First International XMRV conference

[aruschima]

For god sake, look at the link i posted !

 

[garcia]

I'm out of this discussion. If you had even volunteered in a research lab that was sending people to conferences you would know how rediculous this all is.

I'm done.

I was part of a research lab that went to conferences. I've even reviewed conference papers. I'm intimately aware of the intense politics that goes on in academia. This kind of thing is not "rediculous[sic]" but in fact very much the norm. Look at the history of the discovery of HIV and the bitter incriminations regarding who should be credited with that discovery. There are high stakes here.

 

[judderwocky]

I was part of a research lab that went to conferences. I've even reviewed conference papers. I'm intimately aware of the intense politics that goes on in academia. This kind of thing is not "rediculous[sic]" but in fact very much the norm. Look at the history of the discovery of HIV and the bitter incriminations regarding who should be credited with that discovery. There are high stakes here.

So. .... did it dawn on any of you that she might have been on the comittee specifically to nominate someone from her own paper to do the keynote address?????

You can't argue the research is being pushed aside because another researcher on the exact same project is presenting. That is a break in logic.

 

[katiemoomoo]

I'm wondering if this is just the list of speakers they've begun to get lined up, not the whole final list. If it is a beginning, it seems like a good start--what is the story?

Please help to lobby the NIH to allow Dr Mikovits to speak at the First International XMRV Conference in September. She is currently excluded from the agenda. This is a bizarre turn of events, especially given that she was the first scientist to isolate XMRV in blood. Let Judy speak !! This link has a template letter and email addresses to send it to.

http://www.facebook.com/notes/xmrv-...clinical-and-public-health-impli/421411181796

 

[V99]

We all know Mikovits is on the scientific committee, but this is nothing to do with her being, cough cough, prevented from giving the presentation.

Read between the words

 

[judderwocky]

We all know Mikovits is on the scientific committee, but this is nothing to do with her being, cough cough, prevented from giving the presentation.

Read between the words

Watch out. I hear the rest of the panel is being run by aliens from the planet Pfizer and that they are going to come in the night to do CBT on us with fake blood panels run by their zethlopod masters.

 

[V99]

Watch out. I hear the rest of the panel is being run by aliens from the planet Pfizer and that they are going to come in the night to do CBT on us with fake blood panels run by their zethlopod masters.

That would be untrue

 

[judderwocky]

That would be untrue

I won't even respond to your comment. I have tried to explain to you that the aliens are coming for your blood panels and t o disparage the WPI, but you won't listen.

 

[V99]

Ok

 

[judderwocky]

Ok

I mean... its the only way to explain it. You see why else would a conference have someone from a paper on the committee, and another person also in the study as a keynote speaker, at that same individual's own laboratory....

Ruscetti is secretly luring Mikovits into his zethlopod dungeon. He only wants to get her in washington so that he can destroy her.... and all CFS research... with her....

in retrospect it was the perfect plan... he would lure her with promises... placing her on the comittee that was directing the conference being apparently paid for by his own NIH labs.... but really it was all a trick... to get her close to the zethlopods in bethseda.

everyone that lives in dc knows the zethlopods live in bethseda....

 

[V99]

Clearly this has nothing to do with Ruscetti, and he will be just as miffed as we are that Mikovits is being pushed out. If he wasn't around who would present this, Klein and Silverman also have little knowledge on CFS and are busy with their presentations. That leaves us will Alter, but that paper isn't published, so the only scientist who can accurately talk about this is Mikovits and they are stopping her from doing so.

 

[garcia]

So. .... did it dawn on any of you that she might have been on the comittee specifically to nominate someone from her own paper to do the keynote address?????

No, I know for a fact this isn't the case. I'm not guessing or speculating. Dr Mikovits did not nominate FR to speak instead of her. Which of them has given countless talks about CFS (e.g. at Invest in ME)? It is not Frank Ruscetti (as great a researcher as he is). It is Judy Mikovits.

Also being on the committee is a much lesser honour than being an invited speaker. Suzanne Vernon is on the committee for example, and she has nothing to do with XMRV.

You can't argue the research is being pushed aside because another researcher on the exact same project is presenting. That is a break in logic.

I'm not arguing "research" is being pushed aside. I'm arguing that Dr Mikovits, the WPI, and the patients are being pushed aside. This is about politics not "research".

 

[Esther12]

Ruscetti is pretty clearly linked with the WPI though, and Mikovits wasn't a CFS expert 12 months ago!

If they're focusing on the virology, Ruscetti is a really respected voice to have on side. It's not like they invited Wessely.

I think we should be pleased to have such a big dog speaking about CFS and starting to make himself more expert on it.

I've only skimmed this thread, so could be missing something, but I don't think there's anything to be upset about here. Personally, Ruscetti would be my first choice for speaking at a conference to other virologist. What he says will be seen as important and won't let people hide behind their problems with the WPI or Mikovits. From what I've seen of the way the two talk of each other, there's no way Ruscetti is trying to screw over Mikovits.

 

[V99]

Wrong Mikovits has been involved in CFS for several years now. Ruscetti only retested the samples and is new to the subject.

