State of Knowledge Agenda is up! It's UP!

[urbantravels]

If you pay attention to the agenda, you will see that every session ends with a summary and panel discussion with all the speakers and moderators from that session; and that the entire afternoon of the second day is a wrap-up with ALL speakers and session co-moderators:

2:30 4:45 p.m. All Speakers and Co-Moderators
Summary of Each Session
Responses by Department of Health and Human Services Federal Agencies
Full Workshop Panel Discussion

I feel pretty sure that video arrangements to handle that many speakers at once so that they can be seen and heard, webcast live and also recorded, are not as simple as some here are suggesting that they are. And how many of the people here who are complaining about capacity are planning to go to the conference, versus watching it via webcast or archived video, and are therefore personally affected? If the video arrangements were inadequate wouldn't we have a lot more reasons to complain?

It still seems a little backward of the Patient Advocate to find it a suspicious circumstance that the conference is booked up. It could be considered equally negative if the conference were NOT fully booked up, equally suspicious if the conference were NOT privileging video/webcast capability over holding the conference in the biggest room possible. Really, I don't see a lot of convincing reasons here for assumptions of bad faith on the part of the conference organizers.

 

[WillowJ]

I agree that Mangan should be given full credit for working in good faith. Thanks, Rich, for being there. I look forward to hearing whatever you're able to share. I love hearing that the room is near important managers. That sounds like a good strategic decision.

What I'm a bit concerned about right now is the federal government shutdown due to no Congressional decision on a budget. That's not going to affect this, will it? They say some federal employees are not allowed to go to work. But NIH should be high priority, right?

 

[WillowJ]

never mind... I heard that was tomorrow, but it's not until Saturday. So the conference is safe in any case.

 

[ixchelkali]

Personally, I think Dr. Mangan is operating in good faith in terms of the room choice and the speaker lineup. The fact that the workshop is going to webcast is really a good thing, in my opinion, because even if the room were larger, there are oodles of PWCs out there who would like to come and would not be able to. This way, they will be able to follow the talks as they are given.

Hi, Rich. I'm glad to here you'll be there. Thanks for the on-the-scene report on the rooms.

Since I'm one of the people who will be "attending" by webcast, and couldn't dream of being there in person, I'm happy they're making that a priority. It even shows a growing awareness that some of the stakeholders are disabled enough to be homebound.

And lining up this many speakers, most from outside NIH and some probably not even funded by NIH, so that they don't have any ties to them, has got to be very challenging. I'm not surprised that it took a while, what with the agreement of the steering committee and the official approvals that had to be gotten before they could even invite someone, and then the possibility that the person might have other plans, such as teaching responsibilities and other things, and may have to decline, so that they have to go through the process with someone else, etc. I'm just thankful that they were able to accomplish this as well as they did, and as I wrote, I'm looking forward to the workshop.

I'm happy with the line-up of speakers they've gotten. I give them all credit for that and thanks to Mangan. But they HAVE had a lot of lead time. Eleanor Hanna has been pointing to this conference as the major effort of the NIH Office of Research on Women's Health for the past two years at the CFSAC meetings. She's talked about how long it takes to plan something like this, so I'm surprised at how much was still being done at the last minute. Not posting the list of speakers until 4 days before the conference is unusual, you have to admit. I don't think it indicates anything nefarious. I do suspect that they didn't make this conference a priority early enough.

Still, it's nearly here, it sounds good, and I'm excited.

Just one little detail bugs me: the name, "State of the Knowledge." The title I've usually heard for this kind of conference is "State of the Science." I know I shouldn't sweat the small stuff, but it feels like one more little dig. Like a subliminal message that the content isn't science. Okay, I'm probably being over-sensitive, and maybe seeing insults where there aren't any, but it's easy to become sensitized when you've been kicked around for so long.

 

[Cort]

Hopefully a few researchers will badger him about drastically increasing the rate of NIH research grants and encouraging researcher interest in general.

Is it possible he is there to announce a major grant opporunity for ME/CFS? This would be the place to do it.

 

[WillowJ]

Is it possible he is there to announce a major grant opporunity for ME/CFS? This would be the place to do it.

that would be fabulous

 

[justinreilly]

Is it possible he is there to announce a major grant opporunity for ME/CFS? This would be the place to do it.

he's only scheduled for 10 mins. I wouldn't necessarily read anything specific into it. probably just some facetime like Koh does.

 

[SpecialK82]

If the video arrangements were inadequate wouldn't we have a lot more reasons to complain?

Really, I don't see a lot of convincing reasons here for assumptions of bad faith on the part of the conference organizers.

Totally Agree - webcasting is the main thing, there's not time for public comments and questions so it doesn't matter.

 

[RivkaRivka]

how do we watch this conference? where is the webcast?

 

[ixchelkali]

how do we watch this conference? where is the webcast?

