Lipkin presenting at WPI

RustyJ · Jun 29, 2011

I have no reason to doubt that the WPI is aware of the dangers of the Lipkin study and of the potential for all or most of the samples to be negative (and I have some difficulty seeing where any postives are going to come from - every sample contributor has their own iron in the fire; none are primarily pro-XMRV.) So I assume they are holding something back, or should be holding something back. This was alluded to by de Meirleir and Mikovits, and may be the source of all the optimism.

Jemal · Jun 29, 2011

eric_s said:
I liked that it seems as if Lipkin gets along well with Annette Whittemore and Frank Ruscetti. But he also said he doesn't believe it's one agent behind all cases of ME/CFS.

He's probably right about that though. ME/CFS is somewhat of a trashbin diagnosis in some countries, so I don't think XMRV/MLV's will be found in 100% of ME/CFS patients. There's bound to be people amongst us that have other, unrecognized diseases that have a lot of overlapping symptoms. These could be very serious diseases as well, with entirely different causes.

I don't think the trashbin is as bad as some scientists and patients believe, though. I think we will see very high percentages. Just not 100%.

Lipkin could also mean it takes multiple agents to create a disease state like ME/CFS. XMRV to hurt the immune system and viruses like EBV and CMV to bring down the hammer (for example).

justinreilly · Jun 29, 2011

Esther12 said:
aside from some extraordinary conspiracy (and I really don't think it's in the interests of those in power to allow a retrovirus to spread unchecked through their populations!), I don't see how it could go wrong.

What do you think they have been doing for the last 30 years?!!

It may or may not have been HGRVs, or the DeFreitas RV, but it's probably some RV and even if not they have definitely been waging a war on ME science and patients and letting the disease itself spread unchecked.

justinreilly · Jun 29, 2011

Esther12 said:
I think that the independent blinding will deal with concerns about contamination. So long as there's any possible difference in the way CFS and control samples are handled by the WPI, higher positive rates for CFs samples can be explained in this way. This study removes that concern.

WPI has already published (i believe in the May 2010 addendum to the Lombardi study) in a journal that the samples were blinded and handled in exactly the same fashion. The fact that this is totally dismissed by the 'contamination people' disturbs me because they are basically saying, by giving this zero weight, that WPI are lying (or perhaps extremely incompetent). I understand that bias of a lab can have subtle influence on the outcome (even in the absence of lying and fraud) but the statement by WPI that all the samples were handled in exactly the same way seems pretty straightforward to me- either they did or they didn't and they're lying about it. The Lipkin study would be conclusive if it arrived at the same results because Lipkin doesn't lie and WPI does?

justinreilly · Jun 29, 2011

eric_s said:
If only they would stop the "chronic fatigue" thing... CFS would already be bad enough. I really think that in any occasion where somebody uses the term CF, we should correct them. Not in an annoying way, but i think we have a right that they use the correct name and don't say something that's just not correct and misleading. Annette Whittemore should tell Dr. Lipkin.

I liked that it seems as if Lipkin gets along well with Annette Whittemore and Frank Ruscetti. But he also said he doesn't believe it's one agent behind all cases of ME/CFS.

We definitely should interrupt to correct. "CF" is totally unacceptable. They should all know better by now. Just yell out "ME!" whenever someone says "CF"

Every meeting or conference should use the 'looney fine' that one Canadian conference instituted that fined everyone that said CF a looney for each time. A Looney is a canadian quarter I think. Yell out "Looney!" when someone says "CF"

I'm totally serious about this. This would help us out alot (and be fun).

Esther12 · Jun 29, 2011

The samples came from different sources though, so can't have been treated in exactly the same way as one another - the WPI were quite honest and open about this. With the Lipkin study, all samples are being drawn in the same way, stored in the same way, tested in the same way. With the Science paper, it's possible that contamination occurred prior to blinding.

I quite agree that lots of CFS 'science' has been so bad it could almost count as a conspiracy... but I think that's largely down to ignorance, prejudice, and the difficulty of doing good research for a dustbin diagnosis like CFS. With XMRV, we're playing a very different game. A specific, testable claim has been made that will either be confirmed or not. I wish something like the Lipkin study had been set up earlier, but now that it's under-way it looks like exactly the sort study I wanted done.

shannah · Jun 29, 2011

justinreilly said:
We definitely should interrupt to correct. "CF" is totally unacceptable. They should all know better by now. Just yell out "ME!" whenever someone says "CF"

Every meeting or conference should use the 'looney fine' that one Canadian conference instituted that fined everyone that said CF a looney for each time. A Looney is a canadian quarter I think. Yell out "Looney!" when someone says "CF"

I'm totally serious about this. This would help us out alot (and be fun).

Cute and creative Justin! By the way, a loonie is a $1.00 coin in Canada, a twoonie is a $2.00 coin. Both are quite a bit larger than a quarter.

shannah · Jun 29, 2011

Here's a very short (1:27 minutes) You tube clip from that day

"It smells like a viral disease." - Ian Lipkin 6/24/2011

http://www.youtube.com/watch?v=dW5FwCWoelY&feature=youtube_gdata_player

Lipkin says "It would not? at all surprise me if it was a common viral infection to which people had an uncommon response."

At this late date going forward about to start the study, I don't find this statement very reassuring for a promising outcome.

CBS · Jun 29, 2011

shannah said:
Lipkin says "It would not? at all surprise me if it was a common viral infection to which people had an uncommon response."

At this late date going forward about to start the study, I don't find this statement very reassuring for a promising outcome.

Thanks for the link to the video.

He also mentioned a 1999 study in which he and four other investigators tested for Borna Virus as a possible causal agent in CFS (Absence of evidence of Borna disease virus infection in Swedish patients with Chronic Fatigue Syndrome. Journal of NeuroVirology (1999) 5, 495-499). The Borna virus results were negative and a large majority of that paper focuses on the negative Borna virus testing.

In his address at the WPI, Lipkin states that he came away feeling like there was evidence for an alternative conclusion to the findings of that study. The paper barely mentions it but Lipkin says that is was his opinion that they found evidence for immune activation (elevated polyclonal B-cells) in CFS patients.

If all Lipkin does is serve as an XMRV referee, I would consider it a significant lost opportunity given all of the sequencing tools at his disposal.

sleepy237 · Jun 29, 2011

I think this presentation highlighted what an exclusive and excluded group we are. I dont want to give negative feedback but as Lipkin started the presentation with Pandoras box and all that was left was hope, by the end of the presentation I was left hopeless. The only true hope does truly belong with the WPI.

eric_s · Jun 30, 2011

CBS said:
If all Lipkin does is serve as an XMRV referee, I would consider it a significant lost opportunity given all of the sequencing tools at his disposal.

Around 67:15 (didn't check again now, but i think it's there) he basically says: "Please give me a cheque, then i'm more than happy to do it". So it seems, once again, the problem is the lacking funding. And Judy is nodding about 100 times while he says that.

Depending on the outcome of the Lipkin study he might not be the one we want to be associated with, but i really think this is our main problem and what we should think about most. How do we get more funding?

Recovery Soon · Jun 30, 2011

justinreilly said:
Yell out "Looney!" when someone says "CF"

So far that hasn't worked out so well.

shannah · Jun 30, 2011

Transcript in 8 parts available at

http://www.facebook.com/pages/XMRV-Global-Advocacy/167610313296995

eric_s · Jun 30, 2011

Thanks. Now there is XMRV Global Action and XMRV Global Advocacy

What (who) exactly is XMRV Global Advocacy?

Bob · Jun 30, 2011

Rrrr · Jun 30, 2011

on this clip lipkin says a wealthy NY philanthropist is donating to his group so they can find biomarkers

http://www.youtube.com/watch?v=cFoVyxF3v_o&NR=1

Daffodil · Jul 2, 2011

i dont really understand..lipkin says he can do the work if a person donates a million dollars...but havent people raised 100's of millions for diseases like MS, ALS, Parkinson's, etc. over the years? why haven't they found pathogens for those diseases?

Rrrr · Jul 2, 2011

eric_s said:
Around 67:15 (didn't check again now, but i think it's there) he basically says: "Please give me a cheque, then i'm more than happy to do it". So it seems, once again, the problem is the lacking funding. And Judy is nodding about 100 times while he says that.

Depending on the outcome of the Lipkin study he might not be the one we want to be associated with, but i really think this is our main problem and what we should think about most. How do we get more funding?

we petition HHS for that money.

eric_s · Jul 2, 2011

I don't know. Did Lipkin look for pathogens in these groups? If so, then maybe there are no pathogens involved there (usually) or he is not able to find them?

eric_s · Jul 2, 2011

Rrrr said:
we petition HHS for that money.

I will sign it, if you accept non-US citizens who live outside of the USA.

Lipkin presenting at WPI

Contaminated Cell Line 'RustyJ'

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