XMRV testing in Europe

[kansas_K]

Does anyone know how to get tested for XMRV if you live in Europe?

Any labs which will do testing in Europe soon?
It's kinda hard to get the samples to the US within 24 hours...

 

[Alice Band]

I had some email correspondence with Redlabs in Belgium. The chap who replied said that they were in talks with VIP in Reno to see if they could offer the test(s).

He was not sure if they could be licensed to carry out the test in Belgium or if they would draw the blood and then send somewhere else.

With regards to bloods to Reno, I have sent bloods to the USA before and within 24 hours. Fedex said that they could send London - Reno within 24 hours.

VIP have not confirmed to me as yet if they definitely won't be taking UK bloods and I am on the waiting list for a test kit. They said that they are not currently sure and may not know for a few weeks.

The Breakspear Hospital in the UK has also told a patient that they are looking at providing the test.

 

[cold_taste_of_tears]

Alice, I phoned VIPdx (yesterday) and they didn't allow me on the waiting list for a test kit for XMRV. I'm in UK also.

I guess it's just luck who picks the phone up at the company.
(The woman told me she cannot put me on the list for a kit as it's not licensed in Europe).

 

[keepsmiling]

I posted this in another blog but wanted to make sure everyone knew. I called VIP today and was told they cannot accept samples from overseas due to time and temp changes. The other problem is that it can get stuck in transit.

 

[Alice Band]

That's such a pity (about VIP).

Redlabs still cannot confirm a date for testing (and they are still in negotiations with VIP).

Biolab in London is a possibility that has been mentioned on another group and someone also from London is talking to them.

Breakspear mentioned it to a patient but no news since then.

 

[Hysterical Woman]

XMRV Test in Europe

Hi Alice and All,

It definitely sucks that the XMRV test is not yet available in Europe. However, the test became available in the U.S. in a shorter time frame than was originally given to us, so hopefully that will happen there too. I don't think you have been given a time frame, but RedLabs is at least in negotiations.

For those of you who can get an email and/or letter off to the lab (or anyone you think might be able to make that happen), you might want to consider doing so. Large numbers of messages are difficult to ignore

Take care,

Maxine

 

[Katie]

I emailed RedLabs in Belgium last week, no reply as yet.

 

[froufox]

Just to say that I phoned the Breakspear a few weeks ago and was told by the guy in pathology that will take a few months before they are able to offer a test for XMRV.

Hopefully we will have more options sooner than that! Good to know that Biolab might be a possibility.

 

[Oli]

Xmrv

I went to the breakspear yesterday to see if they could help my ME/CFS and along with many other tests they are doing, they told me they are testing for XMRV.

 

[garcia]

I went to the breakspear yesterday to see if they could help my ME/CFS and along with many other tests they are doing, they told me they are testing for XMRV.

Oli, does that mean they are testing right now?

 

[Alice Band]

I was sent this today by someone who has spoken to these labs this week.

The Breakspear is collecting samples from patients and freezing them. They are negotiating with some other labs to try and offer the test. So far, the requirements for the samples have been too strict.

They are negotiating with labs who will offer the antibody test and the PCR test to see which one does the better job and is feasible.

The frozen samples will be used to "test the test" before they release it to their patients.

[B]Redlabs in Belgium[/B] is also still working on a test. They are negotiating with VIP but licensing is proving a problem and also VIP's requirements on samples and time. Redlabs is also talking to the Swedish doctor who is working on a PCR test and this may be easier for them to offer.

Still early days for both labs and they both stress that testing for them is at the research stage purely. However, they both say that in a months time there may well be good news. Both labs are enthusiastic and very interested.

Biolab in London is at the talking to VIP/WPI stage.

 

[keepsmiling]

I was told VIP and WPI are two separate facilities. That VIP is not in charge of negotiations to license the test. Other labs have to go through WPI to license the test. So I don't know where this other information is coming from. I got all my information directly from VIP.

 

[Alice Band]

I think that they are speaking to Dr Lombardi and he is a director of VIP and a researcher at the WPI. Hence the reference to both facilities depending on which hat he is wearing.

Would be great if the WPI could send out another press release on europe testing. I have asked them to.

 

[Oli]

They told me that I could pay 700 and they send it to Arizona or wait three weeks (they have saved my blood from other tests) as they are setting up a link with a place in Oxford to test for it. I assume they are liasing to have a constant testing facility with this place in Oxford and was told it was nearly ready - well three weeks away. I will post again when I get my results back.

 

[garcia]

Oli why would they send it to Arizona? Presumably they mean Nevada?

Did they give you any idea how much the place in Oxford would charge for testing? Will this be an authorised test licensed from the WPI?

many thanks,
garcia.

 

[Oli]

Sorry no idea why I was told Arizona. I am very new to this whole thing and although had ME/CFS for two years now am only now starting to see what I can do about it. This is just the information the 'Breakspear' gave me. The whole WPI information is all over my head sorry. I assume this is where the 'Breakspear' will be using to get XRMV tested in the future.

 

[George]

I don't know who set this up but here is a link to a website that is keeping information availiable on testing in Europe

http://www.xmrvtesting.co.uk/USA_XMRV_testing.htm

notice on the USA page they say that codiagnostics will ship their kit to Europe. Anyone know if that's true?

 

[cold_taste_of_tears]

notice on the USA page they say that codiagnostics will ship their kit to Europe. Anyone know if that's true?

Yes, it's true.

They give you a 24hr FEDEX shipping label in the box, I asked.
As long as you arrange with FEDEX to collect it from your home, in the morning (and on wednesday at the latest) - it should get to America within 24hrs for processing.

It's pot luck if the cells in your blood that you squeeze (not too hard as it screws up the test) are infected with XMRV - if they are then it'll come back positive. If you have XMRV DNA in your DNA - and XMRV is a DNA virus.

Game over basically. If you have all the symptoms of ME CFS and have a positive XMRV DNA test - it's practically impossible the 'real' blood tests for XMRV infection (Antibodies) won't also be positive.

The waiting list for the WPI/VPdx tests are now months long. We need more labs - urgently. I called them, and I was told 4 months back log - at least.


Hence if you can afford it, take the risk the finger prick test might - come back positive. I know what I'd take over an XBOX this christmas.

 

[cfsme23]

When do we anticipate being able to get treatment for XMRV if we test positive (cause I would mightily frustrated if I was someone who was XMRV+ and just had to twiddle my thumbs right now)? I know the efficacy of AZT is being tested currently in us lot but I wonder if XMRV does not prove casual whether the drug companies will still be looking to look into treatment...answers on a postcards!!!

 

[Katie]

*puts on cynical hat and writes on a postcard* For a drug company treating something is better than curing something and both of those are better than nothing. If XMRV is treatment and can improve quality of life then sure as the grass is green there will be treatments. The biggest issue is the cost of those drugs versus the improvements made and how NICE work that out.

How long we have to wait depends on organising ourselves to get funding, attention and drug studies going. I've started a thread to see about getting some brains together and making sure we don't sit too long with a diagnosis in one hand and no prescription in the other no matter what role XMRV plays in our illness http://forums.aboutmecfs.org/showthread.php?t=1147