CFS sufferers and blood donation--Wall Street Journal blog

[richvank]

http://blogs.wsj.com/health/2010/06...fferers-may-be-asked-to-avoid-donating-blood/

 

[Athene]

Good for our illness to be taken seriously. But let's be honest, how many peope with CFS would seriously consider donating blood? I feel as if I only have about half as much as I need for myself. When I stand up my head is empty.

If we all started donating blood out of spite, we could probably create a pandemic. (A real one rather than a swine flu one, I mean.)

 

[Forbin]

Katz says that in materials his center is preparing to distribute, potential donors’ contact information will be requested so that if future studies indicate XMRV is not transmitted through the blood or is deemed not to be harmful, the center can get in touch with them. “I don’t want to lose blood donors I don’t need to lose,’’ Katz says. “If XMRV turns out not to be important, we want to get them back.’’

http://blogs.wsj.com/health/2010/06/14/chronic-fatigue-sufferers-may-be-asked-to-avoid-donating-blood/

I feel safe now! In fact, the next time I need blood, I'm going to specifically ask for the kind with the “harmless” retrovirus in it. It will give my cell machinery something to do.

 

[V99]

What I would say to Mr Katz - so get on with it then.

 

[bullybeef]

I believe one point of a blood ban is to raise the profile of the disease, if its in our blood, it cant be in our heads!!

 

[V99]

Bingo, bullybeef. What do they really fear? What should they fear?

 

[Esther12]

What's going on here?

How come these blood bans are coming through 9 months after the science paper, and now we've got 5 further studies which found no link between XMRV and CFS? I had been assuming they know something we don't, but it's been ages since the Canadian ban, with nothing published. Are they just really slow?

 

[V99]

Perhaps they do know something we don't, perhaps certain scientist have been backing the Science study, persuading them that the three negative papers don't really help.

I should add, I don't mean Mikovits. I'm talking about the really big names involved in this, the ones still doing XMRV research.

 

[jimbob]

I'm with esther12, why isn't something in the national news already. This retrovirus is obviously the real deal! We need more than the piddly stuff that's been coming out! I want to see something on a major network news broadcast!

 

[ahimsa]

But let's be honest, how many people with CFS would seriously consider donating blood? I feel as if I only have about half as much as I need for myself. When I stand up my head is empty.

That's a funny image and probably pretty accurate, actually! I remember watching a webinar about orthostatic intolerance (POTS, NMH) that was called "Going With The Flow -- Blood Flow, That Is" (see

- and I think the slides for the video are on the www.cifds.org web site somewhere)

There is a graph (about 45-46 minutes into the video ?) that shows the cerebral blood flow for normal controls vs patients. It was pretty amazing to see that graph. I laughed and said, "Oh, so that's what's happening when I stand up and can't think or function normally!"

As I was telling someone a few days ago, gravity is my arch enemy. Stupid gravity....

 

[usedtobeperkytina]

These little studies we have seen have added evidence.

The macaques, the Germans with it in immunocompromised folks, the response of the virus to anti-retroviruses, etc.

All of these show the features of XMRV are in line with a virus that causes illness.

Tina

 

[Impish]

Canada is especially cautious because we had some major screwups with the blood supply here. As a result the blood agency is very risk adverse (as they should be IMHO).

 

[Athene]

Now I'm in a less flippant mood I want to comment that I think this blood supply business is the reason we still haven't heard anything from the CDC yet about their replication study of the WPI's findings on XMRV.

Imagine the scenario where they declare to the world that XMRV causes CFS (and maybe cancer) and that 4 percent of the healthy population carries it. Suddenly the nation's ENTIRE blood supply is unusable. The only lab in the world which can check whether any blood is safe is a tiny lab in Nevada which has the capacity to test 30 specimens per week.

We would have a national medical crisis. How many people would die or else have to risk a transfusion of contaminated blood that could make them seriously ill for life, or kill them?

I suspect that the CDC is already trying to lay the groundwork to deal with this before they announce what they have found out about XMRV.

(BTW Ahimsa, I often think that there is simply far too much gravity around me, making it hard to drag my legs up the stairs, an effort to get off the sofa, and just shoving all the blood right down to my feet!)

 

[L'engle]

Ahimsa: thanks for posting the link to the webinar... the graphs are very clear! Not only is the illness not in our heads, the blood isn't either!

 

[garcia]

Now I'm in a less flippant mood I want to comment that I think this blood supply business is the reason we still haven't heard anything from the CDC yet about their replication study of the WPI's findings on XMRV.

Imagine the scenario where they declare to the world that XMRV causes CFS (and maybe cancer) and that 4 percent of the healthy population carries it. Suddenly the nation's ENTIRE blood supply is unusable. The only lab in the world which can check whether any blood is safe is a tiny lab in Nevada which has the capacity to test 30 specimens per week.

We would have a national medical crisis. How many people would die or else have to risk a transfusion of contaminated blood that could make them seriously ill for life, or kill them?

I suspect that the CDC is already trying to lay the groundwork to deal with this before they announce what they have found out about XMRV.

Brilliant post & analysis Athene!

 

[Impish]

Now I'm in a less flippant mood I want to comment that I think this blood supply business is the reason we still haven't heard anything from the CDC yet about their replication study of the WPI's findings on XMRV.

