First International XMRV conference

[taniaaust1]

Hey, I appreciate the activism; one little constructive critique tanaaist--if anyone uses that letter, I would correct the spelling of "explaination" to explanation and include the appropriate punctuations etc My emails and posts on the web are never as careful as when I send a pro letter so not saying am great on that myself, but think will be taken more seriously if appears as pristine as possible in grammar etc....

Also I don't think the conference is pretending to be on CFS per se, but a workshop on xmrv in general?

Thanks.. "explanation" corrected.

Can you correct the punctuation for me then? and repost it? (I did that letter as an ordinary person.. not purposely trying to look professional.. but if you could correct it for me that would be great thanks)

Have a look at the conference program.. Dr. Frank Ruscetti is giving a talk on CFS at that conference but he isnt a CFS expert at all. I personally dont think someone who isnt an expert on CFS should be giving a talk on the subject of CFS at the conference (hence like making himself appear an expert in a disorder he probably hasnt even seen patients with)

 

[xrayspex]

Hey any trained writers have time to give Tanaaist feedback? I wouldnt say I am at the top of the heap. off the top of my head the other thing was just to put the apostrophes in, which I never do on email informally either. too beat to really look deeper tonight but hopefully someone more astute will come along, otherwise I will check ya tomorrow again when time.
peace
nite
x

 

[judderwocky]

Hey any trained writers have time to give Tanaaist feedback? I wouldnt say I am at the top of the heap. off the top of my head the other thing was just to put the apostrophes in, which I never do on email informally either. too beat to really look deeper tonight but hopefully someone more astute will come along, otherwise I will check ya tomorrow again when time.
peace
nite
x

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.

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.

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.

 

[judderwocky]

Ruscetti is capable enough to present on XMRV, however shouldn't dr Judy get the honors?

As for Switzer, my thought is this is yet another way to cover up and hide CFS under the carpet. How can someone that has yet to find XMRV, that has received positive samples from WPI but never mentions it and stops the NIH and FDA from publishing a study (or at least delay) present on ASSAY DEVELOPMENT? He didn't find the virus!!!!
Why isn't the NIH/ FDA presenting on ASSAY DEVELOPMENT since they found the virus? Or Lombardi?

The CDC really doesn't want to deal with CFS people, and it is in their best interest to cover up and not believe an association with XMRV- they'd have to recognized they have messed up for 25 some years.

Wake up people!!!

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 ?

 

[V99]

They are stoping Mikovits from speaking, ie. Pushing the WPI out of the XMRV research and perhaps one step from away from pushing CFS out. This is no overreaction.

 

[judderwocky]

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

 

[V99]

Still reading your post, but do you really think Mikovits wont have put the 1st international XMRV conference in her diary???

 

[V99]

there isn't the layer of controversy over him that might be over wpi

There you said it, this is why they want the WPI out.

 

[V99]

Just because Ruscetti works at the NIH, does not make them his people. Also Ruscetti is new to CFS, Mikovits is not. I wont answer some of your questions, but just say, people are not exaggerating. Honest

 

[judderwocky]

Just because Ruscetti works at the NIH, does not make them his people. Also Ruscetti is new to CFS, Mikovits is not. I wont answer some of your questions, but just say, people are not exaggerating. Honest

I am quite sure you are being honest. I still think it is a non issue and forcing it makes us look rediculous... the conference organizers are not pushing the conference on people that already believe in XMRV and a CFS connection... they are promoting it to people outside the research field... giving them the virology and PCR tools to help them identify the virus in various cohorts... he is perfect for that since he ... and i believe his wife... are kind of the virus experts anyway....

all you are going to do is make it obvious that you have never been in contact with a research instistitution... in their eyes having him there is going to be the same....

You are looking into this to make an issue in it... it simply is not there.

 

[V99]

Go back and ask why would Ruscetti be giving the presentation and not Mikovits. It's not because the wpi cannot afford it, and it is not because Mikovits won't be there. It's because they don't want her to talk. This has nothing to do with how conferences are handled, it is politics. The politics of ME have always been this way.

 

[aruschima]

Ok, i got it!
Here is the link http://www.virology-education.com/i...ation/vid/1FFA7DE5-A435-E0D1-6FAA93CE0CFE0124 which confirms Mikovits and Singh participation at the "Workshop on XMRV" as : The members of the Scientific Committee (SC) assist the OC by providing them with suggestions for speakers and topics. In addition, members of the SC actively participate in the reviewing process of the submitted abstracts.

Gosh, nobody here even checking this out and keep on fighting like cats !

