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CFSAC Webinar: March 11, 2014 from 12:00-5:00 PM Eastern Time

Ember

Senior Member
Messages
2,115
Posted by Wildaisy:
The webinar's main purpose is to have more discussion around the potential recommendations coming from the two workgroups. We will provide an opportunity for those who had been scheduled for the December 10 public testimony (cancelled because of weather) to give their testimony. We will also have reports from the agencies who weren't able to give their report during the December webinar.

Further details to follow.
 

Iquitos

Senior Member
Messages
513
Location
Colorado
The webinar's main purpose is to give the illusion they are doing something about this disease, the same illusion they have put forth since CFSAC was created. Nothing helpful has EVER come out of a CFSAC meeting; I don't expect that to change.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
The webinar's main purpose is to give the illusion they are doing something about this disease, the same illusion they have put forth since CFSAC was created. Nothing helpful has EVER come out of a CFSAC meeting; I don't expect that to change.

Yes, actions speak louder than words!

GG
 

Nielk

Senior Member
Messages
6,970
I have a three minute speaking spot. What would you like CFSAC to hear?
 

Nielk

Senior Member
Messages
6,970
I am seeking first hand accounts of how CBT/GET has harmed you. If this type of "treatment" has been tried on you and you have seen a direct correlation with a decline in your ME/CFS symptoms, please reply here on this thread or PM me with a short account of your experience. I want to gather them and include them in my speaking spot at the next CFSAC (March 11th) webinar phone-inar.

The format should be something like this:

What is your age/sex?
How long have you been sick?
What was your level of functioning before CBT and/or GET?
What is your level of functioning after CBT and/or GET?
In what way has this effected the quality of your life ?
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
I have a three minute speaking spot. What would you like CFSAC to hear?

I was hoping that someone giving testimony at CFSAC would talk about the appalling level of NIH underfunding (our usual $5m a year vs MS's $115 a year, despite it affecting roughly 40% of our numbers; $2.8m for us and $18m for male pattern baldness, according to Nancy Klimas) and how patients are being forced to try to crowdfund studies that the NIH should be paying for. I'd love there to be a mention of the crowdfunding campaign for the Lipkin microbiome project - we hope to have a website & FB page up very soon and it would be great to have the web address mentioned.

Not sure if this appeals to you in particular, Gabby, but if not, maybe other people giving testimony might be interested.
 

Ember

Senior Member
Messages
2,115
I have a three minute speaking spot. What would you like CFSAC to hear?

In case you find them useful, here are some quotations relevant to Dr. Unger's infamous study:

http://forums.phoenixrising.me/inde...ng-unger-and-lipkin.24743/page-18#post-386946

http://forums.phoenixrising.me/inde...-criteria-for-me-cfs.24969/page-3#post-383741

http://forums.phoenixrising.me/inde...ase-definitions-now.23217/page-10#post-366763

You might want to question too Dr. Lee's charge to the IOM Committee: “HHS has requested that the IOM committee coordinate with two ongoing HHS efforts concerning ME/CFS in order to minimize overlap and maximize synergy.”
 

Ember

Senior Member
Messages
2,115
CFSAC Meeting December 2013: Webinar from Hell
Posted on March 11, 2014 by Jeannette Burmeister
There is no way to sugar coat this. The December 2013 CFSAC webinar was a colossal middle-finger salute to the patient community. Despite the webinar format having been a complete disaster in December, we will be treated to another CFSAC webinar tomorrow; patients can hardly wait, so it seems like a good time to recap....

The link on the CFSAC website to tomorrow’s meeting, “View the presentations and listen to the webinar,” is not working (see screen shot below), which definitely doesn’t bode well for a successful meeting tomorrow. Yet, the December meeting set the bar so low that it is hard to imagine that it will be worse tomorrow, but I certainly don’t want to jinx anything.

 
Last edited:

Nielk

Senior Member
Messages
6,970
*Members of the public may follow the instructions below
to access the webinar via computer or via the
telephone. You will not need to use both.*

Please use the speakers on your computer to listen to
the webinar.

The Webinar will be a "virtual meeting" using Adobe
Connect Pro, a web conferencing product that allows users to conduct live meetings and presentations over the internet.

Participants will have the option to either view and/or
listen to the webinar via Adobe Connect Pro or by
listening via telephone only.



Adobe Connect URL:
http://hhs.adobeconnect.com/owhcfsac/

If you do not have access to a computer, you can
listen via telephone using the dial in information listed
below:

Conference Call Number: 888-843-9210

Participant Passcode: 6457922
 
Messages
44
Location
USA
I'm listening. The sound quality is pretty poor. It's pretty ridiculous that they didn't do a video feed for this. It's not difficult to do if you have the equipment, which we know they do. :rolleyes: