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.
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.
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)
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'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.