Rivka, go to http://videocast.nih.gov/ tomorrow morning.

Is it possible he is there to announce a major grant opportunity for ME/CFS? This would be the place to do it.

Cort, you are just so cute I want to kiss you (don't worry, it would be like a kiss from an old lady aunt). Even after years of disappointment and oppression, you are unfailingly optimistic. I don't think there's a snowball's chance that Collins is going to announce major funding, I think his presence at the conference is supposed to be honor enough for us, but the fantasy made me smile.

 

[Dolphin]

After I read Hilary Johnson's blog piece: http://www.oslersweb.com/blog.htm?post=782485 I was not suspicious that the list of speakers wasn't up - they had over 20 different agendas at different times with some late cancellations/similar so basically it wasn't settled.

 

[insearchof]

20 different agendas would explain a lot!

I have also just read that they have been planning this event for two years.

If this is correct, then they had 2 years to do it in and could not secure the main speakers 2 years out? Please!

Most conference organizers would consider it a major disaster to only release the agenda 4 days prior to the start of the conference, in fact it would be a financial disaster if the conference was dependent on registrations to cover costs. (Obviously this is not the case or they are going to take a massive hit to their budget).

It also fails from a conference organisational perspective, because the conference content did not get the necessary exposure and promotion required and that is needed to:

* attract the right sort of registrants and
* to promote scientific developments in the field
* to generate and attract greater scientific interest

Professionals in the field, attend conferences largely on the basis of the line up and the presentations.

As for the small room I now believe the most likely reason they booked a small rooms was because of the short comings I mentioned- and a legitimate concern that they would not get a high registration attendance. Booking a large room and having it only partially filled, would just highlight how poorly organized this might well have been.

State of Knowledge? How about the State of Science? Maybe thats why they could not secure their speakers? Rather insulting to the speakers I would suggest. As we know, most scientists do not see CFS as a worthy area of research. That choice little title, reinforces that message ie: not a valid scientific area. So why would a scientist who is feeling a little gun shy about exposure in the CFS area, sign up to speak at a conference that gives further credence to the idea that this is an area for mickey mouse science?

Why didnt they contract this out to one of umpteen professional conference organizers who specialize in scientific conferences of this nature? If you want an example of what can be done what about the 1st International workshop on XMRV that was held last year?

You can dress this up any way you like but it was either not accorded the priority it should have been given, was very badly organized and managed, or possibly both.

I guess though the ME CFS community is used to being fed crumbs.

 

[Dolphin]

There is supposedly a distinction made between a "State of Science" and "State of Knowledge" conference. It is something about the first one requiring a review of the literature first and/or being more "evidence-based".

We knew they were behind when they only started looking for reps in January (?).

 

[insearchof]

Well the sun is about to rise here but a few points.

I listened to the speakers up until the break for lunch. There was some interesting information - some old, some new and there appeared to be an overlap of information or recurring themes.

I understand that the purpose of this conference was to bring other scientists up to speed in relation to significant research/developments that has taken place outside of their fields.

It is in essence, a good idea as I understand that such conferences can spark new research directions and collaborations.

I know very little about the way this was organised, only from what I have read here and on some blogs.

But it strikes me - that one way to move science in any field forward, is not only to bring together scientists for a catch up - but to actively and strategically foster collaborations. Mediate them. Otherwise, it seems to me that a really good opportunity is lost at conferences like this one.

In December last year, there was such a conference that took place at Bond University Qld Australia, in which selected scientists from various fields were invited to participate in workshops. It was an invitation only affair. It was organised by the Alison Hunter Memorial Foundation. They took up this concept and identified strategic areas of reasearch and invited the participants with a view to mediating and fostering collaborative research in certain areas that relate to ME and CFS.

I think - after 20 years of plentiful research - this would be very useful and such collaborative ventures might result in better outcomes and also stronger funding opportunities.

Do we really have the luxury of another 20 years for outcomes that will assist us? Do we really have the luxury of running conferences like these and simply hoping for the best, that something useful comes out of them? Or is it time for demanding more focused, strategic and mediated/ outcome driven approaches with these knowledge meets?

ISO

 

[*GG*]

I agree that Mangan should be given full credit for working in good faith. Thanks, Rich, for being there. I look forward to hearing whatever you're able to share. I love hearing that the room is near important managers. That sounds like a good strategic decision.

What I'm a bit concerned about right now is the federal government shutdown due to no Congressional decision on a budget. That's not going to affect this, will it? They say some federal employees are not allowed to go to work. But NIH should be high priority, right?

I don't think we have much to be concerned about, but you never know. I read something by Newt Gingrich where he says that NIH should not be touched, because research is important in bringing down health care cost, or something to that effect.

GG

http://seriousmedicinestrategy.blogspot.com/2011/04/newt-gingrich-and-serious-medicine.html