XMRV Blood Transfusion Study\

[Frickly]

Andrea posted the following on facebook:

The WPI will be putting out info on a study on blood transfusions. If you believe you became sick after a blood transfusion please contact info@wpinstitute.org. The transfusion has to have been in the last 7 years. Please contact us immediately with where you were transfused IE hospital, date , reason and your contact ...info if you would like to be part of a Study. We will be in contact.

 

[Hope123]

The 7 years is used because blood banks are supposed to store blood samples from blood that has been transfused for purposes of investigations about blood-borne illnesses. I would also suggest that if you happen to have had a blood transfusion and have donated blood pre-CFS within 7 years that you notify the WPI of this also. It would be interesting if they were able to find a person who had no XMRV prior to CFS (past blood donation sample), had a blood transfusion (which is XMRV+), and then became XMRV+ post-CFS. I don't know though if the system is in place to trace a past blood donation to a particular person.

It would make the story of infection from transfused blood much tighter. If you were XMRV+ after an XMRV+ transfusion, the argument could still be made that you got XMRV elsewhere and not through a transfusion. (i.e. you were XMRV+ pre-transfusion) They could be working on the data to date though that the % of healthy people with XMRV is low.

 

[Advocate]

I just thought of something. It wasn't until straights and hemophiliacs started getting AIDS that the disease was taken seriously. Do hemophiliacs have a higher rate of CFS? Is the blood they use filtered in such a way that it would keep XMRV out?

Incidentally, there are a few people on this forum who have mentioned that they donated blood.

 

[Kati]

Good on WPI for doing this study. It sounds like it is in reaction to the negative statement from the blood task force.

 

[starryeyes]

Good question Advocate. This is very exciting! I can't wait to see what they find out. Remember Peterson was saying at the last CFSAC that HIV lawyers were already contacting him about this issue. I know people who have gotten CFS from blood transfusions but unfortunately they had to have gotten them up to 7 years ago or they can't be in this Study.

 

[VillageLife]

Hope this doesn't mean the blood bank has found no xmrv

 

[Frickly]

This just means that they are looking at the studies that have been done so far at WPI and the UK. I don't think WPI is happy about the statement from the AABB, "At present, there are no specific recommendations regarding deferral of individuals with diseases or syndromes that have been linked to XMRV, although such donors would be deferred if, on the day of donation, they respond negatively to the question, “Are you feeling well today?”

AABB Statement on XMRV Task Force
http://www.aabb.org/Content/News_and_Media/Statements/statement021710.htm

 

[usedtobeperkytina]

Advocate, good question.

If there were a rating system here, I would give you an A.

Tina

 

[Hope123]

Hemophiliacs do not get whole blood but a component of it with proteins that help their blood clot. It sounds like from this blurb from Wikipedia that they use specific methods to kill off HIV and other viruses aside from just screening donors. Heat is used but ?UV irradiation also.

For treatment of hemophilia A, cryoprecipitate or factor VIII concentrates, heated or unheated, are available. For treatment of severe hemophilia B, factor IX complex is preferable. Both of these concentrates are prepared from pooled plasma, and the risk of virus transmission is negligible as there hasn't been an infection since 1985 when techniques were developed to kill of viruses including HIV.

 

[usedtobeperkytina]

I am surprised this study is just starting. But maybe this is a reflection that a standardized test is now available, at least for blood banks. Mikovitz said a little while ago, Jan. 22 that a standard, better test would be available in a month. Well, it is almost a month. So now that they have the test they are ready to actually start testing the blood.

Tina

 

[acer2000]

I don't see anything on the wpi facebook or their website about a trial. Can you post a link to the actual trial information? I got CFS after surgery which included getting 4 units of blood. I was completely healthy prior to this.

thanks

A

 

[Frickly]

Sorry, there is a mention of it on the last post of WPI facebook page. I got my information from Andrea Whittemore's facebook page. They say that they will post something on the website soon.

 

[Kati]

Asus, on Andrea's page iit said to e-mail at info@wpinstitute.orgwith the transfusoon and situation details.