Discussion in 'General ME/CFS News' started by Andrew, Sep 11, 2012.
That answers my "who the hell is this Susan person" question
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)
Dr Underhill's comments were brilliant. I have said similar things, but not so eloquently, and she has done some real investigation on this. Her comments were about cluster outbreaks, and the need to do specific research on these patients and not just on sporadic cases.
Watch the body language of the committee members - some messages get very lackluster responses, minimal grudging clapping.
Andrew - do you know what time you are speaking?
Minister Hillenbrand made an important point, spending on CFS research is NOT an expenditure, its an investment. I couldn't agree more.
He has been ill with it for 25 years?
Nielk - he's talking about his daughter Laura Hillenbrand that has been sick for 25 years.
Ok. Thanks. I was confused. It almost sounded to me as if he suffered too.
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.
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.
I like it when it looks like they want to hide under the table
I had a real chuckle at that Valentijn.
So far we have had some strong testimonies - I feel.
I'm sure you will be great - Andrew. Thank you for speaking for us.
I cant get this to play I just get a blue screen ive never had a problem before can anyone help im using chrome
I'm also using chrome and it works for me.
hmm I now have music and still a blue screen ?
Are they still not back from lunch or something? Or is the feed down?
Good point. They broke a little ate so maybe they are still into their lunchtime.
You can also try a Google Site Search
Separate names with a comma.