CCFS Advisory Committee Meeting - Will be Webcast Live

[Forebearance]

watching the CFSAC meeting

I am so frustrated! My connection to the NIH server that is webcasting this meeting keeps timing out. I keep losing the feed. Argh!

At least I got to see a few minutes of Dr. Peterson and a bit of Annette Whittemore's comments.

I thought that Dr. Reeves was supposed to present the final version of his "five year plan" for CFS research at this meeting. What happened to that??? Was it scuttled because of the XMRV discovery?

He should at least be there, if he had half a spine and half a brain.

Forebearance

 

[Kati]

me too, not sure if it's the connection or what, but it times out at critical times when I want to hear what they say...

 

[Forebearance]

CFSAC meeting

I wonder if so many people are trying to watch the meeting live that the NIH server is getting overwhelmed.

 

[leelaplay]

I think it might be a broadband issue. Real player ran a test on my computer - you need 512 kb/sec

 

[garcia]

Yes I'm watching it in London and its crystal clear, no timeouts whatsoever. Stopped now for 10 minute recess.

 

[MEKoan]

Once I got it going, it was fine. I got it going just as Dr. Peterson finished!!! Argh!

But, otherwise, it's working fine. My connection is cable. My browser closed itself in order for Realplayer to begin ~ can't figure out how that works. I opened it again to write this message and Realplayer seems to be unconcerned

Will there be a transcript of Dr. Peterson's presentation made available? (I can't believe I missed that!) I can't remember what the policy is regarding these meetings and transcripts.

There is a lot of drama! The tension around giving Annette Whittemore 5 minutes was intense!

It has been amazing to hear that we a suddenly hot in the research community and that "everyone will want a piece" of us. wow!

Also, was it Dr. Coffin who warned that there was a new lab offering tests that he deemed to be unwise, at best, and something he dare not say, at worst?

The entire issue of testing is very tricky and there seems to be uniformity of opinion that it is not yet available for most of us. That's important information.

OH, they're coming back!

 

[MEKoan]

So funny.... I can hear the soundcheck!!!

LOLOL!

This is a riot!

I was in the video production business ~ it's always audio that screws up and embarrasses everyone!

They are going to be sooo red in the face.

Wanda just said she has really cranky in her old age! LOL!

I taught in a film and video dept. of a college. I had a gig producing a doc. which included coverage of a conference re international development. I rounded up a big bunch of students to cover this event with lots of cameras. They all had headphones. One of the presenters spoke and then went to take a pee while still wearing his wireless mic. The students were all in hysterics because they could hear him peeing.

 

[_Kim_]

Yes, the soundcheck is funny! "You might have to ride the fader". Gosh, I have no idea what this means, but it sounds so serious - all this to get a phone call to transmit through.

 

[Martlet]

I've had no timeouts either, but now I could kick myself, wishing I had recorded it. Has anyone recorded it?

 

[Warbler512]

Minutes

I don't know how long it takes, but DHHS does post minutes for the entire 2-day meeting.

 

[leelaplay]

my reception is fine too

oh that fog - set my alarm for PST instead of GST - missed Peterson AND Whittimore! Tried a real player down load video button, but not working - hopefully just overload with the real-time broadcast and will work later. Any explanation as to why Reeves isn't there?

if

 

[Kati]

Dr Peterson and A. Willemore's presentations were certainly most interesting. I am worried that the woman chair person was not listening to N Klimas' s concerns and kept talking over her- in the end she didn't listen at all.

Also very concerning is the CDC 5 year plan- including research on foster adolescent's fatigue (they have another word for it) - Where is Reeves?

 

[MEKoan]

Tom's petition was just delivered!!! Yay, Tom!!!

 

[Kati]

Very compelling talks from folks here- so far MArly and Robert. Thank you for your voice.

 

[MEKoan]

Marley and Robert

I'm weeping.

I'm weeping and cheering!

Courtney Alexander: "They have found it, you need to fund it!"

The Alexanders blew me away. They also stirred up the wind that may blow away Reeves.

Dr Ablashi is making a strong case for those of us with ME/CFS being riddled with pathology. And continuing the criticism of CDC methods.

It is amazing how powerful truth is.

Now Dr. Joan Grovestein: 'Reeves Disease' will probably consist of people with idiopathic chronic fatigue.... and major depressive disorder but not ME/CFS!

Elaine DeFreitas mentioned!!!!

Go Joan! Go Joan! Go Joan!

 

[oerganix]

A female doctor is telling the meeting to call the CDC's definition of this illness "Reeves Disease" with laughter and applause in the meeting. She also just mentioned the deFreitis findings.

 

[Forebearance]

CFSAC meeting

Yes, I was able to listen to Dr. Grovestein's testimony. It was great! I loved her idea of removing all the people with CFS/ME from Dr. Reeve's studies and calling the malady of the ones left "Reeve's Disease". lol

As she said, they deserve studying, too, but they sure don't have CFS/ME.

 

[MEKoan]

Janice Bell ~ Beautiful presentation about symptom control with alternative modalities. Mentions RichVank and others including Sarah Myhill. It's not easy to express these issues as well as she did. Lovely job.

Thank you Janice.

Ruth Bell ~ Janice's mom. Wonderful presentation from a mother and therapist. Heartbreaking, just heartbreaking.

Thank you Ruth, I'm weeping again.

I'm weeping for Janice, and for Ruth and for me.

Thank you, thank you, thank you!

 

[MEKoan]

Carol
Very eloquent statement. How the CDC bungled our lives. Really gets at how callous the CDC has been. Dr. Reeves is held to account. Asks that treatments being used in other parts of the world be approved in the US.

Carol spoke for all of us when she asked if those at the CDC can live with themselves and suggested they should be held criminally responsible.

What a morning!

Thank you Carol!

 

[Kati]

Am also very thankful Elaine De Freitas's work has been mentioned. Also liked the bit saying CDC should be held criminally responsible. I hope there will be reorganization in the department and also restructuration of their 5 year plans for they are using CFS money for the purpose of other studies.

I certainly hope "they listen" once and for all.

I can't seem to peel myself away from this webcast...