WPI UK XMRV testing/study

[fingers2022]

I'm also waiting to hear back from the phlebotomy company. I sent Jan a message earlier today as she had already given me Ed's email address (so it may be me she's referring to above - if so, thanks Jan!). I'd emailed him last week and had no reply. I have been wondering whether to contact the WPI directly, but don't want to hassle them when they're so busy.

Perhaps if we don't hear anything we could arrange for one of us to send an email on behalf of all of us who haven't heard (if that makes sense)? But I keep thinking maybe they're just backed up and busy, so maybe it's premature to do this yet...

Hi all
As I've had recent contact with JM via e-mail, I've taken liberty of e-mailing her the concerns about PSI contact. Hopefully she will reply quickly and I will post.

Best wishes
F

 

[Amy]

Hi all
As I've had recent contact with JM via e-mail, I've taken liberty of e-mailing her the concerns about PSI contact. Hopefully she will reply quickly and I will post.

Thanks fingers, that would be great!

Re phoning PSI, does anyone have their number? Is there a UK number?
I will wait til you hopefully hear back from JM.

Amy

 

[fingers2022]

Thanks fingers, that would be great!

Re phoning PSI, does anyone have their number? Is there a UK number?
I will wait til you hopefully hear back from JM.

Amy

There's an idea Amy. It's a US number, but as I've just got free US calls on my tariff....
(maybe wait to see if JM replies, then call PSI/EC if not)

F

 

[ukxmrv]

Amy, the person I know rang them direct in the USA (no UK number). They are about 7 or 8 hours behind us GMT
----------------------------------------------------------------------------------------------------------------------------------

Phlebotomy Services International INC.

55 South 5th Street Central Point, OR 97502

00 + 1 + 541-664-4382 EXT 100

 

[fingers2022]

Be reassured......

Response from Judy (took 41 minutes!!!)

Please assure everyone that we we will draw all 225 who emailed before 5pm on Wednesday March the demand was much greater than anticipated and more than 50% are homebound which requires more logistics on the part of Phlebotomy Services International. Please encourage everyone. I personally answer 20-40 emails each day and will continue to attempt to do so. i will get back to everyone
Thank you for your patience
Judy

Sorry, I don't know how to translate "5pm on Wednesday March"......but I guess she's busy!!!

Stay cool everyone.
F

 

[fingers2022]

Response from Judy (took 41 minutes!!!)



Sorry, I don't know how to translate "5pm on Wednesday March"......but I guess she's busy!!!

Stay cool everyone.
F

Oh, and maybe pass this on to anyon eyou know in the study but not on the forum....

 

[Kati]

Dr Judy is a star!!! :victory::victory::victory:

 

[free at last]

I was contacted by them recently, as i emailed them to confirm they got my response, I also wondered what was happening, Not a lot was said, but they did recieve my response email, and i had the feeling they could be rather busy, from the short response. Think i just need to let them do there job, But the waiting feels uncertain i know.

 

[Knackered]

After receiving the comformation email a week ago I mailed them to ask where the collection locations were. No reply.

 

[mermaid]

Maybe they are still working on the locations dependent on where the people are, especially if there are only around 100 going to collection locations that is not a lot really (that is based on the numbers that Judy gave). It must be a lot of logistics to organise if the lab is based in the US.

 

[Amy]

Response from Judy (took 41 minutes!!!)



Sorry, I don't know how to translate "5pm on Wednesday March"......but I guess she's busy!!!

Stay cool everyone.
F

Thanks for sharing this, fingers! Sounds like it's a case of staying patient.
Amy

 

[ukxmrv]

Fingers,

May I please pass the response from Judy Mikovits onto some in the UK who is trying to build a list of the "missing"?

 

[Countrygirl]

ukxmrv;59757]Fingers,

May I please pass the response from Judy Mikovits onto some in the UK who is trying to build a list of the "missing"?

ukxmrv - I have a list of a number of folk who have not heard from Ed Cutler. What is your contact doing with the names? I have resent them to E.C. but I've had no reply.

 

[ukxmrv]

I don't know. It was mentioned on the MEActionUK yahoo group. I'll ask if the email can be posted here and revert

 

[Countrygirl]

ukxmrv

Thanks for that. Sounds as though they are snowed under and are struggling to cope with all the applications for testing. I just don't want anyone who has been accepted to be left out. At the same time, I don't want to increase anyone's workload by repeating posts.

 

[fingers2022]

Fingers,

May I please pass the response from Judy Mikovits onto some in the UK who is trying to build a list of the "missing"?

Hi ukxmrv (and all), sorry been out of loop a while.
I have not explicitly asked JM whether we can post her response, but I did implicitly, i.e. when I asked for the response I said I would publish it in order to give reassurance and to reduce contacts directly to her.

So in answer to your question, my opinion is yes, although it seems you may resolve via Countrygirl.

Trying to get a consensus on optimising communication channels. Will report asap.

Best
F

 

[ukxmrv]

A list went from someone on MEactionUK earlier this week but she says that this was not intended as a regular thing. She may send another one if there is a demand in one week.

al_barclayuk@yahoo.co.uk

(I have permission to post this email address here)

 

[Amy]

A list went from someone on MEactionUK earlier this week but she says that this was not intended as a regular thing. She may send another one if there is a demand in one week.

al_barclay@yahoo.co.uk

(I have permission to post this email address here)

Thanks very much for this, ukxmrv.

I've just tried sending an email to the address given, but it's been returned by the mail delivery system saying there's an "unknown address error".

Would you mind checking that the address is correct please?

Thanks
Amy

 

[ukxmrv]

Sorry Amy,

That was my fault. Had a wrong one in my contacts for some reason. It is

al_barclayuk@yahoo.co.uk

Sent off a test message this morning and have had a reply.

My apologies for that error!

 

[willow]

Hi ukxmrv,

Did you ever get a reply from WPI re consent and precisely what use our blood will be put to?

Thanks
willow