First International XMRV conference

[George]

Man, I know I'm going to get chewed on for this but here goes,

A- Dr. Mikovits is nobody she is not the first name on the Lombardi et al paper She is the last. She is a research director for a small start up lab. She has only 26 papers to her name.
B- she has spoken out against people who consider themselves her superiors due to papers published, work in specific areas and all the other folderal that greases the egos.
C- She did not discover this virus. She is not a major player in figuring out it's pathogenisis.
D-Dr. Mikovits has two things going for her, she was in the right place at the right time and she knew the right people.

You try to ram her down the throats of major players and you may cost her her career. Right now people (scientist) are jockeying for credit and glory in the next BIG discovery they will fight back if they see a threat to their place.

I love that Judy has stood up and spoken for the patients. She has been a wonderful patient advocate and I want to see her able to continue that role.

Now I do plan to write the major news out let's and emphasize how the CDC has just disqualified 30 years of science by targeting every test currently used to diagnose CFS in one web page update!

 

[SOC]

Again, who ever said you put that? And where is the 'our'?

Anyway, Mikovits has been stopped from presenting at the XMRV conference, and Ruscetti is kindly stepping in. They are trying to remove the WPI from XMRV research. If you want this changed, ask the committee.

The facts: Dr Mikovits was not invitedto present. Dr F.Ruscetti is "kindly stepping in". He is a respected researcher with excellent knowledge of the XMRV/ME/CFS connection. Dr Mikovits has been an advocate for ME/CFS, which in the scientific community can be seen as bias. It is typical under these circumstances to choose the best available speaker with the least appearance of bias. This increases the credibility of argument to the scientific audience.

Not a fact: "They are trying to remove the WPI from XMRV research." The evidence does not support this argument. Dr M is still involved, she is just not an invited speaker at this workshop. There is NO evidence that "they" (whoever "they" are) are doing anything to "remove WPI from XMRV research".

People who know something about the scientific research world have said repeatedly that not inviting Dr M to speak is not a denial of her scientific prowess or conclusions. This is not a popularity contest. This is about who is the best speaker for this particular audience.

I have seen NO evidence that WPI feels that addressing the committee that selected the speakers is in any way beneficial to WPI or Dr M.

If the reason that Dr M was not asked to speak is that she is seen as a patient advocate, bombarding the selection committee with letters from patients asking that she be allowed to speak will only reinforce that belief and reduce the likelihood that she will be asked to speak as an unbiased researcher in the future. Think about it.

 

[Frickly]

Please Act Now

http://www.facebook.com/pages/XMRV-...clinical-and-public-health-impli/421411181796

1st International Workshop on XMRV: Pathogenesis, Clinical and Public Health Implications – Please Act Now

The 1st International Workshop on XMRV , co-sponsored by the NIH and organized by Virology Education, will be held on September 7, 2010 at the National Institutes of Health in Bethesda, Maryland, USA. The objective of this scientific workshop is to assemble an international group of scientists, physicians and epidemiologists to present and discuss the latest XMRV studies, including topics such as virus-host interactions, cell type tropism, mode of transmission, animal models and the efficacy of current antiretroviral drugs.

While we at XMRV Global Action are very excited about the workshop, we believe the list of invited speakers is incomplete and it is imperative that Dr. Judy Mikovits of the Whittemore Peterson Institute be among the invited speakers. We feel that it is incomprehensible to omit the leader of the team that showed XMRV to be a new human exogenous retrovirus firmly associated with ME/CFS.

The list of invited speakers as of today, July 22, includes:

• Dr. Kate Bishop, NIMR, London, UK - Host Restriction Factors
• Dr. Sam Chow, UCLA, Los Angeles, USA –Viral Integration
• Dr. John Coffin, Tufts University, Boston, USA –Basic Virology
• (Keynote lecture) Dr. Eric Klein, Cleveland Clinic, Cleveland, USA –Prostate Cancer
• Dr. Robert Silverman, Cleveland Clinic, Cleveland, USA –Animal Models
• Dr. Ila Singh, University of Utah, Salt Lake City, USA –Pathogenesis
• Mr. William Switzer, CDC, Atlanta, USA –Assay Development
• Dr. Frank Ruscetti, National Cancer Institute, Frederick, USA –Chronic Fatigue Syndrome
• Dr. Ellen Sparger, University of California, Davis, USA –Vaccine Development
( http://www.virology-education.com/index.cfm/t/Program/vid/1FFCB7B8-FB88-C1D2-92C420E3BCEB0FB0 )

We are urging all our members to send an email to the Science Committee contact, Wilco Keulen wilco.keulen@vironet.com from Virology Education, and Dr. Francis S. Collins francis.collins@nih.gov, Director of the NIH, to request that an invitation be extended to Dr. Judy Mikovits as a featured speaker. We also encourage you to send this message on to your friends and family. It is up to our community to ensure that ME/CFS and XMRV continue to be an important part of the conversation.

