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CDC replication study delayed in order to prepare a press release?!

Esther12

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Actually - some of the possibilities Mark raises could require a delicate press release.

What if XMRV was found in 5% of the population, but not to a greater degree for CFS patients? They'd be announcing 5% of people had a retro-virus doing unknown damage, and with unknown transmission. They wouldn't have been able to take action with blood supply at that point because it's not really practical to start testing every donor (is it?).

Maybe it's an even more messy result, with them finding something similar to XMRV?

There are all sorts of possibilities at this point. It could well be that they're going to validate the WPI's findings entirely, but my grumpy gut is still saying otherwise.
 

rebecca1995

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hopefully this is the upcoming positive study (one negative, the huber one, and one positive) which Klimas mentioned a week or so ago
thought that Klimas also said on the recent conference that it would be just a matter of time and then they could start with antiretroviral trials.
so I dunno what Klimas knows, but she must have had some good reason to say these things
Riv...this was my original reasoning, as well! Huber = negative, CDC = positive. But if the CDC study did find XMRV in ME/CFS--to a greater or lesser degree--why didn't Unger mention XMRV even once during her CFSAC presentation?

And won't Jerry Holmberg look like a fool for stonewalling at CFSAC, if it comes out that he was privy to positive CDC results?

I don't know...I'm worried now. :worried:

I think I'm gonna pass out... I can't cope with the anticipation! *Deep Breaths*
Hey Bob...when you're finished breathing into the paper bag, pass it over to me, would you? Although this light-headedness is sort of...nice.... :Retro wink:
 
R

Robin

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This isn't the HHS working group study, is it? It's just the CDC study with their phone-cohort, right? Do we know anything about what test they used?
 

bullybeef

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The following was posted elsewhere, but is pretty relevant here too:

http://www.hhs.gov/advcomcfs/meetings/presentations/cfsac_testimony_5_10_2010_anonymous_1.pdf

So in conclusion, I believe there are a number of things which can be immediately implemented or started, even as we wait for further confirmatory evidence of the Whittemore Peterson Institute's findings linking XMRV with the vast majority of CFS-ME patients, and possibly autism in the USA. It is possible that between 5 and 10% of the USA or North American population may be already infected. This is a very real disease, with very real and often dire consequences whether it hits an adult or an infant. It has to be stopped, and it has to be stopped now. I hope the concerns I raise and potential recommendations made, will make a difference first to the patients, secondly for public health, but also for economic recovery.

I think it is the job of the CFSAC to consider, evaluate, prioritize and provide oversight that these and other recommendations made by others, are acted on in an expeditious manner. Given the potential threat to the US GDP and the economy; due to workforce loss, loss of tax revenues, the costs of care for disabled persons and the progressive loss of effectiveness of vaccination programs, it would seem to me that XMRV associated neuroimmune disorders (XAND) are tentatively, a matter of national security, and requires funding commensurate with this possibility.
 

JT1024

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Wow bullybeef....that is quite the post.

Extremely scary but not without warrant.

BTW.... I need that paper bag as well! I think my blood pressure has tanked....
 

Bob

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Note the possibilities on the first, basic question of what they found in their XMRV testing on their samples etc:
(a) They couldn't find any XMRV at all
(b) They found a little bit but no more in CFS patients than others
(c) They found significantly more in at least some sets of CFS samples
(d) They found loads of XMRV all over the place especially in many/most CFS samples
I would go with (c), but possibly even (d)...
If they can detect XMRV at all (and I believe that JM has been working very hard in collaboration with them so that they can)... then I'm sure that they would detect XMRV in their CFS patient samples at a far higher level than the normal population... but maybe not at quite such high levels as the WPI patient cohorts (i.e. not quite 97% but still very high).
 

Esther12

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And won't Jerry Holmberg look like a fool for stonewalling at CFSAC, if it comes out that he was privy to positive CDC results?
Stuff like this does play into my negativity. People who should be in the know don't seem to be acting like their aware of a CDC study confirming the XMRV/CFS link.

We've not got much to go on here, but as we're reduced to reading tea leaves, I'd tend towards thinking that the CDC study is not going to be a clear win for XMRV/CFS - while being careful to remember how little that belief is based upon.

(I should really just read a good novel for a week, and accept that we'll know for sureby the end of it. It's hard not to speculate about these things though).
 

leaves

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Another possibility is that they find it a lot, but not (much) less in the cfs population
Aaaaaaaaaaaaaargh !!!
Doesn't anyone know ?? Please....
 

Bob

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I should really just read a good novel for a week, and accept that we'll know for sureby the end of it. It's hard not to speculate about these things though.
It's horrible waiting for something like this isn't it!
I think we should all go on holiday together for a week so we can forget about it... somewhere tropical... we all deserve a nice holiday anyway.
Shall I see if I can book a sleeper coach for us all?
 

VillageLife

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Its possible they have done this because in a way they have kind of prepared us now! We are all ready for the news and the shock wont be as huge, because we now have a week to prepare mentally.
 