Imagine the scenario where they declare to the world that XMRV causes CFS (and maybe cancer) and that 4 percent of the healthy population carries it. Suddenly the nation's ENTIRE blood supply is unusable. The only lab in the world which can check whether any blood is safe is a tiny lab in Nevada which has the capacity to test 30 specimens per week.

We would have a national medical crisis. How many people would die or else have to risk a transfusion of contaminated blood that could make them seriously ill for life, or kill them?

I suspect that the CDC is already trying to lay the groundwork to deal with this before they announce what they have found out about XMRV.

(BTW Ahimsa, I often think that there is simply far too much gravity around me, making it hard to drag my legs up the stairs, an effort to get off the sofa, and just shoving all the blood right down to my feet!)

I have been thinking about this for awhile as well. Given the nature of broadcast news you can bet if this is proven that it will be all over the place. Plus there will be a bloodletting as fingers are pointed all over the place and political points are attempted to be scored. Since fear = ratings you can bet that what would come out of the news media would be bordering on dangerous. Honestly, if I was in the position of managing the response and release of the information that XMRV does equal CFS I would spend a fair amount of time behind the scenes making sure that plans and mitigation strategies were in place before allowing the positive results to be published. If you thought that the H1N1 freakout was bad and pepole were wearing masks as a result of other flus imagine the impact of something already in 3% of the population that no one is sure how it is transmitted...

 

[George]

Bingo!

It's hard to believe that the CDC, DHHS and NIH may actually be acting in a responsible manor (grins) but I think they are truly trying to do things right. I agree that the positive studies are most likely being held up in order to get a response in place that won't create a crisis.

UsedtobeperkyTina pointed out to me the other day that everyday that the Health agencies wait means hundreds of people potentially become infected and that's a good argument for moving as quickly as possible which is the other balance to this equation.

Course this little bug-a-boo has been loose for decades at the very least so, I'm guessing the powers that be are weighing the months to get set up to handle the problems of the virus itself, verses the years that it rampaged through the population to get us to a minimum of 3% of the population infected!

Not fun problems for the PTB's to have to deal with!

 

[Athene]

Another thing I spotted that could add weight to my theory is that the WPI website talks about a new technology they offer which can "clean up" extracted blood and remove XMRV for it, so that it can be used for transfusion. This made me think maybe they were anticipating this type of problem/situation.

http://www.wpinstitute.org/news/docs/WPI_pressrel_051810.pdf

"In the joint study conducted by WPI and Cerus, blood samples were evaluated in a validated
virus culture test, which allows sensitive detection of XMRV particles that are capable of
reproducing. Cerus' INTERCEPT Blood System inactivates pathogens by crosslinking their
DNA or RNA, thereby blocking replication and preventing subsequent transmission of infection.
INTERCEPT has previously been demonstrated to inactivate high levels of both HIV and HTLV.
Cerus and WPI decided to collaborate on inactivation studies for XMRV in order to characterize
the treatment's efficacy against this newly recognized human retrovirus.
While research is ongoing regarding the prevalence and disease association of the virus,
concern for potential transfusion transmission of XMRV has already led blood centers in
Australia, Canada, the United Kingdom and New Zealand to ban donations from blood donors
with ME/CFS. Earlier this week, the Chronic Fatigue Syndrome Advisory Committee of the U.S.
Department of Health and Human Services voted unanimously to recommend that U.S. blood
centers also defer donors with diagnosed ME/CFS."

 

[usedtobeperkytina]

Key is testing.

When there is a test available to the public, then it will be ok to announce findings, if in fact our assumptions are accurate.

When they can announce they are testing blood supply and any future transfusions are safe.

But, I think we are assuming. Many other reasons for "delay" and there may not even be a delay. Just may be results aren't matching other results or problems were found in the study method that needs to be worked out before publication. Remember, WPI had to go back and do additional tests before they could get published.

So we are all just speculating right now.

Tina

 

[Megan]

But, I think we are assuming. Many other reasons for "delay" and there may not even be a delay. Just may be results aren't matching other results or problems were found in the study method that needs to be worked out before publication. Remember, WPI had to go back and do additional tests before they could get published.

So we are all just speculating right now.
Tina

I agree Tina. It's doing my head in waiting for resolution of this issue so I can see why we are all speculating.

Re the blood thing. I am concerned about what it might mean for us all if this gets media publicity that it could be infectious. But we need to remember that althought this is big news to us, most of the population don't even know how bad CFS is (they all think "I'm tired too"). It's not like AIDS where everyone knew it killed you and there was no treatment. My guess is that first of all they will worry about getting prostate cancer more than CFS. Though of course publicity may play a major role in reeducating the public.

When all this was first published I had a conversation with a rep from a company here that makes test kits for labs as I was interested in trying to progress testing in Australia. I discussed the blood bank with him and he said something to the effect that, "please don't take this the wrong way, but the blood bank are interested in more serious illnesses like Hep B". This was from a guy who had followed the developments of CFS and the whole HHV6 valcyte research (his company was making one of the test kits being used by Focus diagnostics/Stanford so he had a significant interest in knowing about it and selling the test kits). I was amazed he said this. It's just really hard for healthy people to "get it". The blood bank have banned CFS donations here now anyway so at least they have been better informed.

Also I can see the media might want to pick up on the blood bank thing because of what happened with HIV. But from a public health perspective isn't it transmission through sex or possible other means that is the far bigger issue? How often do people have blood transfusions compared to how often they have sex? If it is more infectious than HIV then the blood bank will be a minor concern by comparison.