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

[fla]

From the parts I had the energy to watch:

• Overall a good meeting lots of science, little psychobabble
• Was surprised they let someone talk about the elephant in the room
• Pacific labs type stuff should be used by all studies to objectively measure outcome
• We need more patient testimonials that don't end up in tears because psychobabblers feed on it

 

[ixchelkali]

if you listen carefully, every single thing judy mikovits said is true, on a factual level.

and her frustration and anger is justified. it is not just her. she is representing a whole camp of researchers, including the highly respected frank ruscetti and sandra ruscetti (national cancer institute) and dr lo (FDA).

i am very happy to have a fighter like her on my side, on my team. she is a brave and bold leader. eventually, she'll likely get the Lasker Award (as has Dr. Alter for his breakthrough Hep C work).

if it was not for her and her team, this meeting would not be happening, and CFS would have remained in the dark ages. we are moving forward, we are getting recognition now, all because of her and her team and their research.

kudos to dennis mangen for organizing this, of course. great job.

Yes, it's true, and sure, her anger is justified. But it's not helping her case (or ours). It makes it easier for people to dismiss what she's saying. It plays into the hysterical female stereotype. Maybe things shouldn't be that way, but they are. Speaking the same truths coolly would be more effective, I think.

 

[heapsreal]

Yes, it's true, and sure, her anger is justified. But it's not helping her case (or ours). It makes it easier for people to dismiss what she's saying. It plays into the hysterical female stereotype. Maybe things shouldn't be that way, but they are. Speaking the same truths coolly would be more effective, I think.

i dont think she comes across as a hysterical female but a strong, determined, intellegent female who is gunning for what she knows is right. i like how she told the neurologist that his study on spinal fluid being negative was a bad study and then she explained why and he didnt even have the descencie to listen to her, he just swivled his chair away from her and put his back to her. no wonder she's standing her ground, they just dont want to listen. They have made there mind up along time ago, i think it was 1984, lake Tahoe.

 

[ixchelkali]

I thought Vivian Pinn was disingenuous. She sounded all warm and gung-ho and helpful and sincere, but the Office of Research on Women's Health has done NOTHING for ME/CFS. On the contrary, they've been a major stumbling block. Eleanor Hanna has sat smugly in the CFSAC meetings stonewalling every suggestion that the NIH might do something, anything, to help. She argued against any motion the CFSAC made that called for action of any kind (like calling for a ban on CFS blood donors).

Can anyone name one thing besides this conference that the ORWH has done for ME/CFS in the last two years? Or anything they've ever done to get this disease to be taken seriously?

 

[Cort]

I think he may have been thinking out loud. He changed his position later in that conversation. Explaining how others are still working on XMRV including Lipkin and the BWG. But managed to say that his NCI study will be out soon. I can bet what that will find.

Remember that Ruscetti is from the NCI and he was a co-author of the paper and he was the one that really got the NCI interested in XMRV. My guess is that NCI poured alot more resources into XMRV than any other agency. I think Bagni is there as we;;. The study could be from Ruscetti and if it isn't we have to start asking why is he not publishing while his colleagues are? He was the biggest name on the Science paper - both Dusty Miller and Stoye said once they say his name on there they got excited. - He is one guy who could turn this around - but where is he? His colleagues are publishing frequently...who knows maybe that paper is from him...

 

[Cort]

i think coffin is backed into a corner with people around him alot more knowledgable then he will ever be on the subject. he was poopin his pants, lol, with mass hysteria!!

Time and the BWG studies will tell who's right but Coffin is the author of a seminal text on retrovirology and is a co-author of about 190 studies. He is very knowledgeable...I think Ruscetti and Dusty miller have more papers published -- lets just say they're all in that top tier...and Coffin and Ruscetti have a difference of opinion...

 

[heapsreal]

Was there any mention of any other xmrv positive studies done outside of WPI of late??

 

[ixchelkali]

i dont think she comes across as a hysterical female but a strong, determined, intellegent female who is gunning for what she knows is right. i like how she told the neurologist that his study on spinal fluid being negative was a bad study and then she explained why and he didnt even have the descencie to listen to her, he just swivled his chair away from her and put his back to her. no wonder she's standing her ground, they just dont want to listen. They have made there mind up along time ago, i think it was 1984, lake Tahoe.

I wasn't saying she is a hysterical female, I'm saying that when she loses her temper like that, it allows others to treat her like a hysterical female. It makes it easier for them to dismiss what she's saying. If she had been speaking calmly to Natelson and he turned away from her, people would have thought he was being a jerk. But because she had spoken harshly, people would be more sympathetic to him.

I'm not saying she doesn't have good reason to be angry. I'm saying that when she lets it show as she did at this meeting, she isn't as effective. She plays into the hands of people who would like to dismiss her, and may even make some people who are on the fence believe that the opposite side is more reasonable. It would be nice if scientists didn't base their opinions on personalities, but they aren't always rational and objective. I'm afraid she's making things harder on herself, making harder to find funding, etc.

 

[Cort]

I think in one of the videos from the XMRV workshop last September Coffin said he thinks we can be pretty confident about XMRV playing a role in ME/CFS, only that he's a bit worried about how easily PCR can lead to false positives. Now he said it should be left behind.

I don't understand what's going on but i don't like it and it's even pretty scary. This should be about science and the truth and besides that it's about something as irrelevant as the health of the human race and what we mostly see is people fighting each other in such a way that at least to me it seems as if they basically care about their own career, their own interest. * that.

If i look at the Coffin video it feels like a gathering of Mafia capos where everybody is making plans how to kill the others and get control of the whole thing.
I don't want that sort of mentality deciding my fate.

If Coffin turns out to be wrong, he certainly has done a lot of damage to his reputation. Would he take such a risk? I don't know. But even though i'm no scientist i think there's a lot that his hypothesis can't explain. What about the sequences Lo and Alter have found, for example? Can they be explained by recombination of preXMRV1 and preXMRV2?

Many people say that XMRV is losing interest of researchers, but just look at all the XMRV-related events... University of Alberta, NYAS, this workshop... all in a couple of weeks. It does not look dead at all at this moment.

Its in every researchers best interest to be right...given the amount of interest in XMRV and the studies that are going on - I think everyone can conclude that we will get the answer at some point; ie there will be a consensus on it....Everybody seems to say that if the WPI can identify the positives in the Lipkin and BWG studies - that will change everything..

.I think what you see are researchers on both sides saying - we don't feel we need to see those studies before we come to a conclusion....Essentially both sides are saying we feel we know how the upcoming studies will turn out....

Time will tell whom history will reward and whose reputation will rise or fall.

Remember the WPI is part of both studies - they have agreed to the protocols of both studies - so those studies are good enough...

 

[Cort]

one of the speakers today talked about how you collect the samples in any study will dictate the study results. if you collect them one way, the results will be A, if you collect them another way, the results will be B.

i really think there are SO many ways that other labs can *not* follow the WPI protocol for the study that will cause them to not find xmrv.

we need an exact replication study.

and recall: cleveland clinic and the ruscetti team also found xmrv, not just wpi.

Somewhere I heard that Lipkin's is an exact replication study...same reagants, same test tubes, etc..

The Singh study is finished by the way...not sure when it will come out - no telling about that - but it is done according to Kathleen light.

 

[Cort]

I thought there had not been any replication study yet?



I didn't feel that the arguments against contamination were really answered by Dr Coffin. Maybe I missed something.

My guess is that Coffin is saying that given what we've learned it can't be anything but contamination while Judy is saying given how we've looked for contamination it can't be contamination....they are really different types of arguments...Coffin's argument is inferential and Alter is right that no one has directly shown that contamination is the cause of the WPI's results - there is no smoking gun...no test in which contamination showed up...no reagant that has shown to be contaminated. Coffin doesn't care - he believes plenty of ways have been shown that could cause contamination and his guess is that there are many more ways out there and one of them hit the WPI.

Then again the WPI has looked and looked apparently...and they have lots of control samples that have tested negative (a big deal!)...Like Alter said - this is the most confusing research he has ever done - and he's been researching for a long time. I talked to Judy and as she showed at the Workshop she is very, very confident....as is Annette....

