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From the 1st annual XMRV conference

Sasha

Fine, thank you
Messages
17,863
Location
UK
P.S. Please remember to be conscientous about reporting posts that are in violation of forum rules. It will help us all keep things tidy. :Retro smile:

Yup - hit the black triangle to the right of "blog this post" to report a post. The forum rules are now easily visible at the top of every forum page (between the "what's new" and "donate" tabs.

This is a hugely popular thread, and those who are easily stressed by arguments want to read it and have that right.
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
Does anybody have any idea when we might hear the results of the MLV/CFS stuff presented this afternoon, e.g. the Mikovits UK study? Our Cleveland Clinic tweeter appears to have shut down for now, which suggests that he/she might be obeying some sort of publication embargo but if so, how soon is that embargo likely to be officially over? Do we have to wait for each study to be published in a journal (months! argh! argh!) or are the press who are there (e.g. Mindy) likely to be allowed to report on it, or are they likely to release a formal press release at the end of the conference with some sort of agreed overview? Do we have any info on this?

Am going nuts here in the UK waiting to hear some news that might finally help us!

(big grins) I know makes me crazy too. Only two hours till the video cast. Hopefully we will finde out then. Good news is that with all the "black outs" they must have a lot of really good stuff!
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I really want to hear more about this urine testing.

Yes, I think that's really interesting - a while ago people were worrying that we might need spinal taps or something to detect XMRV. I'd much rather pee in a cup! :Retro smile:
 

SOC

Senior Member
Messages
7,849
That's so sweet. I think it may be too late though. So when the tweets start back up I'll start a new thread. No problem just takes a sec. And we may not get much more anyhow. Only two hours till the video cast.

Good idea. A new one about the video cast would be helpful.

I think we got a bit bored waiting and slipped into off-topic chatter. Better to start a new thread for the chatter. :ashamed:

Durned ME/CFS brain -- loses focus at every opportunity. **sigh**
 

Otis

Señor Mumbler
Messages
1,117
Location
USA
(big grins) I know makes me crazy too. Only two hours till the video cast. Hopefully we will finde out then. Good news is that with all the "black outs" they must have a lot of really good stuff!

Er, 3 more hours I think.
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
I gotta go for an XMR-Pee.

Awww...jeez....that was a bad one.

LOL, I thought it was pretty good better than an MLV-pee or a Pee-MLV or maybe an HGR-pee or an HMR-pee. (snicker grins)

Hey if anyone needs the web address for the video cast here it is. Only like 3 hours till.

http://videocast.nih.gov/

It's the fourth one down and there is a clock at the top so you can count down.
 

SOC

Senior Member
Messages
7,849
Yup - hit the black triangle to the right of "blog this post" to report a post. The forum rules are now easily visible at the top of every forum page (between the "what's new" and "donate" tabs.

This is a hugely popular thread, and those who are easily stressed by arguments want to read it and have that right.

You go, girl!

I agree, this is a thread many people will want to read and they shouldn't have to put up with arguments and snarkiness just to get the info. The arguments, if civil, can take place on another thread. We all may need to be reminded about that every now and then, though. :ashamed:
 

SOC

Senior Member
Messages
7,849
LOL, I thought it was pretty good better than an MLV-pee or a Pee-MLV or maybe an HGR-pee or an HMR-pee. (snicker grins)

Hey if anyone needs the web address for the video cast here it is. Only like 3 hours till.

http://videocast.nih.gov/

It's the fourth one down and there is a clock at the top so you can count down.

Thanks for the link, George! This looks like a good time to take a nap! Meep. Purrrrr.
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
YEAHHHHHH!!!!!

from CC
Mikovits says her research on UK patients was just unblinded & she’s working on a manuscript for publication w/more details #XMRV #MECFS

ClevelandClinic More Mikovits: she’s confirmed #XMRV in CFS patients in UK population (previous studies didn’t find the retrovirus in UK patients) #MECFS
 

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
Hi everyone, exciting stuff. :D

Please excuse me for interrupting the flow of science to emphasise what I feel is an absolutely vital point from xrayspex...at the risk of preaching to the converted...

well they said people could send in greivances etc Should we send in that concern about Fauci, because weren't they saying at that meeting that Straus and Fauci had worked on behalf of CFS? I imagine those guys don't know the history, the govmt guys at the meeting yesterday. I want to make sure Collins knows.....what I can't figure out is if its better for us to highlight the past to them or let it slide....

My answer is: having been invited to send in grievances, send in those grievances! Yes of course: lay it all out. That's not to say that the fears over Fauci's involvement should necessarily be cause for concern, I'd echo Cort's positive assessment of that situation. But this is the time to register all concerns. As I may have said before, remain calm, speak the truth...etc - just tell it like it is.

.one thought is how sometimes its good to give people an out if you want things to change.

Very, very important point. Being in a situation where the consensus you need demands that a whole load of people commit a 180 degree turn and recognise and admit that they were wrong...my advice would be that this is not going to happen very quickly if you are telling them that as soon as they do admit they were wrong they are going to be crucified.

This seems to me to be a point that a few people still haven't grasped. If you surround people and back them into a corner, and give them no way out, then don't be surprised when with nowhere to go, they don't move.

So register the concerns regarding Fauci and whoever else, lay out the facts, register that there is concern, explain why, calmly, and don't go on to add that you demand his head on a stick - leave that part up to others to resolve.

That all applies on every level; it applies with family and friends too
. Sadly, once it is established that the theory (I emphasise, theory) of psychosomatisation was wrong in this case, those who embraced or entertained that concept - which includes the vast, vast majority of people - are still going to say "well it could have been true...you can't blame me for being uncertain". Others will say "well those people weren't psychosomatising, but we still don't know about all these people over here".

The way forward is not to concentrate on the blame game, but to concentrate on the philosophical and ethical problem with an unfalsifiable premise: dust off your Popper and explain why there are some questions that simply should not be accepted as legitimate hypotheses. Explain why to imagine that you can peer into somebody else's mind (us), or their soul (them), and thus to cast doubt on the integrity of another's reality, is simply a widespread human error that we all need to learn, together, to put an end to. There are big, big lessons here for everyone to learn.
 

Sam Carter

Guest
Messages
435
Sam, I think I can answer your questions, but you fired that one off quite abruptly...
Is there any chance of you rephrasing your post in the form of a question, so that I know exactly what's on your mind?
Much of what you ask has already been covered many many times on the forum.
Also, you have quoted me out of context... I gave some reasons, for what I said, in the post that you extracted my quote from.

Hi Bob,

Sorry - my post wasn't meant to be abrupt or directed at you. (PR is running slow tonight.)

I don't like to see researchers (proper hard-science researchers) dismissed on ideological grounds.

I may have a few words to say to Sunshine on this issue later.

Sam