Ruscetti would not be doing this if Mikovits were allowed to, he is doing a favour, it does not make it right. This has nothing to do with Ruscetti, this is the organisers trying to push the WPI and Mikovits out.

 

[Frickly]

Judderwocky, This is not an overreaction. We did not wake up one day and decide to start a big controversy over nothing. I emailed Dr. Mikovits and asked her why she was not speaking at the conference. If you would like to ask the same question then I suggest you email wpi. Every person with neuroimmune disease should be outraged that the leader of the research team who found a firm connection between xmrv and me/cfs will not even be speaking at this workshop.

What proof do you have of any of this? The fact that she isn't speaking? have you ever actually been in a research institution? when people collaborate on papers it is VERY common for only one researcher to go to a conference... usually the rest stay behind in the labs TO CONTINUE THE WORK.

WAKE UP. This is making everybody look bad.

I'll ask again.. have any of you talked with her? do you know if she has time to do the conference now? do you really think all of this hinges on a conference? the conferences are designed to get more researchers involved.... that doesn't mean they stop working to run around and socialize. you know the WPI does not have endless funds.... how much of a travel budget have they given her???

Ruscetti's lab has more money, they might have let him do it for budget restraints. you think they would publicize that?

picking shots at the other researchers to idolize the ones you like isn't going to get any of us anywhere. I get that you want her work recognized. but understand that not speaking at a conference is not where you need to be focused.

In the labs and with the people i have known that have been published... its not like a conference is a vacation the whole lab gets to go on. Budgeting for conferences can be very difficult for smaller research institutions, some universities tack on bonuses for certain levels of tenure, certain health institutions provide monies for certain conferences... if ruscetti is speaking they are not blocking the research and they are going to think you are spinning your wheels for nothing.

besides the fact that they are probably aware of the way she is perceived right now. by asking somebody else from the labs that worked on it, they are giving the issues a better chance of hitting with the audience. there isn't the layer of controversy over him that might be over wpi .... you have to let these things play out. this isn't American idol academic research edition. its not about the conference speakers being celebrities. its about competent people educating their peers. ruscetti is more than qualified.

i mean frankly sometimes research groups will pair because one has more travel money etc and will have additional funds to field that sort of thing... there are all sorts of considerations and reducing it down to a cfs pr issue is just going to frustrate people on the other side of the decision making process who will be completely baffled as to why we are upset that one of the senior researchers on the ground breaking paper isn't good enough to present.

not to mention that its being held right on his doorstep by his people.... ?!?!

National Institutes of Health
Lister Hill Center Auditorium
first floor of Building 38A
10 Center Dr
Bethesda, MD 20814
United States

Organizing Secretariat
Virology Education
Bilstraat 106
35872 BJ Utrecht

 

[Kati]

I'm sorry but can someone give me an update... what were mikovitz words about this? they are already presenting somebody from the same paper that was involved in the research aren't they? if ruscetti is at the talk you really don't need to email or write letters about this. i'm surprised you are upset.

Kati:

I haven't got permission to copy Judy's words. She has shared this with many people. Ruscetti will be excellent to present on CFS but the honors ought to go to judy as the main investigator. Then there is the question of what the committee decided Switer from the CDC who found NO XMRV despite given positive controls by WPI in September 2009 and make no mention of that. Switzer is presenting on assay development. Is he really the best person here that they could give the honors to? Someone that found no XMRV and actually told the NIH to put their positive study on hold?

You really don't want to give off the impression that you are meddling in the way these things are done... they obviously asked somebody from the original paper to be there your desire to have her present is somewhat out of touch and i frankly think your gestures are going to be misinterpreted.

Kati

Don't want to start a war but your interpretation is totally wrong. Go do nothing and wait an extra 15 years for the science alone to figure out that Switzer is doing bad science... IIn fact it might be better you do that

telling the committee that one of the few people to have published descent research on this condition that he is not an expert is shooting yourselves in the foot. he is an expert.

Kati

Really @ shooting myself in the foot. Ruscetti is one of the good person, granted. If you asked him, he'd say that Judy is best placed to talk about CFS. But Jjudy has been pushed aside. This is all political.

I would love to know what kind of activism you do... as your avatar says.

 

[Kati]

You are the one that needs to wake up. When researchers do research together they often field conferences. If all you are going on is a bulletin that she was pushed out of the conference then you are really just spinning your wheels about nothing. Did you stop to ask yourself that with all these studies she is planning on autism and xmrv and cfs and pc and all these other cohorts that maybe she would be too busy to speak and additionally that they might let one of the researchers.. perhaps who has a arger travel budget... field one of the first conferences ?

Sorry you got it all wrong. This is a highly political meeting aimed at disproving the XMRV connection with CFS. For more appaling information, go see the brand new CDC website on CFS. And if you are such an activist extraordinaire, it would be awesome if you could pick out what is so wrong with them.

Several people here and elsewhere have done their homework on this conference.

