Subject:
Chronic Fatigue Syndrome - XMRV Retrovirus and the Blood Supply and Organ Donations
To:
Rep. Fortney Stark
November 6, 2009
I've been suffering with Chronic Fatigue Syndrome for 25 years and I just put this up on my Chronic Fatigue Syndrome Message Boards:
I'm currently watching the CFSAC
http://videocast.nih.gov/PastEvents.asp?... and keeping an ear out for these topics: Blood and Organ Donations.
Dr. Dan Peterson talks about XMRV contaminating the blood supply at around 1:49:00 on Day 1 and the legal implications. He has a patient who got CFS after a blood transfusion and was able to track down the donor and is going to test that person for XMRV.
He says they have cohorts of patients who became ill with CFS after getting blood transfusions and that two lawyers have already contacted him who had worked on cases of HIV being transmitted through transfusions. Leonard Jason also said that he has plasma of a patient pre-blood transfusion and post-blood transfusion and they're planning on testing those.
Day 2 2:02:00-- Jerry Holmburg Senior Advisor for Blood Policy within the office of the Public Health and Science speaks to the CFSAC. He says they understand the disease process of CFS (which is amazing with all the misinformation put out by the CDC, maybe they just think they understand it.) He does state that they probably don't know the disease process of CFS as well as we do.
He said he was going to make a prepared statement to the CFSAC that had been coordinated throughout the entire HHS. Apparently they were sending flurries of emails back and forth about XMRV the night before.
He said a majority of them had just gotten back from the American Association of Blood Banks Meeting in New Orleans and XMRV was a major topic there. He says that they are unaware of CFS being contracted after blood transfusions. Boy, are they out of it!
They are concerned now thanks to the WPI because XMRV is transferred through white blood cells. He said the HHS and other organizations are taking steps now to ensure that the blood supply is safe from XMRV and that they do white blood cell removal which is performed on approximately 70% of the blood products. This is called Leukocite Reduction.
The Senior Advisor for the blood supply then speculates that XMRV may be transmitted through the plasma in which case Leukocite Reduction will not help at all. Dr. Papernik then points out that Dr. Peterson just showed slides on Day 1 explaining that XMRV is transmitted through plasma.
Then Wanda Jones tells the Senior Advisor that he can meet Dr. Peterson and Anne Whittemore as they are sitting right behind him. So Dr. Oleske says, "It would be great if you could shake hands with them." And everyone is smiling as they realize the implications of this. (And my mind is screaming: 'It should have been Elaine DeFreitas 25 years ago!!) --See Osler's Web
The Infectious Disease Agency is now studying XMRV in relation to the blood supply and a report is due within weeks. HHS will remain vigilant in testing the blood supply and will develop interventions as appropriate.
Well, thank goodness! Gee whiz! It took 'em long enough! Grumble, grumble, grr CDC...
Then Rebecca who speaks for the patient population asked the Senior Advisor if he could put a notice up on the CFSAC website stating that PWC should not give blood if they determine that we could be contaminating the blood supply. He says he'll be collaborating with his people about that and doing appropriate PR through the World Health Organization.
Then Rebecca brings up organ tissue donations on your Driver's license. Personally, I've been suffering so greatly I know not to be a donor. The only donation I want is to give my body to the WPI or someone like them that wants to study it for diseases.
The Senior Advisor says he cannot state right now whether or not PWC should be donors. If you have severe CFS you know the answer. I just can't believe this. This doesn't have to do with XMRV, this has to do with the fact that CFS or FMS or any other invisible illness might be contagious through the blood and organs and internal tissues, we don't know.
I'm angry that they aren't already being definitive about this especially now that they know about XMRV. Our government has failed us in the past and it's continuing to fail us. If they had just listened to the patients and the doctors who supported us from the beginning back in 1985 countless numbers of people would have been spared the horrors of living with CFS.
And the band played on....
Currently, the WPI is on Capitol Hill until Oct. 9, 2009. Please do something to support them and help make the blood supply safer.
Alameda , CA
