April 7/8 NIH State of Knowledge Conference - watch online to show our support!

[eric_s]

Thanks a lot, Anne!

 

[Boule de feu]

eric, this mornings sessions are up on youtube if you want to watch them now.
http://www.youtube.com/user/vikwalk#p/u/4/Dktu4RR5QEU

Thank you, Anne.

 

[eric_s]

What the ... is wrong with this guy Coffin?? He seriously said "We should leave this virus that we know as XMRV behind"... I can't believe what i just heard. It's true that it could just be a contaminant, even though i don't find that possibility likely, but how could anyone of his intelligence say this? If there's the possibility that this virus could be in the population and the blood supply and causing a number of diseases including cancers??? Before it's proven that there was contamination i think "leaving XMRV behind" and just hoping it will go away if you don't look at it is beyond negligent...

 

[Jim]

who is talking now and why doesn't she know about the follow-up to Black's paper? the one that said, wait, actually the CFS patients got worse and did reach an activity ceiling?

i thought she was way off. i think she said she has not been in the field for a while and it showed. she seemed to conclude cfs was a perceived exertion illness. i think snell and mc cully and light and the nmh/pots folk make her look incompetent.

 

[eric_s]

If he wants to leave XMRV behind, why is he doing a study? In this case the only reason for doing that study could be to disprove the association between XMRV and ME/CFS. Should you really do a study, if you're not objective?

By the way are we really sure that the WPI is participating in this study? I think that was the "Maldarelli" study he was talking about there.

 

[Riley]

Coffin came off pretty poorly and was not convincing at all IMHO.

 

[eric_s]

Maybe he seems a bit "strange" beacuse he was having a cold (i think i read that).

But when i look at this video http://www.youtube.com/user/vikwalk#p/u/2/b-1K7i4Sjvs, i will make it official and say i don't trust him. Maybe that's not a smart thing to say and i had a pretty hard day because i was in the coach for hours, but that's the feeling i get when i see him speak there. And he should not be so aggressive. He is acting like someone who thinks when he says it's over, it's over. Sorry John, but that's not the case.

 

[LJS]

Coffin came off pretty poorly and was not convincing at all IMHO.

I saw it the other way. I thought Coffins presentation was just as or more convincing then Mikovits presentation. It just shows that the BWG study will answer an awful lot of questions. If the WPI can not pick out the CFS patients in the study then the research community will move on to other things.

 

[eric_s]

If it is done correctly. Can we be 100% sure of that? If you look how many failed studies there were (either the positive or the negative ones, but probably one side is wrong) and how the people involved in this story are acting, i don't feel convinced enough to have my life and those of some more millions depend on it.

 

[LJS]

If it is done correctly. Can we be 100% sure of that? If you look how many failed studies there were (either the positive or the negative ones, but probably one side is wrong) and how the people involved in this story are acting, i don't feel convinced enough to have my life and those of some more millions depend on it.

If the WPI and the Lo/Alter lab can not pick out XMRV in the BWG study and the other study discussed in the webcast that I was not aware of it is over. I do not see any other way to look at it, if they do find it however you will see a big influx if interest again.

 

[eric_s]

You say it will be over. We will see, but if we are lucky things will not go that way.

I think a better approach would be to say once the contamination of the labs and positive samples are proven it's over. Once all the positive results can be proven to stem from contamination. There's much too much at stake to make it all depend on one or two studies where so many things could quite easily go wrong. To me this does not seem safe enough.

 

[ixchelkali]

I came across this quote from Marcello Truzzi a couple of days ago during a discussion here of scientific skepticism vs. pseudoskepticism. It seems pertinant to the, ahem, disagreement between Judy Mikovits and John Coffin:

In science, the burden of proof falls upon the claimant; and the more extraordinary a claim, the heavier is the burden of proof demanded. The true skeptic takes an agnostic position, one that says the claim is not proved rather than disproved. He asserts that the claimant has not borne the burden of proof and that science must continue to build its cognitive map of reality without incorporating the extraordinary claim as a new "fact." Since the true skeptic does not assert a claim, he has no burden to prove anything. He just goes on using the established theories of "conventional science" as usual. But if a critic asserts that there is evidence for disproof, that he has a negative hypothesis --saying, for instance, that a seeming psi result was actually due to an artifact--he is making a claim and therefore also has to bear a burden of proof.

