hey George, I cant imagine anyone ever chewing you out for politely and cogently expressing a well-thought out and informed opinion.
I completely agree that the revision of the CDC CFS website is major news. I'm so glad that you'll be working on this. Hopefully, you'll share some of those brains with us on it (big grins)
------------
hi taniaaust1
I completely agree with this.
-----------------
hi judderwocky, I've been trying to follow your posts. In a nutshell, it seems you are saying that you think xmrvglobalaction has done the wrong thing by bringing to light the facts that
1. Dr Mikovits has not been invited to speak at the 1st xmrv conference, and
2. while we welcome the presence of the CDC at the conference, Mr W Switzer of the CDC, who has been unable to find XMRV, has been invited to speak on Assay Development rather than Dr F Ruscetti or others who have found it.
I will not rehash the reasons we have given for deciding to take this advocacy step.
I will repeat that we first contacted Dr Mikovits to confirm that she has not been invited. She confirmed that she has not been. End of Dr. Mikovits and WPIs involvement. All the advocacy work done has been done by us. It is patient conceived and acted upon. We did not ask Dr Mikovits or WPI to become involved with the initiative.
Now - you say that you are worried about harming Dr Mikovits and WPI. Yet, what you have told us you have done, here on this public forum, is that you, a stranger, has contacted the WPI press office and asked them if WPI wants patients to be advocating to have Dr Mikovits included in the conference.
To me it seems that you are creating the very situation that you say you want us to avoid - publically asking WPI to be involved in this. As taniaaust1said - the very act of asking their opinion on this involves them in this - the very thing you say you don't want to do.
As a result, I feel that it your actions alone that are forcing them to make the press release you tell us they will be making.
Someone said (sorry - getting tired here) that in-fighting on the forum weakens us as a group, especially when it is rudely done. I whole-heartedly agree with that.
We are all patients who are doing everything we can to get better. And we are sick, and get testy sometimes. But, it is inevitable that there will be issues and actions over which we do not all agree. I hope we can stay civil, discuss politely without personal insults , respect one another's opinions, and remember that we're all on the same side and that were all doing and saying what we perceive to be best for all of us.
Hopefully well all tackle the CDCs revised CFS pages now. Did you see the flashing Childhhod Adversity (Reeves last paper I believe) on the top of the front page?
And finally,
I really hope that you are right judderwocky. I think we all agree that Dr F Ruscetti is one of the best in the business. However, he has been invited to speak on CFS, not Assay Development, which Mr Switzer has been invited to speak on.
Who's who does get confusing.
THe NIH and CDC are both separate agencies under HHS (the US Dept of Health and Human Services)
The workshop is co-sponsored by NIH , and organized by Virology Education (a private company)
The keynote speaker is Dr Eric Klein who is from the Cleveland Clinic
Prostate Cancer (keynote lecture) Dr. Eric Klein, Cleveland Clinic, Cleveland, USA
None of the invited speakers are from NIH (the National Institutes of Health) Dr H Alter, the chief of the infectious disease section and the associate director for research of the Department of Transfusion Medicine at the Warren Grant Magnuson Clinical Center of the NIH, is the author of the yet to be published FDA/NIH paper, but he is not one of the invited speakers.
Mr William Switzer, who was invited to speak on Assay Development, works for the CDC.
Actually, we don't.
The FDA/NIH paper has not been published, and we won't know what it will say until it is published. Will Dr H Alters information from the European Blood Conference, as summarized in part in this slide, which NIH has confirmed is from his presentation, still be part of the paper ?? (Ive added it to the bottom for those who cant do links. http://www.sanquin.nl/ipfa/Upcoming...cc818c125706600483652!OpenDocument&AutoFramed
Only time will tell.
And no one from the NIH or FDA has been invited to speak.
Remember history. The CDC and NIH/FDA both had papers in to be published. The CDC asked HHS to pull the NIH/FDA paper as it had opposite results to theirs. The HHS then pulled both papers, even though the NIH/FDA paper had been approved by PNAS (the journal) and was in the final publication stages an event the current publisher had only encountered once in his 4 year tenure, and that was a paper that he had pulled himself.
Mr. Switzers CDC paper claims not that the methods they used could not find XMRV in CFS patients, which is what many of the comments in Retroviriology say it shows, but rather that the CFS patients did not have XMRV
-----------------------
IPFA/PEI Workshop on Surveillance and Screening of Blood Borne Pathogens (Zagreb, Croatia, May 26-27, 2010)
page 10 of NIH virologist Dr. Harvy Alters slide pack (Presentation 1, Session 4, Day 1)
"Comments on the Agent Du Jour - XMRV
The data in the Lombardi, et al. Science manuscript are extremely strong and likely true, despite the controversy.
Not only have they detected gag and envelope XMRV sequences, but they have infected prostate cell lines and recovered gamma retrovirus particles and have transmitted XMRV to rhesus macaques by the IV route and demonstrated infectivity.
Although blood transmission to humans has not been proved, it is probable.
The association with CFS [Chronic Fatigue Syndrome] is very strong, but causality not proved.
XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3% - 7%.
We (FDA & NIH) have independently confirmed the Lombardi group findings.
------------
judderwocky - I guess xmrvglobalaction should feel flattered, imitation being the highest form of flattery and all that, that you chose a name for your site so similar to ours.