 

[Frickly]

Judderwocky,

I really resent the fact that you have trivilized our concerns by likening them to a fan of American Idol. My whole family is sick. I have spent thousands of dollars trying to help myself and my son. We are just adding diagnsis after diagnosis. ME/CFS, Lyme disease, autism, OCD, tourettes, ADHD. If you think I am just a fan who wants to see my idol on the stage then you are MISTAKEN! I want to get better. I want my son to get better. I want my sister to get better. I am not about to sit around and do nothing while the research community makes tons of money and wins the nobel prize on xmrv cancer research, while xmrv research on neuroimmune disease stops because there is no funding. YOU WAKEUP!

"besides the fact that they are probably aware of the way she is perceived right now. by asking somebody else from the labs that worked on it, they are giving the issues a better chance of hitting with the audience. there isn't the layer of controversy over him that might be over wpi .... you have to let these things play out. this isn't American idol academic research edition. its not about the conference speakers being celebrities. its about competent people educating their peers. ruscetti is more than qualified."

 

[muffin]

I too STRONLY support this issue and suggest that others fight it as well

Dr. Mikovits should have been the key-note speaker for this conference. I just assumed she would be given that she is the true expert in XMRV. I know there are others who are well informed in XMRV, but let's face it, it is Mikovits that really knows this stuff and how to find it.

And I do believe that someone, somehow got to these conference people and made sure that Mikovits was not on the speakers roster but instead, on some "no value" committee. This was deliberate and meant to keep XMRV, CFIDS, WPI out of the spotlight. And also, where the heck are the reps from FDA and NIH? Didn't they do studies on XMRV as well? Further, why is Switzer from the CDC, of the failed - "we did not find XMRV study" - on this speakers roster? Again, his place was to damage XMRV research. Since the CDC did not find XMRV using their assays, why then is HE speaking on this topic? Why not Mikovits, the person who developed painstakingly the current protocols to find this virus?

Yet again, the government health organizations have gotten into this area and are trying to damage XMRV research and credibility. This is a waste of a conference and one that will damage and discredit XMRV and further Retrovirus research. And that's what they are trying to do. Pure and simple. Look at the line up.

I ran a 800 person conference with people coming from all over the world. We made sure that we went to the very highest levels of authority, power, knowledge to get the key note speaker. From the very top, when they would come back with a no, we then moved sideways or downwards to the next person with the throw weight until we got the very best we could. The key note speaker is the authority, anyone less suggests that the organization running the conference has no real credibility OR they do not want a first class key note speaker -- odd, but for whatever reasons.

This is not a case of over-reacting or hysteria as some have suggested. This is yet another attempt to damage XMRV and Retrovirus research and credibility. No X-files thinking here, but come on, you bring in the best not the ones that can't or didn't or won't - llike Switzer. This is some sort of placating game. Hey, we did a conference and nothing of value came of it. And another blow to XMRV/Retrovirus research is given.

So, I have made it a point to email DHHS, NIH, the conference people as well as the media on this one. I hate it but the fact is that we have to fight on every single front on every single issue no matter how "small" some of us may think it is. In this case, I do NOT think this is a small issue. Rather, another nail in the coffin for more research and so I have been aggressive (not nasty, but forthcoming) in my emails.

The problem with CFIDS is that we did not have the media interest and public viewing of the disease or the retrovirus(es) that were/have been discovered. Part of this was our own fault for not fighting and instead being too timid and intimidated. That can NOT continue. We can not go another 30 years with the CDC and other health orgs (here, in the UK, Canada, etc) covering up CFIDS/XMRV/Retroviruses. The numbers of carriers and sick are just too large now. What will happen in the next 30 years to all those carriers and sick? The numbers will be astonomical. More young children will be sick and their lives lost to a virus that should have been dealt with back in the mid 1980s.

I have no intentions of just laying here and letting this cover-up continue. I will be damned before I watch my own niece and nephew walk the same road that both my father and I have walked. With my family there is a strong "genetic" component to CFIDS and FM - and Connective Tissue Disorder (and POTS). So for these little guys I fight. And I will keep fighting every time "they" play games with us. No more. It's war on every level and on every front. It is that serious now. And NOW more than ever.

 

[muffin]

judderwocky : I have great respect for what you write and make it a point to read your posts since they are informative, articulate and just clear-headed, common sense. However, I must disagree with you on this one. This is not a party that Judy was not invited to. It is a conference, the FIRST conference on XMRV and one that will set the stage for the next XMRV conferences. If we do not call "them" on every little thing they will continue to nibble away at XMRV research (and its possible association to CFIDS and other diseases/cancers). This can't happen. We have no choice but to scream and fight or they will think we are complacent and not aware of the little games they are playing now with us. Not BIG games as Reeves did to us at the CDC for all those years, but now little nibble games that eat away at XMRV/Retrovirus research.

Think and do what you feel you must but for me and others who believe this is a major issue - we have no choice but to scream, email, inform the media/public and make it a huge, big deal. They are playing games with us - isn't that apparent? Right off the bat, no Mikovits as a speaker much less not the key note speaker? That says a huge amount to me.