First International XMRV conference

Kati

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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.

Kati:
This is insulting
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???

Kati
Judy went to Spain, England, Prague to talk about her work. A trip to Washingto is nothing. This is not about socializing, this is about presenting very important data to other scientists around the world. Thisi is about sharing her findings and perhpas inciting other scientists to replicate her study. This is about helping patients getting access to care for a pathogenic retrovirus as soon as possible.

Instead, BIshop who didn't find the virus will present. Switzer, who is not a Dr, the farthest he's gone is a master's degree, will talk about assay development when he has no knowledge on the matter or is likely a bogus assay just like lyme disease aimed at not finding XMRV.
Ruscetti's lab has more money, they might have let him do it for budget restraints. you think they would publicize that?

Kati
You are totally wrong, sorry- I got sources. See above.
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.

Kati
You're missing the point.
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.

Kati
I would like to repeat that Judy has bee[n at least 3 european trips to present her data including one at invest in ME. She has been talking in different universities around the US. While research is going on at the lab, she needs to spread the word about why methodology is so important and why you won't find the virus if you culture first.
/QUOTE]

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.

Kati
If you are quoting Switzer as being competent... you are so wrong. Kate Bishop is another one who didn't find XMRV in one of the British study. If you let them doing bad science, if you are sick with CFS, well you will be for the rest of your life. So, mr activist extraordinaire, is that what you want? The CDC clearly is saying CFS is a psychiatric illness and children that has the disease are often abused. They are saying on their website that there is no association between XMRV and CFS, when they know that at least 2 establishments WPI, Nih/FDA found the virus in high percentage in CFS patients. This is horrible science with consequences for us all
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
 

SOC

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Someone's going to have to give me some solid evidence before I get involved in this. And cut out the personal attacks on Judderwocky, who is making some good points about the way science works.

I am not saying anyone here is wrong -- just that the evidence, so far, doesn't exist that this situation requires a major uproar. If that evidence exists, let's see it. If Dr Mitkowvitz and the WPI are upset, let them say so. Surely they are not expecting us to act on rumor and "trust me".

Otherwise, we are going to look insane and hysterical. It's not fair, but many people have that view of us and we are stuck in the position of proving them wrong. We need to avoid even the appearance of hysteria. We know we're perfectly sane and reasonable people, but the research world doesn't, sadly. If "they" are really out to get us, we're playing right into their hands with this campaign.
 

Kati

Patient in training
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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.

You are the one out of touch. Please go back to the begining. Read Osler's Web, read about the history of CDC and how they named CFS which is an insulting name for a severe and disabling disease. Now go on and check out the CDC website that they just revamp.Go on and check out Abbott and what is the reason they are sponsoring this workshop, instead of Glaxo-smith- Kline?

I have done my research. I have exchanged e-mails with key people. I can't share them here. If you want to do nothing, honest it might be best on this topic. Many others feel like its something we need to
 

biophile

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Has Mikovits been black-listed because she spoke at that Autism conference?

Maybe she cannot attend because she's working on something big.
 
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Someone's going to have to give me some solid evidence before I get involved in this. And cut out the personal attacks on Judderwocky, who is making some good points about the way science works.

I am not saying anyone here is wrong -- just that the evidence, so far, doesn't exist that this situation requires a major uproar. If that evidence exists, let's see it. If Dr Mitkowvitz and the WPI are upset, let them say so. Surely they are not expecting us to act on rumor and "trust me".

Otherwise, we are going to look insane and hysterical. It's not fair, but many people have that view of us and we are stuck in the position of proving them wrong. We need to avoid even the appearance of hysteria. We know we're perfectly sane and reasonable people, but the research world doesn't, sadly. If "they" are really out to get us, we're playing right into their hands with this campaign.
I agree 100% with Sickofcfs, particularly about the attacks on judderwocky.

Sam

ETA @V99 it seemed like judderwocky was being heavily criticised by a number of members for expressing his point of view. I'm sorry if you felt you were under attack also.
 

SOC

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Sickofcfs

Have you seen what Judderwocky said about me?
I read it and did not see a personal attack. I saw him criticize ideas and actions, but not making personal attacks. I will go and read it again to check my memory, though.
 

SOC

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Mikovits will be there, she is being stopped from speaking.
If that is true, we need some evidence. If Dr Mikovits or the WPI thinks we should be upset about this, they need to say so. We can't act on rumor.
 

SOC

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So he can call people insane, and that's ok with you?
If you could point me to a specific post, I'd be happy to go straight there and read it. I'm working my way through. So far I've seen him call ideas insane, but not you. I've had some pretty insane ideas in my time, but I assure you I'm not insane. (Give me some time and I can even prove it. *grin*)
 

muffin

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Wasted energy fighting eachother on this forum instead of fighting the real enemies. And the personal attacks are just not acceptable. Please stop the infighting, we have bigger enemies to battle.
 
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Contact them and ask, please. Politics wont allow this to be dealt with the way we would like it to. This is the truth. Remember this is not Ruscetti's fault, it is nothing to do with him.
 

biophile

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Sickofcfs said:
Has either Dr Ruscetti said anything inappropriate re: XMRV and ME/CFS? If not, we might benefit from having as many mainstream retrovirologists as possible speaking intelligently about ME/CFS.
Good point.

Assay Development
Dr. William Switzer, CDC, Atlanta, USA
Could be his first and last conference. Alter should be at the next one!
 
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GOOD. That is more evidence that makes your case look insane.
post 57

There is no difference in saying you or your case is insane, it is still inappropriate.

biophile, contact the WPI and ask.
 

SOC

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Wasted energy fighting eachother on this forum instead of fighting the real enemies. And the personal attacks are just not acceptable. Please stop the infighting, we have bigger enemies to battle.
100% agreement from me on this
 
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sickofcfs, I have not been involved in a fight, I am trying to make everyone understand that the organising committee are stopping Mikovits from presenting.
 

SOC

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post 57

There is no difference in saying you or your case is insane, it is still inappropriate.
Nope, there's a HUGE difference between saying your case is insane and that you are insane. That said, I haven't found a place in this thread where you have made a personal attack on anyone, either. :D