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

[natasa778]

What drives me crazy is they still don't know where the main reservoir for the virus is located

My bet is on endothelial cells/tissue of any kind, and especially vascular epithelium.

Anyone fancies being a bookie here?

We could place bets (in the style of fantasy football league - ie create your own winning xmrv theories), whatever pans out say in 18 months time... whoever wins all proceeds still go to WPI. :Retro smile:

 

[redo]

Hi Redo

It is highly unlikely that lymphoma causes XMRV - this is backwards; XMRV could cause lymphoma, not the other way around, which means that treating XMRV might prevent lymphoma.

Bye
Alex

I put them in the wrong order. I saw it after I posted, but I didn't bother to go in and correct it as the discussion went on about something else.

 

[free at last]

I want to belive this is true, can anyone say yes they are sure a OFFICIAL NIH paper is coming ? I recently wrote my views about goverment involvement and that they will never tell the truth unless they have no choice, and that its more about damage control than sickness control. I dont like rumours even hard core ones like this. But i so want to be wrong about my damage control ideas, But untill a OFFICIAL paper is there in black and white i keep thinking something is going to go wrong ( doesnt it always ) who can say to me yes this it it, this will be confirmed now, anyone ? im hoping someone does. One thing that struck me as odd is Dr Alters apparent quote The science paper is very strong and LIKELY true ?
Very strange word that LIKELY from a guy who apparently according to two jounalists has confirmed the science in CFS XMRV association, and healthy population figures of between 3 and 7%

Quite a wild difference 3 and 7%
Al previouse estimates ( i may be wrong about this please correct me if i am )
had just one figure
WPI, the japan figure, and the german figure all stated the % of controls tested ?

But according to the jounalists who report this Dr Alter can not seem to tell if its 3 or 7% of the controls he surely would have tested to get a figure in the first place ?
These points strike me as extremly odd. whats going on whats the truth
Is this for real or what As Mulder would say I WANT TO BELIVE

 

[jspotila]

I know this is may be a bit OTT, but if it was so transmissible, would it be conceivable that a quarantine order may come into effect?

It is way too early to speculate on this. The only path of transmission proven is blood to blood transmission, and that has only been shown in the lab. Others have noted before that the CFS incidence pattern does not fit with an STD or respiratory pattern.

All of this makes me want to learn more about Hepatitis C. Any experts here? Hep C was originally thought to be an STD, and it is asymptomatic for years before liver damage begins. Now it is thought to be blood transmissible, and 20 years after its discovery there is still no vaccine. Dr. Michael Houghton, one of the discoverers of Hep C, is a new member of the CFSAC.

 

[bullybeef]

Thanks for the responses Alex/jspotila,

Obviously just another hypothetical query. Obviously this outcome would be a worse case scenario, but we are moving into unprecedented territory, and there are so many possibilities.

 

[Jenny]

It is way too early to speculate on this. The only path of transmission proven is blood to blood transmission, and that has only been shown in the lab. Others have noted before that the CFS incidence pattern does not fit with an STD or respiratory pattern.

All of this makes me want to learn more about Hepatitis C. Any experts here? Hep C was originally thought to be an STD, and it is asymptomatic for years before liver damage begins. Now it is thought to be blood transmissible, and 20 years after its discovery there is still no vaccine. Dr. Michael Houghton, one of the discoverers of Hep C, is a new member of the CFSAC.

My husband has Hep C - has had it probably for over 20 years, and had a liver transplant 2 years ago. Has no idea how he got it. The current thinking on transmission seems to be that it's mainly blood to blood (so patients are told not to share toothbrushes or razors). It's unlikely to be transmitted via saliva or sex (although patients are advised to use protection with sexual partners).

Jenny

 

[ukxmrv]

Sunnygal,

I am XMRV+ and had no physical or emotional stress leading up to my acute onset. This means for some of us, that cortisol may have been low or normal. My cortisol is low now and there is no evidence that it was ever high. No emotional stress that would have raised it.

A virus came out of the blue, hit me and I have never been the same. Arguing about a hypothetical high cortisol may be pointless when the facts don't support it.

If I can get ill with this virus with no obvious trigger then maybe others can.