I completely agree that the revision of the CDC CFS website is major news. I'm so glad that you'll be working on this. Hopefully, you'll share some of those brains with us on it (big grins)
------------
hi taniaaust1
I completely agree with this.
-----------------
hi judderwocky, I've been trying to follow your posts. In a nutshell, it seems you are saying that you think xmrvglobalaction has done the wrong thing by bringing to light the facts that
1. Dr Mikovits has not been invited to speak at the 1st xmrv conference, and
2. while we welcome the presence of the CDC at the conference, Mr W Switzer of the CDC, who has been unable to find XMRV, has been invited to speak on Assay Development rather than Dr F Ruscetti or others who have found it.
I will not rehash the reasons we have given for deciding to take this advocacy step.
I will repeat that we first contacted Dr Mikovits to confirm that she has not been invited. She confirmed that she has not been. End of Dr. Mikovits and WPIs involvement. All the advocacy work done has been done by us. It is patient conceived and acted upon. We did not ask Dr Mikovits or WPI to become involved with the initiative.
Now - you say that you are worried about harming Dr Mikovits and WPI. Yet, what you have told us you have done, here on this public forum, is that you, a stranger, has contacted the WPI press office and asked them if WPI wants patients to be advocating to have Dr Mikovits included in the conference.
To me it seems that you are creating the very situation that you say you want us to avoid - publically asking WPI to be involved in this. As taniaaust1said - the very act of asking their opinion on this involves them in this - the very thing you say you don't want to do.
As a result, I feel that it your actions alone that are forcing them to make the press release you tell us they will be making.
Someone said (sorry - getting tired here) that in-fighting on the forum weakens us as a group, especially when it is rudely done. I whole-heartedly agree with that.
We are all patients who are doing everything we can to get better. And we are sick, and get testy sometimes. But, it is inevitable that there will be issues and actions over which we do not all agree. I hope we can stay civil, discuss politely without personal insults , respect one another's opinions, and remember that we're all on the same side and that were all doing and saying what we perceive to be best for all of us.
Hopefully well all tackle the CDCs revised CFS pages now. Did you see the flashing Childhhod Adversity (Reeves last paper I believe) on the top of the front page?
And finally,
judderwocky said:
I really hope that you are right judderwocky. I think we all agree that Dr F Ruscetti is one of the best in the business. However, he has been invited to speak on CFS, not Assay Development, which Mr Switzer has been invited to speak on.
judderwocky said:
Who's who does get confusing.
THe NIH and CDC are both separate agencies under HHS (the US Dept of Health and Human Services)
The workshop is co-sponsored by NIH , and organized by Virology Education (a private company)
The keynote speaker is Dr Eric Klein who is from the Cleveland Clinic
Prostate Cancer (keynote lecture) Dr. Eric Klein, Cleveland Clinic, Cleveland, USA
None of the invited speakers are from NIH (the National Institutes of Health) Dr H Alter, the chief of the infectious disease section and the associate director for research of the Department of Transfusion Medicine at the Warren Grant Magnuson Clinical Center of the NIH, is the author of the yet to be published FDA/NIH paper, but he is not one of the invited speakers.
Mr William Switzer, who was invited to speak on Assay Development, works for the CDC.
judderwocky said:
Actually, we don't.
The FDA/NIH paper has not been published, and we won't know what it will say until it is published. Will Dr H Alters information from the European Blood Conference, as summarized in part in this slide, which NIH has confirmed is from his presentation, still be part of the paper ?? (Ive added it to the bottom for those who cant do links. http://www.sanquin.nl/ipfa/Upcoming...cc818c125706600483652!OpenDocument&AutoFramed
Only time will tell.
And no one from the NIH or FDA has been invited to speak.
Remember history. The CDC and NIH/FDA both had papers in to be published. The CDC asked HHS to pull the NIH/FDA paper as it had opposite results to theirs. The HHS then pulled both papers, even though the NIH/FDA paper had been approved by PNAS (the journal) and was in the final publication stages an event the current publisher had only encountered once in his 4 year tenure, and that was a paper that he had pulled himself.
Mr. Switzers CDC paper claims not that the methods they used could not find XMRV in CFS patients, which is what many of the comments in Retroviriology say it shows, but rather that the CFS patients did not have XMRV
-----------------------
IPFA/PEI Workshop on Surveillance and Screening of Blood Borne Pathogens (Zagreb, Croatia, May 26-27, 2010)
page 10 of NIH virologist Dr. Harvy Alters slide pack (Presentation 1, Session 4, Day 1)
"Comments on the Agent Du Jour - XMRV
The data in the Lombardi, et al. Science manuscript are extremely strong and likely true, despite the controversy.
Not only have they detected gag and envelope XMRV sequences, but they have infected prostate cell lines and recovered gamma retrovirus particles and have transmitted XMRV to rhesus macaques by the IV route and demonstrated infectivity.
Although blood transmission to humans has not been proved, it is probable.
The association with CFS [Chronic Fatigue Syndrome] is very strong, but causality not proved.
XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3% - 7%.
We (FDA & NIH) have independently confirmed the Lombardi group findings.
------------
judderwocky - I guess xmrvglobalaction should feel flattered, imitation being the highest form of flattery and all that, that you chose a name for your site so similar to ours.
