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

[bullybeef]

It would make sense that the delay on this paper has been so the FDA can approve the test. You can't announce the 3rd human retrovirus without a test, surely?

 

[Jessrose21]

I just sent an email to a reporter at our local TV news station with a link to the press conference info. She did a great story on CFS several years ago and in fact had (has?) it herself when she was in college. Hope she does a big story on XMRV! I'm so excited I have goosebumps. Literally!

 

[usedtobeperkytina]

Well, here is what I notice.

#1, this is not Friday. Although the choosing of the timing may be based on PNAS timing, not of their choosing.

#2, this is not just press release, so it is big news, and they know it. Possibly, reporters may have already been calling asking when and what. So they know they can't just publish the study and then can't just do a press release. Either they expect lots of news media interest or they have already had a lot of it.

#3, they are doing this ahead of the time for publication, which means they don't want a bunch of reporters doing independent work, going to whomever they can asking questions after publication. They want to have message from chosen sources all at the same time, same information. This can be because they want to control the message or because they don't want reporters bothering these folks with multiple phone calls. It could also mean both.

#4, whatever they have to say is likely of importance to more than CFS patients, or else they wouldn't bother with this event.

#5, very interesting that CDC guy will be there also. Don't know what the spin will be then. Very intrigued.


What can you do?

#1 As has been said, reporters may be working on story ahead of time so they can hit the ground running after the teleconference. With health related stories, reporters like to use personal account of someone who is sick. So, if you know any news media, then contact them and offer yourself to a story.

#2 If you want to influence the story, what questions reporters ask, then contact news media and give them tips now. Suggest questions they should ask, now. Is there a health reporter at the news organizations? First off, you can't guarantee they know about this event. Second, they may have no knowledge of the story, if someone doesn't give them some background. If you want them to tell the story with a certain angle, then they need to know the issues before this event so they can ask the questions then. Otherwise, as though they have no prior knowledge of issues, they will only ask questions based on what the researchers say.

#3, this is an easy story from a reporter standpoint. For the lazy or very busy reporter, they can dial in, ask a few questions, Google the illness on the Internet for statistics and do a story. And it is a big story. Wham Bam, done. So with this invitation to reporters, it will likely get some coverage because it is easy and is new and is big. So, again, if you want something more than that in the stories, then you need to be giving reporters info now. Reporters want two things: get it out first and get it better. With this event, no one will beat the other on getting it first. So the only opportunity for reporter to distinguish themselves is to get it better. Especially the print media will want to tell the story behind the story.

Tina

 

[CBS]

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?

Even in the US - where profit is king - you can get a free and anonymous HIV test at your state health department.

 

[Sunshine]

BILL REEVES: CDC CFS Programme Director talking about XMRV.

''If we validate it, great. My expectation is that we will not.”


BILL REEVES: EX CDC CFS Programme Director hearing about FDA validation paper 10 months later....

 

[BEG]

Sasha,

In the US, our medicine is privatized. It's absolutely imperative to have insurance. For low income folks, we have Medicaid. To get Medicaid, the amount one pays for rent in comparison to one's income or lack of, seems to be a defining factor. For those who reach retirement age and including the disabled, we have Medicare. Most, if not all of our CFS Specialists don't accept Medicare. Therefore, if one can't pay out of pocket, the only docs available are the Primary Care physicians in the big groups, once again as long as they accept Medicare.

Medicare does not pay for a lot of drugs, so we must pay out of pocket. Klonopin, for example, is one of them which is a biggie for us. Personally I can't imagine Medicare paying for such a test immediately. In fact, I would think until this test is widely available (through our Primary docs), it won't be paid for. Private insurance may pay 80% or pay nothing and put it towards a deductable. Does VIPDX accept Medicare? That is the key question for those of us who are disabled. VIPDX must file the paperwork with Medicare. Think I'll make some phone calls . . .

 

[Sunshine]

Sasha,

In the US, our medicine is privatized. It's absolutely imperative to have insurance. For low income folks, we have Medicaid. To get Medicaid, the amount one pays for rent in comparison to one's income or lack of, seems to be a defining factor. For those who reach retirement age and including the disabled, we have Medicare. Most, if not all of our CFS Specialists don't accept Medicare. Therefore, if one can't pay out of pocket, the only docs available are the Primary Care physicians in the big groups, once again as long as they accept Medicare.

Medicare does not pay for a lot of drugs, so we must pay out of pocket. Klonopin, for example, is one of them which is a biggie for us. Personally I can't imagine Medicare paying for such a test immediately. In fact, I would think until this test is widely available (through our Primary docs), it won't be paid for. Private insurance may pay 80% or pay nothing and put it towards a deductable. Does VIPDX accept Medicare? That is the key question for those of us who are disabled. VIPDX must file the paperwork with Medicare. Think I'll make some phone calls . . .

Hi. Does this help?

''VIP DX will bill Medicare as long as the patient provides a valid copy of their Medicare card and any supplemental insurance and the patients signs the ABN (Advanced Beneficiary Notice) located on the reverse side of the test requisition. Medicare patients will be responsible for any fees not covered by Medicare and supplemental insurance. Kit fees are not reimbursed by Medicare.''

''VIP DX will continue to provide patients with a complete statement including all ICD and CPT codes so that they can seek reimbursement from their own insurance company.''

 

[BEG]

Hi. Does this help?''VIP DX will bill Medicare as long as the patient provides a valid copy of their Medicare card and any supplemental insurance and the patients signs the ABN (Advanced Beneficiary Notice) located on the reverse side of the test requisition. Medicare patients will be responsible for any fees not covered by Medicare and supplemental insurance. Kit fees are not reimbursed by Medicare.''

Thanks. I have a Medicare Advanced Plan which covers my drugs. Calling them right now to see if this is covered.

