Dr. Alter Paper embargo ends today at 3:00pm, press conference today

[August59]

Is a 888 number freephone in the US??

Yes - It is toll free!

 

[bullybeef]

Does this mean the HGRV test has been licensed? http://www.vipdx.com/?forumid=331851

 

[Ash]

All supplies and instructions are in the test kit. Your physician will need to order tests/sign the requisition and provide a diagnosis code so that we can send you a proper statement of services and fees that you can submit to your insurance company

from --> http://www.vipdx.com/order/

Does that mean full on FDA approved test?

 

[Greggory Blundell]

Replay

I believe the release references a "replay" two hours after the initial interview; I interpret that to mean in wouldn't interfer with press access so all of us can listen. Hopefully?

 

[Parismountain]

Wondering this myself but I see they make you sign if you are on Medicare that you will pay the rest of any short pay by an insurer. What's Medicare going to contribute on this $600ish, maybe $5?

 

[Sasha]

I believe the release references a "replay" two hours after the initial interview; I interpret that to mean in wouldn't interfer with press access so all of us can listen. Hopefully?

But still, on the day, won't journalists be trying to get through even a couple of hours later, indeed for the rest of the day as the media in different time zones start work?

I'm really anxious that we don't do anything to screw this up!

 

[urbantravels]

888 is toll free within the US but you can't use it to call into the US from other countries.

 

[Esther12]

But still, on the day, won't journalists be trying to get through even a couple of hours later, indeed for the rest of the day as the media in different time zones start work?

I'm really anxious that we don't do anything to screw this up!

I'd have thought we should be okay with the replay. Someone could always record it and then put it on line.

If there are any super knowledgable and tactful CFSers who think they'd be great at ringing in and asking questions in a way that's suitable for a scientific Q&A it could be good to have them present, but I agree that us normal folk should avoid clogging up the lines.

Anyone else feel a slight sense of dread? Like this is going to be a terrible disappointment? Hopefully just an unreasonable fear.

 

[bullybeef]

As anyone thought of email Kelli Carrington? Maybe someone could email questions in once they know how the paper looks?

 

[eric_s]

I totally agree Sasha. There's no need for us to call there, we will hear everything from about 1934875738437375 sources, probably.

And don't worry about the test. If things turn out the way it looks, there will be an approved test as quickly as possible and i'm sure everybody will be able to get it.
You can't tell millions of citizens that they won't be able to get tested just because they aren't able to pay for it.
Even the ones who can get tested will push for the ones who can't pay to be tested because nobody wants this to spread, i guess.

 

[Trooper]

Exciting! My fingers are crossed for a paper and discussion that keep moving things forward - Thanks for the heads up : )

 

[eric_s]

Anyone else feel a slight sense of dread? Like this is going to be a terrible disappointment? Hopefully just an unreasonable fear.

Of course, i'm anxious to hear about the study, but i don't feel like this. The telefbriefing by all the 3 agencies with a number for reporters etc. does not at all look like that to me.
And so far all the rumors about the study have been proven to be true and the rumors are that it is positive.

 

[OneWaySurvival]

3:01 Telebriefing is for PRESS ONLY

As anyone thought of email Kelli Carrington? Maybe someone could email questions in once they know how the paper looks?

Good feedback, all. Sasha, I agree that we don't want to jeopardize access to media.

I just got off the phone with Kelli Carrington at NIH. She confirmed that the 3:01pm telebriefing is for Press Only. They will screen callers to make sure they are credentialed members of the press. However, she did say that the Replay 2 hours later would not have any screening, and it was her feeling that it would not be a problem for the general public to listen in.

 

[Sasha]

And don't worry about the test. If things turn out the way it looks, there will be an approved test as quickly as possible and i'm sure everybody will be able to get it.
You can't tell millions of citizens that they won't be able to get tested just because they aren't able to pay for it.
Even the ones who can get tested will push for the ones who can't pay to be tested because nobody wants this to spread, i guess.

Come to think of it, Eric, can you imagine someone being turned down for an HIV test because they couldn't afford it?! If XMRV is shown to be disease causing, it will be a public health issue to get people tested for the protection of others, not to put barriers in their way.

Presumably even in the US where there's much less state-provided medicine, people don't have to pay for their own HIV tests? Or do they?

 

[BEG]

I just got off the phone with Kelli Carrington at NIH. She confirmed that the 3:01pm telebriefing is for Press Only. They will screen callers to make sure they are credentialed members of the press. However, she did say that the Replay 2 hours later would not have any screening, and it was her feeling that it would not be a problem for the general public to listen in.

Thanks OneWaySurvival! And where do we tune in for the Replay at 5:00 p.m.?

 

[Sasha]

Good feedback, all. Sasha, I agree that we don't want to jeopardize access to media.

I just got off the phone with Kelli Carrington at NIH. She confirmed that the 3:01pm telebriefing is for Press Only. They will screen callers to make sure they are credentialed members of the press. However, she did say that the Replay 2 hours later would not have any screening, and it was her feeling that it would not be a problem for the general public to listen in.

Thanks, OneWay - I wonder if there's a way to publicise your info to make sure that PWC don't clog the system by clogging the credential-screening process!

Cort, are you reading this? Can you add that to your XMRV Buzz post on this?

 

[BEG]

"Reporters should call 1-888-677-4212 and enter passcode 9258555."

Is this the phone number we would use at 5:00?

 

[OneWaySurvival]

Thanks OneWaySurvival! And where do we tune in for the Replay at 5:00 p.m.?

The same NIH press release says:
"For those unable to participate, the briefing will be available on replay approximately two hours after briefing concludes. For replay, dial 1-866-373-4990 and enter passcode 5711."

So, if the telebriefing lasts for 1 hour (for example), then the replay would start around 6pm ET. Maybe Mindy or somebody who will be on the telebriefing can let us know what time it ends? Or, like others here have said, we'll be hearing this news over and over from a myriad places, so it won't be a big deal to miss the call in delay. I guess I just can't help wanting to hear this news ASAP. I'm a starving man at the first ever ME/CFS buffet.

 

[Sunshine]

Getting the new test

RE: Serology (Antibody test):


Hi. I'm a bit confused about the wording on the VIPDX website.
On one hand it says......



On the order form

''No special preparation is required for specimens''
http://www.vipdx.com/order/docs/Kit_Order_Form.pdf

Yet on the main page

''Serum Separator tubes for serology testing must be spun down.''
http://www.vipdx.com/order/

Confusing?

 

[eric_s]

Come to think of it, Eric, can you imagine someone being turned down for an HIV test because they couldn't afford it?! If XMRV is shown to be disease causing, it will be a public health issue to get people tested for the protection of others, not to put barriers in their way.

Presumably even in the US where there's much less state-provided medicine, people don't have to pay for their own HIV tests? Or do they?

I don't know either, but i guess no...