 

[coxy]

I agree ukxmrv+,

My 2 children got ill completely out of the blue with acute onset, never having been ill children before that, no undue stress etc. It seems a coinsidence that they both got ill at age 8.5yrs.
I got ill after them both, mine could of been helped along by stress of course, having to children with me/cfs is very stressful, although i to had an acute onset after a flu virus.

 

[Sasha]

Very strange word that LIKELY from a guy who apparently according to two jounalists has confirmed the science in CFS XMRV association, and healthy population figures of between 3 and 7%

Quite a wild difference 3 and 7%
Al previouse estimates ( i may be wrong about this please correct me if i am )
had just one figure
WPI, the japan figure, and the german figure all stated the % of controls tested ?

But according to the jounalists who report this Dr Alter can not seem to tell if its 3 or 7% of the controls he surely would have tested to get a figure in the first place ?
These points strike me as extremly odd. whats going on whats the truth
Is this for real or what As Mulder would say I WANT TO BELIVE

Hi, free at last - I think it's likely that the "3 to 7%" indicates the range within which Alter estimates the population prevalence of XMRV to be, based on the sample of bloods (presumably from the US blood bank or somewhere) that his team must have tested.

When scientists test a sample of the population (e.g. 1,000 blood samples out of a US population of 200 million), and find say, 5% of their sample is, say, XMRV+, it's only an indication of the true figure in the population. The sample is too small to be an accurate indication. They use a statistical formula based on sample size to give what is usually a "95% confidence interval" around the study estimate to indicate the likely population value. E.g. their study sample shows 5% prevalence but there's a 95% probability that the true value in the population lies between 3 and 7% rather than outside those limits. The single figures quoted in other studies will just be the % XMRV found in the study populations.

This is my interpretation of a range of values being given, and it's normal practice. Won't know for sure without more detail, of course.

I agree it's very frustrating to have to wait for official confirmation! I'd like to wait for that before I go to my doctor with the information.

 

[floydguy]

Sean, from what I have heard from other patients, and my own experience, most of us have lower than normal cortisol after getting the disease.

Also, since testing is usually not done until after the person is ill, and by the way, the fatigue must be over six months to get a diagnosis, then of course there is not way of knowing whether the people had insreased cortisol. I am afraid all we have is anecdotal evidence.

I can say for me, stress was and is a factor. I do not believe it is caused by stress, but as Mikovits said, cortisol does make it rev up. That makes sense with the push and crash cycle. Plus, my symptoms (headache and nausea) are worse in times of stress.

Of course, I think co-infections may play a role, androgen hormone fluctuations and other factors may be the trigger in some people. I thin for many of us, it is a combination of these triggers that may have pushed us over the edge, or down into the labyrinth, as it were.

Tina

In my case cortisol levels have been consistently high for over 6 years. I think the important point is the dysregulation - not whether it's high or low.

 

[free at last]

Thanks for that Sasha, I agree that must be the explanation for the different figures

But still feel if there studys confimed the WPI findings that saying the science paper is very strong and LIKELY TRUE doesnt sound too sure to me ?

Which of course is odd if they have just confimed the findings themselves ? I know im nit picking, but i guess im worried this will turn out to have a problem of some sort. Just dont like the word likely in this qoute when apparently they should be sure through there own confimation.

Im surprised others havent been bothered by this seeming very uncertain wording. It may be nothing i agree.

 

[Esther12]

Champing at the bit for official confirmation now. (I think that in my last post I said that I was coming to terms with what is likely to be a long wait - that ws a lie.)

I've been spending too much time on line since this news, and it's really got my head pounding. I've also got some household stuff that needs doing, and I should really be prioritising that right now. Curse my feeble will-power.

 

[Eric Johnson from I&I]

> Just dont like the word likely in this qoute when apparently they should be sure through there own confimation

That might be just scientific humility. He may be expressing the point of view that he thinks he can realistically urge on the audience, not his own point of view. From his point of view, work done by people he knows well, or by his own hands, may have special force. From the point of view of some random guy in the audience, it doesn't, especially because most of the audience is probably less informed about all this than he is. The random guy just sees that there are X reports for the hypothesis and Y against, and probably hasn't read them all 3 times, or even once. Ruscetti has probably read and thought through them all 10 times, and Alter may have also read them all a few times.

