FDA/NIH PAPER in PRESS, by Mindy Kitei

[Robyn]

If they at least say they found positives of a relevant degree. I would be happy with that. I think it could be highly possible they might change some wording in regards to the blood supply to avoid panic.

 

[VillageLife]

heheh someone is excited...

Its a sad day that im this excited about a retrovirus! .......I guess its justice.:Retro smile:

 

[anciendaze]

Maybe we should add "excessive heartrate response to publication of scientific papers about a retrovirus" to the list of symptoms.

 

[SOC]

Sickofcfs,

Here is the part of the leaked ORTHO press release from the Zagreb conference that is relevant:
http://www.mmdnewswire.com/xmrv-9040.html

I expect this statement, or any semblance of it, to be disappeared. Literal or not. As far as the data presented, I honestly do not know what to expect. But you may have bragging rights and I will officially eat my words if the data presented by the Lo/Alter paper meaningfully contradict the latest CDC XMRV "research" paper.

Without sounding like a killjoy, I would only note that this appears to be the second time this article has been "in press", and that the evil minions at the Centers for Demonic Control (of ME patients) would certainly relish the event of yet another last minute intervention by those at the highest levels of DHHS. Do you really want to invite a jinxing on the cosmic level here?

Okay. Sounds entirely fair. :Retro smile: One gets bragging rights, one eats her/his words. If it's debateable (which seems unlikely) we take a vote in the forum as to whether the paper fails your criteria, okay?

I admit I am inviting cosmic level jinxing, but WTH.

 

[SOC]

Maybe we should add "excessive heartrate response to publication of scientific papers about a retrovirus" to the list of symptoms.

LOL!

Assuming this comes off, it's going to be the lowest key massive celebration in history. Or maybe we will have people leaping from their wheelchairs and dancing in the streets.

 

[leelaplay]

What do I want to see to celebrate? These points from the Alter presentation slide from the Zagreb blood safety conference

The data in the Lombardi, et al. Science manuscript are extremely strong and likely true, despite the controversy.

The association with CFS [Chronic Fatigue Syndrome] is very strong, but causality not proved.

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.

-----------------------------------------
Dr. Alters Comments on the Agent Du Jour XMRV at Zagreb Blood Conference

June 23, 2010

Pdfs of presentation slides from the IPFA/PEI Workshop on Surveillance and Screening of Blood Borne Pathogens (Zagreb, Croatia, May 26-27, 2010) are posted at the Workshop site.

As famously noted June 22 by reporters for the Dutch publication ORTHO, the following is found on page 10 of NIH virologist Dr. Harvy Alters slide pack (Presentation 1, Session 4, Day 1):

"Comments on the Agent Du Jour - XMRV

The data in the Lombardi, et al. Science manuscript are extremely strong and likely true, despite the controversy.

Not only have they detected gag and envelope XMRV sequences, but they have infected prostate cell lines and recovered gamma retrovirus particles and have transmitted XMRV to rhesus macaques by the IV route and demonstrated infectivity.

Although blood transmission to humans has not been proved, it is probable.

The association with CFS [Chronic Fatigue Syndrome] is very strong, but causality not proved.

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.

Importantly, Dr. Alter is about as illustrious and respected as they come. Like most of the 'invisible illness' world, we Googled him & found a Wikipedia page (Harvey J. Alter - Wikipedia, the free encyclopedia) noting he is best known for his work leading to discovery of the hepatitis C virus.

See also a presentation on XMRV & blood safety by Roger Y Dodd, PhD, director of the American Red Crosss Holland Lab in Rockville, Maryland. Dr. Dodds contribution titled Xenotropic Murine Leukemia virus (XMLV) Related virus and retrovirus diversity: Implications for blood safety is listed as Presentation 1, Session 3, Day 1. :He summarizes XMRV knowledge so far as follows:

"Summary

ERVs represent a complex and confusing field with many controversial observations (Human rumor viruses)

XMRV is a recently identified gamma retrovirus infecting humans but apparently of mouse origin

Associated with some, but not all cases of prostate cancer and CFS

Variable expression (up to several percent) in normal controls

Theoretically transmissible by transfusion

Significance unclear, but obvious regulatory and public concerns

 

[leaves]

Okay. Sounds entirely fair. :Retro smile: One gets bragging rights, one eats her/his words. If it's debateable (which seems unlikely) we take a vote in the forum as to whether the paper fails your criteria, okay?

