NIH State of Knowledge This Week - Patient Advocate's Comments

[justinreilly]

It makes no sense to put it in a small room. Anything you can do in a small room you can do exactly the same layout in a larger room and then put extra seating in the unused area. The NIH campus is huge- there are several shuttle bus routes just inside the campus and there are more buildings outside the campus. I took a quick look on their website and was able to identify three auditoriums and an amphitheatre and there are probably more.

This is the first conference/workshop they're having in 8 years (and the last one was reportedly psych BS) and there's obviously a lot of interest in ME these days, at least on the part of patients. The only reason I can think of putting it in a small room and putting out the speaker list 4 days ahead of the conference is to discourage people from attending and make sure no patients can ask uncomfortable questions or otherwise point out their malfeasance.

http://www.nih.gov/about/visitor/index.htm

Lipsett Amphitheater - Building 10
Masur Auditorium - Building 10
Natcher Building - Building 45- auditorium
Lister Hill Center - Building 38A- auditorium

 

[justinreilly]

Do they never use these auditoriums because they're too big to film in? I've never used a professional video camera before, but I suspect they are able to film outside of small rooms. I have never seen a football game tv coverage cancelled because the field is just too big to film even though the players move around and aren't sitting down.

This conference is mostly one presenter at a time standing in a fixed place giving a 10 to 20 min presentation and probably not taking any questions. I bet i could film the proceedings in a large room just fine myself.

 

[omegaman]

It would seem a rather lame excuse. They have had plenty of time to figure out how to get a presenter/presenters into a shot in a larger venue. I thought the idea of this conference was to stimulate research interest. Would you not want the largest venue possible to pack as many researchers in the room as you could that might want to attend. I'm sure the patient advocates will be funnelled into the overflow rooms mostly. I doubt researchers will be funnelled inot the overflow rooms. It's to quiet any possible protest or disruptions.

 

[WillowJ]

Please see Rich VanK's post: http://forums.phoenixrising.me/show...s-up!-It-s-UP!&p=169914&viewfull=1#post169914

Also, these conference rooms are located in the same building as the offices of the directors of all the institutes of the NIH, so I think that will make it easier for people from these offices to come, even for a short time, and I think that's also a good thing.

More good stuff in his post.

Also urbantravels (who I guess has experience with video, from his tagline)

http://forums.phoenixrising.me/show...s-up!-It-s-UP!&p=169940&viewfull=1#post169940

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.

I don't think there's anything underhanded going on here.

 

[insearchof]

Maybe nothing under handed other than questionable organisation/management of the event.

My view posted on the other thread:

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
* 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.