Below you will find a sample letter that you are welcome to use.

Thank You!

(sample letter)
To all involved in the 1st International Workshop on XMRV,

Congratulations on mounting the 1st International Workshop on XMRV. Bringing researchers and medical professionals together in this way is a critical step in understanding XMRV and its impact on public health and in moving the state of the science forward.

When this workshop was first announced I noticed Dr. Judy Mikovits was included as part of the workshop’s Scientific Committee. However, I was very surprised to see that she was not one of the speakers, let alone not the keynote speaker.

It was the October 2009 publication in Science of Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome that reignited and expanded global interest in XMRV as well as the role it might play in disease after its initial discovery in some prostate cancers by Silverman and Klein et al in 2007.

This paper, linking XMRV to ME/CFS, was authored by scientists from the Whittemore Peterson Institute, National Cancer Institute and the Cleveland Clinic. The National Cancer Institute is represented by Dr. Frank Ruscetti and the Cleveland Clinic is represented by Dr. Robert Silverman. However, Dr. Judy Mikovits from the Whittemore Peterson Institute is nowhere on the program. The omission of the leader of the team that showed XMRV to be a new human exogenous retrovirus firmly associated with CFS is incomprehensible.

Furthermore, while I welcome and encourage the involvement of the CDC in research into XMRV, Mr. Switzer, the guest speaker on Assay Development, to date has been unable to detect XMRV in any blood samples. While exploring why methods do not work contributes valuable information to the field, so does information on methods that do work.

The original Science paper, along with Response to Comments on "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome” on methods of detecting XMRV, demonstrate that Dr. Mikovits and Dr. Ruscetti are the leaders in this area right now. They have published studies detecting XMRV in blood and other studies have corroborated these findings. Drs. Mikovits and Ruscetti should also be presenting on "how to find XMRV” and Assay Development.

I do not believe the stated objective of the 1st International Workshop on XMRV “to assemble an international group of scientists, physicians and epidemiologists to present and discuss, in a public forum, the latest XMRV studies” can be accomplished without including Dr. Judy Mikovits of the Whittemore Peterson Institute among its scheduled speakers.

I will be following this conference schedule with great interest as it develops. I request, and strongly urge, that Dr. Judy Mikovits be invited to be an important part of this conference and its presentations.

Sincerely,

 

[SOC]

I am done with this. you are beyond help. pushing this campaign is not what will help them. call them if you want their word on it. you are not listening to reason.

Agreed. You (or we) cannot discuss with people who won't listen. I, too, am done with this and hope that members will read the whole thread and draw their own conclusions.

Call WPI's media center if you want to know if they think this campaign will help.

 

[SOC]

Please Act Now

Can someone get Frickly to stop posting this over and over and OVER? It is not forwarding the discussion.

 

[Frickly]

George!

Good for you George! I plan on doing the same.

"Now I do plan to write the major news out let's and emphasize how the CDC has just disqualified 30 years of science by targeting every test currently used to diagnose CFS in one web page update! "

 

[Frickly]

NO.........

Can someone get Frickly to stop posting this over and over and OVER? It is not forwarding the discussion.

 

[julius]

George,

Before anyone bites your head off I will support you and say that I agree with you. Although I think Judy did have the original ah-ha moment regarding Rnase-l/PC/CFS/XMRV. So that is a very important contribution.

And I understand that her careless comments were intended for our benefit, so I thank her for that. But it does put her in the position of being less respectable to other scientists. And does also put her pretty squarely in the role of advocate.

As far as this campaign...whatever....go ahead, knock yourselves out.

I guess there is a down-side to the internet after all. lol

 

[Kati]

Can someone get Frickly to stop posting this over and over and OVER? It is not forwarding the discussion.

Sickofcfs, everyone is entitled to their opinions- and I agree with Frickly- we need to act now. Some people here have been waiting for 25 years and more, and it's lead them nowhere. We have to take the matter in our own hands in order to get good science, access to health care, respect and back to the real world.

I will not give up.

 

[SOC]

George,

Before anyone bites your head off I will support you and say that I agree with you. Although I think Judy did have the original ah-ha moment regarding Rnase-l/PC/CFS/XMRV. So that is a very important contribution.

