WPI UK XMRV testing/study

[ritzcarcker]

My friend was tested yesterday and she said there was a 3 page consent form which stated that they were also testing for other viruses. She got the impression they were doing this with the blood being drawn. Unfortunately she didn't get a copy of the consent form.

Did anybody yesterday read this or have you got a copy of the consent form?

I am going to be tested next week. Another thing she told me was that there was a Tesco next door with a cafe and you could park there for free.

I can't remember reading about being tested for other things, foogy brain, but it did state on the form that we would receive a copy of the consent form, didn't say when or how but maybe it will come through with our results? It stated a number of times that this was a voluntary trial for research purposes at no cost to us and we could walk away from it any any point without committment......AS IF lol!!!!


Thankyou Villagelife, wow to have actually seen the van drive away to the airport with what could possibly be the most important blood test of our lives is amazing. Thankyou for your prayers. x x

 

[Cookie Monster]

It was also great to meet a couple of other peeps with ME. One guy had travelled from Australia!

Hi Jace, did you discover if this chap was a born n bread Australian ?(as opposed to a Brit ex-pat returning home). I expect most australian & NZ sufferers would be very encouraged by discovering what this courageous person achieved.

 

[ukxmrv]

XMRV has been reported in one Australian sufferer and one New Zealand "Tapanui flu" sufferer on other ME internet groups so far. Both "born and bred".

It's good to have confirmed that the virus is so widespread worldwide (and able to be picked up by the VIP dx test)

 

[bullybeef]

And some said XMRV doesn't have a passport.

It seems to have a frickin' visa too!!

 

[Adam]

Over to you Myra McClure...

 

[jace]

Hi Jace, did you discover if this chap was a born n bread Australian ?(as opposed to a Brit ex-pat returning home). I expect most australian & NZ sufferers would be very encouraged by discovering what this courageous person achieved.

He is one of about six sufferers in Melbourne. I'm in touch with him now by email, he has a very soft Aus accent, I'll ask him. He may well be here, I've sent him enough links lol

It's crazy to think XMRV is not in the UK, and is in the States. I'm one small woman, I lived in New York, my brother is in Albequerque long time - a US citizen now. We travel, these days. Why shouldn't retroviruses hitch a ride?

jace x

 

[Mark]

They have a poll on that MEA link which might be an interesting question to ask here...

 

[Doogle]

Does that mean if we are in the current UK study, we will have to be re-tested ??

That appears to be speculation. There seems to be no money allocated for another study, and if there were participation would be voluntary.

 

[Adam]

There is another thread on the ME statement. I have commented on it. It might be best post stuff on that thread rather than here, to gain a wider audience.

 

[Alexia]

Does that mean if we are in the current UK study, we will have to be re-tested ?? I really wouldn't be happy about this.

So any diagnosis by WPI is not valid here in the UK?

It could be that they use the same blood from the patients: half of it goes to the WPI to be tested and the other half gets tested in UK.
Like this they can check if the test methods in the UK are valid.

 

[fred]

Ref the UK study: I see no reason why those who test positive via culture and anti-body serum using the WPI's methods would want to be retested in the UK. What would the benefit be to this - other than proving whether existing UK protocols work or not?

And so far, all bloods have been sent to the US to be tested and there has yet to be an absolute public confirmation that bloods will be tested in the UK or any other European country.

 

[valia]

Good luck to everyone going to Ashford tomorrow!

If I get a positive result I will not be volunteering myself for a negative UK one afterwards, I've been through all that with Lyme tests.

 

[bertiedog]

I am being tested today at 1.40 but haven't received any confirmation email. Anybody else find this?
Pam

 

[Abraxas]

The temporary website for those taking part in the UK XMRV study has just been updated to include questions and answers! Don't know about other venues yet, I can't seem to access that part of the site.

 

[Countrygirl]

=Abraxas;68364]The temporary website for those taking part in the UK XMRV study has just been updated to include questions and answers! Don't know about other venues yet, I can't seem to access that part of the site.

The details concerning the other venues have not yet been decided. They will be posted on the site as soon as possible.

 

[Abraxas]

Ok, thanks for that Countrygirl and your involvement in the website etc, cheers.

 

[Knackered]

The details concerning the other venues have not yet been decided. They will be posted on the site as soon as possible.

Where's been considered?

 

[pollycbr125]

there are no further venues just yet knackered they are still sorting it out . as soon as they will be posted .check this site which has been specially set up for updates .though the blood draws/psi page is not up and running yet . there are some questions and answers up now though http://www.xmrvweb.me.uk/index.html

 

[Countrygirl]

=Knackered;68424]Where's been considered?

Hello Knackered,

We are working hard to ensure the smooth running of this trial and we will do our utmost to give you the locations as soon as possible. The organisation of the home draws, which accounts for about half of the test participants, will be much more complex to organise. Another batch of bloods flys out tonight.

Warmest wishes,

C.G.

 

[VillageLife]

it says on the new questions and answers page,
how long will we have to wait for results and the reply is..This letter will be sent after the group data are accepted for publication

Does that mean we will get the results in around 3 weeks, like we were told at the start of the study ? its already been one week now, for some of us!

hugs to anyone who can help with this,