WPI UK XMRV testing/study

[Alexia]

Do people hear think its likely that Judy will mention the percentage of positives in the Ashford 50 when she talks at the Invest In Me Conference next week? Or do you think she just won't mention it?

Pam

It's what I'm hoping for..

 

[VillageLife]

Some good news regards the volcano, seems like the law will change regards flying from tomorrow.
http://news.bbc.co.uk/1/hi/uk/8688517.stm

 

[free at last]

It's what I'm hoping for..

Me too, I think they know already, and are waiting to say with a little impact, like just maybe the conferance

 

[jace]

It will be as it is. Patience, people. Meanwhile, smile, the sun is shining and the birds are singing (if you can hear them through the tinnitus lol)

 

[Adam]

Tweeting

It will be as it is. Patience, people. Meanwhile, smile, the sun is shining and the birds are singing (if you can hear them through the tinnitus lol)

Yep we got sun. And a pair of goldfinches are going toe to toe right now with a male blackbird in a sort of sing-off battle of the birds.

I love this time of year. And did I ever mention that Judy is a goddess?

And of yeah, good luck to all those going to London for the conference. You better tweet louder than those goldfinches or else? :innocent1:

:victory::victory::victory::victory:

 

[Kati]

Yep we got sun. And a pair of goldfinches are going toe to toe right now with a male blackbird in a sort of sing-off battle of the birds.

I love this time of year. And did I ever mention that Judy is a goddess?

And of yeah, good luck to all those going to London for the conference. You better tweet louder than those goldfinches or else? :innocent1:


:victory::victory::victory::victory:

Adam, I love your posts, they always make me LOL!!! Tweet my friends, tweet!

 

[Abraxas]

Looks like things are moving again as far as the blood collection is concerened. Had an email from the phlebotomy company today saying they are 'working on contacting everyone on the participant list' and thanking us for our patience. No dates or venues mentioned yet though.

 

[Knackered]

Looks like things are moving again as far as the blood collection is concerened. Had an email from the phlebotomy company today saying they are 'working on contacting everyone on the participant list' and thanking us for our patience. No dates or venues mentioned yet though.

Me too, same email, maybe next week or the week after then for venue info.

 

[Adam]

Me too, same email, maybe next week or the week after then for venue info.

Anyone else had this new email? I am down for a home draw and have not received this email. I don't want to bug Ed Cutler, but I don't like being in the dark.

Suggestions/help please?

Adam

 

[Knackered]

Anyone else had this new email? I am down for a home draw and have not received this email. I don't want to bug Ed Cutler, but I don't like being in the dark.

Suggestions/help please?

Adam

I originally emailed them saying there's a big chance I'd need a home visit, most of the time I have to stay in but I never received a specific answer to that. Are people who are getting home visits getting different emails to those who aren't?

 

[DysautonomiaXMRV]

Can't people get a private nurse to take the blood and then get a courier/friend to take their blood to where it needs to go? (E.g. via train).
(I did that with mine) and thus lived miles away from where the blood was taken to before being shipped off to the USA.

It's rather unrealistic to expect disabled people to be able to get to a clinic, being that at minimum, 25% are bed bound.

You can find a Nurse to do home visits (to take blood) from the British Nursing Association, it cost me 37 + the cost of a train ticket
for my dad who kindly took it to where it needed to go.

 

[maryb]

No I got the same e-mail and I'm not down for a home visit. Think it was just a general one to make us still feel in the loop so to speak, I would send an e-mail to Ed if I were you Adam, just to make sure you are still on the latest list.

 

[maryb]

Can't people get a private nurse to take the blood and then get a courier/friend to take their blood to where it needs to go? (E.g. via train).
(I did that with mine) and thus lived miles away from where the blood was taken to before being shipped off to the USA.

It's rather unrealistic to expect disabled people to be able to get to a clinic, being that at minimum, 25% are bed bound.

.

Dys they have promised to do home blood draws for those who can't travel, think it was about 50 out of the original 200, it will cost them a heck of a lot of money but brilliant and necessary for the quality of the study.

 

[Adam]

No I got the same e-mail and I'm not down for a home visit. Think it was just a general one to make us still feel in the loop so to speak, I would send an e-mail to Ed if I were you Adam, just to make sure you are still on the latest list.

Thanks MaryB. I think I will drop him an email.

 

[DysautonomiaXMRV]

Hi. Well that's very gracious of the organisers and great to hear, thank you.
At least the Ash Cloud has gone it seems.

I'm so sick of the NHS I'm considering going to a newspaper about XMRV.
Total black out here as you know. (An ash cloud of disinformation!!!).

 

[Countrygirl]

DysautonomiaXMRV;88391]Hi. Well that's very gracious of the organisers and great to hear, thank you.
At least the Ash Cloud has gone it seems.

I'm so sick of the NHS I'm considering going to a newspaper about XMRV.
Total black out here as you know. (An ash cloud of disinformation!!!).

Hi Dys,

That is a good idea, but I think it is best that we wait before contacting the press. They will just regurgitate the negative studies and say that there is no evidence that it is present in the UK in any significant numbers. (Although Prof McClure's latest prostate study suggested, I think, that it is present in 4% of the population - that is amazing .................that is one person in every twenty-five is infected - have I remembered correctly? .) I think we best wait until the UK study is completed and the results known. Then, hopefully, we will have strong evidence and we can leave Wessely and his cronies lying in the dust.

C.G.

 

[Abraxas]

Anyone else had this new email? I am down for a home draw and have not received this email. I don't want to bug Ed Cutler, but I don't like being in the dark.

Suggestions/help please?

Adam

Hi Adam, I presume they will be in touch in due course, the email I got said:

' The staff of PSI is working diligently to make sure everyone is accommodated for both the in home collections and those able to travel to collection locations.'

and also:

'For those of you who have e-mailed and need a home collection we will be e-mailing you individually and letting you know who your phlebotomist will be and their contact info.'

 

[Adam]

Hi. Well that's very gracious of the organisers and great to hear, thank you.
At least the Ash Cloud has gone it seems.

I'm so sick of the NHS I'm considering going to a newspaper about XMRV.
Total black out here as you know. (An ash cloud of disinformation!!!).

Love the Sig Dys. :tear:

It's like something out of Dr. Strangelove?


:victory::victory:

 

[maryb]

Details of new venues for blood draws, dates and times available is online via an e-mail from PSI. Check your e-mails folks.

 

[Adam]

Hi Adam, I presume they will be in touch in due course, the email I got said:

' The staff of PSI is working diligently to make sure everyone is accommodated for both the in home collections and those able to travel to collection locations.'

and also:

'For those of you who have e-mailed and need a home collection we will be e-mailing you individually and letting you know who your phlebotomist will be and their contact info.'

Hi Abraxas

Thanks for this info. I have only just seen it today. It has put my mind at rest.

Adam