XMRV Buzz - Take a Deep Breath/the Big XMRV Meeting, Singh On XMRV, Sample prep?

[Cort]

Thanks, Alex.

If it's under construction, surely this suggests that a big announcement is imminent and is embargoed? Otherwise I can't see why they'd take it offline at all.

I'm not sure how these things are done in big organisations like this nowadays. Presumably they'd have a central NIH website unit that gets a schedule of jobs and a go-live date, with the unit being provided with the new material by a certain deadline. But it seems odd to take the old info off and leave it looking like a building site (literally!) in the interim. In these days of cut-backs, maybe this just indicates that their web unit is short-staffed.

Maybe I'm just grasping at tea-leaves to read now...

I'm afraid you are Sasha! My understanding is that Dr. Mangan is doing a big overhaul of the website. Nice try, though

 

[Sasha]

There could be something with publication...that is the best way to get the info out to the research community. However, publication policies differ between journals and some of them don't mind if you announce your results.

I'd still be surprised if they had ever intended to publish this as a journal paper rather than as a govt report. Imagine that we're back in the 80s and you, the govt, had set up an investigatory working group consisting of all the authoritative figures in the field, and you'd just discovered that HIV causes AIDS. Would you faff about sending a paper off to some journal for publication? Would you see even a publication in Science or Nature as more authoritative or career-boosting than a govt announcement? I'm having real trouble seeing that.

Is it just me?

 

[Cort]

Needs to be sooner than x-mas!!

I'm surprised that it's now looking like we wont get news from this meeting this week. I thought they were meant to be keeping us informed? Which patient groups were involved that are now keeping quiet? Presumably the WPI were involved, and if there was good evidence of contamination then they'd have stopped selling their test... as it is it seems that quite a few people have received new results this week. If the WPI felt vindicated, would they really be willing to keep quiet about it for long?

Must know. Must know. I can't believe I've been on tenterhooks for so long.

The CAA was definitely at the meeting but so must have been Dr. Mikovits at the WPI. That is a good question- would the WPI either keep selling their tests or alternately would they be able to keep quiet?

There is the unsettling possibility, as well, that nothing was really cleared up - no contamination (good) but no obvious blood storage, etc. issues. On the other hand, Dr. Lipkin is starting his study so that must mean he sees no problems on the sample collection, storage front - something was resolved.

 

[Sasha]

I'm afraid you are Sasha! My understanding is that Dr. Mangan is doing a big overhaul of the website. Nice try, though

Oh well! Finally time to use the baffling "unhappy Scotsman":headache: icon.

 

[Cort]

I'd still be surprised if they had ever intended to publish this as a journal paper rather than as a govt report. Imagine that we're back in the 80s and you, the govt, had set up an investigatory working group consisting of all the authoritative figures in the field, and you'd just discovered that HIV causes AIDS. Would you faff about sending a paper off to some journal for publication? Would you see even a publication in Science or Nature as more authoritative or career-boosting than a govt announcement? I'm having real trouble seeing that.

Is it just me?

I agree - I would be surprised if it was published in a journal. Their goal, as I understand it, is to provide direction to the research community and they should do that as quickly as possible. Release the results! Say - don't do X with XMRV and do Y......what's so difficult?

 

[Cort]

Oh well! Finally time to use the baffling "unhappy Scotsman":headache: icon.

:Sign giggle::Sign giggle::Sign giggle:

 

[Sasha]

:Sign giggle::Sign giggle::Sign giggle:

Actually I've just noticed it's official name is "headache" and now I just feel stupid! Thought that icepack was a Tam O'Shanter! :Retro smile:

 

[George]

Hey Cort that would be awesome if you could pull the quote from Dr. Glinnis(sp?) with a time. Cousre she don't say the info would be released to the patients but Dr. Mangan did say that he wanted the patient community to know he was working for them. I can't see them releasing news this important on a weekend so yet more time will pass on this really big news.

I mean if it turns out the CDC is right( snort, yeah right) then they need to let the patients know so we can go on with organizing for research. If it turns out WPI is right then we need to know so we can organize the mass mooning of the CDC. These kinda things take time ya know. And if the thing is still a head scratched then we need to organize more waiting. ( grins)

So whatcha guys think? No word by say next week Thursday we start writing letters to Mangan, the media and hit Collins and company. Woof up their mailboxes for the holiday????!!!

