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

[moonchild]

So the embargo must be over and publication is imminent.

Tina

gosh i hope so - not a patient person! SO want to know when it's coming out...

 

[usedtobeperkytina]

My question was really whose finding about the strong association and causality likely but not proven Dr Alter was talking about - the WPI's original finding (of a strong association that nevertheless didn't prove causality but made it look likely) or new research by Alter's group. The wording (from Dr Alter's slide) seems ambiguous to me in that respect - of course, to anyone in the audience it would have been clear! The new figures about prevalence in the blood supply seem to make it clear that that research at least is Alter's. But the CFS/XMRV link? Anybody?

Sasha, if he was referring to just the amount in healthy population, he would not have referred to WPI study. The amount in population was discovered by Silverman in the prostate cancer study. So, although I agree it is not clear, I think he is referring to amount in CFS patients.

Two things were "discovered" in WPI study. The virus is infectious and the rate of infection is much higher in CFS patients than healthy controls.

Also, other studies have also reported amounts in healthy controls, beside Silverman and WPI. So if that is what he was referring to, he would not have specified the WPI study.

Notice also, he said the WPI study is likely true, despite the controversy? What controversy? The rate in healthy people? No, the controversy as to prevalence in CFS patients.

Tina

 

[usedtobeperkytina]

I see the story is now covered on a New Scientist blog (but I'm still confused about whether Dr Alter is referring to his own research or WPI's!). There's a powerful comment by a very ill PWC.

Hey, they directly linked back here to us. We're famous!

Funny, I imagine someone linking from here to there, back to here, back to there, lol

Tina

 

[Rrrr]

Sasha, if he was referring to just the amount in healthy population, he would not have referred to WPI study. The amount in population was discovered by Silverman in the prostate cancer study. So, although I agree it is not clear, I think he is referring to amount in CFS patients.

Two things were "discovered" in WPI study. The virus is infectious and the rate of infection is much higher in CFS patients than healthy controls.

Also, other studies have also reported amounts in healthy controls, beside Silverman and WPI. So if that is what he was referring to, he would not have specified the WPI study.

Notice also, he said the WPI study is likely true, despite the controversy? What controversy? The rate in healthy people? No, the controversy as to prevalence in CFS patients.

Tina

by "controvresy" i think he was making reference to the negative published papers we've seen.

 

[Sean]

And I would like every single one of us to have a T-shirt that reads:

I TOLD YOU IT WAS REAL

He he. Spike Milligan has this engraved on his headstone:

I told you I was ill.

 

[ixchelkali]

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 ?

Polly, I don't think the "stigma" that people are worried about is a matter of whether people like you. I don't know what the early AIDS epidemic was like in the UK, and I don't know if you're old enough to remember it. But at least in the US, in the early panic people with AIDS were tossed out of their rented homes, fired from their jobs, neighbors wouldn't let their children play with the patients' kids, kids who had AIDS weren't allowed to attend school (and when the courts forced the schools to let them in, the parents of other students kept them home). Some patients with AIDS couldn't get medical or dental care, because the health care workers were afraid of catching it. They couldn't get insurance to pay for medical care, either. When they got really ill, some of them had no place to go, because their families were afraid to take them in, and some hospitals and most nursing homes wouldn't take them. It was ugly.

I don't mean to suggest that's going to happen again. I think we've learned something from AIDS. But until we know the means of transmission, people may be nervous. And some of us who remember those days may be a little nervous about being on the receiving end of that kind of "stigma."

But on the whole, I agree with you. Knowing is better than not knowing, and getting treatment would be even better.

 

[Recovery Soon]

I think most people on this forum will appreciate the following anecdote:

This morning I was waiting for the train to arrive and talking to someone on the phone about the potential panic regarding the NIH/FDA leak. When I hung up a women with a frightened look came up to me and said "I just heard part of your conversation. What disease is going to make people panic?" I then explained the CFS XMRV connection and blood supply issues. She then looked even more frightened and said "I am a Christian and I was just wondering what plagues are coming down the pike."

To this I replied- "The big one is coming, so tell everyone you know. No one's safe. Be afraid. Be very afraid."

She then wandered off looking very frazzled. I then smiled and enjoyed my ride.

That's how we get the word out folks!

BTW- Why did WPI pull down the Press Release?

 

[ixchelkali]

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

Good idea! I agree. I think it makes sense to look at FeLV, since it's a gammaretrovirus like XMRV, the illness it causes has been studied by veterinary medicine, and cats are mammals. Looking at HIV for politics, funding, organizing, etc, makes sense, but feline leukemia virus might be a better disease model.

 

[moonchild]

LOVING the t-shirt idea!

 

[ixchelkali]

"Pop! goes the weasel"

:Sign Good one:

 

[Michelle]

Recovery Soon:

To this I replied- "The big one is coming, so tell everyone you know. No one's safe. Be afraid. Be very afraid."

She then wandered off looking very frazzled. I then smiled and enjoyed my ride.

Perhaps one of those chain emails along the lines of, say, "send this email to five people in the next 24 hours and you will protect yourself; 10 people and you will protect your loved ones," etc. would be in order? ::giggle:: :Retro tongue:

 

[ixchelkali]

I've said it before and will say it again - WPI desperately need to get someone in to take a firm grip of their PR.

They just hired a PR firm, R&R Partners (www.rrpartners.com/). It was on their Facebook page today.

 

[usedtobeperkytina]

by "controvresy" i think he was making reference to the negative published papers we've seen.

Yes, the ones who tried to find it in CFs patients, but declared they couldn't.

My point is, since he is refering to FDA verification and said WPI is true despite controversy, he is rejecting the controversy (that is isn't in CFS patients) and saying it is in CFS patients, as WPI claimed, which FDA and NIH confirmed.

As I said, WPI did not discover it in healthy population. So confirmation must mean infectious and rate in CFs patients, despite those that claimed they couldn't find it (the controversy).

Tina

 

[ixchelkali]

Not sure I want people looking up FeLV on Wikipedia and finding:

"Transmission of FeLV is mainly via saliva and friendly behaviours, such as sharing feeding bowls and mutual grooming (as distinct from fighting and biting)."
​

unless we want people to be afraid of casual contact with us. Obviously, if it turns out casual contact is, in fact, dangerous we have a BIG problem. But it's not looking that way and we don't need to get that idea out there, IMO.

I kinda think mutual grooming, at least the way cats do it by licking each other, would be beyond "casual contact" in people, LOL. :Retro tongue:

But your point is well taken.

On the other hand, we don't know HOW it's transmitted. Hopefully once we have a standardized test they'll do epidimeological studies that, along with the lab studies, will explain it. I could be in saliva; some retroviruses are.

WE NEED RESEARCH! LET THE RESEARCH BEGIN!

 

[Grishnkh]

Are they letting participating PWCs know their individual test results?

On another note, with this latest news, I'm ready to take the plunge and pay for the test.

Hi please forgive me english is not my first language. I did read this forum for some time now, i saw your post that you said you were helped by prayer, if you test negative what do you think you could have been cured of? I'm wondering about this too.

 

[bullybeef]

Does anyone know how MLV is transmitted?

 

[pollycbr125]

Polly, I don't think the "stigma" that people are worried about is a matter of whether people like you. I don't know what the early AIDS epidemic was like in the UK, and I don't know if you're old enough to remember it. But at least in the US, in the early panic people with AIDS were tossed out of their rented homes, fired from their jobs, neighbors wouldn't let their children play with the patients' kids, kids who had AIDS weren't allowed to attend school (and when the courts forced the schools to let them in, the parents of other students kept them home). Some patients with AIDS couldn't get medical or dental care, because the health care workers were afraid of catching it. They couldn't get insurance to pay for medical care, either. When they got really ill, some of them had no place to go, because their families were afraid to take them in, and some hospitals and most nursing homes wouldn't take them. It was ugly.

I don't mean to suggest that's going to happen again. I think we've learned something from AIDS. But until we know the means of transmission, people may be nervous. And some of us who remember those days may be a little nervous about being on the receiving end of that kind of "stigma."

But on the whole, I agree with you. Knowing is better than not knowing, and getting treatment would be even better.

I know folk are looking back at hiv/aids and thinking its gonna be the same but things have changed we live in a different world. unfortunately there will always be some folk that are ignorant and predjudice but in my view thats there problem not mine .What happened in the early days of hiv/aids was appalling but to be honest i very much doubt anything on such a scale would happen over xmrv. The world is a far more tolerant place now than what it was back then even though it doesnt seem so at times . some of the children I worked with were Hiv pos so I can relate to the issues involved in having such an illness.I actually became ill after being bitten by a child at work not an hiv pos child I may add and I have been ill ever since .

Looking back at early HIV/aids over here I dont remember it being on such a magnitude as it was kept quiet for so long just like CJD mad cow disease . The British government are very good at keeping stum when it suits them.I do remember parents not wanting HIV kids in schools etc but that came much later. For a long time here we were misinformed that this only affected gay men then cjd mad cow disease came along and a similar thing happened . Education is the key and hopefully lessons will have been learned from past experiences but unfortunately some folk will never change like I say thats there problem not mine .

I will be far too busy making up for lost time , for me that outweighs the negatives by a mile .

 

[redo]

Statements from slide #10 standout:

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

We (FDA & NIH) have independently confirmed the Lombardi group findings.

I do not recall having heard the "7% prevalence in the donor supply" figure before.

"...independently confirmed..." speaks for itself.

The number is probably a combined figure for samples who have XMRV and/or related MLVs. So it's likely lower then 7% if the take the related MLVs out of the equation.

 

[taniaaust1]

I think most people on this forum will appreciate the following anecdote:

This morning I was waiting for the train to arrive and talking to someone on the phone about the potential panic regarding the NIH/FDA leak. When I hung up a women with a frightened look came up to me and said "I just heard part of your conversation. What disease is going to make people panic?" I then explained the CFS XMRV connection and blood supply issues. She then looked even more frightened and said "I am a Christian and I was just wondering what plagues are coming down the pike."

To this I replied- "The big one is coming, so tell everyone you know. No one's safe. Be afraid. Be very afraid."

She then wandered off looking very frazzled. I then smiled and enjoyed my ride.

lol that's evil.

i didnt even think of that aspect of things. i myself only this week had a couple of religious people come to my door and tell me there is a big plague on the way. (one of those groups who try to get you to join a church in which you then will be saved) . LOL now i know what to say to get rid of them.

 

[taniaaust1]

LOL! Okay, you have a point. But you must not have been around the under-4 crowd within recent memory. Adorable, but a slobbery bunch, all told. Them and grandmothers, kissing everybody in sight.



Please, please let it not be transmissable in saliva. We really will be doomed then. However, if it is highly transmissable in saliva, we'd be seeing a lot more people XMRV+ than we're seeing now, so I just can't see it as a likely scenario. Yet.



I'm with you there. We know so little. We need research. Lots of research.

Maybe it could be in saliva but only certain genotypes are susceptable to it?? Now that would be scary for people as no one would know if they were susceptable to it or not. I had a ex who used to get sick with his body having to fight something off.. every time i tongue kissed him. (he was okay with kissing others and others have been ok with me.. but obviously something in me, tried to infect him as he was always sick within 12 hrs of that kind of contact with me). Hence i believe im carrying something infectious which only some are susceptable to.