 

[judderwocky]

Go back and ask why would Ruscetti be giving the presentation and not Mikovits. It's not because the wpi cannot afford it, and it is not because Mikovits won't be there. It's because they don't want her to talk. This has nothing to do with how conferences are handled, it is politics. The politics of ME have always been this way.

You are so far removed from the research scientific process you don't understand . I'm sorry you are leading yourself into an uprsiing over this, but i think it is unwarranted and unwise.

Do you have any idea how crazy it makes you sound to suggest that a researcher doesn't trust the name of the person that appeared on the paper with them as a part of ongoing research???? get a grip.

 

[V99]

Hopefully someone else will put you straight about this, I am unable to do so. Again I cannot say why. Trust has nothing to do with Mikovits being told she is not allowed to present. This is what has happened. As you know nothing about me, don't assume anything.

 

[judderwocky]

Hopefully someone else will put you straight about this, I am unable to do so. Again I cannot say why. Trust has nothing to do with Mikovits being told she is not allowed to present. This is what has happened. As you know nothing about me, don't assume anything.

If you continue to make us look like raving lunatics nobody is ever going to take us seriously. You need to take a step back and look at what you are doing. This is not logical. This is not a good idea.

You are soooo far out of touch with the way these conferences work its not even funny. You keep saying it like its fact but you still can't even say if you have spoken with her.

There is nothing unusual about her not going to this conference or only participating at a certain level. Extra responsibilities require more work, more prep time , and all sorts of commitment. If you begin to interfere like this you are no better than the CDC. Let the scientists do their thing.

 

[V99]

She will be at the conference.

 

[judderwocky]

She will be at the conference.

GOOD. That is more evidence that makes your case look insane.

Conferences dont' have multiple people present the same topic. I dont know why you think that she has to be the person that gives the address but that is simply not how science works.

Just because you think she is some sort of superstar doesn't mean that every conference is going to vet her for the keynote speaking address or that she is going to participate in each one in exactly the same way....

You seem to think that science is about the person... its about the process... it doesn't matter who gives the address... members of the original research term.... EQUAL members.... were given presentation time at the conference....

the groups i have seen do this sort of thing usually split the conferences up... sometimes one that is busier will drop off... ive seen it be tossed around.... you make it sound like people are itching to be seen at the conferences as the speaker....
as long as their group of researchers is getting face time and recognition thats all its about

there might be a piece of the puzzle that ruscetti's lab is working on that they want to emphasize now
there might be a thousand reasons why they thought it woudl be better for him to present


One thing is certain... insisting that she be the person delivering lecture is not going to make sense or be a relevant measure in their minds. your argument is essentially null for the people organizing this thing.

They will see you as an annoyance at best... and a caricature at worst.

 

[garcia]

You are so far removed from the research scientific process you don't understand . I'm sorry you are leading yourself into an uprsiing over this, but i think it is unwarranted and unwise.

Do you have any idea how crazy it makes you sound to suggest that a researcher doesn't trust the name of the person that appeared on the paper with them as a part of ongoing research???? get a grip.

Judderwocky "activist extraordinaire" you are sounding increasingly irrational. Who said that "a researcher doesn't trust the name of the person that appeared on the paper with them as a part of ongoing research"??? Judy Mikovits absolutely trusts Frank Ruscetti. That is not the issue. The issue is that Judy Mikovits is the expert on CFS, not FR. FR (as great a scientist as he is) himself would acknowledge that. The fact that Judy Mikovits is not presenting a keynote speach at the first International conference on XMRV is a travesty. I believe it is a way of marginalizing our disease and that "upstart" institute the WPI. Some of those people do not want us involved in *their* pathogen, *their* conference, *their* research.

About time *you* "got a grip".

 

[V99]

Thanks Judderwocky, no one has ever called me insane before, took 17 years, thought it would be sooner. Feel like a member of the family now. So when Mikovits apperas on the group photo from the conference, what then? Look at it rationally, it's not money, it's not a clash of appointments, Frank Russcetti didn't demand he do the talk and Judy will be there.

 

[judderwocky]

Judderwocky "activist extraordinaire" you are sounding increasingly irrational. Who said that "a researcher doesn't trust the name of the person that appeared on the paper with them as a part of ongoing research"??? Judy Mikovits absolutely trusts Frank Ruscetti. That is not the issue. The issue is that Judy Mikovits is the expert on CFS, not FR. FR (as great a scientist as he is) himself would acknowledge that. The fact that Judy Mikovits is not presenting a keynote speach at the first International conference on XMRV is a travesty. I believe it is a way of marginalizing our disease and that "upstart" institute the WPI. Some of those people do not want us involved in *their* pathogen, *their* conference, *their* research.

About time *you* "got a grip".

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.