I say lets wait for the BWG and Lipkin studies - although they will apparently take quite a while.

 

[Cort]

As was alluded to by the woman closing the conference, I was so disappointed that there was not more time scheduled for interaction and discussion between the experts. I feel the same way watching the CFSAC meetings.

All the brains and knowledge were right there in the room to discuss biokmarkers, ME/CFS definition, etc.

I want to see a clear path forward, to set-up add'l meetings, to brainstorm together, to continue talking. We get so teasingly close to a good discussion and then time is called! Arrgh :headache:

I agree completely...I think she should allow 15 minutes for a presentation and then 15 minutes for talking...

 

[Rrrr]

Hi Rrrr,

I agree that her anger and frustration is justified, but as urbantravels says, she perhaps lost her cool a little in the process and may have come off as a little rude.

But I do disagree with your first claim, that everything she's said is 'factually true'.

I'll repost my post from several pages back, which features a quote of hers, and also Coffin...and perhaps you or someone else can answer the question I posted:

"What is Dr. Mikovits referring to in this clip (at 7:40 in) when she talks about 'at least six studies with thousands of patients from around the world'?

http://www.youtube.com/watch?v=Dktu4...el_video_title

I'm not exactly up to speed (in more ways than one), but haven't most of the studies involved small numbers of patients/controls? Some of them have been extremely small studies. Is she perhaps talking about unpublished studies?

Thanks in advance.

d.

p.s. Also, it seems like Coffin hasn't completely ruled out a retroviral link...he's just not sure about 'the virus we know as XMRV'.

He goes on to say, "enough evidence has been presented that there is some infectious cause here and maybe another retrovirus is possible and it's worth continuing to do it..."

hi dannybex,

i stand by my statement that i have never heard anything unfactual from judy mikovits, even in the face of amazing attempts to discredit her and ruscetti's seminal work. (elaine defeitas all over again?)

in terms of the thousands of patients and 6 studies. i know i was part of one study at WPI, which found me to be xmrv+, and that one had hundreds of patients in it over a year ago. so i am not sure how many are in it now. and then there was the UK study. and then there were all the patients who were part of the ruscetti study at NCI, and the cleveland clinic study. but i really don't know where the "thousands" number comes from. it could be that the WPI considers all the xmvr testing going on in their lab a "study" -- but i have no basis for that statement.

all i know is that mikovits is highly ethical and can't afford to exagerate or lie. she is being watched too closely. she HAS to dot all her i's and cross all her t's and be extraordinarily careful in what facts she states. she may not state them sweetly and she make talk like a bull in a china shop, but i doubt she will say anything that is an exaggeration, or she'll get nailed. and swiftly discredited. they are waiting to pounce on her and WPI.

i really appreciate her hardheadedness and her aggression. i think if she were male she'd be called steadfast and persistant and her aggression would be perceived as a positive quality.

i think she thinks she is fighting for patients' lives.

and she is.

after 21 yrs of my life lost to this ilness, much of it spent in bed, i want a fighter in my camp.

i think i'll go donate to WPI. again. i encourage everyone who wants a fighter fighting for them to do the same thing.

 

[ixchelkali]

My guess is that Coffin is saying that given what we've learned it can't be anything but contamination while Judy is saying given how we've looked for contamination it can't be contamination....they are really different types of arguments...Coffin's argument is inferential and Alter is right that no one has directly shown that contamination is the cause of the WPI's results - there is no smoking gun...no test in which contamination showed up...no reagant that has shown to be contaminated. Coffin doesn't care - he believes plenty of ways have been shown that could cause contamination and his guess is that there are many more ways out there and one of them hit the WPI.

Then again the WPI has looked and looked apparently...and they have lots of control samples that have tested negative (a big deal!)...Like Alter said - this is the most confusing research he has ever done - and he's been researching for a long time. I talked to Judy and as she showed at the Workshop she is very, very confident....as is Annette....

I say lets wait for the BWG and Lipkin studies - although they will apparently take quite a while.

I agree. I do think that Coffin is a top-tier scientist. I think he went into this open minded and hopeful, and that the evidence he saw changed his mind. But I don't think it's good science to say that it IS contamination at this point. Say that we have evidence that it COULD BE contamination. But there are too many maybes still out there. Nancy Klimas asked a couple of good questions. "What about the difference in prevalence between controls and subject?" Well, the samples COULD HAVE BEEN handled differently. But were they? That's just hypothesizing. You shouldn't abandon research based on a hypothesis, you should do the study and find out. Since he is now hypothesizing a negative, that it's contamination, he has to meet as big a burden of proof as those who are proposing that XMRV is a human infection, and he hasn't. He is speaking prematurely, and there's too much at stake here if he's wrong. He should be saying "Wait for the Lipkin study," not "Leave XMRV behind." Or he should be trying to find out if it really is contamination.

 

[Riley]

Did Alter say that BWG and lipkin would be complete this year?

 

[Sing]

Dr. Benjamin Natelson is a neurologist who runs the Pain and Fatigue Center in Manhattan. I got a good impression of him, contrary to some others here. I thought his repeating the idea of the brain and its functions/dysfunctions in ME-CFS was useful when so much attention was being given to the immune system. I don't think he said, or meant, that there is NO involvement of the immune system.

In ME-CFS we have a problem which almost certainly began with an infectious agent or did so in most cases, yet, in the ongoing illness pattern which becomes established, the brain and nervous system is directing much of the traffic. And certainly most of the disabling brain fog, insomnia, pain, dysautonomia and weaknesses are neurological effects. So should research attention be focussed primarily on whatever caused this or whatever is directing it once it is established?

The answer is hopefully a both/and, not an either/or.

 

[Sing]

Did Alter say that BWG and lipkin would be complete this year?

This afternoon I heard that the results of these studies ought to come out this year. I heard "June" mentioned, but maybe that was just to do the study and not when we'd see the results. Does anyone else have a clearer idea?

 

[heapsreal]

Dr. Benjamin Natelson is a neurologist who runs the Pain and Fatigue Center in Manhattan. I got a good impression of him, contrary to some others here. I thought his repeating the idea of the brain and its functions/dysfunctions in ME-CFS was useful when so much attention was being given to the immune system. I don't think he said, or meant, that there is NO involvement of the immune system.

In ME-CFS we have a problem which almost certainly began with an infectious agent or did so in most cases, yet, in the ongoing illness pattern which becomes established, the brain and nervous system is directing much of the traffic. And certainly most of the disabling brain fog, insomnia, pain, dysautonomia and weaknesses are neurological effects. So should research attention be focussed primarily on whatever caused this or whatever is directing it once it is established?

The answer is hopefully a both/and, not an either/or.

Was he the neurologist who turned his back on mikovits after talking about negative xmrv in spinal fluid. He seemed to have something to say but switched off when judy said xmrv cant be found in spinal fluid. but there was another neurologist that did a talk that i missed. Please fill us in.

cheers!!!!

 

[Sing]

heapsreal,

I missed part of the conference too, just catching parts each day. So I didn't see the interchange between Natelson and Mikovits, but gather there was a heated point on the subject of spinal fluid and xmrv.

Roy Freeman is a English-sounding neurologist who works in Boston. He referred to Komaroff as a colleague, I remember. He focussed on Dysautonomia, not just Orthostatic Intolerance in its various forms and degrees. He also mentioned parasympathetic dysfunctions and a higher rate of small fiber neuropathy in ME-CFS.

 

[urbantravels]

Dr. Benjamin Natelson is a neurologist who runs the Pain and Fatigue Center in Manhattan. I got a good impression of him, contrary to some others here. I thought his repeating the idea of the brain and its functions/dysfunctions in ME-CFS was useful when so much attention was being given to the immune system. I don't think he said, or meant, that there is NO involvement of the immune system.

I was listening very carefully to his talk. He said there are no significant immune markers in CFS patients, and his lab hasn't looked for them lately, they stopped looking because they "never found any." Several at the table, including Nancy Klimas pointed out how many immune abnormalities have been found in other studies, and he was dismissive and didn't respond to these very valid points.

Several times after that in the course of the conference he repeatedly butted in to different conversations to reiterate his view that research needed to be looking at the brain and nothing but the brain, because "that is the organ affected by this disease."