IDEA re: 1st International XMRV Workshop Patient Representation

[ixchelkali]

As you probably know, the 1st International XMRV Workshop is being held this Sept 7-8, sponsored by the National Institutes of Health (NIH). click_here Registration is going on now.

This is a conference for researchers. The website says

"The objective of this scientific conference is to assemble an international group of scientists, physicians and epidemiologists to present and discuss, in a public forum, the latest XMRV studies on a range of topics including virus-host interactions, cell type tropism, mode of transmission, animal models and the efficacy of current antiretroviral drugs."

It also says

"Please note that registration will be limited to researchers, clinicians and others actively participating in the field of XMRV research, with preference accorded to researchers and clinicians with a doctorate or other professional degree who submit an abstract."

However, we patients are stakeholders in this. I understand and respect their limiting registration, but I think we should have representatives there who can report to us. The NIH is a government institution. That means that they are ultimately accountable to us, the citizens.

POWER TO THE PATIENTS!​

I'm thinking that we should ask that there be a few (like maybe 6) slots for press and patient representation, people who can report back to us. I think we have a right to this information.

My nominees for patient reporters would be Amy Dockser Marcus of the Wall Street Journal, Mindy Kitei of CFS Central, and our very own Cort Johnson. We'd probably need to pass the hat to help defray expenses.

It kind of worries me that the Scientific Committee for this conference has such a high percentage of people whose contribution to XMRV research thus far has been to NOT be able to find it.

Do you think an e-mail campaign to NIH and the conference coordinators Virology Education would sway them? Or is it even worth pursuing?

What do y'all think?

 

[jewel]

Great idea!

 

[glenp]

i am with you ixchell. If you can possibly swing it!!! i would contribute if it would be possible for cort to be able to go. We do not want these doors to be closed to us!! We have had enough of the closed doors. Pleez do try someone - i will contribute for Cort

glen

 

[SOC]

We could have our own "conference". Stay at the conference hotel, hang out in the lobby wearing our identifying T-shirts swapping stories, being available for the media who can't get into the conference.... We don't have to pester the scientists, we just have to be. Lots of us.

One day we could wear our diagnosis T-shirts -- in big bold letters ME/CFS or ME/CFS and XMRV +. Another day we wear our symptom T-shirts -- OI, POTS, ANS dysfunction, PAIN, etc, etc.

Okay, okay, it's not practical. But it might be fun!

Alright, I'll be serious now. I think it's an excellent idea to try to get some media in there. I like your suggestions for representatives, too.

 

[citybug]

I think we need the representatives. I don't know if they'll do it, with the past leaks. Can you email amy marcus and others and ask if they can get in?
Does anyone have a university connection to get in?

i would love to be outside, if in any health to do it. (also inside) with an ear to the window? CFSAC is supposed to be around the same time. there was someone with a biology background that had an interest. How can we get in?

 

[jspotila]

This may not be exactly equivalent, but the CFSAC was supposed to be considering whether to have some members attend this meeting, as well as hold their next meeting in conjunction with the workshop. I don't know the status of that plan.

 

[Cort]

That's right - that was why they had the one day meeting....We should ask whats her name about this. I will certainly be in town then. Luckily I can stay at my brothers house. Thanks Glen, I would love to be there....I looked at the prices; they have prices for Academia, Pharmaceutical Industry people, etc. I wonder if the Media (or patients) are allowed?

I sent an email...It does say a Public Forum....

 

[Gemini]

i am with you ixchell. If you can possibly swing it!!! i would contribute if it would be possible for cort to be able to go. We do not want these doors to be closed to us!! We have had enough of the closed doors. Pleez do try someone - i will contribute for Cort

glen

Very good idea! Count me in.

Gemini

 

[Cort]

thanks Gemini! I emailed them and I'm afraid that it is only open to academia and Pharmaceutical representatives. I hope it happens around the CFSAC meeting as I'm sure I'll see some of the attendees at the meeting and hopefully can find out what happened. I imagine that the CFSAC members themselves may report on the meeting to the extent that they can. I was told that presentations from the meeting will be posted on an NIH site from presenters who give their permission to do so.

 

[leaves]

well how is academia defined? Do you have to be related to a university? Would they check?

 

[Eucalypta]

I'm afraid no press will be allowed either:
Photographs, audio and video recording
Photographs as well as audio and video recordings are not permitted at the official meeting sessions. Only the official medical writer appointed by the organization may make recordings. All presentations that we were granted permission for will be posted on the workshop website as soon as possible after the meeting is finished, provided the speaker has given permission to do so.

WRT the NIH ultimately accountable to the citizens, the NIH is merely a (or one of) sponsor, not the organizer. The organizer is the company; Virology Education B.V. in the Netherlands. I don't think we can make any claims wrt the NIH. They sponsor many things, research for instance that we also never get to see.