How should we act on the Blood Supply issue?

[citybug]

This issue keeps coming up when we talk about slogans or tshirts.
Some say it is too scary. We will hurt ME/CFS patients and advocacy efforts by bringing attention to transmission.
Others say we can prevent serious illness in others, by putting pressure on the blood safety committees.
It's gotten the most press. It's where the media and government are paying attention.

Personally, I'm not that excited about demonstrating (if I can) at the blood supply centers. I'd rather pick more central locations. I do feel we are in a unique position to tell people how serious this illness is, and why they should screen the blood supply. I haven't read the last transcripts yet. This was one CFSAC recommendation that was listened to, to use a questionnaire and discourage blood donations.

I think the transmission is going to be more complicated in the end. Immune subtypes or other immune assaults could make us more suseptible to the retrovirus, or it's reproduction in our own bodies. It doesn't spread easily. I don't know anyone I have given it to in 20 years. I still suspect ticks or other insects which haven't been looked at yet. But people having major operations or transplants will have an assault or immune compromise while they are receiving blood transfusions from the 4% healthy carriers.

Linking with HIV could be our best bet for drug development. I think they are looking at peptides, and cyclodextrin (thread here somewhere on Niemann Pic Disease (sp?) and HIV using lipid rafts).

 

[Sasha]

I think that when the Alter paper is published (next very few weeks) the blood supply issue will take care of itself. If the Alter paper confirms the WPI findings as we expect I don't see how the govt can avoid moving to protect the blood supply, not just against donations from people with CFS, but against healthy people (around 5% of whom were XMRV+in the WPI/Alter healthy control groups). The blood supply must already contain XMRV at around that 5% level, unless something very weird is going on.

Banning people with CFS from donating blood clearly isn't enough to prevent XMRV from getting into the blood supply; CFS XMRV+ people are outnumbered about 10:1 by healthy XMRV+ people (extrapolating roughly from WPI/Alter numbers). This is a much wider issue than CFS.

I think that the Alter paper will be a huge boost to the XMRV/CFS connection and after that, all systems go, with no need for us to point out how serious the situation is.

I also have concerns about frightening people and making pariahs out of those of us with CFS (particularly kids).

A complex issue, I know, but just my view.