The really big storm! I don't know what to say to those of you who are scared droolless. (drool is a wonderful thing) Tina lays it out pretty darn nice. The fear that those who have hurt the CFS/ME community in the past could do it again is understandable but the now is so different from the then that I have no problem with hanging out in the glass is overflowing group.
Just the people involved in this like Dr. Coffin, Dr. Goff, the Dr.'s Ruscetti, Dr. Alter, Dr. Lo and that's just the cream!
My glass overflowing prediction (drum roll please) August 23rd release of the NIH and FDA papers with a follow up Press Release banning of CFS patients from donating blood, organs or tissue in September. And then my fellow foggy brain, awesome, cool wonderful crew it's going to be all CFS all the time. News channels, talk shows, documentary's, and print. You better have your stories ready cause everybody is going to want to know. (grins)
That's my prediction and I'm stickin' too it! Woof!
I posted this in another thread but thought I would cross post since I think itis pertinent.
I guess I am pretty lucky. My GP is in the Davenport, IA area. Louis Katz, the member of the AABB task force that made the recommendation that CFS patients not donate blood is also in Davenport so the CFS blood "ban" story made the local newspapers.
My GP told me that many of his patients that have a fatiguing illness are already asking about XMRV after reading about it in the newspaper. He was totally open to the possibility that XMRV could be responsible for CFS. I think this will become true for most physicians as the story hits the main stream news.
Dr Reeves? predicted the the CDC would not find XMRV right of of the gate, if I rememeber corrrectly?
Dr Reeves may have been familiar with the CDC policy of just plain ignoring CFS, and with the current leadership he is familiar with, figured that wouldn't change.
However, along comes DR ALter(A big shot with power) who believes in this XMRV thing and wants to solve it, and has power over the NIH. Bang! DR Alter finds it. OH SHIT!!! a big controversy makes it to Katerine Sebilius's desk over the conflict between the CDC and the NIH. (the head of HHHS, who has been appointed by Barack Obama I believe) Barack throws his weight around, but can only go so far with this secretive and powerful thing called the CDC. (Barack is an idealist to a fault, and prefers not to kick the can down the road, totally against american tradition....) SO grudingly, they all agree to let the CDC thing out to quash things for awhile, by releasing this bogus negative study, but in the mean time Alter is allowed to go back and prove what the prevalence may be.( Barack ordering studies and opinions). Example, remember how Dr. ALter mentioned, it may move up on the the to "do list"?, "radar"? (or something to that effect as seen in another post n here somehwere) if XMRV is in CFS patients?. I think he can prove it, and then some. He can probably create some statiscal data to shoow the likelyhood of this causing CFS. Which will probably be quite high based on the WPI 60%-97% findings.
So They are all figuring out the ramifications on blood, economy, politics, and message to public.
This whole thing caught Barack by suprise, and he CDC for that matter, becuase the environment of kicking the can down the road is changing under Barack.
I think it will come out, may take a little longer than some hope. But on it's way for sure
To me, the whole Alter paper thing smacks of a set-up for disappointment for the CFS/ME community. Dr. Alter is not a CFS/ME expert, and his apparent co-author Dr. Lo has worked with CFS patients, sure, but I can only find stuff on the net in that regard for weaponized brucella and military patents relating to scary creepy stuff about mycoplasma microbe research he did on CFS from decades ago.
It makes no sense to pin all hopes for clarity on an unpublished study that has also been effectively quashed at the highest levels of government. Without that study, all of the published zero/zero studies pretty much leave XMRV research stranded in the hinterlands.
Perhaps its time to just let XMRV go in terms of looking to a retroviral pathogen being connected to CFS.