The UK Blood Society and blood donation.

[bullybeef]

One of the biggest issues I am discussing here in the UK is blood donation and our nations blood supply.

Currently, thanks to Wessley, the UK are completely ignorant of XMRV and it’s prevalence over here. Even though there are now people in the UK whom are XMRV positive. Yet I cannot donate my blood. I am apparently deferred until I am completely well. Yet, there is also no diagnostic test to prove if I am well, so how would anyone possibly know?

Now, am I correct in saying the US Blood Society are doing their own replication study to verify your nations blood supply? Yet over here I spoke at length to a lady from the UK Blood Society whom was completely oblivious to XMRV. Now it could have been a person whom isn’t privy to XMRV and whether our nation is testing the UK’s blood. But it is very worrying. And even if they are testing our blood supply, are they using the correct techniques?

So, as things stand:

XMRV doesn’t officially exist here in the UK, yet no one with ME can donate their blood.

Still much of the UK perceive ME to be either a harmless problem or a myth, yet my blood is deemed unfit for donation.

And finally, the general British public have no idea that the UK National Blood Society don’t know whether there is a new retrovirus of unknown pathology within the nations blood supply.

None one seems to know or care!!

If any of you guys know anyone from the media in the US, we really need this to be made public. I can’t sit and consider some child receiving a blood transfusion here in the UK, and not knowing there is a possibility it is contaminated with XMRV.

Cheers,

BB

 

[DysautonomiaXMRV]

Great post. :victory:

I am considering writing a letter, or should I say I was.

Our key problem here, is the NHS (a British state brand) say they 'do no accept' private test results.
(At least, this is my experience - the hostility to anything 'American'). Quite wrong.

Usually what happens, is the NHS then repeat the test to 'confirm' the private test is 'real'.
In our instance, they cannot do this. If this is actual Department of Health policy or us alleged neurotics
being 'managed' by disbelieving doctors, then I do not know.

Obviously our American friends do not have this problem, as private health care is entirely normal there
and how the county is run.

Conversely in the UK, private health care blood tests (by the state) are often met with suspicion and disbelief.
This is now furthered by the failed IC study by Wessely and Co, that 'failed' to show any XMRV in the UK - as you pointed out.

To round up my reply to your very valid point.

How are we going to 'convince' the Blood Supply people that there is a 'risk' to UK blood, if the only UK study
says XMRV in the UK doesn't exist?

That is the question one must consider before writing any letters.

 

[Katie]

Second attempt to post this...


Unfortunately we're going to have to wait for the American results for anything can happen here. It's no good to cause a panic and have the blood screened with a potentially rubbish test. We need to wait for a standardised test and the results from the Americans before any notice or progress can be made here. It's far from ideal but that's the best case scenario. Welcome to the dark ages.

 

[DysautonomiaXMRV]

I agree Katie.

Possibly, on an off chance, the Americans will announce sooner than we think the American blood supply needs to be protected.

The reason I say this, is VIPdx said that they are ditching the PCR assay and keeping culture which I'm sure they said something about it being 'validated'. If it's validated, then who validated it?! The FDA? If so, then they're using it already to screen the results with the CDC and this should surely be completed by the end of 2010.

Then and only if positive, this is our chance to be heard.
If not, then we just end up having XMRV (if testing positive) and having to get the Eurostar to Spain/Belgium for treatment.
Luckily, Ambulances are allowed under the channel tunnel, so we can get to Europe from UK - if we pay a vast amount of , and risk a relapse.

Unless our fairy (or should that be 'fairly') god mother waves her wand over us, I think we'll stay as hidden as we are.

 

[Robin]

Now, am I correct in saying the US Blood Society are doing their own replication study to verify your nations blood supply?

Yes, our Health and Human Services Department has assigned a group that reports to their Blood, Organ and Tissue Senior Executive Council.

From this article by the CAA:

the Blood XMRV Scientific Research Working Group is taking a three-stage approach to its handling of the issues related to XMRV and the possible link to human disease. The first stage will be to standardize and validate laboratory methods and reagents for XMRV testing. This is important since variations in sample collection and laboratory procedures can produce discrepant results. These standardized approaches will be used initially to test 1,200 healthy donors’ blood samples and 100 CFS patients’ blood samples collected by Dr. Judy Mikovits of the Whittemore Peterson Institute. Stage two will assess the prevalence of XMRV in the general population and blood supply, as well as in other CFS patient cohorts. The third stage will be a series of studies to understand how XMRV is transmitted, whether it causes human disease, and how it affects various subgroups of the population.

The larger issue seems to be how to find the virus!

It seems like Katie is right in that there is no attempt to do this type of work in the UK, yet.

 

[Rita]

I think in Europe, at least in the EU(European Union), should be a body of scientists from all countries, specialized in CFS / ME. In fact that's it, the ESME (www.ESME.EU.com). And they should say how to act.In ESME has just come in Dr Kerr, who works with the WPI. But this organization needs to be recognized by all EU member countries and its findings are taken into account by health authorities in all these countries (UK, France, Italy, Germany, Spain ..). That would be a important step .ITs ridiculous that people with the same severe disease are not recognized in a country, battered in another, treated with antidepressants and exercise in one ,and in another one with antivirals. We all have every right to be treated according to the latest research and with treatment that works .We, patients, are informed ,and cant be treated by doctors who only want to save money to the state or insurance companies or who want remain in ignorance of the illness. The world is globalized, healthcare should also be.

 

[JAS]

This post seems to be pertinent as I was today called up by British Blood Donations to arrange an appointment! I tried to say about XMRV but soon realised it was pointless, CFS was on her list, you cannot give blood whilst you have the syptoms but can when you think it is gone...very frightening. It is all very early and there are not too many people even within the ME world have even heard of XMRV or know we are perhaps sitting on a time bomb..if the WPI studies are replicated (think the tests results are due in early to mid summer) there are going to be huge ramifications and perhaps that is when people who have tested positive hit the press. I was thinking about this all last night, this is massive, as well as CFS it may be the answer to FM, Gulf War Syndrome, some forms of autism and MS...we can frighten an enormous number of people with this news, it has to be handled very responsibly and very carefully....yikes!

 

[Martlet]

We all have every right to be treated according to the latest research and with treatment that works .We, patients, are informed ,and cant be treated by doctors who only want to save money to the state or insurance companies or who want remain in ignorance of the illness. The world is globalized, healthcare should also be.

I know what you are trying to say, Rita, but although I happen to believe that good health care is a human right, right now I am just working to try and get access to adequate health care for millions of uninsured Americans. :worried: