WHERE ARE THE FDA AND NIH XMRV STUDIES? 5 August 2010 - It is TIME

[Robyn]

Center for Disease Control, Well they sure have controlled this disease huh? Exactly how they wanted for 25 or so years. Let's hope their run at controlling it has come to an end.

 

[SOC]

10 August 2010.

By mid-August, we will say 17 August as SickofCFS noted, if those documents are not out there must be a war of epic proportions.

Too much time has elapsed, for whatever reasons they give.

Based on what PNAS said (according to Mindy, who I think is very reliable), I think it could still be as long as a month before we see the paper. "In press" is a bit vague. I think that traditionally it means "with the publisher", which could mean there's still work (but not research or writing) to be done before it's made into a hard-copy journal. I wouldn't get too wound up until mid-Sep, but that's just me. :Retro smile:

My best guess, though, is that we'll see it between 17Aug and 7Sep. [crossing fingers]

I really don't care what those reasons are - those papers were ready for publication and in galleys ready to go. So, where the hell are those studies?

Yeah, the paper was in galleys in early June, but thanks to the CDC (bless their nasty little hearts) that all went out the window. The paper had to be revised and reviewed and NEW galleys had to be made and reviewed, blah, blah, blah. It takes a couple of months. I have no doubt somebody at the CDC knew d@mned well that calling question at that point would delay the paper this long.

Writing to Frieden at the CDC about WTH they're doing with ME/CFS/XMRV -- that sounds like a great idea!

 

[muffin]

SickofCFS Said:
"Writing to Frieden at the CDC about WTH they're doing with ME/CFS/XMRV -- that sounds like a great idea!"

I don't know if it is a good idea, if he reads his emails, if he even KNOWS what is and has gone on with the CDC program. But, I figured I was doing HIM a huge favor by telling him to get the CDC to come clean on its own before we and media do it for them and then the damage will be out of control and credibility for the CDC gone for the next decade. I was being kind, actually - and truthful. Come clean on your own or we do it for you and that's not good.
'
Email these people. Fill up their mailboxes. Pound on them so that they know we are here and not going anywhere. I hope Freiden responds. I really hope he uses his brain and finds out what is going on with CFS at the CDC and does force clean up and come clean. We shall see.

 

[muffin]

SEE MINDY KITEI'S POST: "IT'S OFFICIAL" - FDA/NIH PAPER in PRESS, by Mindy Kitei

Mindy Kitei
FDA/NIH PAPER in PRESS, by Mindy Kitei
It's official.

Mindy Kitei
CFS Central
http://www.cfscentral.com

 

[Grishnkh]

Why would I have inside information? And if I did have it, it would stay that way. I am just connecting the dots in concluding that the Lo/Alter paper will never be published in a manner that replicates/validates the WPI Oct. 2009 Science article.

The folks with inside information are people like Dr. Monroe at CDC. See what he has to say about the XMRV/CFS connection on Mindy Kitei's blog:

http://www.cfscentral.com/

These are the words of a bureaucrat that knows the Lo/Alter paper has been spiked (OK, in my humble opinion). He appears to be enjoying the dismay of the CFS community and thinks he is being cute by toying with Ms. Kitei and providing non-answers to her questions.

He says CDC has found XMRV in prostate cancer patients and is about to publish this research in order to establish that the recent zero/zero CDC/CFS article is valid.

If the CDC is about to publish yet another CDC/XMRV paper, don't you think the top dogs at the NIH would have let them know the assays they are using are bogus? This is all being managed at top government levels, don't you think? And the top government levels surely know what is going on with the Lo/Alter paper, at least by now. They are not going to keep shoveling coal in the boiler room if they know the front cars of the train have jumped the track. Use some logic. And logic will tell you that the Lo/Alter paper has been de-fanged.

