of the co-authors and basically this paper shows how XMRV can reek havoc in our bodies. Here is what they wrote at the end of the discusssion.

Therefore, the recent evidence of authentic infections of humans by XMRV and the association of XMRV infection with prostate cancer and chronic fatigue syndrome [1], [6], [7] are alarming and warrant further investigations to determine the causal relationship and pathogenic mechanisms

You can find the thread here:

http://www.forums.aboutmecfs.org/sh...d-sequence-preference-during-XMRV-integration

 

[Rivotril]

Thanks JillBohr, also for your information!
I already read a substract from the new paper by Silverman et al, and , for me, it sound plausible in the "XMRV as a master of puppets"-theory.

I think the "plan b" will fail to convince anyone who is really into the XMRV-story (like retrovirologists like Coffin and Ruscetti), but I just tried to explore how Nijmegen makes her plans (although it's tough to transform myself in what goes on in minds like these of Van der Meer) .
But the title of the debate really gives me the idea that they eventually will go that way,
which is (also) a stupid way, which will be invalidated by people like Silverman.
But in the meantime, They delay the process for as long as possible, that's all they are doing and all they can do...

 

[anciendaze]

plans b, c, etc.

The possibility of a plan b, or later in the alphabet, is actually encouraging for me. I believe we are seeing something psychologists call "cognitive dissonance". What they know and what they believe no longer match.

If you will forgive me for saying so, I think we are dealing with people who are wrong about facts, not intrinsically evil. After years of defending your turf in organizations, you tend to lose sight of any bigger picture. I've seen remarkable examples totally unrelated to medicine.

The phrase I've found most useful in describing human behavior is "bounded rationality". Present people with facts in some context and they will make decisions others describe as rational. Change the context to something sufficiently strange and they will do the most amazingly irrational things. In an organization, it typically takes all the running you can do to stay in one place. A paradigm shift, like the one going on, causes a kind of mental earthquake. This is where you discover which people have been thinking things out, and which operating on autopilot. Most people in organizations are on autopilot. (A psychologist friend calls them "stimulus bound".) There are days when the null hypothesis on human reason seems very strong to me.

Nothing any of the people you regard as enemies can do will make XMRV go away. It is undeniably real. It is found in association with prostate cancer. It is a unique human retrovirus. The very fact that all these groups used XMRV cutures from cloned cell lines of prostate cancer cells to provide positive controls for tests testifies to the acceptance of these facts.

Funding for cancer research is orders of magnitude beyond anything committed to CFS. The social networks of cancer researchers are far more extensive than those advocating CBT for CFS. This led to a major miscalculation in this particular fiasco. The Nijmegen group thought they could bruskly dismiss work by a group of obvious nutcases off in Reno Nevada. They totally forgot that they were effectively slapping the faces of prominent researchers at NCI and CC, who have laboratories with international reputations. Those researchers refused to back down and cut WPI adrift.

With questions raised about cancer, and the safety of the blood supply, nothing will stop the development of carefully validated tests for XMRV accepted by international organizations. People are starting to make plans for what they will do when those results come in. They are far from giving up, but -- just in case -- they are reserving seats next to the life boats.

 

[fred]

If you will forgive me for saying so, I think we are dealing with people who are wrong about facts, not intrinsically evil.

I beg to differ. People who throw children into swimming pools to see if they will swim, who leave children in a hospital bed to soil themselves as a way of determining whether or not they are genuinely incapable of walking and have severely physically disabled young people sectioned under the Mental Health Act for refusing psychiatric treatment are not simply "wrong about facts". They are cruel, without compassion and have no respect for human suffering. I define that as evil.

 

[Rivotril]

my honest opinion: people with common sense who let prevail their own ego's, their reputation, money and power in the scientific world, above caring about the health of immune-dysfunctioning people are, at least, very unethical people.

Funding for cancer research is orders of magnitude beyond anything committed to CFS. The social networks of cancer researchers are far more extensive than those advocating CBT for CFS. This led to a major miscalculation in this particular fiasco. The Nijmegen group thought they could bruskly dismiss work by a group of obvious nutcases off in Reno Nevada. They totally forgot that they were effectively slapping the faces of prominent researchers at NCI and CC, who have laboratories with international reputations.

I totally agree with that, for many years, ME/CFS was an illness where not that much great scientists were interested in. For People like Nijmegen, it was relatively easy to stay in control.
The connection with a retrovirus, and a link to cancer, has fortunately changed this, so that more and more scientific heavyweights are involved now, and they won't go out of it anymore.
This was also the first thought I had when I read about the Science publication back in october 2009

 

[Kelly]

Slow down people

All speculation aside, there is no proof that XMRV is pathogenic for any disease. Nor is there proof that it isn't. Think of it like a sports season. One or two games rarely predict the outcome of the season - particularly at the beginning of the season.