 

[Eric Johnson from I&I]

Even the very guy at FDA who did everything with his own hands might not be quite 100% convinced yet. After all, there are still those 5 negative reports. In science, you need credibility. So if something is a point of contention, you generally wouldn't want to shout from the rooftops that it's an absolute fact even if you are 95% convinced. If you turn out to be wrong, people will remember.

 

[jeffrez]

I recently wrote my views about goverment involvement and that they will never tell the truth unless they have no choice, and that its more about damage control than sickness control. I dont like rumours even hard core ones like this. But i so want to be wrong about my damage control ideas, But untill a OFFICIAL paper is there in black and white i keep thinking something is going to go wrong ( doesnt it always ) who can say to me yes this it it, this will be confirmed now, anyone ? im hoping someone does. One thing that struck me as odd is Dr Alters apparent quote The science paper is very strong and LIKELY true ?
Very strange word that LIKELY from a guy who apparently according to two jounalists has confirmed the science in CFS XMRV association, and healthy population figures of between 3 and 7%

There is nothing strange in that at all. That's just how scientists speak. Nothing has been definitively proved, so he's just showing the proper restraint in saying that it appears likely.

Quite a wild difference 3 and 7%
Al previouse estimates ( i may be wrong about this please correct me if i am )
had just one figure
WPI, the japan figure, and the german figure all stated the % of controls tested ?

But according to the jounalists who report this Dr Alter can not seem to tell if its 3 or 7% of the controls he surely would have tested to get a figure in the first place ?
These points strike me as extremly odd. whats going on whats the truth
Is this for real or what As Mulder would say I WANT TO BELIVE

Again, nothing is odd at all. We just have to be patient and wait for the NIH paper. From what we've heard, the NIH findings and the findings of the FDA, if those are ever published, will provide some verification of the WPI paper, and then the science will proceed from there. Undoubtedly there will be more studies after NIH showing no association again, and the methodology, methods and techniques will be refined as the debate continues until we know for sure what is going on. That could take months or even years. Until then, no one really knows what is going on with any certainty.

 

[Daffodil]

stone.....i think the new antibody test would pick up whether the baby has been exposed to the virus or not.

george..i had NO idea ruscetti was talking about XMRV needing to combine with other viral proteins. this would make a lot of sense since most of us got ill after herpes viral infection.

what is interesting is, acyclovir brought my RNase L down to nearly normal and i know the drug doesn't affect XMRV..so i have to wonder whether it was doing something with the EBV proteins (my EBV did not register as being active).

i wonder if adding acyclovir to the drug regimen would help?

sue

 

[judderwocky]

exactly... statistical intepretation helps one determine probability of correlation... its never 100%... and scientists are very careful never to claim more than they can mathematically prove. the accepted cut off is about 95% for most good scientific work... and pretty much authorizes a person to use words like "likely" ... especially if they are corraborating other labs with similar conclusions and methodologies... they're not going to exceed this though and say "we know with absolute certainty" ... because they don't. it isn't 100% certain, its just "likely"...

this might sound like being overly cautious... but take something like einstein's theory of relativity. Its used in HEP labs all time to calculate mass... its an everyday use item in all high energy physics... and yet... its still referred to as a "theory".... functionally it may be treated as fact, but its still acknolwedged that there is uncertainty about its ramifications and range of use....

 

[bullybeef]

One thing to also understand is this NIH/FDA paper may have been submitted months ago. It took from May until October for the Science paper to be peer reviewed, and published. If fact the WPI had their XMRV/ME eureka moment in January '09! If it this paper is due any day, the NIH/FDA may have known of their results since as far back as January!!

And that could mean new studies and results could be in still in the hands on the researchers now, still awaiting to be submitted, never mind published.

 

[free at last]

Thanks Eric And mr Kite, thats put my mind at rest, I see your points, and makes sense.Just waiting for the paper to be released then it seems

 

[Navid]

I know this is may be a bit OTT, but if it was so transmissible, would it be conceivable that a quarantine order may come into effect?

maybe not OTT but definitely ODD...they never quarantined HIV patients why would u think they would quarantine xmrv pt?:innocent1:::Retro smile: