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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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CCFS Advisory Committee Meeting - Will be Webcast Live

K

_Kim_

Guest
Wonderful Cort! Thank you so much for speaking for Dr. Lapp. (YOU LOOK GREAT ON TV!!!)
 
M

markmc2000

Guest
well delivered cort

Very powerful and clearly communicated Cort. First class, thank you very much for taking initiative.

Mark
 

Marylib

Senior Member
Messages
1,132
I missed everything, being on NZ time...
Does anyone know if I can watch it anywhere?
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
That was awesome! I've been glued to the screen all day. She said there were 400 viewers online. Should have been much more IMHO. Looking forward to Day 2 tomorrow. Way to go Cort & others.
 
K

_Kim_

Guest
Marylib, the meeting just ended for the day and will resume tomorrow 9:00am EST.

anne, yes you missed Cort - looking fabulous and speaking on behalf of Dr. Lapp
 

Martlet

Senior Member
Messages
1,837
Location
Near St Louis, MO
That was brilliant. Even my husband watched it with me all day. We did a lot of crying at the personal testimonies and also when listening to Dr. Bell. Then Cort came on and there was I, jumping up and down in my seat yelling "That's OUR Cort."

Good job, Cort.
 

Carla-nl

Veteran by now
Messages
64
Location
Europe
crap

crap... my video link broke just as Cort came on :) Audio was still tere tho.

Mr. Oleske has some more issues than dyslectia me thinks.

Anyway, watching the bold statements that were made gave me faith. Let's hope someone finally wakes up !
 

Frickly

Senior Member
Messages
1,049
Location
Texas
Does anyone know how many people were in attendence? Also, I missed Dr. Bell. Anyone willing to give me the highlights of his talk?
 
K

_Kim_

Guest
Love this quote from the wall of WPI's facebook page:

"That's one small step for XAND. One giant leap for XANDKIND."
 
K

_Kim_

Guest
For everyone who missed Cort (and the rest of the meeting)...this event will be available for on-demand viewing in the Past Events archive as soon as possible, usually within a few days.

Frickly, Dr. Bell talked on Factitious Disorder and CFS in Adolescents. His PPT was posted on the agenda page for the meeting (scroll to 3:30).

But...the better part (IMO) of his talk was the Q&A after his PPT. Take home message: childhood sexual trauma does not cause CFS!!!!
 
K

_Kim_

Guest
Klimas comment

And one of the best comments of the day from Nancy Klimas: "Doctors are causing post traumatic stress disorder".
 

Kati

Patient in training
Messages
5,497
And one of the best comments of the day from Nancy Klimas: "Doctors are causing post traumatic stress disorder".

Ohhhh I missed Cort and I missed Nancy saying that! (Instead I had to go educate my family dr about XMRV ;) )Will watch it as soon as it comes out

Essentially what I retain is many people have scolded the CDC but especially the CFS program for their non-existent support and also the crimes they have committed.
 
K

_Kim_

Guest
A Senior Moment

I just noticed that some time today - in making comments on the meeting - I had a senior moment. That is, I was promoted to "senior member" here (more than 100 posts). How'd that happen so fast??
 
K

_Kim_

Guest
Andrea Whittemore just posted her take

From the WPI Facebook Wall

"Okay so here we go. At first social security guy talked , then Dr. P then Wanda happened , then Annette, then Dr. P, then John CoffinPHD, then xmrv stuff funding that sort of thing, then lunch , vomittee (very funny typo Andrea!!) meeting , personal stories that were heart wrenching , then people hitting hard on DHHS and CDC, then Dr. Bell more ...heartwrenchkng pediatric stories , then more private stories of families devestated by ME/CFS! Wow best meeting Ive ever seen . And I've been to A lot !!! Sat through 48 hours once . Had no clue yiu could pick and choose .

The news about twins , fibromyalgia , autism, CFS was the most compelling data that XMRV very seriously needs to be looked at. Do not donate blood and the head of blood supply is coming to tomooroe's meeting . This doesn't even tap the iceberg that just hit Washington , DC. !!!
it's a whole new day tomoorow . And I thnk for all of it's a whole new world of research possibilities for ME/CFS:)"

"This is what people missed emotionally: boredom, shock, anger , frustration , misery , sadness, disbelief , enlightenment, happiness, joy and all over again for 8 hours!"