No bites from me, instead here's another pat on the head, George. I agree with you.

Julius, you are so right. Dr M is my hero. As you say, she had the original ah-ha moment. I think her name will go down in history.

 

[SOC]

Sickofcfs, everyone is entitled to their opinions- and I agree with Frickly- we need to act now. Some people here have been waiting for 25 years and more, and it's lead them nowhere. We have to take the matter in our own hands in order to get good science, access to health care, respect and back to the real world.

I will not give up.

I am not denying her right to her opinion. She is more than welcome to it -- and to post it. I am asking that she stop posting the very same post repeatedly -- including multiple times on one page.

It doesn't seem an unreasonable request to me.

 

[judderwocky]

The spiral into childish behaviors falls even further. Blasting the same post over and over again. Desperate attacks on allies. Its like children throwing a fit.

You are turning yourselves into a caricature of a CFS patient... you sound like the very jokes they used to post on peoples walls in the CDC... are you even observing your own behaviour at this point?

Do not confuse your "temper tantrum" with real activism. You should be focused on harder and more tedious campaigns over fundraising. With the growing budget crisis that is going to be the REAL BATTLE.

Right now the federal government does almost nothing for funding... and Nevada is basically funding all the WPI research... how much longer can they do that in a budget crisis? what other groups are we competing with ??????

You just want to whine and have a few minutes to inflict your anger on others.

It sucks were sick. You don't have to shoot yourself in the foot because of it. or the rest of us. (i already limp)

 

[Frickly]

The original intent of this thread was to ask for those concerned about the agenda of the 1st International xmrv workshop to email their concerns to the NIH and virology Education. Most cannot keep up with 200 something posts so I will continue to remind people of the original intent if needed.

 

[SOC]

The original intent of this thread was to ask for those concerned about the agenda of the 1st International xmrv workshop to email their concerns to the NIH and virology Education. Most cannot keep up with 200 something posts so I will continue to remind people of the original intent if needed.

I don't agree with your intent to repost the same (or essentially the same) post over and over, but I now fully understand that you have no intention of stopping. I leave it up to the rest of the members to decide if this is okay with them.

I still advise members to read the entire thread and make up their own minds on the issue.

 

[George]

Correction

I wanted to post a correction to something I said earlier. The Dr. Mikovits had only 1 paper to her name. That's not true. She has 26, 14 as a grad student under Dr. Ruscetti. She is the end name on the paper not Silverman so that means she was instrumental in that papers design. (first and last names are the designers)

So I want to apologize for the error.

In case anyone is interested Switzer has 35 published papers
Kate Bishop only 16 - anyone know about her other qualifications???

 

[Sean]

It is only a request.

You can call it a 'request' all you want, but it is going to look to the organising committee (and others) like an unreasonable political demand from a non-scientist attempting to inappropriately influence the scientific process, especially if the WPI themselves do not want such requests made.

Activism and advocacy are extremely important, but can have negative consequences if done inappropriately.

+1

 

[V99]

Only if done inappropriately, vey true.

If the Ruscetti's could not speak at the conference on that day, for whatever reason, then what? Who will be there who can? Only Mikovit's.

Why would you force Franks Ruscetti to do the talk?

Why would you want the WPI out of this research field?

What elements are stopping Mikovit's presenting?

What elements are stopping this message on this forum?

What is your life worth?

 

[Robyn]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[kurt]

I wanted to post a correction to something I said earlier. The Dr. Mikovits had only 1 paper to her name. That's not true. She has 26, 14 as a grad student under Dr. Ruscetti. She is the end name on the paper not Silverman so that means she was instrumental in that papers design. (first and last names are the designers)

So I want to apologize for the error.

In case anyone is interested Switzer has 35 published papers
Kate Bishop only 16 - anyone know about her other qualifications???

Last time I looked Mikovits had in fact only one single paper where she was listed as principle author. That would place her as a very junior researcher. However, she appears to have several decades of lab experience and she has worked a supporting role apparently in many studies so probably she is intermediate level. But definitely nothing like a senior researcher or heavyweight in her field.

 

[kurt]

MODERATOR - This is an interesting thread but please stop throwing around subtle insults. There is no way to rationalize or justify that you 'just have' to insult someone because your points are so right and important. All views are welcome here as long as they are politely presented in a balanced way.

If someone is offending you directly please report that post. Moderators do not track every discussion so your feedback is important. Nobody's views are immune from the rules.

Thanks.