 

[eric_s]

The waiting is driving me crazy too. Having to wait for the answers that will more or less determine your fate is really a bit much, especially for people like us, who already have had to fight enough.

I like the thought Esther had. If the WPI knew that they have a problem with contamination they could no longer sell their test (through VIP Dx). But we don't see them stop.
But since they and the CAA are involved in the BWG they can't share the result, if they are prohibited from doing that, even if the result was positive for them and us.
Of course all of this is very vague and we need facts not some sort of speculation.

I want to see some serious results that will answer at least some of our questions until the end of the year. I don't care which, Dr. Singh, the BWG, Dr. Lipkin, Dr. Alter, whoever.
Maybe they have a good reason for not sharing the phase II results now, but it's very hard for us.

 

[George]

Yeah but what is the "good" reason?(grins) The entire flipping science community knows, Alter, Lo, Mikovits, holmberge Mangan, Sebblius, Ruscetti's, Lipkin I mean heck everybody knows but us! Well and the general public but I don't think it is a media issue cause it doesn't prove disease causallity just where the scientific stupidity is located.

 

[Esther12]

There is the unsettling possibility, as well, that nothing was really cleared up

*sigh*

It's CFS. It's surely this one.

If there's any way this question could remain unresolved, CFS will find it.

 

[Navid]

Actually I've just noticed it's official name is "headache" and now I just feel stupid! Thought that icepack was a Tam O'Shanter! :Retro smile:

that was sooooo funny, thanks for making me laugh today.....the baffling unhappy scotsman....classic : ):headache::headache::headache::headache::

::Green hat::Green hat::Green hat:...the businessman fresh off the rollercoaster?

 

[Otis]

that was sooooo funny, thanks for making me laugh today.....the baffling unhappy scotsman....classic : ):headache::headache::headache::headache::

::Green hat::Green hat::Green hat:...the businessman fresh off the rollercoaster?

Sasha, your original interpretation was great! And shebacat has nailed the green businessman. Great stuff, I need a little levity today.

Holy cow I'm gonna hurl. Now where's my icepack. Oh, on me head then.

George, if you schedule a little dust-up for next week I'll probably have to join a little late but I'm ALL in.

 

[Cort]

Hey Cort that would be awesome if you could pull the quote from Dr. Glinnis(sp?) with a time. Cousre she don't say the info would be released to the patients but Dr. Mangan did say that he wanted the patient community to know he was working for them. I can't see them releasing news this important on a weekend so yet more time will pass on this really big news.

I mean if it turns out the CDC is right( snort, yeah right) then they need to let the patients know so we can go on with organizing for research. If it turns out WPI is right then we need to know so we can organize the mass mooning of the CDC. These kinda things take time ya know. And if the thing is still a head scratched then we need to organize more waiting. ( grins)

So whatcha guys think? No word by say next week Thursday we start writing letters to Mangan, the media and hit Collins and company. Woof up their mailboxes for the holiday????!!!

Dr. Glynnis at the CFSAC panel Oct 14th 1:45:28

"We hope we'll be able to have results of this ongoing study by early November and it is our plan certainly to immediately release the results because we think they will be extremely important to the scientific community....so that the optimal preparations of the samples will be known."

I have the co-chairs email addresses

 

[eric_s]

Yeah but what is the "good" reason?(grins) The entire flipping science community knows, Alter, Lo, Mikovits, holmberge Mangan, Sebblius, Ruscetti's, Lipkin I mean heck everybody knows but us! Well and the general public but I don't think it is a media issue cause it doesn't prove disease causallity just where the scientific stupidity is located.

The only reason i can think of that seems acceptable to me is "public order", "public safety", however they call it.

If the release would lead to the entire developped world going crazy without governments being able to test, let alone treat people, it's right not to share it now, even though i don't like that sort of thing at all.

It's probably very hard to estimate what event would push things over the line and get the media and public awake.
But if it was now clear that the WPI is right and their results could be taken as fact, we might go in that direction, i don't know.

I want to know everything and now, but i don't want to be responsible for what might happen if the world learns about a possible pandemic at the wrong moment.

I'm still having a cold or flu and am just starting to get back to normal again (which is not perfect either), so it's a bit hard for me to make sense of this situation. I think we need to have some patience but even if they don't release results to us now, they should release a rough timeline at least, when we can get it.

