CCFS Advisory Committee Meeting - Will be Webcast Live

[Marylib]

Love your style, Levi.

But don't push yourself ...

 

[zoe.a.m.]

Wow

This has been a phenomenal day. I've had only 3 hours of sleep so I can't even second so many of the posts here that contain great quotes and moments.

I was touched so deeply by so many things that were said and by the determination of the people speaking to voice our questions. Dr. Klimas had me clapping like a lunatic before 8 am today and she just kept asking, kept stating facts, kept calling out the CDC and FDA. Every doctor I saw testify/speak completely blew me away with how candidly they demanded change, and called the CDC and NIH out on every poor move, lack of forward momentum and outright bullying and malpractice. Every piece of testimony was heartbreaking.

All I wish for at this moment is the energy to fight. I want to follow Annette's directions in terms of writing (they say snail mail really is the most effective means of being heard) to every congressperson, the president, etc.

The only thing I didn't see, but which was clearly in the room, was just a final sigh and admittance that the CDC would no longer be handling anything to do with CFS. The CDC rep really got nailed by all of the questions concerning Reeves' comments and his discomfort through most of the meeting was visible. I thought it was interesting when he assured Nancy (I think it was she who asked the question about samples and definition w/further studies) that the CFS unit wouldn't have anything to do with the XMRV testing--that it would be the retrovirus unit--to which I thought: well, what the ^$%# do we need your unit for anymore if all "scientific research" we can be assured, will be done elsewhere?

 

[leelaplay]

discuss CFSAC Oct 29, 30 meeting

Hi all - seems like discussion on today's meeting is popping up in a couple places so I thought I'd start this thread to keep it all together.

I missed a lot of the webcast, but was incredibly heartened by what I did catch. Best, most positive meeting I've ever attended. Seemed that everyone was on board and that indeed the game is changing.

Reeves wasn't there. CDC's definition and leadership continually slagged and calls for both to be replaced. XMRV research being moved to Viriology I think.

Consistent across the board calls for centers of excellence, all studies to use clearly defined patient cohorts, doctor education, social assistance reform...

Coffin (40 years in retroviruses) was great.

Great to see Cort and others in action!

Sorry - too tired to write more right now - reeling from trying to listen and process.

Final thought - they seemed incredibly impressed that 400 people were watching the webcast - it was the final comment of the day. And that # was taken around noon EST. I have the feeling that it's like letters to Parliament where I'm from, Congress I guess for you - once they receive a critical number, then action happens.

I hope everyone can watch tomorrow + encourage others to do so as well

the link is http://videocast.nih.gov/default.asp

You have to have real player (download included) and have 512 bandwidth so your reception won't time out

islandfinn

 

[_Kim_]

I don't have TV. So I'm not used to watching much video at all - but I couldn't tear myself away. I cried, I got mad, and even laughed a little (Reeves disease).

I was home watching this alone, but having this community here to watch it with and comment with was so wonderful. Like going to a movie and whispering to each other about the good parts.

And yeah, Wanda acknowledged the 400 web viewers twice. They know we are watching and that what they say will be quoted and replayed on Youtube and talked about on forums like this. Even if you can only tune in for a bit of the show, that will click on their viewer counters.

And I gotta say it again: Cort was wonderful!! So composed and articulate. He spoke so much better than half of the committee members.

(I love this place!!)

 

[greybeh]

Some videos available on Youtube, search "CFSAC Meeting"

I want to see it in a less chopped-up form, tho.

 

[leelaplay]

Some videos available on Youtube, search "CFSAC Meeting"

I want to see it in a less chopped-up form, tho.

hi greybeh

How great that videos are on the web already!

When I was watching it on real player, there was a box that said "download video". I've tried a few times and it fails after a few minutes. I hoping this just means that my bandwidth isn't wide enough to be on the forum and downloading video at the same time. Will try again when I can pull myself away.

If you get on real player and try searching for
Chronic Fatigue Syndrome Advisory Committee Meeting (CFSAC) - Day 1
you might have more success than I did

Also, the webcast and the written minutes and submissions are both going to be made available at HHS, but not sure when.

if you have success, please let us know

thanks

islandfinn

 

[Finch]

Thanks for starting this thread, islanfinn. I can't watch any of this as it's happening, because it's completely during my work hours. I was able to catch two of the public comments during my lunch break, and I was so moved! They were the first two, then I had to go. I'm really enjoying the reactions and reports of those who were able to watch.

I'll probably be jumping between here and YouTube for the rest of the evening.

 

[MEKoan]

Is anyone else having trouble getting the video on YouTube to play. It will only play for about a minute and then, even though it looks fully loaded, it just spins and spins... going nowhere.

?

 

[InvertedTree]

It will only play for about a minute and then, even though it looks fully loaded, it just spins and spins... going nowhere.
?

Hmm. Sounds familiar.

 

[Robin]

what can the cfsac do?

I watched most of it and was so happy to see Peterson (who seemed to get a standing ovation but the camera cut away...), Annette Whittmore, the brave patients who gave testimony, Dr. Bell, Dr. Coffin, and Dr. Nancy Klimas (I heart her so much!) It was emotional and at times I was in tears. The CFSAC committee members called out Reeves over and over again.

What caught my attention was the frustration of some of the committee members -- they don't really seem to have much power. Stacy (I forgot her last name, LOVED her testimony) from the Pacific Fatigue Lab, Dr. Bell, and I think Dr. Peterson were all on the committee at one point.

I looked up the CFSAC charter and all they can really do is "advise and make recommendations" to HHS. Well, the Queen of England can advise Parliament but she sure can't make policy.

I just hope the ex officio people were taking notes and actually plan to implement some changes at the NIH and CDC.

 

[V99]

Thank you for posting about the You Tube videos.

I saw a little earlier, it looked very interesting.

 

[MEKoan]

Finally! I was able to hear most of Dr. Peterson's presentation. There was a micro-expression of pure... I can only call it vindication, not that that's an emotion, but the sheer pleasure he must feel at being vindicated after taking crap for allllll theeeeesssseeee looooooooong years flickered across his face for an instant at the conclusion of his talk. I not only saw it, I felt it.

Thank you Dr. Peterson for hanging in there! You were right! You won!

 

[KC22]

Faces to names...

I, too, was glued to the webcast. It was so interesting.

I looked at the people sitting behind the guests and felt proud. It was such a good feeling seeing all of you there supporting our community.

Janis B., Ruth, Cort, Hillary and others.... It felt like I know them, when I really haven't met any of them, but it seems like a family.

A big thanks to all of you who made the trip!!!

 

[V99]

Basically the situation has been a disgrace.

I don't feel that those who have worked against the science should be punished, but I do feel that they are unfit to not only deal with this group of patients, but with any patient.

 

[jackie]

Yikes! I starting watching at 6:15am (Pacific time) and finished at 2:00pm -"watched" the whole thing!

The crazy part is that about every 3 to 10 min. (ALL DAY!) my laptop coverage TIMED OUT! So I'd have to click off and restart -that was the hardest part of the day.

I'll bet I may have accounted for a good portion of those "400" viewings single-handedly! (LOL just kidding!) I got too tired to take notes for the second half of the day, but I probably will tomorrow (going to be better prepared........yeah, easy to say NOW!?)

The cool part was I discovered that I could listen to the webcast, at the same time I reading here (probably could have given real-time updates if my connection didn't time off....and on!))

I was very lucky to have help at home today and that made it easier to stay-put in bed and just watch.

So many incredible highlights of the day....and ONE surreal moment (for me anyway). In the early segment, a slide was shown of XMRV....with the Dr. directing the viewers to a portion of the cell and noting that a small black blip was the newly emerging/replicating XMRV virus.

I just found that to be an eery picture (raised the hair on my arms)....reminded me of the 70's movie "The Andromeda Strain"!

jackieooooooooooooooo!

 

[V99]

I know what you mean. I have not be tested for this, as yet, but to actually see the little git that may have been causing all the trouble. Wow

Perhaps we should have a ME/CFS hall of fame, so we can honour those that have tried on our behalf.

 

[Cort]

Thanks. Usually I do my own thing - quite a bit more cutting than Dr. Lapp's - although he was rather confrontational. For some reason I only got like 3 hours of sleep the night before - I was exhausted - and Dr. Friedberg asked me if I would present for Dr. Lapp. I was out of the room for several hours trying to gain some strength. I never want to get up there - its too stressful - but you do your best!

Mike Dessin is going to be first up tomorrow! Catch it if you can.

 

[zoe.a.m.]

Well you couldn't tell!

I thought you looked remarkably well--hope that's okay to say to someone with CFS as it can be our worst enemy! You were poised and well spoken. I never would have guessed you were functioning on no sleep. What an experience it must have been to be in the room!

 

[MEKoan]

Really well done, Cort! I second everything Zoe said.

Thanks!

 

[Cort]

Mike Dessin Meets Dr. Peterson

Glad to hear it. It was a very unusual CFSAC meeting.

Mike met Dr. Peterson - check this out - he showed him his labs - he said he had the worst RNase L readings he'd ever seen. That blew my mind! He also said - not knowing that Mike had recovered told him "If you don't get treatment this is going to kill you".

Mike got those labs done as he started to go downhill - he certainly wasn't there yet but it was clearly showing.

Dr. Peterson also jokingly said 'Whatever you did I want the patent'

They are going to be in touch regarding his status. Hopefully he'll get a full lab work up done.