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First International XMRV conference

leelaplay

member
Messages
1,576
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)
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hi taniaaust1

I personally wouldnt ask Dr Mikovits about is she okay with advocacy in her name as the moment one does that.. one is then involving her in it!! I do not wish to involve her in it.

Im not advocating on her behalf.. but rather advocating for a situation I see as just not being right.

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 think that Ruscetti is more than competant enough and i think he has shown that their own experiments produced the "fails" that the CDC had when they used that env pcr sequence....

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:
(referring to Mr Switzer)The committee is not going to understand why somebody from the NIH, at the NIH sponsored conference, is not good enough for the keynote address.

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:
either way we have much more powerful institutions coming on board with this than the WPI....

We now have the FDA/NIH wit their reputations on the line.

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.
 

SOC

Senior Member
Messages
7,849
I feel that as patients or patient advocates (especially since this is directly affecting us) that we have every right to contact organizers of any conference on an individual basis. WPI are not patient advocates and have nothing to do with patient action.

A wonderfully clear statement of our rights and WPI's place in this advocacy issue, Robyn. Thanks.

I'm adding one of my grandmother's favorite sayings, "Just because you have the right to do it, doesn't mean it's the right thing to do."
 

julius

Watchoo lookin' at?
Messages
785
Location
Canada
Indeed, but in that case there was a real problem. And the Europeans really had sinister motives, and were actually the 'enemy'.

In the case of this conference, there is not real problem. Only a percieved one. The problems are being created here by us on this forum.

Big difference.
 

Martlet

Senior Member
Messages
1,837
Location
Near St Louis, MO
Moderator: This thread has generated more complaints from more people than any thread in several months. PLEASE ... would all those responsible for the argumentative tone that has been repeatedly reported tone it down, otherwise, this is another good thread that will have to close. Please???
 

SOC

Senior Member
Messages
7,849
Well people have their own opinion about what is the "right " thing to do. You are entitled to yours and they are entitled to theirs.

Absolutely! It has been my opinion throughout this discussion that people should review all the information available, and make their own decision about the right thing to do.

EDIT: Ref the moderator's request: Although I have tried to remain civil, it does seem that these last few posts have become OT, since this was never an issue of anyone's rights to do what they feel is best. I will not post further on this point.
 

VillageLife

Senior Member
Messages
674
Location
United Kingdom
The truth is we have no idea at this moment in time where xmrv is heading...
It could be that this time in 5 years dr Mikovits Is world famous and xmrv was it! In which case we will all think back to the fact Dr Mikovits wasn't invited to the 1st xmrv conference and how TERRIBLE that was. But it's the scientists who have decided not to invite dr mikovits and its them who will have to live with this decision of cutting her out of the 1st conference and it's them who in the future will look bad.
So don't worry this Is all history in the making and people won't forget this.
 

Frickly

Senior Member
Messages
1,049
Location
Texas
Thank You!

Dr Judy Mikovits is now Co-Chair, along with Dr J Coffin, on the CFS session + is giving the anchor presentation, Detection of infectious XMRV in the peripheral blood of chronic fatigue syndrome patients inthe United Kingdom at 12:30 Sept 8. Thanks to all who wrote in.

Session 4:
Chronic Fatigue Syndrome
Chairs:
Dr John Coffin & Dr Judy Mikovits

11.15AM
Invited lecture on Chronic fatigue syndrome
F. Ruscetti

11.45AM
Prevalence of XMRV in CFS patients and healthy controls
B. Huber

12.00AM
XMRV in Chronic Fatigue Syndrome: A Pilot Study
M. Hanson

12.15AM
Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors
S. Lo

12.30AM
Detection of infectious XMRV in the peripheral blood of chronic fatigue syndrome patients in the United Kingdom
J. Mikovits

12.45AM
Discussion
1.00PM
Lunch

For final schedule click on link below, look to right and click on "Program xmrv final"
http://www.virology-education.com/index.cfm/t/Program/vid/1FFCB7B8-FB88-C1D2-92C420E3BCEB0FB0
 

Rrrr

Senior Member
Messages
1,591
Let's send Mindy to 1st Int'l XMRV conference, Sept 7-8: Fundraising effort starting now!

Has anyone NOT seen Mindy's great reporting on www.cfscentral.com ??

Especially her most recent reporting on the NIH/FDA/Harvard paper that was posted on her blog and on the CFS forums seemingly seconds after 3 pm EST, on Aug 23rd, when this groundbreaking paper was made public? She had the background story for us on this paper, key interviews, everything, within seconds of the paper's release. Literally.

Can't get better than that.

So let's send her to the 1st Int'l XMRV conference, Sept 7-8: Fundraising effort starting NOW.

Yes, I know she already said she is already going, whether or not we start raising funds for her hotel and travel and meals while there. But being an independent investigative journalist, as she is, is not like being a salaried or paid staffer/writer for a newspaper. There is a new trend in the world of blogging and investigative journalism, and it is that if you, the reader, want the reporter to keep doing her work, you help fund her work so she can eat (and pay for a hotel in Baltimore, where the conference is, which has to be about $150/night, I'm guessing).

Please note: THIS IS NOT AN EXCLUSIVE EFFORT. IN OTHER WORDS, THIS IS NOT A FUNDRAISING EFFORT EXCLUSIVE TO THIS PHOENIX RISING FORUM, THIS IS AN ALL-PWC, ALL-FORUMS EFFORT. I'll be posting this around to people not on the forums, to people on other forums, and you can forward it to yr pals, too!

Because it is an all-PWC effort, and not exclusive to one forum, we'll likely never know how much we end up donating, as we won't be able to keep track. But I am sure none of the money we send Mindy will go to waste supporting her good muckraking work.

Meanwhile, just to keep us all inspired and keep a fire lit under our donating butts, if you want, please feel free to let us know by posting on this thread http://www.forums.aboutmecfs.org/sh...nference-Sept-7-8-Fundraising-effort-starting AFTER you have donated to Mindy's site. Her donate button is on the right hand side of her blog: www.CFSCentral.com

Let's send Mindy to Baltimore and the world's first XMRV conference so that *we* can get the best reporting from that highly important conference.

Warmly,
Rrrr
 

Rrrr

Senior Member
Messages
1,591
someone is organizing the handing in of a petition at the start of this conference. can that person send me a private message. or if anyone knows who that is, can you tell me, so i can contact him?
 

pictureofhealth

XMRV - L'Agent du Jour
Messages
534
Location
Europe
Who is M Hanson does anyone know? He is presenting a lecture on Chronic Fatigue Syndrome at the upcoming XMRV Conference this September:

12.00AM XMRV in Chronic Fatigue Syndrome: A Pilot Study M. Hanson O_11
 

CBS

Senior Member
Messages
1,522
Who is M Hanson does anyone know? He is presenting a lecture on Chronic Fatigue Syndrome at the upcoming XMRV Conference this September:

12.00AM XMRV in Chronic Fatigue Syndrome: A Pilot Study M. Hanson O_11

From Pro Health (http://www.prohealth.com/library/showarticle.cfm?libid=15538):

12:00 noon XMRV in chronic fatigue syndrome: A pilot study
M Hanson
[Maureen Hanson, Cornell University, principal investigator of current NIH-funded research on The relationship of XMRV to functional status and co-infections in chronic fatigue syndrome.]
http://mbg.cornell.edu/faculty-staff/faculty/hanson.cfm
 

V99

Senior Member
Messages
1,471
Location
UK
That study will be one of the most interesting to hear about. Next stage now.