And when it comes to XMRV studies, Klimas is almost finished with her study of Gulf War patients and XMRV, so NIH may be running damage control and working the timing on that.
http://www.veteranstoday.com/2010/07/16/will-gulf-war-veterans-be-tested-for-xmrv/



If this Klimas work comes up with even a hint of a Gulf War Syndrome/XMRV connection, it will light a match under the bonfire. Until now, CFS patients have been disorganized and very easy to marginalize. It will be much harder to convince the general public that war vets are a bunch of sissy hysterical neurotics.

Personally, I don't care about the criticisms from sick and unhappy patients here, and I don't relish robbing anyone of hope. I am merely keeping my ear to the ground, and my take is that things are about to get ugly in terms of the XMRV/CFS/ME connection. My main point is, instead of preparing for a big celebration party, there should be a coordinated plan B just in case I am correct.

Would you be saying all this if you had tested positive for XMRV? Not just this but every other post you have made lately.

 

[V99]

That was not an appropriate comment. Also XMRV testing is still experimental.

 

[Grishnkh]

Negative attitudes towards the validity of the causation of XMRV in ME aren't very nice either considering many people's lives depend on it. Levi is one person on a forum belittling hope of many.

I am not insinuating Levi is XMRV- I am asking whether his posts would be of the same opinion if he/she had tested positive for the virus.

 

[Levi]

Truth

Grishnkh;110017,

That's a fair comment/question. If I was XMRV+, I would probably be even more vigilant and reactive about possible treachery from the CDC. Look at their latest psych tome, it is viscious and downright mean and contemptuous of CFS/ME patients, even for them. I don't trust them and have seen them snatch victories from the outreached arms of the CFS community time and time again over the decades. You count your chickens before they are hatched with the CDC at your own peril.

Since I have deleted most of the hundreds of other PR posts I made here from last year, it is forgivable to think I am trying to rain on CFS/ME patients parade if you look at my recent posts. There have been many discussions on PR about the possible coming "split" of the patients into XAND and "Reeves Disease" populations, and now would be as good a time as any to get IN FRONT of those issues. So your criticism of me will be a good thing if folks are inspired to face that problem in an organized and productive fashion. NOW.

My position is that all patients with unexplained illnesses should have the presumption of sanity legally bestowed upon them, albeit only a rebuttable presumption. G.P.'s and M.D.'s should not be allowed to escape their duties by labeling patients with a personality disorder and discarding them just because they have no easy explanation for symptoms.

If Y'all are right and XMRV is found in 80% (is that the latest?) of CFS patients, then that means 80% of all CFS patients will NO LONGER fit ANY existing definition of CFS, which REQUIRES the the illness be completely unexplained by definition, i.e., it is invariably a diagnosis of exclusion. Since ME has been destoyed as a distinct illness entity by the weasel and associates, and there are no clear ME cohorts to study, it will be a confused mess to sort things out.

And that is the CDC's element, playing one group off another, muddying the waters, thriving on demonically inspired confusion. You think your problems are over now, but even if you are right, the existing problems you face are merely being traded one for another. That should cheer you up.

Negative attitudes towards the validity of the causation of XMRV in ME aren't very nice either considering many people's lives depend on it. Levi is one person on a forum belittling hope of many.

I am not insinuating Levi is XMRV- I am asking whether his posts would be of the same opinion if he/she had tested positive for the virus.

 

[Megan]

Mindy Kitei
FDA/NIH PAPER in PRESS, by Mindy Kitei
It's official.

Mindy Kitei
CFS Central
http://www.cfscentral.com

Thank you Mindy! Good to hear from PNAS on this, I think.

By my calculations, if the paper is not out by the 31st August it will be too late for for the XMRV conference on 7th/8th September. I would think this would have a real impact on us in terms of slowing down the science. From this perspective it is disturbing that he says he does not know when it will be published.

If it comes out after that, it will look as though this was designed to happen. Surely the editor could have provided this reassurance?

Once again, I say if pressure is to go anywhere, it is to go on to PNAS to get the publication out PRIOR to the XMRV conference.