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

[acer2000]

Second any definitive study but hopefully point out where the other five or six researchers went wrong. Was it all due to lack of culturing - as Dr. Mikovits pointed out so long ago - or is it something else?

Yeah I am curious about this as well. They need to reconcile the differences in findings between the studies. I guess we will find out soon enough. :-/

 

[judderwocky]

my guess is its in the pcr... the study on respiratory secretions tested several other pcr kits and found that they had different success rates on correctly identifying known positives.

 

[Cort]

Hi villagelife

I have been planning to write another email to every health minister in Australia, plus their opposition counterparts. These are the people in charge of state and federal health decisions. I have simply been waiting for official confirmation of the WPI results. That could be only days away now.

My previous emails have only been to our federal health minister. Neither she nor her staff members have replied as yet.

bye
Alex

Maybe if some positive studies come out they'll start answering your emails.

 

[Michelle]

This probably deserves a thread on it's own, but I noticed no one had mentioned it here (though my brain fog is great and I may well have missed it -- I mean, this IS a long ass thread) and it seemed relevant, not to mention I'm too tired to put it somewhere else, but the CAA has announced on their Facebook page that Vincent Racaniello is presenting at their next webinar, along with Dr Bateman. I'm assuming this means a big paper is about to come out on this and they've got Racaniello along to explain it to patients. Especially as yesterday they were pleading with everyone on Facebook that a bunch of studies were coming out soon and we just HAVE to wait as they are embargoed, yada yada yada.

Racaniello has been fairly ambivalent so far. Is he becoming a believer?

 

[Cort]

Yeah, CDC's study (assuming it is negative) may be the valid one and WPI, NCI, CC, NIH and FDA are all wrong. Get real. We all know how objective and scientific CDC is when it comes to ME.

Remember this is not Dr. Reeves; this is the HIV/AIDS division of the CDC - presumably filled with retrovirologists who probably want nothing more to do than find another retrovirus to work on. They have nothing to do with the CFS research team and until this happened probably wouldn't have known them if they'd bumped into them in the hall. We don't even know what their results are. Let's give them a chance.

I would hardly defend the CDC's or any other federal agencies miserable activities on CFS but I would point out that no one even knew this retrovirus existed until a couple of years ago, so if it is indeed the major factor in CFS, they would have had alot of difficulty finding it. Even the WPI didn't pick it up in their vaunted pathogen array tests.

On the other hand I think you can make a great case for federal agencies basically ignoring the plight of many people for many years.

 

[Cort]

This probably deserves a thread on it's own, but I noticed no one had mentioned it here (though my brain fog is great and I may well have missed it -- I mean, this IS a long ass thread) and it seemed relevant, not to mention I'm too tired to put it somewhere else, but the CAA has announced on their Facebook page that Vincent Racaniello is presenting at their next webinar, along with Dr Bateman. I'm assuming this means a big paper is about to come out on this and they've got Racaniello along to explain it to patients. Especially as yesterday they were pleading with everyone on Facebook that a bunch of studies were coming out soon and we just HAVE to wait as they are embargoed, yada yada yada.

Racaniello has been fairly ambivalent so far. Is he becoming a believer?

I don't know. I think he's being a careful scientist which means that when he gets convinced so are probably the rest of his peers; it'll be good to follow his opinion with that in mind and see what he has to say on that webinar.

Alter's study, by the way, is not the DHHS study. This is an entirely different study altogether - one we were not aware of.

 

[Michelle]

Definitely agree about him being a careful scientist. And I'm perfectly happy with a scientist being ambivalent because she/he is being careful.

 

[alex3619]

Hi acer2000

You are probably right, and certainly from an epidemiological perspective. As an activist, I see comparison with current controlled HIV as more useful - its spin, I admit it, but we need ammunition. Also, even at the height of the HIV epidemic I don't think it was between one person in every 33 to one person in every 14. Very rarely in history does that happen. If my predictions about prevalence rates are right, then it could go to one in ten.

In parts of Africa nearly one person in 3 has HIV of course. That is our example of what happens with an uncontrolled retrovirus!

"Look around you at your family, friends and colleagues. Do you know 100 people? Then ten of them probably have this lethal retrovirus!" That is going to make an impact no matter what if it gets to that point. Even at one in 33 it will make an impact.

Bye
Alex

Yeah but consider this. Thats the incidence of HIV *now* - 30 years after it was "discovered". The incidence of new infections of HIV in developed countries is almost nothing now due to prevention, awareness, treatment, etc... Many of the original people infected with HIV in the early 1980s died, so the worldwide numbers as a percentage of population went down over the years.