Navid

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A candidate, potentially high risk biological product frequently used for infertility
treatment is human chorionic gonadotropin (HCG) purified from urine of pregnant women
(uHCG). Currently the US pharmacopoeia for urine HCG does not include testing for the
bloodborne pathogens HIV-1 or hepatitis C nor for viral inactivation/reduction, while in contrast
the British and European pharmacopoeia has called for these safety measures since 1997. It is
important to note that many of these products (also urine derived lutenizing hormone, uLH) were
marketed by the early 1980's, and thus, were exempt from newer regulations introduced later.
Recombinant forms of HCG and LH peptides were introduced in the late 1990's and do NOT
have the same infectious disease risk profiles. The recombinant forms (rHCG and r LH) may
have been favoured in the UK and Europe due to higher inherent risks of BSE contaminated
donors. Thus, in the UK and Europe, the spread of infectious agents, possibly including XMRV,
through uHCG and/or uLH may have been minimized due to the use of alternative safer
recombinant products or via the introduction of higher safety standards for uHCG/uLH. It would
be additionally useful to restrict the size of the urine pools to minimize risk, as has been achieved
for plasma products.
I have already raised the issue of urine derived human chorionic gonadotropin (uHCG)
used for infertility treatments and for cycles of "in vitro fertilization" as being potential candidate
sources of XMRV for the CFS-ME



wow..wow...wow....

i became ill after receiving hcg injections during the ivf process.....i got my baby, but maybe xmrv in the process. life really is full of twists and turns : )
 

JT1024

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Just a quick thought (as I leave to work in a community hospital lab, including blood bank!)...

If they release news of XRMV in the blood supply and have no test in place for blood already in the system and being transfused today, what do you think people are going to do?

Here is is a holiday weekend... lots of parties, car wrecks, etc. People are going to need transfusions to stay alive. That being the case, the possibility that someone would get blood positive for XMRV would be high.

Why ruin a holiday weekend here in the states..... just a thought.... got to run!
 

rebecca1995

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Let's start with the assumption that the number of CDC positives will be at most a quarter of what WPI found because the empiric definition yields about four times as many "CFS" patients as Fukuda/CCC, give or take.

So the prevalence of XMRV in the CDC study will probably depend on what tests were used. If the study is PCR-only, I would expect at most 16-17% of the CFS cohort to test positive. (1/4 x 67% [Lombardi et al positive rate])

If it used the additional three tests that yielded the unpublished 98% positive rate, reported at last year's CFSAC, I would expect ~24% to test positive.

How impressive those numbers look will depend on positivity in controls--a figure that depends in turn on how CDC chose controls. Say they picked a lot of contact controls and get a number as high as 10-15%. That would sink a PCR-only study in terms of establishing XMRV as specific to CFS.

Or, best case scenario, say they get the same number as WPI-- < 4%. In that case, the CFS cohort would have XMRV at 4-6x the rate of controls--a reason for the CDC to hire a bunch of English majors to spend a week writing the press release we've been awaiting for 25 goddamn years.

[Edit: I'm assuming CDC used the empiric definition, but who knows? They may claim to have used Fukuda--as Erlwein et al did--or even CCC to prevent us from crying foul.]
 

HowToEscape?

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"Given the potential threat to the US GDP and the economy; due to workforce loss, loss of tax revenues...."

Wouldn't that be potential benefit to the economy as a previously untreatable, disabling disease is attacked and treatment gradually moves toward something effective? There's a small army of people who were formerly productive now working at dramatically reduced capacity or unable to do much of anything. Change them ... err, us, from being in the trash basket to aggressive treatment and this army will gradually get back to work... and paying tax.
Discovering the or a cause of a disease does not make people disabled; failing to address and treat it head on does.

Even insurers would eventually benefit, since those with good enough legal support and financial tenacity eventually get some fraction of the insurance they paid for, while an effective, early treatment program might have many people going out on short-term, getting aggressive medical treatment, enforced rest until ready and then back to full time work. That's a lot cheaper than LTD. That's down the road; the insurers may be looking at the next few quarters not what's in their long term interest. They certainly don't care about their reputation.
 

bullybeef

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Just a quick thought (as I leave to work in a community hospital lab, including blood bank!)...

If they release news of XRMV in the blood supply and have no test in place for blood already in the system and being transfused today, what do you think people are going to do?

Here is is a holiday weekend... lots of parties, car wrecks, etc. People are going to need transfusions to stay alive. That being the case, the possibility that someone would get blood positive for XMRV would be high.

Why ruin a holiday weekend here in the states..... just a thought.... got to run!
I wouldn't put it past a government to not want to ruin a public holiday for the greater good!

Seriously though, you would like to think the CDC would have a plan in place whether they have found XMRV or not. And they probably knew their results months ago when they submitted there paper in the first place. Maybe they waiting for the FDA to approve the WPI blood test. Like what’s been suggested, they can’t announce XMRV to the world without being able to screen for it first, can they?

If XMRV proves to be the big one, would Obama make a public address?
 

hensue

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Why was this put in the last sentence of this article? Like it was not important, I think it is more stalling.