 

[eric_s]

*sigh*

It's CFS. It's surely this one.

If there's any way this question could remain unresolved, CFS will find it.

Lol... or rather :headache::In bed: (this forum is lacking an emoticon for "throwing up")
CFS is just like that... for whatever strange reason. I hope once we really know what CFS is, it will all make more sense. We will have to get there, either way. Even if XMRV is not it (which i don't believe), we have nothing to lose, we will have to push all we can. And some millions of people can push a lot, even if we are not well. It has to stop.

 

[Sasha]

The only reason i can think of that seems acceptable to me is "public order", "public safety", however they call it.

I wish I could feel certain that that was it - because it would mean a cause, treatment, prevention of new cases - but I can also imagine a meeting being called to try to thrash out confusion.

they should release a rough timeline at least, when we can get it.

That's what I would hope for now. If things have turned out to be more complex or catastrophe-implying than they had thought and they need more planning time, I'd like to get a timeline for an announcement at least.

 

[eric_s]

Dr. Glynnis at the CFSAC panel Oct 14th 1:45:28

"We hope we'll be able to have results of this ongoing study by early November and it is our plan certainly to immediately release the results because we think they will be extremely important to the scientific community....so that the optimal preparations of the samples will be known."

I have the co-chairs email addresses

Great. And if he said "scientific community" that does not only involve a selected group, in my understanding, so it means to release the info to anyone. You can't inform all the scientists without letting the public get that info too, i guess.
Certainly they were aware of the situation back then already, when that was said, so i don't see any good reason why the would change their mind now.

Edit: If that was said, i think we can demand a statement wheter that is still valid or not and if so, when the info will be released. And if it's not valid anymore, then what the reason for the change is. (It will be a bit hard to formulate for them, to satisfy us without triggering what they don't want to trigger, but they can do it, they're paid after all or even elected)

 

[pictureofhealth]

I mean if it turns out the CDC is right( snort, yeah right) then they need to let the patients know so we can go on with organizing for research. If it turns out WPI is right then we need to know so we can organize the mass mooning of the CDC. These kinda things take time ya know. And if the thing is still a head scratched then we need to organize more waiting.

Looks like its option 3 for now! We're pretty good at 'organising more waiting' already. Definitely an 'unhappy Scotsman' moment (love it Sasha!)

What if they've discovered the source of the XMRV? It had to come from somewhere. Expect long delays on an announcement if that's the case.

 

[George]

Hey Cort
Awesome! That was fast!

I'm inclined towards a tiny dust up at the start of next week. The reason I say start of next week is cause the week after is Thanksgiving here in the states and a lot of folks will be off with family and friends.

I'll try to hit all the threads where folks have put e-mail address together and try to get a good list together, and Cort I would welcome the ones you have to make that list complete. I'll try to put together a short e-mail that folks can copy and paste and then just press send so that it's not too much for folks who are in a flare right now. Those who want to do up their own that would be awesome! If we can fill up the mail boxes and cause an inconvenience then we will have done our job.

I think, and please jump in anybody if you have other thoughts here, that we ask them for a copy of the protocols that they have come up with to be mailed to the various patient advocacy groups including Co-cure, CAA, ICF, and if someone knows the names of the organization for Britian, Germany, Malta and other points of the globe if you wouldn't mind sending those to me I'll include them in the letter (so please send a e-mail address for any organizations).

If it truly is option three that they are no closer to the answer then absolutely, eric_s a timel ine is in order. If the protocols have been worked out then we respectfully request that those be made available to our advocacy organization for validation to the patient community.

The Phase II portion is only about the correct protocols in order to get everyone on the same page. A lot of groups will try to develop "novel" assays in the beginning because of patent rights as well as bragging rights. But once there is a link established with illness then letting folks play looks bad. So there is no "public safety" or panic problems with this stage of the work. There is nothing that would show causality in the protocols. What we get is the ablity to check and see who was right and where the problem lies. This gives us the ability to check future studys for accuracy as well.

Nowwwww Phase III when they start testing blood supply, yeah, I don't expect to ever see those results. (grins) More likely when they give "the big" press conference all we'll ever hear is that any blood product that tested positive has been removed. (big grins)

But all we are asking for is Phase II protocols be released to our patient advocacy groups and that those groups make them available to the patient population. We can compare them ourselves to the work that has been done already.