I admit I am inviting cosmic level jinxing, but WTH.

Good idea!! (I can be bribed)

 

[V99]

If anyone wants me to do a leap for them the day this come out, it can be arranged

 

[Levi]

Sickofcfs,

Why waste the opportunity? If you guys REALLY want to invite cosmic level jinxing, then organize a PNAS release demonstration in front of CDC headquarters along the lines of THIS:

http://www.flickr.com/photos/ficken/1813744832/sizes/m/in/photostream/

And don't forget to invite the press . . .

I admit I am inviting cosmic level jinxing, but WTH.

 

[V99]

You could release a load of balloons with the words 'CDC was wrong about CFS" on them.

 

[VillageLife]

You could release a load of balloons with the words 'CDC was wrong about CFS" on them.

I really hope this paper makes the newspapers!

 

[meadowlark]

I have just breathed the deepest sigh of relief of my life. That means I have an awful lot to thank you for, Mindy. The anxiety about 'if' and 'when' has been like Chinese water torture. And I can live with not knowing the exact "when," as long as I know that it's near.

Keep after the "forgetful" Dr. Monroe. It's superb that you refuse to go away.

 

[Eric Johnson from I&I]

So, Early Edition is only on weekdays, and it looks like there is a particularly large amount of stuff on Mondays.

Anyone know if Early Edition comes out at a regular time of day?

 

[V99]

Me too. If the result's haven't been tampered with, it will. Everywhere

 

[Eric Johnson from I&I]

OK, I got it. PNAS says: "PNAS publishes new content online daily at 3 PM Eastern time." So yes, it appears that what we're looking for is a 3pm thing.

 

[pictureofhealth]

Thanks for staying on the case Mindy - its MUCH appreciated!

George had the closest guess if I remember correctly (I think he suggested 3rd week in August). If he's right then Wow - how does he know these things?!!

 

[urbantravels]

I think George might have had the 24th as his guess, if I recall correctly.

 

[RustyJ]

It is likely that Alter will say many so-called CFS patients have XMRV and were misdiagnosed as CFS - they never did have CFS. Perhaps there will even be a few tut tuts and mentions of tragic injustices to people who are very ill. This seems to be the way the CDC new statement on CFS is shaping up. This will ensure that the CDC remains untarnished and actually exonerated. It will be a very pyrrhic victory for us. How does this then affect the pool? Is this what Levi was getting at?

Every day that passes it become more apparent that if you carve out 80% of the existing CFS population you need a new name for those taken out. ME is too tarnished with CFS baggage. Did WPI foresee this day way back last year when they first coined the term XAND?

In a few years time the general public (with gold fish-like mentality) will become aware of the disease XMRV, and forget that these people were once labelled as CFS. Sadly the remaining non XMRV people, being a much smaller group, will be forever tarnished with the baggage of the last few decades.

And how does the CDC justify budgeting for just 20% under a dubious label of 'unrecognised psychological disorder', particularly when some of that 20% could have other RVs?

PS. Are you sure George is a guy?

 

[Cloud]

You bring up an interesting question, Cloud. What do people consider needs to be true about this paper for it to be worthy of celebration? Does it need to reference WPI directly? Does it need to show a correlation between XMRV and ME/CFS? Does it need to find XMRV in a specific percentage of ME/CFS patients?

What do we think is the minimum condition which allows us to celebrate?

Well, my first thought is.....Who even needs a reason to celebrate anyhow. Lets party! LOl, but yea what Levi and Shrewsbury said.

 

[urbantravels]

I'm sorry, is George a she? I dunno what anybody is around here ... pictures of leaves, birds, dogs...I'm new:innocent1: