Oh good, I didn't see it this morning. I was concerned they were going to have a CDC person to give the "yeah, but...." response.
I'm thinking about what I'd like to ask if I could get through. I have so many thoughts and questions it's hard to sort out the most important one. In addition, while these call in programs get some info out there, it doesn't seem that most questions get a thorough answer, much less give you an opportunity for a follow up question. But if I have enough energy and brain power tomorrow, I think I'll give it a go.
While I am happy to see "something" of major importance finally come out about ME/CFS, this information scares me. Am I the only one out there who is frightened?
What if I gave it to an ex boyfriend? I don't like being linked to HIV either and with no healthcare insurance, how will I afford an antiviral med in the future?
I'm so sad and crying. I don't know how my family will react to this new info as my own father practically disowned me when I got sick. He thought I was making it up and was in denial for 3 yrs before he realized his daughter wasn't getting better. It's been 10 yrs now and I've improved to about a 6 from a 1
Well, on a happier note... If I have to wear one of those orange hazmatt suits I won't have to worry about gaining a few pounds now,, will I? Plus I look good in orange.
"First, I have to state my disappointment in the CDC's approach to this disease in the past. It has approached CFS as a psychiatric disease in spite of a set of biomarkers that indicate immune dysfunction--lowered natural killer cells, problems with RNaseL immune response enzymes, and signs appearing in brain scans. My related question is for Dr. Coffin. What changes does he recommend the CDC's CFS office make in its approach in light of the discovery of the XMRV association?"
hvs, that is a fantastic statement! It is so easy to overwhelm with information, but you managed to give the air of complete confidence with a short list of the most important markers--things that can (and should) be answered.
I'm really looking forward to the show!
Now off to read the piece by the retrovirologist...thank you for the link dsdmom.
Not much to report. One caller question was allowed and it was if Mr. Coffin was aware of Dr. Klimas's work in this area. I beleive the answer was no. The interviewer kept referring to Mr. Coffin as a researcher who was part of the study and he had to remind the interviewer twice that he was not involved in this particular xmrv study. It seemed that no one knew where the study originated from and Mr. Coffin did not seem to have much information about it except the basics and did not seem to know much about CFS. He said he was involved in research several years ago but I am unsure if he meant CFS or xmrv research. He seemed to know more about xmrv than CFS so I am guessing he was involved in xmrv given his background. Anyway...not much to write home about.
This was NOT a very thrilling report and interview.
John Coffin was not very enthusiastic or even knowledgeable about CFS.
I wish they had picked someone else, even one of us could have done a better job.
The good thing is that a lot of people listen to NPR, so at least the word got out.
We were out in the car and pulled in to listen. What a HUGE disappointment. The interviewer didn't seem to know what to ask, although Dr Coffer (?) was right to say that it was a small study, after that, it was downhill all the way.
I actually got "screened" and was on hold to get to ask my question. How disappointing Ira only took one question, and that Coffin was the guest. They couldn't have chosen a more lackluster person to interview. (well, they coulda, but you know what I mean)
As all ready mentioned, at least it was something, but it could have been a hell of a lot better.
Terri I wouldn't worry about the transmission problem. We already know that very few people who are close contacts of chronic fatigue syndrome patients come down the disease. Even if you gave it to somebody something else to dramatically go wrong for them to get this disease for another one. I'll just bet that the virus is not that infectious.
We're still where we were before XMRV came along; ME/CFS is not (very or hardly at all) contagious. Its possible that the virus is contagious but ME/CFS is not. If we were contagious they would have probably found this virus long time ago because it would have been obvious that we were infecting people; whole families would have been getting sick constantly - that rarely happened.