(emphasis mine)

All I'm asking is for true scientific skepticism, which allows the science to go forward and "build its cognitive map of reality." Saying that XMRV is over and it's time to move on doesn't do that, in my opinion. I don't think that the contamination theorists have met their burden of proof. Coffin did present a hypothetical answer to Nancy Klimas' question about how contamination could explain the differences between controls and subjects, but is there evidence? And he really didn't address the question of antigens/antibodies. At this point the contamination theories have raised important issues that must be addressed, but nothing is proven yet, on either side.

I think it is very premature to call a halt. And I think it's wrong to say that the Lipkin study will decide it one way or the other. The science on this is too new, there are too many variables and unknowns, to let any one study be make-it-or-break-it. But that's exactly what's going to happen, I'm afraid.

 

[eric_s]

Only if we let it happen. What i've seen here convinces me even more that we should try to take more control of things. We see a lot of people that to me don't seem objective. Everybody seems to fight for his own person, his own ego and theories. In the end we can only really trust other people with ME/CFS, we know what it means and we want the same thing.

 

[WillowJ]

I came across this quote from Marcello Truzzi a couple of days ago during a discussion here of scientific skepticism vs. pseudoskepticism. It seems pertinant to the, ahem, disagreement between Judy Mikovits and John Coffin:

(emphasis mine)

All I'm asking is for true scientific skepticism, which allows the science to go forward and "build its cognitive map of reality." Saying that XMRV is over and it's time to move on doesn't do that, in my opinion. I don't think that the contamination theorists have met their burden of proof. Coffin did present a hypothetical answer to Nancy Klimas' question about how contamination could explain the differences between controls and subjects, but is there evidence? And he really didn't address the question of antigens/antibodies. At this point the contamination theories have raised important issues that must be addressed, but nothing is proven yet, on either side.

I think it is very premature to call a halt. And I think it's wrong to say that the Lipkin study will decide it one way or the other. The science on this is too new, there are too many variables and unknowns, to let any one study be make-it-or-break-it.

absolutely correct

 

[WillowJ]

i thought she was way off. i think she said she has not been in the field for a while and it showed. she seemed to conclude cfs was a perceived exertion illness. i think snell and mc cully and light and the nmh/pots folk make her look incompetent.

ok, good that the others were better and showed how little she knew. thank you! I had to go to an appointment and did not get to see Light or McCully. I did get to see much of Snell, which was great, and a little of the OI presentor

 

[LJS]

You say it will be over. We will see, but if we are lucky things will not go that way.

I think a better approach would be to say once the contamination of the labs and positive samples are proven it's over. Once all the positive results can be proven to stem from contamination. There's much too much at stake to make it all depend on one or two studies where so many things could quite easily go wrong. To me this does not seem safe enough.

What I mean by my statement that it will be over is that interest and funding will dry up if the WPI or NIH labs can not pick out the XMRV samples. There of coarse would still be unanswered questions but there would no longer be many resources available to answer those questions.

 

[heapsreal]

Why does coffin say contamination, but then has no proof, same thing they did to defretus. Its just a deflection technique. And because coffin cant find it means he doesnt know what he's doing. if WPI had contamination then wouldnt the controls have the same positive rates as the cfs patients???

 

[Jim]

ok, good that the others were better and showed how little she knew. thank you! I had to go to an appointment and did not get to see Light or McCully. I did get to see much of Snell, which was great, and a little of the OI presentor

just fyi, mc cully wasn't there, but his work was quickly referenced. i corresponded with mc cully years back to see if deconditioning could explain the lower pwc exercise performance. he said he believed deconditioning was not a factor. also, i heard back from dr light's husband alan regarding their findings and if deconditioning could explain the results. that perhaps pwc's are deconditioned and thus the exercise was a bigger assault to the body and thus perhaps that could explain the over-sized cytokine response. he convincingly argued no, it was not deconditioning. too bad dr light didn't get a chance to reply when she was challenged today by dr. snell, when he said maximal exercise is a better test as the exercise test dr light used can bring in questions of deconditioning. still, snell is on the side that it is not deconditioning or an effort syndrome.

 

[WillowJ]

Thanks so much for the info.

I'm glad they're having the "what intensity of test is needed" discussion; I hope that continues.

 

[urbantravels]

The PFL is pretty firm on the fact that their results could not possibly be explained by deconditioning, since no merely deconditioned person shows the deterioration in function 24 hours later after an initial exercise challenge that ME/CFS patients do. There are more specific reasons why they say their results are inconsistent with deconditioning, but I couldn't cite those for you right this moment.