Keep in mind also that causuality with any pathogen is very difficult to prove without longitudinal studies following a population from health to disease. XMRV is too newly discovered for that kind of research to be in place just yet. It doesn't mean it isn't a serious pathogen, just that scientists, for many reasons, cannot say one way or the other right now.

Waaay too many people jumping to conclusions - scientists and non-scientists. Rivalry and jockeying for position are common in all areas of science - it's not all a plot by psychosocial adherents who froth at the mouth every time the phrase "germ theory" comes up.

Yes the Wessely school has an agenda - what else is new. And I'm sure they were very persuasive when they approached the virologists they worked with. It is quite possible that the non-psychiatrists were taken off guard when their research came under such intense fire. Defensive people do and say things they wouldn't normally do or say.

Nor is there any concrete proof one way or the other that other pathogens, or combinations of pathogens/toxins, do not also cause ME/CFS. There hasn't been enough research done yet. Any competent virologist will tell you that one disease can be caused by many different pathogens and one pathogen can cause many different diseases.

What is unfortunate regarding this particular newspaper article was that it was essentially one source. In the U.S. that is a no no, the professional standard is three sources minimum, but the whole world isn't the U.S.

 

[usedtobeperkytina]

The possibility of a plan b, or later in the alphabet, is actually encouraging for me. I believe we are seeing something psychologists call "cognitive dissonance". What they know and what they believe no longer match.

If you will forgive me for saying so, I think we are dealing with people who are wrong about facts, not intrinsically evil. After years of defending your turf in organizations, you tend to lose sight of any bigger picture. I've seen remarkable examples totally unrelated to medicine.

The phrase I've found most useful in describing human behavior is "bounded rationality". Present people with facts in some context and they will make decisions others describe as rational. Change the context to something sufficiently strange and they will do the most amazingly irrational things. In an organization, it typically takes all the running you can do to stay in one place. A paradigm shift, like the one going on, causes a kind of mental earthquake. This is where you discover which people have been thinking things out, and which operating on autopilot. Most people in organizations are on autopilot. (A psychologist friend calls them "stimulus bound".) There are days when the null hypothesis on human reason seems very strong to me.

Nothing any of the people you regard as enemies can do will make XMRV go away. It is undeniably real. It is found in association with prostate cancer. It is a unique human retrovirus. The very fact that all these groups used XMRV cutures from cloned cell lines of prostate cancer cells to provide positive controls for tests testifies to the acceptance of these facts.

Funding for cancer research is orders of magnitude beyond anything committed to CFS. The social networks of cancer researchers are far more extensive than those advocating CBT for CFS. This led to a major miscalculation in this particular fiasco. The Nijmegen group thought they could bruskly dismiss work by a group of obvious nutcases off in Reno Nevada. They totally forgot that they were effectively slapping the faces of prominent researchers at NCI and CC, who have laboratories with international reputations. Those researchers refused to back down and cut WPI adrift.

With questions raised about cancer, and the safety of the blood supply, nothing will stop the development of carefully validated tests for XMRV accepted by international organizations. People are starting to make plans for what they will do when those results come in. They are far from giving up, but -- just in case -- they are reserving seats next to the life boats.

Agreed. I have said before, resistance to change is not because of not belief of the new understanding, or quistionable evidence. Often it is because to change, to embrace the new, a person must give up or lose what they have had for years. And when it comes up to giving up beliefs, it is giving up who you were. Our beliefs are who we are. There will naturally be resistance to anything that threatens a person's identity for years.

Tina

 

[usedtobeperkytina]

Kelly

Kelly, I noted that right off the bat. When he made the statement of only one lab, I thought, "That's not true, is it?"

Would have been better if reporter had called WPI and asked, "He said you did test in only one lab, is that true?"

As has been stated by posters, I don't think it is.

In that case, I will again urge Anne Whittemore to contact this newspaper with a letter to the editor asking for a correction to be made or for them to publish a letter to the editor with the correct information.

Again, published incorrect information about science research can not go without correction. It does harm. It can not be allowed to stand. The truth is the supreme goal here.

Tina

 

[Rivotril]

Would have been better if reporter had called WPI and asked, "He said you did test in only one lab, is that true?"

That's the way it goes, the pyschosocial school has the power, especially in the Netherlands where, as I mentioned before, Van der Meer is the chairman of the leading medical advisory board (not just about ME/CFS but also for other diseases) for the dutch government, so they see him as a leading authority, especially on this topic.
When he says something about ME/CFS , the next day it's here in ALL newspapers.
And when Ortho presents a press release about e.g. the WPI letter and the positive results on the dutch samples, it's in no paper.
Volkskrant only made an article now because Van der Meer had something to say to them, he wanted to do some damage control and wanted to temper the bloodban-hype.

And: I know several people who already wrote the Volkskrant journalist about the other facts that were not mentioned in the article, and the fact that they should hear also WPI...
but they just keep it like it is, they think that this is good journalism and that in this case, the only source (Van der Meer) is just enough.