I think this belongs here;
Since days and weeks I am on different boards reading about the topic of the day, XMRV and the controversy surrounding the hold on the FDA, Alter paper. While I was watching and listening I started to realize that most of the researchers and agencies working on XMRV/ME/CFS know shockingly really very little about ME/CFS and definitively nothing about the urgency for us patients, to get help and results. We, on the other hand, do know very little about these big agencies; how they work and think. (I am not talking about the few mentally retarded at the CDC. We know how they think, but they are not representative of all the agencies and researchers, although they had far too much influence on the politics surrounding ME/CFS. )
I ask myself the question if we are doing a good job, the way we advocate for our "cause”?
First thing, shouldn't we get to know who your dealing with.....?
In the search for this answert i started searching and found this transcript covering the meeting of FDA, EMERGING INFECTIOUS DISEASES: IMPLEMENTATION AND TRANSPLANTATION SAFETY. It is long and really boring, but it shows what is going on behind those doors and how these people work and think. Here just a few phrases which caught my eye:
“From a public policy point of view, I think there's a lot of pressure, there's a lot of pressure particularly from people with CFS, which is a disease of considerable concern, and their belief is that if this is -- does have an infectious cause, and that's a very open question, shouldn't we be reducing the risk of transmitting this to other people. But the problem of transmission of XMRV if it is a problem, it's going to be very much bigger than I think CFS alone. “
"In the context of XMRV, I think that there is an emergency, but it's a perceptual emergency. And I'm not as well versed in the tools of managing that, but I think that what we need to do is to manage people's reactions rather than people's safety at this point. "
"Just a follow-up to the last comment that Roger made that I agree very much, and I think you touched the important point, is that I believe that we are going to confront this type of issues more and more frequently. It became a pattern with for instance, Gulf War syndrome, and all that where affinity groups as you called -- have adopted transfusion as a way of calling more resources to their issues.
And in fairness to them, it's a very serious problem and they haven't gotten enough in attention and support. But I think that we have to be able to deal with the issue because it is going to become more frequent than it is now.
MR. DODD: Thank you. I'm glad you said it, not I"
DR. ALTER: "Yeah, well, I was going to say something very similar to Roger. I think this theoretical formula that I would have -- you can do the same by logic and eyeball (phonetic). But if you had a formula and you took XMRV we know a rough donor prevalence that we'd be okay there but we haven't yet proven it's blood transmissible. That information should probably be coming out soon. But we don't have a disease. So I think -- so that would turn your formula right now to zero but -- so that puts it into a very low priority based on science. That's where maybe perception would come in and then the perception would say well, maybe we should do something but something mild. You know, maybe ask a question or give more information to the donors. Those are mild interventions which are commensurate with the risk. If it turns out that it really causes chronic fatigue syndrome that it moves up the ladder on your priority list. "
I posted this train of thought on another board and someone on that board directed my attention to other agencies involved in the of ME/CFS.
Here is what he said:
There are those who know, and they don't want the blood supply issue to come up.
You need to see who has been in charge of the NIAID at NIH for 26 years.
RE-POST; ANTHONY FAUCI April 17, 2010
I continue my train of thought and try to summarize:
So, who do we have there at NIH ? Anthony Fauci .
Seems he as well does not know ME/CFS, does not understand the urgency and it seems he is mainly interested in getting HIS research grants. (Do we know where this grants are really going?I mean now?)
We have the FDA: does not know much about ME/CFS and they do not see the urgency in XMRV as long as the virus is not associated with a disease, but want further studies!
They also want to control public reaction to the new retrovirus XMRV, rather than control the spread of the virus XMRV! (See text of conference above)
The CDC has just revamp their website , they continue more than ever to propagate ME/CFS abnormalities are theoretical and experimental, even though all the experts and all of them use the Canadien Consesus Diagnostic Criteria and have accepted those test as part of the diagnostic process.
So, where are we?
The publication to the study which could prove the disease link of XMRV to a disease (Alter publ.), which according to the FDA is needed to upgradeXMRV to an emergency topic, has been halted.
First international Workshop on XMRV has topic speakers wich are NOT ME/CFS speakers ! Micovits is getting side lined?
ADVISORY COMMITTEE BLOOD PRODUCTS MEETING does not list the FDA/Alter studies and goes into a meeting without the results of the most important replication study on XMRV , which could prove disease association !
The CDC denies any biological abnormalities are valid in ME/CFS, that it self endangers Micovits study to be seen as questionable and possible all other future studies, because we do not have a patient cohort criteria which is validated !
All three Agencies seem to have one factor in common, although because of different reasons:
All three agencies want to dissociate XMRV from ME/CFS !
What do we need to do to get results AND HOW DO WE REACT TO THE RECENT EVENTS?