FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

[VillageLife]

Even if it all falls apart tomorrow, at least tonight we were happy!

 

[Cort]

How does Alter connect with the DHHS/CDC studies. Does anyone know? Is this those studies they are talking about? Or is this something else.

 

[sproggle]

Ok so I tried to switch off &sleep -2am here &I'm supposed to be spending time with my mum tomorrow but I just had to check back in &frankly i'm hooked!!!!!!!! :tongue:

Think I will be falling asleep at some random time of the morning with my finger still on the refresh button then panicking when I wake that I've missed something!!!

I've believed in XMRV being linked to ME/CFS for many months &also in the integrity of the WPI and the Science study. I'm soo pleased it's looking like we won't be disappointed. I mean even if it is not the cause of ME/CFS just very common in sufferers surely research into ME/CFS overall will benefit from the added interest etc..

:victory::victory::victory: Wooohoooo!!! We deserve good news &also the right to celebrate it NOW :victory::victory::victory:

We all know the score: the paper has not yet been published &XMRV has not been proven to cause ME/CFS but this is definitely a step in the right direction!!

Jan xx

 

[Lynn]

What is MMD Newswire (the source of the press release)? Is it a credible news source?

Lynn

 

[jimbob]

A cigarette butt versus XMRV, I don't think so!

 

[bullybeef]

http://www.oslersweb.com/

THE BIG ONE, JUNE 21, 2010:

I received a call today from an investigator at a major American university who is involved with XMRV research. He is the second reseacher-scientist to have advised me in as many weeks that a major research paper is about to be published in which the conclusions reached by the authors of the Science paper of October 9, 2009--which linked the gammaretrovirus XMRV to chronic fatigue syndrome and proved it was infectious--have been replicated. In addition, it seems the new data may be even stronger. In other words, the positivity rate among chronic fatigue syndrome patients may be significantly higher. In addition, silent or latent infections in the general population may be, in this new data, as much as twice as high as originally reported in Science.

The U.S. agencies involved are the Food and Drug Administration and the National Institutes of Health. The paper is currently in press at a highly respected journal. There initially was some concern that senior staff at the Centers for Disease Control might try to suppress this paper by intimidating the editors at the journal. My source today scoffed at that notion and suggested the prestige of the journal is such that any effort to squelch the data would be quite difficult.

At least one of the investigators involved in this new study has had a long-standing interest in the etiology of chronic fatigue syndrome.

The scientists who collaborated on this new study did their work entirely independently of the authors of last October's groundbreaking Science paper.

Now comes this press release today from the Netherlands, titled, "FDA and NIH confirm 'XMRV' Findings."

Here is the link to the press release.

(more to come)

 

[Mark]

The key news in the report - zero surprise but will be the key problem for them I suspect:

"XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%"

Confirmed in the blood supply, your risk of infection from said blood being 3-7%.

They will be churning over the implications of public knowledge of that one, for sure. One would imagine a super-reliable screening test would be a high priority...

 

[jeffrez]

Ok so I tried to switch off &sleep -2am here &I'm supposed to be spending time with my mum tomorrow but I just had to check back in &frankly i'm hooked!!!!!!!! :tongue:

Think I will be falling asleep at some random time of the morning with my finger still on the refresh button then panicking when I wake that I've missed something!!!

I've believed in XMRV being linked to ME/CFS for many months &also in the integrity of the WPI and the Science study. I'm soo pleased it's looking like we won't be disappointed. I mean even if it is not the cause of ME/CFS just very common in sufferers surely research into ME/CFS overall will benefit from the added interest etc..

:victory::victory::victory: Wooohoooo!!! We deserve good news &also the right to celebrate it NOW :victory::victory::victory:

We all know the score: the paper has not yet been published &XMRV has not been proven to cause ME/CFS but this is definitely a step in the right direction!!

Jan xx

If true, it definitely feels like a step in the right direction. Let's keep our fingers crossed that it leads to more research, which it should.

What would be great now would be to see researchers 1) find out how to kill XMRV, and then 2) show that when they killed XMRV in CFS patients, the patients recovered, or even got a lot better. That would be close to definitive, and anything after that wouldn't matter anyway, because any practitioner would then be pretty willing to give a trial at least of anti-XMRV drugs to anyone suspected of having CFS.

 

[usedtobeperkytina]

Mr. Kite, you are correct. But I knew that causality is only going to be proved when treatment is proved.

Even if it is opportunistic, the difference of 4% (or 7) contrasted to 67% tells you XMRV, which is infectious, plays a role in the pathogenesis.

Up to this time, the viruses associated don't have such a contrast like that.

Plus, this one directly attacks immune system cells, the very immune system cells that are abnormal in function or number in CFS patients. Again, this is strong evidence that XMRV is part, if not at the root, of the pathogenesis of CFS.

We will have to see if cutting back on XMRV replication reduces CFS symptoms. But, one thing for sure, that type of research will happen now. Without a study confirming the numbers, we would not see such a study, likely.

So this is a big leap forward, even though it doesn't take us to the finish line.

Tina

 

[alex3619]

Hi Ever Hopeful

I noticed these comments too. There was an emergency closed conference on these issues in May last year if I recall correctly. The WPI knew something had to be done around March. They had to wait another seven months for publication, but a private conference was possible. This explains why it was listed as a threat in August.

The regulatory not technical refers to the fact we have diagnostic technology that works, but its use has to be approved and funded i.e. red tape is the real issue.

Bye
Alex

I'm not feeling very good today, so if this comment is redundant or just super obvious pardon me, but did anyone else notice on slide 27 (the 1st un-numbered slide towards the end of the presentation) that it lists XMRV as a prioritized EID threat as of August 2009 and also says "The only barriers to rapid development and implementation of such diagnostic testing capabilities are regulatory, not technical." Regulatory, not technical??!!

 

[Mark]

There initially was some concern that senior staff at the Centers for Disease Control might try to suppress this paper by intimidating the editors at the journal.

Are the CDC inappropriately named? Do they aim to control disease, or information?

 

[Daffodil]

O m g

 

[sproggle]

O m g

Lol, I know!!

 

[Rrrr]

HIP HIP HOOOOORAY!!!!!!!!!!

i want my life back!!!!!!!

 

[Elliot]

"Annette Whittemore Andrea is the excited poster today . Sorry looks like there are embargo policies that need to be followed just like Science paper so I'm erasing anything to do with earlier info . But Hooray for Progress"

Via facebook.
See I was right about whether it would be correct for them to quote it as a researcher themselves. Nur nur nurr :Retro tongue:

I am such a sceptic and sometimes awfully cynical but I can't help but be excited by this news!

 

[jeffrez]

Mr. Kite, you are correct. But I knew that causality is only going to be proved when treatment is proved.

Even if it is opportunistic, the difference of 4% (or 7) contrasted to 67% tells you XMRV, which is infectious, plays a role in the pathogenesis.

Up to this time, the viruses associated don't have such a contrast like that.

That doesn't really prove pathogenesis.

Plus, this one directly attacks immune system cells, the very immune system cells that are abnormal in function or number in CFS patients. Again, this is strong evidence that XMRV is part, if not at the root, of the pathogenesis of CFS.

That is much stronger evidence for a role of XMRV in some aspects of the illness. Still not causal yet, but it's a lot better.

We will have to see if cutting back on XMRV replication reduces CFS symptoms. But, one thing for sure, that type of research will happen now. Without a study confirming the numbers, we would not see such a study, likely.

So this is a big leap forward, even though it doesn't take us to the finish line.

It's an important development, at least. The big leap forward will come with a better link to causality, imo. Well, it will be interesting to see how this plays out, at least. I'd like to hear more solid information on what data or statements are coming out when, by who specifically, etc.

 

[dsdmom]

I wonder if part of the hold up on the official release of this information is connected with the need to have an accepted test for XMRV both for individuals and for the blood supply. Any ideas?

I would think so. I mean, how scary to release information saying that there was an infectious retrovirus in the blood supply and for those of you who need blood transfusions, we're sorry but we can't test for it and we can't filter it out of the supply, so you just have to take your chances! Pretty sure that if I have xmrv I was infected this way...

So, whose samples do we think are included? Klimas, Bateman, Cheney? (Gosh, hadn't talked about Cheney for a while.)

My bets are on Klimas. Do I have any takers?

Tina

I spoke with Nancy yesterday and asked her about what the upcoming positive study was supposed to be - she had no idea. She said she had to harrass Suzanne Vernon to get any info - all she knew was that there was a positive study coming but even Nancy didn't know who did it. Also, as far as her samples go, I don't know if they were from her or not. I do know that she told me that everyone (in the research community) was finally supplied with positive and negative controls. And that she will be testing her patient samples when her lab has their testing up, which should be by the end of July.

 

[Otis]

That's the REAL endgame here Rrrr!

I've always felt that mentally that I felt that if I knew what I was fighting it would be part of the equation to getting better. Of course I didn't imagine it might be in my DNA...

 

[dsdmom]

We will have to see if cutting back on XMRV replication reduces CFS symptoms. But, one thing for sure, that type of research will happen now. Without a study confirming the numbers, we would not see such a study, likely.

So this is a big leap forward, even though it doesn't take us to the finish line.

Tina

My thoughts exactly!

 

[OverTheHills]

NZ is very excited too!

At least my bit of it is