to think it's time to reassess the rules on vCJD and donation?

[entropygirl]

Got sucked into a bone marrow donation thread only to discover that I cannot donate due to having had a blood transfusion a year ago. This is cited as being down to the risk of vCJD.

There have been a grand total of 176 deaths from vCJD to date in a population of 60 million odd. (Just for comparison there are around 20,000 people infected with aids in the UK who are unaware of their infection).

So if you were in need of a bone marrow transplant wouldn't you rather risk the slight extra chance of vCJD, due to your donor having had a transfusion, than die for lack of a donor?

I can understand not allowing people who have had transfusions to donate blood because you can spread a contagion very quickly through the population that way. But donating as a one off to a single recipient is totally different.

The same goes for breast milk donation, in that the chances for rapid onwards transmission are very low (you have to wait 16 years for the baby to grow up before they may pass it on through the same mechanism). The risk of NEC for prem babies are far far higher than the risk of vCJD. So again would you want to risk a 1 in 10 chance of NEC on formula rather than a 1 in 100 chance on breast milk?

the weird thing is, after receiving anti-d (a blood product) you are not restricted to donate blood.
what logic is that?

I know someone who died of VCJD and I wouldn't wish it on my worst enemy.

The problem is that while the instances of death are unknown we as yet do not know the risks of transmission since VCJD is a condition which can lie dormant for years.

So to knowingly give bone marrow to someone not knowing whether or not the risk is there you are essentially saying that you'd rather they died of VCJD than cancer, and that's not a risk worth taking IMO.

Do you mean infected with HIV rather than AIDS?

And really, you're going with the "you would only infect one person rather than loads" argument? Nice There are good arguments to look at the policies again, that isn't one of them.

I joined the Anthony nolan bone marrow register and I have had a transfusion. It's only certain bone marrow registers which require you to be regular blood donator which preclude you from joining if you have had blood.

Maybe they need to find a way of identifying carriers, at the moment all they can do is eliminate as much risk as poss. It must be hard though as a recipient of blood donation it's probably something close to your heart.

I took part in some research a few years ago whose aim it was to find out how prevalent VCJD was. It was anonymous so I would never be told the result of my test, however I was reminded of taking part due to another VCJD thread here on MN and looked up the results.

I cant remember the exact details but it was expected that they would find x amount of cases but non were found. It was said that this could be because at that time symptoms were not as yet showing, but the result was surprising to the team that carried it out so I concluded I didnt have it ....yet

Mousymouse....It is because all blood products such as anti-d, Factor XII and XIII are not made from donated UK blood rather it's made from donated blood from the US due to the emergence of CJD in this country in the 80's.

wannabe people who have not had blood transfusions may also have vCJD. They will also be donating bone marrow etc without knowing. The question is how much an increase in risk there is from having had a blood transfusion.

I think the answer is that there is bugger all difference in risk. So I would rather have a donor than not.

paranoidandroid again this is about the difference in risk. A very small risk can turn into a lot of infections if donors are allowed to donate again immediately but the same risk does almost nothing if donations are one off.

also you are not comparing dying from cancer with dying from vCJD, you are comparing definitely dying from cancer with a very very small probability of dying from vCJD.

So no comparison in my book.

I'm with entropy on this one I think but I don't often think about the hard AIBU threads

Kay erm thanks - some support is better than none - I think....

I live in another EU country and when I signed up to be a blood donor I was asked my nationality. Upon finding out I was British and had lived in the UK for more than 6 months in the 80s, I was told that I couldn't donate blood here. I can however be an organ donor (which i find strange).

Engel for the same reasons as stated below I think the EU and American stance actually make sense. For one thing, again, organ donation is one off and organ recipients are going to be excluded from donating blood.

For another thing there is a much greater difference in risk between people who didnt eat beef in Britain and people who did, than there is between people who ate beef in Britain and people who ate beef in Britain and have had a blood transfusion.

The EU/American rules are perhaps a little paranoid but are far more logically consistent than the UK rules.

It is time for the public to be told the truth about prion diseases:

Alzheimer's Disease (AD) and sporadic Creutzfeldt Jakob Disease (sCJD)
are sister prion diseases, transmissible, infectious by medical
equipment, (scopes, etc.) dental and eye equipment, blood, urine, feces,
saliva, mucous (aerosols: possibly by coughs & sneezes) Doctors
frequently misdiagnose AD and sCJD one for the other. The symptoms and
neuropathology are almost identifical.

Right now the US is in the middle of a raging, always fatal, prion
disease epidemic: There are over 6 million victims of AD and 1 million
Parkinson's Disease victims, with a new AD case every 69 seconds !

Recent research (October 2011) by Dr. Claudio Soto, et al, University of
Texas Medical School, has confirmed earlier research which found
injecting Alzheimer's brain material into mice brains caused infectious
prion disease.
www.sciencedaily.com/releases/2011/10/111004113757.htm
See Video - Dr. Soto on Alzheimer's disease and prions: www.youtube.com/watch?v=xtN6hoyTdR4

AD and sCJD victims shed prions in their urine and feces. Sewage
treatment does not inactivate prions - it concentrates them in the
sewage sludge. The US EPA acknowledges that the landspreading of sewage
sludge is also a pathway of prion risk for humans and animals (Mad Cow,
CWD, etc.)
www.alzheimers-prions.com/

EPA NATIONAL WATER RESEARCH COMPENDIUM 2009-2014 lists PRIONS eight times
as an EMERGING CONTAMINANT of concern in sewage sludge "biosolids" ,
water and manure:
www.sludgevictims.com/prions/P­RIONS-EPA-EMERGINGCONTAMINANTSINSLUDGEB­IO.pdf

"Could Alzheimer's be infectious? "
­neurophilosophy.wordpress.com/20­06/11/24/could-alzheimers-be-infectious­/

SEE reply posted by:
Dr. Murray Waldman, coroner for the city of Toronto, Canada:
"In answer to the question how would Alzheimer?s (AD) be transmitted, I
have written a book ?Dying For A Hamburger? that hypothesizes that AD is
spread by how we in North America and Europe feed and process meat,
mainly beef.
If you study the rates of AD and its geographical distribution, you will
find that rates start to soar when a country becomes meat eating (i.e.
Japan and Korea in the 1960s) and rises even faster when it adopts a
fast food culture (the US and Western Europe in the 50s and 60s) and
remains low in vegetarian countries (India) and those without a
processed meat industry or fast foods (equatorial Africa)?Murray "

Scientists agree variant Creutzfeldt Jakob Disease (vCJD) is caused by eating prion tainted beef.
Many believe sporadic CJD/aka Alzheimer's Disease (AD) is also caused by eating prion contaminated meat e.g. BSE -Mad cow and CWD - Chronic Wasting Disease
(deer, elk, moose, etc.)

Inadequate/non-existent mad cow testing, and control and influence over USDA by the cattle industry guarantees the
Alzheimer's Disease epidemic will continue to spread through US, Canada and UK.

Helane Shields, Alton, NH [email protected]

whoa! What's all that about? and what is it supposed to have to do with this thread?

I used to work on amyloid fibres during my phd....not the disease related ones thankfully...but you can make the same structures out of milk proteins or insulin or in fact anything.