 

[Bob]

Interesting that the VIP Dx site says that they are testing for "Human Gamma Retroviruses that include XMRV and its variants human MLV-related viruses."

So I wonder if we are to hear something later about different strains of XMRV... This would be a very interesting development... I think I remember Alter saying something about different strains, relating to his paper?

If this is a new announcement on VIP Dx's website, then it seems that the WPI are working closely with the NIH, and that they are coordinating their actions and announcements.

http://www.vipdx.com/

 

[urbantravels]

Why would it have been Friday otherwise?

 

[Sasha]

Why would it have been Friday otherwise?

People like to release stories they don't want to be widely covered on Thursdays/Fridays because they're less likely to get covered or read, is my understanding. So Monday is great!

 

[BEG]

Even in the US - where profit is king - you can get a free and anonymous HIV test at your state health department.

CBS,

Since our health insurance is connected to our jobs, prospective employers do not look favorably upon hiring someone with HIV or full blown AIDS. The drug treatment is SO COSTLY, and I imagine so are their insurace premiums, companies don't want that burden. It can bankrupt a small business. In fact, my husband is a small business owner, and he once had an employee with AIDS.

OMG, I just had a vision of CFS patients who finally are validated and then shunned from society. Are we going down the "Streets of Philadelphia?"

 

[Bob]

People like to release stories they don't want to be widely covered on Thursdays/Fridays because they're less likely to get covered or read, is my understanding. So Monday is great!

I think the journal publishes on Tuesdays doesn't it?
This suggests that the paper will be published tomorrow.
In which case they are having a press conference just before publication.

 

[VillageLife]

*PEOPLE IN THE UK*
please contact the media, main newspapers and your local newspapers.
Make sure we spread the word about the UK study which is being done by the WPI!!
The UK media may not be on our side, if you have some spare energy please contact them.

 

[pine108kell]

I think the purpose is to control panic. My guess is that they will present the fact that the virus is prevalent in CFS but there is no evidence it causes the disease, and that there is no known correlation between CFS and blood transfusions (and it seems like there would be). However, maybe they will screen for XMRV until the facts present themselves more clearly? I don't know why I am speculating and clogging the board--I have noting better to do--just waiting like everyone else.

 

[pictureofhealth]

In the UK the mainstream papers have an infuriating habit of following up any positive article on ME/CFS biomedical research by asking Prof Wessely (Psychiatrist) what he thinks. (He has been instated as media adviser on ME/CFS, presumably by the Government/Medical Research Council, for some time now.)

His reply as we know, is always a put down of some sort, so any initial potential media interest in a biomedical research breakthrough in ME/CFs often ends up fizzling out quite quickly.

I'm so looking forward to hearing his reply this time (unless he's quickly removed himself from the list) - but then again, he's had a few months notice to prepare it.
I'm willing to lay bets that it will be something along the lines of:' XMRV may be a problem in the US but its not present in the UK ME/CFS patients'. (Together with that classic line - 'And if it is we're not going to treat it')!

Enter the WPI with the results of their first 50 UK tested patients ...shame they can't publish their results in the same journal tonight (or maybe they have who knows??)!

 

[George]

I think the journal publishes on Tuesdays doesn't it? In which case, the paper will be published tomorrow.
So they are having a press conference just before publication.

Yeah, the press embargo is being lifted today. PNAS may e-publish ahead of print for this however since the ban is being lifted at 3:00 pm which is when PNAS puts out Early Edition I think we will see the NIH/LO paper today. But the actual Print edition will be tomorrow which mean Professors and doctors around the world that subscrib will get to see it. I'd bet on the front cover in bold print. (grins)

This is not a Friday 5pm kinda thing. This is big, really, really big and the message is most definately being controled. (grins) yeah, Sunshine too true where is ol' Bill Reeves now? (grins) Monroe seems to be the guy taking on the roll right now. Where did Elizebeth Unger go to, I wonder?

I hope everyone spends the time till the conference doing what Tina said. Type up an e-mail to your local press people with a little story about you and what you've suffered along with the press conference information. You are all going to be stars!!!

Yeah the HGRV as an umbrella for MLV's is really interesting. The Ruscetti's talked about how they thought the recipe might look like XMRV + MLV (pick one of like 176 varieties) = your version of illness. XMRV as the key master so to speak which get's the bad boy's into the cells by the back door.

Man I'm really excited to read the science today and over the coming months. OOOOppps. I promise to clean up the pee spots. (big grins)

 

[biophile]

In the UK the mainstream papers have an infuriating habit of following up any positive article on ME/CFS biomedical research by asking Prof Wessely (Psychiatrist) what he thinks. (He has been instated as media adviser on ME/CFS, presumably by the Government/Medical Research Council, for some time now.)

I expect the following lines of argument from people like Wessely: (1) It's still not proven that XMRV causes CFS. (2) XMRV does not invalidate previous psychological research. (3) We never claimed CFS was a "pure" mental illness, but simply posited that psychological and social factors were important during recovery. (4) We didn't know about XMRV at the time and were only going by the "best evidence" available to us.

 

[dipic]

I expect the following lines of argument from people like Wessely: (1) It's still not proven that XMRV causes CFS. (2) XMRV does not invalidate previous psychological research. (3) We never claimed CFS was a "pure" mental illness, but simply posited that psychological and social factors were important during recovery. (4) We didn't know about XMRV at the time and were only going by the "best evidence" available to us.

Dead on.

And nice avatar, btw.

 

[Bob]

The Ruscetti's talked about how they thought the recipe might look like XMRV + MLV (pick one of like 176 varieties) = your version of illness. XMRV as the key master so to speak which get's the bad boy's into the cells by the back door.

Hi George,
Do you have a link for that info at all please?
Thank you,
Bob :Retro smile: