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CFSAC meeting Oct 3-4, 2012

V

Valentijn

Senior Member
Messages
15,786
Hope123 said:
Dr. Maier is being a wall -- every year researchers ask for money and get nothing. In times when NIH was doing well, CFS recevied little funding; now they're using the budget again as an excuse.
Click to expand...

That answers my "who the hell is this Susan person" question :)
 
Nielk

Nielk

Senior Member
Messages
6,970
Dr. Koh spoke first at the introduction.

He related that there is new urgency to ME/CFS at the NIH due to president Obama's interest in it.

He also spoke about the fact that there is a need for a unified accepted case definition that is based on scientific validity.
He said that by the end of the day tomorrow, they will hopefully come up with this "case definition". (this is how i understood it)
 
Hope123

Hope123

Senior Member
Messages
1,266
Nielk said:
Dr. Koh spoke first at the introduction.

He related that there is new urgency to ME/CFS at the NIH due to president Obama's interest in it.

He also spoke about the fact that there is a need for a unified accepted case definition that is based on scientific validity.
He said that by the end of the day tomorrow, they will hopefully come up with this "case definition". (this is how i understood it)
Click to expand...

Thanks, missed the first part.

That statement about definitions is concerning to me. I am concerned that some CFSAC members have little direct experience or knowledge with ME/CFS and whatever case definition they can come up with will be flawed and cause harm. The agenda doesn't list any of the major people involved with the Canadian or ICC as speakers. If they wanted to have a real as opposed to fake discussion on this topic, they need to invite the experts on definition. Having said all that, I hope my predictions are wrong.
 
Andrew

Andrew

Senior Member
Messages
2,517
Location
Los Angeles, USA
Nielk said:
Andrew - do you know what time you are speaking?
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I'm speaking between 4 and 4:15 on Wednesday. And after watching the first round here, I can see some things I could have done better in preparing my speech. But I don't feel like tinkering with it now.

I hope nobody gets mad at me for using the term Chronic Fatigue Syndrome (CFS) without adding ME to it. My reason is I am trying to paint a picture about the context in which that name was invented, and what followed the invention of that name.
 
Nielk

Nielk

Senior Member
Messages
6,970
Andrew said:
I'm speaking between 4 and 4:15 on Wednesday. And after watching the first round here, I can see some things I could have done better in preparing my speech. But I don't feel like tinkering with it now.

I hope nobody gets mad at me for using the term Chronic Fatigue Syndrome (CFS) without adding ME to it. My reason is I am trying to paint a picture about the context in which that name was invented, and what followed the invention of that name.
Click to expand...

I'm sure you will be great - Andrew. Thank you for speaking for us.:)
 
Nielk

Nielk

Senior Member
Messages
6,970
Good point. They broke a little ate so maybe they are still into their lunchtime.
 
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