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

[ixchelkali]

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?

Yup, I follow you. I'm worried about that, too. People --the powers that be-- aren't going to suddenly say, "Gee, oops, we were wrong, you really are sick. So sorry." I expect that in the name of avoiding a public panic, they will downplay, cover up, whatever. The press will play a role in setting the tone, too. And let's face it, they have more credibility than we do. Especially after 25 years of propaganda that we're all crazy anyway.

I'm not saying that recognition won't come. Just that I don't think it will be easy. We've got a lot of work ahead, I'm afraid.

And all those asymptomatic people? Yeah, I expect they will be used to demonstrate that XMRV doesn't cause ME/CFS, and that we all just have "faulty illness beliefs." Until they start getting sick, or until there's a way to measure viral load and other markers of disease progression.

 

[ixchelkali]

No one stigmatizes polio sufferers, for example.
sue

I don't think polio is really analogous, because it was only infectious briefly, during the acute phase, and then it was highly contagious. During the infectious stage, sufferers were quarantined. The health authorities put quarantine signs on their houses and they published the names in the newspaper. They were stigmatized, but they were popular, either.

The retroviruses remain with you, and as far as we know, remain infectious. But (so far anyway) they aren't highly contagious, thank goodness.

If it's different from HIV I think it's because the original at-risk groups were already stigmatized. ME/CFS sufferers are stigmatized, too, but in a different sense.

 

[leaves]

WOW guys and girls!! AWESOME !!!

 

[pollycbr125]

To be honest i dont give a jot to the stigma attached to xmrv . All i want is to start living my life again , ive already lost a lot of friends and same with family as they dont understand this illness so to me it makes no odds if folk treat me as a leper or not cause i might as well already be one already.

If im pos and i can get treatment and finally be able to be a mum to my kids again then ill be happy . I dont have much quality of life at the mo being mainly housebound so anything would be better than this . Im not expecting miracles and I certainly dont expect to get back to 100% of the old me back , but any improvement will be welcome .

Im not a worrier anyway and to be honest ive never given a stuff whether folk like me or not . I get on with most folk but if folk dont like me or if im pos wish to avoid me then im afraid thats their problem not mine and their loss.

Start looking at the things you will be able to do again if your health improves from what it is now , not whether folk are gonna be accepting or not . which is more important ?

 

[Athene]

Does anyone else think they are suddenly going to pull poor Johnathan Kerr out of the roadside skip they have thrown him into, and ask him to look again at the genetic variations he found, in order the explain why some people with XMRV get cancer, some get CFS and some are perfectly healthy?

I have a feeling the XMRV reports will be, well, not exactly deliberately played down in the press, but a bit of a non-event, simply because nobody understands enough about this yet. Journalists look for the "news angle" - some form of sensationalist and mass interest to justify printing the story. If they are spoon fed a good news angle at a press conference or in a press release, they will play up the story, otherwise it will get more or less forgotten. They want pithy and memorable factoids such as "We predict xxxx thousand Americans will die of XMRV in the next year"... stuff like that. If the whole story is longer and more complex and cannot be broken down into bullet-point/punchline type delivery they are turned off.

I think the real effect of this news will be the start of lots of research into the virus and what it really does to the body. And I do believe that is actually better news for us than simply creating a situation where everyone realises how bad our virus is, and is afraid of catching it from us.

 

[Cookie Monster]

To be honest i dont give a jot to the stigma attached to xmrv . All i want is to start living my life again , ive already lost a lot of friends and same with family as they dont understand this illness so to me it makes no odds if folk treat me as a leper or not cause i might as well already be one already.

If im pos and i can get treatment and finally be able to be a mum to my kids again then ill be happy . I dont have much quality of life at the mo being mainly housebound so anything would be better than this . Im not expecting miracles and I certainly dont expect to get back to 100% of the old me back , but any improvement will be welcome .

Im not a worrier anyway and to be honest ive never given a stuff whether folk like me or not . I get on with most folk but if folk dont like me or if im pos wish to avoid me then im afraid thats their problem not mine and their loss.

Start looking at the things you will be able to do again if your health improves from what it is now , not whether folk are gonna be accepting or not . which is more important ?

Im liking your attitude Pollycbr - i think from a young age i was overly concerned by what other people thought, yet as time has passed and the fullness of my life has been gradually eroded im learning to migrate myself over to a stance much closer to yours :Retro smile:

Forgive me this one small point though , which i think may be helpful to all, is that if people do need to use a retrovirus for comparison - maybe we could all try to use FeLV or even HTLV (if you need impact) instead of HIV.

CM

 

[lansbergen]

Yes, I also think FeLV would be better.

 

[Alexia]

To be honest i dont give a jot to the stigma attached to xmrv . All i want is to start living my life again , ive already lost a lot of friends and same with family as they dont understand this illness so to me it makes no odds if folk treat me as a leper or not cause i might as well already be one already.

I agree I don't care what people think about me, they already think I'm crazy sometimes!

 

[bullybeef]

On another subject, and whilst taking a look at all the known HERVs, it has shocked to know out of a great number, there are only two rodent retroviruses! Obviously we know of MLV, and the Mouse mammary tumour virus is linked to causing breast cancer in rodents!! There is so much linkage!!!

 

[eric_s]

Hi all

I just heard about this some hours ago. This is incredible!!!! The NIH and FDA, that's about the best one could get. And Dr. Alter seems to be a big guy. Of course it's not published yet, but there's no doubt it will be. The only thing that i'm not sure about yet, did they test an entirely new set of samples, from other persons than in the Lombardi et al. paper? (I haven't read all the pages of this thread, maybe someone has already answered this.) If yes, then that should be it.
I congratulate everyone on this forum!!! :victory::victory::birthday hat::birthday hat:

 

[Martlet]

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.

Alternatively, they might just decide that this is worthy of a later release, with the government announcing that it's on the case. Hard to tell what will work politically, given all the other stuff over which government has no control.

 

[Esther12]

I don't want to suddenly prompt a flurry of e-mails, but has anyone contacted the lead researcher (guy with his own wikipedia page)?

Even if he couldn't confirm anything, or provide more details, having him directly avoid rubbishing the report would be good. I'm still kind of worried this is all compeletly wrong, and we're just getting carried away in it.

Did Cort contact him for the article? Or are all the quotes from him just from that initial press release?

 

[jeffrez]

I don't want to suddenly prompt a flurry of e-mails, but has anyone contacted the lead researcher (guy with his own wikipedia page)?

Even if he couldn't confirm anything, or provide more details, having him directly avoid rubbishing the report would be good. I'm still kind of worried this is all compeletly wrong, and we're just getting carried away in it.

Did Cort contact him for the article? Or are all the quotes from him just from that initial press release?

How is it wrong? We all saw the slide Alter presented at the conference.

 

[Martlet]

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.

I don't think they can be blamed for not knowing the cause, but I think they can be blamed for:

- Not researching the cause
- Not believing patients who keep telling them that they are sick
- For denying benefits to patients, thus forcing them to work until they get even sicker.

Personally, I would like to see some lawsuits. I would like to see those who have been reduced to poverty by this disease compensated for the lack of care they have been given over the years and those who have suffered emotionally from the stigma of being told (and having their families and friends believe) that it is all in their minds at least be able to afford some things that make their lives more pleasant. And I would like every single one of us to have a T-shirt that reads:

I TOLD YOU IT WAS REAL

 

[bullybeef]

Hi all

I just heard about this some hours ago. This is incredible!!!! The NIH and FDA, that's about the best one could get. And Dr. Alter seems to be a big guy. Of course it's not published yet, but there's no doubt it will be. The only thing that i'm not sure about yet, did they test an entirely new set of samples, from other persons than in the Lombardi et al. paper? (I haven't read all the pages of this thread, maybe someone has already answered this.) If yes, then that should be it.
I congratulate everyone on this forum!!! :victory::victory::birthday hat::birthday hat:

I answer to your question, Eric, and based upon best guess, this study had to be completely independent from the other US studies, so yes, they must have got their blood from elsewhere.

It was interesting that is stated between 4-7% XMRV in blood donor population. Does that mean he tested blood from another country? The 3% discrepancy is a big jump for blood tested in the same country.

http://www.sanquin.nl/ipfa/Upcoming...cc818c125706600483652!OpenDocument&AutoFramed Page 10

 

[judderwocky]

the slides have been confirmed by a spokesperson for the NIH... they won't comment, except to say the slides are authentic, and that a study is due soon. That was verified by the Wall Street Journal, and posted on their Health Blog.

http://blogs.wsj.com/health/2010/06/23/further-evidence-of-an-xmrv-chronic-fatigue-connection/

 

[Cort]

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:

This time I have a good source I asked Dr. Mikovits - she's on the team overseeing the DHHS study and she said she didn't know anything about this study. There are lots and lots of studies going on...that's what you get when you get an article in Science I guess.

 

[Eric Johnson from I&I]

> The only thing that i'm not sure about yet, did they test an entirely new set of samples, from other persons than in the Lombardi et al. paper?

A commenter at Racianello claims the answer is yes. I don't know what his source is.

 

[Cort]

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

There is the official DHHS study team and then there are the thousands and thousands of researchers that are employed by the NIH; I guess he's one of them.

 

[usedtobeperkytina]

I agree, comparison to FeLV is not only more accurate to the type of virus and course of disease, but it takes it away from the realm of immoral behavior possibly contributing to it, and takes away the fear of imminent death.

I am not convinced that WPI samples aren't included in this study, even with the "no involvement." That may refer to their not doing any testing. If I were FDA and NIH, I would test some WPI positives, some controls, some in blood supply, some from known CFS clinician (who can identify those that actually have the disease) and some more controls.

Our mantra: http://www.break.com/pictures/i-told-you-i-was-sick412399.html

Yes, lawsuits are the key. I suspect first lawsuits may be against blood collection agencies for catching it through the blood. As for suing CDC, I don't know if that is possible. But news reports may lead to GAO or congressional investigation.

Anyone contacted Time magazine?

Tina