New post from Dr. Deckoff Jones, talks about Knox/Peterson

[Bob]

Only if these findings can be replicated, Bob.

Indeed. So let's have replication studies please.

 

[Hope123]

This is separate from the science but I believe WPI has done a poor PR job with this illness. With such a controversial illness, as viewed by the public, they should have started out more conservatively and then gone on from there.

Dr. Jones can write whatever she wishes on her personal blog and I have appreciated reading some of her posts although I might not agree with them. However, as someone who is intimately connected with the WPI, she needs to considering toning down what she writes as the public will not necessarily separate her personal views from her professional/ WPI views and take what she says to be WPI's stance, for good or bad.

I've heard of companies/ groups, etc. hiring someone who isn't connected directly with them to blog/ write/ talk about their products, views, etc. so that said views/ products/ etc. are put out into the public but without there being a direct connection to the company. In some cases, this is done discreetly but in other cases, it's out in the open. This might have been something WPI could have considered doing.

A question WPI should ponder is do you want to be popular or do you want to be effective? It's not necessarily black and white of course.

 

[Sam Carter]

....
Even if the specificity of the antibodies is unknown, the antibody results back-up the WPI's PCR results...

Indeed. So let's have replication studies please.

That's a pretty cheap shot, Bob, and not in the spirit of the conversation.

These findings are only meaningful if they can be *reproduced*.

 

[Bob]

That's a pretty cheap shot, Bob, and not in the spirit of the conversation.

These findings are only meaningful if they can be *reproduced*.

That wasn't a cheap shot Sam. I was being serious, even though I used casual phrasing.
You said that the antibody results are only meaningful if they can be replicated, so I remarked that we should have replication studies.
What I actually meant was that it would be a good thing to allow replication studies to be carried out before we come to any conclusions about XMRV. This is all a work in progress.

Indeed, the WPI's and Alter's results do need to be reproduced.
There are now a number of reported positive studies in the pipeline, including Beiger, Hanson, De Meirlier.
There is an immense amount of XMRV research going on at the moment, so it will be interesting to see how it all works out.

At the moment there are about 5 positive prostate cancer studies as well, along with all of the other XMRV research which has confirmed that XMRV lives in human cells.
Switzer of the CDC has now detected XMRV in prostate cancer but admits that he hasn't got adequate technology to detect the low copy numbers in the blood of XMRV positive patients.

We are in the very early days of XMRV/PMRV research, and there is a lot research to do, and a lot to find out about it.
None of the contamination theories are conclusive, and all have been challenged.
So I personally think that it is a good idea to encourage the research to continue, and wait to see how it works out.

 

[toddm1960]

Sam no one has tried to exactly reproduce their process, THEY NEED A SHOT!

As far as toning down, really?.....sitting back has gotten us great results. Tone it down? Really? We need a fighter, we need to stand up and be heard. This is my life being tossed out, I for one love her standing up and shouting her side of the story. Bring on more of it.

Sorry...........off my soap box, but it's how I feel and I have just as much right to say it as other side.

 

[Sam Carter]

That wasn't a cheap shot Sam. I was being serious.
You said that the antibody results are only meaningful if they can be replicated, so I remarked that we should have replication studies.
What I actually meant was that it would be a good thing to allow replication studies to be carried out before we come to any conclusions about XMRV.

Indeed, the WPI's and Alter's results do need to be reproduced, and that's a work in progress.
There are a number of reported unpublished positive studies in the pipeline, including Beiger, Hanson, De Meirlier.
There is an immense amount of XMRV research going on at the moment, so it will be interesting to see how it all works out.

At the moment there are about 5 positive prostate studies as well, along with all of the other XMRV research which has confirmed that XMRV lives in human cells.
Switzer of the CDC has now detected XMRV in prostate cancer but admits that he hasn't got adequate technology to detect the low copy numbers in the blood of XMRV positive patients.

Sorry, Bob, I take that back about the cheap shot. I'm knackered and this has got a whole lot more heated than I expected or wanted!

My guess is that, despite superficial differences, our position on XMRV isn't a million miles apart.

Off to bed for me .......

 

[Bob]

Sorry, Bob, I take that back about the cheap shot. I'm knackered and this has got a whole lot more heated than I expected or wanted!

My guess is that, despite superficial differences, our position on XMRV isn't a million miles apart.

Off to bed for me .......

OK Sam, no problems.
I don't know what your position on XMRV is, but I admit that I do get irritated when I perceive people saying that XMRV is not associated with ME, when there just isn't any conclusive evidence for that yet. I just can't see what is wrong with allowing the research to give us the answers, and it hasn't done that yet.
I'm over-tired as well, and i'm off to bed now too!

 

[eric_s]

Hi Eric,

If you ever get a chance to watch the pre-conference, round-table discussion between the presenters at IiME 2010 you'll see that Prof Huber was somewhat marginalised and not given a full opportunity to speak. She tried to bring up the results of her preliminary XMRV research (the research which indicated contamination as a possible explanation) but struggled to get her voice heard and left the meeting midway, clearly upset.

It was frustrating to watch because she evidently had something important to contribute and an open discussion with Dr. M at that point would have been of great value.

It's become quite popular of late to knock Prof Huber (I'm not suggesting you are, Eric) despite her long-term commitment to biomedical research, just because she doesn't believe XMRV/MLVs contribute to the pathogenesis of ME.

When Lombardi and colleagues published their paper in Science she rated the paper as "exceptional" on the Faculty of 1000 website and said:

"For the first time, we now have evidence that an infectious agent is associated with this chronic disease. It remains to be shown whether XMRV is directly responsible for the symptoms, or induces expression of other cellular genes that lead to an inflammatory response. Regardless, these new findings open the door for therapeutic intervention of this dreaded disease."

These are not the words of a scientist with a closed mind and it was only when her own research could not reproduce the Lombardi findings that she began to look for alternative explanations.

Sam

Hi Sam

I've never seen the DVD, that's true. It would certainly be interesting. Also i don't know about Brigitte Huber's other research. I just mentioned this story as an example of conduct that, in my opinion, is not ok, in order to show there are reasons for questioning the motives of some players.

I don't know if the speakers at this conference get paid, i would guess that they are, but in any case there is probably some sort of contract. And if the agreement is that you are going to speak about a certain topic and not about another one, that would be against the interest of the organiser of the conference, i think it's not ok to break the agreement and speak about something that hurts the cause of the organiser.

 

[InvertedTree]

Does anyone know what happened to Kristin Loomis' daughter/son? Because Dr. Snyderman said "had". Also it would be interesting to know more about the nature of the relationship between Konstance Knox and the WPI. I always thought it was a contract between the WPI and the Wisconsin Viral Research Group (with Konstance Knox being employed there) and not that Konstance Knox was employed by the WPI. But the recent blog entry sounded a bit as if she was employed by the WPI.

They both had a great response to Valcyte, then relapsed but were subsequently treated again with Valcyte and immune modulators. Both are back working or at least they were a couple years ago.