Discussion in 'Upcoming ME/CFS Events' started by Ember, Jan 28, 2014.
Posted by Wildaisy:
It's only going to be a half day??? Again!
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!
They called me that I have a speaking spot since I couldn't deliver in December.
Squeaky wheel gets the grease
I have a three minute speaking spot. What would you like CFSAC to hear?
go to hell?
I hope you don't mean me?
No, not all, love you! Not the useless gov't which has done nothing of significance in a generation, and only muddies the waters!
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 ?
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.
In case you find them useful, here are some quotations relevant to Dr. Unger's infamous study:
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.”
CFSAC Meeting December 2013: Webinar from Hell
Posted on March 11, 2014 by Jeannette Burmeister
*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 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:
If you do not have access to a computer, you can
listen via telephone using the dial in information listed
Conference Call Number: 888-843-9210
Participant Passcode: 6457922
It's starting in three minutes
Roll call starting.....
Is anyone listening in?
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.
You can also try a Google Site Search
Separate names with a comma.