This is of course with a few exceptions - certain African countries, maybe China, and certain urban settings (Washington DC, Detroit, ie).

So I guess you need to compare the theoretical incidence of XMRV now, before its controlled to the incidence of HIV at the peak of the epidemic to make it a fair comparison.

 

[Otis]

Alter's study, by the way, is not the DHHS study. This is an entirely different study altogether - one we were not aware of.

Do we know any more than that? If I read it on this thread that brain cell is now gone. Have you a source? :Retro wink:

 

[cfs since 1998]

Alter's study, by the way, is not the DHHS study. This is an entirely different study altogether - one we were not aware of.

Alter works for the NIH, part of the DHHS. So I don't understand what you mean.

 

[mezombie]

Washington Post contact

All I did was take that press release and send it on to the list of contacts. I said nothing more than that. I thought I would give these people background for when the real study hits. I don't know if the WSJ already had this press release or if she got it from me (I sent it to them at 10:30am today and it post at 6pm tonight). I suggest sending the press release and the blood supply statement off to the media so that they can start their research for when the real study comes out -- and when they and others realize the dire significance of what XMRV in large numbers and in the nation's blood supply could possibly mean. We CFIDS/ME sick understand just how bad this situation is/can/will be, but the public and media may not yet understand just how awful this new information is and what it may mean to everybody.

I was really just giving the media a "heads up". No thinking from me since I can't think...

Excellent, Muffin!

I was bitterly disappointed in the way the Washington Post covered (or better put, didn't cover) the WPI study. At the time one patient's lackluster response to the XMRV news was buried in the newspaper's health section.

Because of that, I sent the press release to the national editor, not the health editor: national@washpost.com. The "Health" section doesn't really cover science very well; it's more oriented toward what people can do to maintain their health.

 

[taniaaust1]

oh lol.. i didnt think that post wouldnt work as my other disappeared.. trying again. i havent gone throu all the posts so dont know if anyone else has posted about this.

On the wall street journal blog http://blogs.wsj.com/health/2010/06/23/further-evidence-of-an-xmrv-chronic-fatigue-connection/ someone has made a very interesting comment. http://blogs.wsj.com/health/2010/06...xmrv-chronic-fatigue-connection/tab/comments/

6:52 pm June 23, 2010
S wrote:
.This is a statement by Mr. Roger Dodd, VP-Research and Development; Holland Laboratory, American Red Cross at a 5/11/2010 meeting of the FDA’s - CENTER FOR BIOLOGICS EVALUATION AND RESEARCH - EMERGING INFECTIOUS DISEASES: EVALUATION TO IMPLEMENTATION FOR TRANSFUSION AND TRANSPLANTATION SAFETY:

“In the context of XMRV, I think that there is an emergency, but it’s a perceptual emergency. And I’m not as well versed in the tools of managing that, but I think that what we need to do is to manage people’s reactions rather than people’s safety at this point. I hope during the day that somebody can come up with a mechanism to manage that.”

I wonder if MR. Dodd feels the same way today? Granted, there is still a lot of work to be done to establish that the pathogen, XMRV, is associated with a disease state but here is another statement by Mr. Dodd from the same meeting:

“I spent a little time considering whether there are any precedents from things that we’ve done since the appearance of AIDS. And I find really not a lot; HTLV we took rapid action because after all, it was a retrovirus. ”

Mr. Dodd (and the American Red Cross), XMRV is a retrovirus! Please, feel free to try and manage my safety!

I know the FDA does post there meetings online which are publically assessable to anyone on pfd files as i came across one the other day, so i dont doubt this quote in which the FDA said it was more worried about peoples reactions then safety is true.

So now we all know why another reason why there has been no big public announcement!! they dont want to cause panic..

If anyone has the link to the actual source quote by FDA please post it. (im too tired right now to go looking for it)
................

Could the original FDA info leak have been planned??? To see what public reaction will be before they go and make the big announcement.

 

[usedtobeperkytina]

Good news!!
WPI post NIH & FDA finding on there website!!! http://www.wpinstitute.org/news/news_current.html

wohooo!!

So the embargo must be over and publication is imminent.

Tina

 

[acer2000]

So the embargo must be over and publication is imminent.

Tina

Heh... It aint over till the fat lady sings. This news has been mighty leaky so-far. I wouldn't assume anything unfortunately. :-/

 

[George]

I think they tried to do an embargo but couldn't. (grins) Gotta love the web!

 

[taniaaust1]

im keeping an eye on pubmed. To see if they publish the study there before it appears in a journal. Nothing there yet http://www.ncbi.nlm.nih.gov/sites/pubmed . i sooo want to see the study.

 

[ixchelkali]

It seems unlikely to hold up negative reports, and in fact it seems that the negative reports have just gone right on through. In addition positive reports that about XMRV but not about CFS have been published.

I think it's quite possible that the CDC would hold off publishing a negative study if the NIH & FDA are about to publish positive ones. Someone might think they just didn't know how to find the virus. [ya think?!]

My point is that all those people walking around with XMRV may "potentially" become ill.

Yes. There's still the possibility that it requires XMRV plus another pathogen to produce illness. That could also explain some of the cluster outbreaks.

My guess is that the major information will be released in August mid to late this year. And like someone else pointed out about the new cycles it will take till about November for the general public to get the message. By then they should have things in place.

My guess is that it will be sooner. This is an election year. If there's going to be bad news for the public, they'll want to get it out of the way sooner, rather than closer to the election in November.

 

[ixchelkali]

Hey Judderwocky, do you happen to know if for sure the CDC has a negitive study or was that a rumor that got turned into a fact????? (confused doggie looks) Could you point me in the direction of that info/fact please. Thank you, (slurp)

George, I think that comes (in part) from CFS Central's blog http://www.cfscentral.com/2010/06/blood-feud-part-2.html. She says "The CDC also completed and is due to publish an XMRV study shortly. One highly placed government source says that the CDCs study didnt find the virusthough, the source says, another unnamed government agency has."

 

[taniaaust1]

I just started getting nervous that once this news hits (if it does), it is going to be downplayed dramatically. They (meaning the government) don't want people to freak out so I wouldn't be surprised if they try to make it sound like no big deal. Like, yes, there is a retrovirus that is prevalent, but it's not that serious in MOST cases. You may get chronic fatigue and be a bit tired, but this isn't HIV or AIDS so don't worry.

And what about all the people who are carriers but don't know right now? If they find out they have it, I can see some of them saying - well, I have it and feel fine, so you musn't be that sick.

Does anybody follow what I'm trying to say here?

im following you and there is already the evidence out there that they will try to downplay as much as possible as after all.. FDA person has already said that the public response to the news is more important than safety aspects. So expect it be downplayed some.

i think thou if the fact that this virus is also found in prostate cancer (was the rate 25% of prostate cancers? have this virus).. that factor needs to be pushed too with this virus. As NO-ONE can deny prostate cancer is serious.. every one knows males die from that all the time. We must not let them deny the serious of this virus!! (or we will all be back to square one again).

(i dont understand why with all the more funding which goes into cancer research, why the XMRV and prostate cancer link hasnt been all sorted out yet and it appears the CFS-XMRV link may be sorted out first).

The prostate cancer - XMRV link has gone the same way as the CFS -XMRV was.. with some studies saying it wasnt found at all (i dare say those didnt following the right procedures to find it) and others saying yes there is a strong link with it there.

When i last look a while ago at prostate cancer and XMRV.. there was about equal number of studies backing up the original findings to the ones in which it couldnt be found at all. If the prostate cancer link with this virus is completely accepted as correct, then no-one is going to dismiss ANYONE (including us) who has a dangerous virus which can be transmitted. So lets hope that link is also pushed along.

Mentioning that link.. will shut many up who think CFS isnt a major issue.

Everyone ask themselves.. could CFS-XMRV be confirmed as we are all sure it will be but then be said that XMRV dont cause a major illness? (by those who have always doubted how sick we are and want CFS to jsut go away).


i can imagine wesley saying "it has been confirmed that XMRV is linked with CFS but XMRV doesnt cause permanent issues as it's actually a minor virus, it's the "illness beliefs"., which cause disability in this group of patients. I recommended CBT and GET". LMAO.. im waiting for him to post such a response.

 

[Daffodil]

if fibromyalgia, autism, and some MS cases (and maybe other diseases such as ALS?) turn out to be caused by XMRV or related viruses, i wonder if the stigma would that bad. certainly, with anything infectious there is some stigma, but this seems to be a little different from HIV.

once a vaccine is developed, it will go a long way to help....no one stigmatizes polio sufferers, for example. just the damn "retrovirus" categorization sucks.

sue