new CFS/XMRV Task Force at Dept of Health & Human Services?

fresh_eyes

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Anybody know anything about this? From the CAA, in today's CFIDSLink:

"In recent weeks, the U.S. Department of Health and Human Services has formed an interagency task force that is meeting regularly to appropriately replicate the CFS studies, address validation studies, development of appropriate screening and diagnostic tests, and to address the safety of the blood supply. There has not yet been a formal statement from the Department about this interagency effort..."

(on Facebook here: http://www.facebook.com/notes/whitt...-getting-right-and-giving-thanks/217326755538)

I'd like to know which agencies are represented, who is representing them, how often they're meeting, what exactly is on the agenda, when they expect to have information to share, etc!
 
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anne

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This is such a big deal and I'm a bit surprised it's just been dropped into a Thanksgiving message. (But I could just be greedy for information.) The obvious question is, okay, replication studies, great, but what's their cohort? This does us no good if the CDC is supplying it.
 

fresh_eyes

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This is such a big deal and I'm a bit surprised it's just been dropped into a Thanksgiving message. (But I could just be greedy for information.)
Well, that was my reaction as well, so if you're greedy, that makes two of us! I'm afraid it looks like more evidence that the CAA is still not quite "getting it".

The obvious question is, okay, replication studies, great, but what's their cohort? This does us no good if the CDC is supplying it.
Exactly - which is why we want to know who is on this committee and what they're doing!

On the plus side, the very fact that this committee has been formed (in recent weeks no less - since the Cleveland Clinic meeting??) suggests to me that preliminary study results (surely studies are already in process, right?) might be confirming the XMRV hypothesis, or at least not blowing it out of the water. I mean, CAA was privy to pre-publication into from Mikovitz, right? And sort of blew it by leaking it? Who knows what else they might know by now.
 
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DSan

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I'm wondering why Kim McCleary couldn't be bothered to put that in her message instead of her cryptic hint.

What does everyone here think?
Seems like the CAA is somewhat desperate to be perceived as still an "insider" in all this by leaking info and putting out hints. If so, that would put them in the "leaky media" category which is far removed from the relevant advocacy they tout. Of course, it can be strongly argued that their relevance is too wrapped around the CDC to matter at this point.

DSan
 

Cort

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This CAA stuff is getting blown way out of proportion. Yes it would have been good if they'd provided more information but this

Seems like the CAA is somewhat desperate to be perceived as still an "insider" in all this by leaking info and putting out hints. If so, that would put them in the "leaky media" category which is far removed from the relevant advocacy they tout. Of course, it can be strongly argued that their relevance is too wrapped around the CDC to matter at this point.
is crazy in my opinion. They put out fresh information on a new study which is of interest to us all - and their reward for doing so is to be called 'somewhat desperate' and to be put into the 'leaky media category'.

Then they are accused of being wrapped around the CDC! If you think they're wrapped around the CDC check out this page of their interactions with the CDC. They have spent more time and more effort - by several magnitudes - going after the CDC over the past couple of years than any other organization. Its not even close!

http://www.cfids.org/cfidslink/2009/070108.asp
 
K

_Kim_

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Wildaisy, you are ON today!! What a thought - ask Wanda. So smart of you.

Thanks, Kim
 

Cort

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The CAA is not a rah-rah group - don't go to them for that but they are very professional (almost too professional!) and when they say something you can pretty much count on the fact that they've done their homework. They cross their T's and dot their i's. I appreciate that.

It could very well be that they're waiting on this

There has not yet been a formal statement from the Department about this interagency effort
before they provide more information about the interagency effort. Institutions hate it when you step on their announcements; if the CAA wants to continue to be privy to interagency efforts it may very well behoove them not to mention the particulars until the agencies involved announce it themselves.

Seven weeks ago, a consortium of researchers at the Whittemore Peterson Institute, Cleveland Clinic and the National Cancer Institute published results of a study linking XMRV, a human retrovirus, and CFS. XMRV had previously been linked to an aggressive form of prostate cancer.

This Oct. 8, 2009 publication in Science continues to attract worldwide media attention and has ignited interest in CFS from many disciplines within the scientific community. As Dr. Daniel Peterson stated at the Oct. 29, 2009 meeting of the federal CFS Advisory Committee, “XMRV is a scientific stimulus package for the field of CFS research.” We couldn’t agree more.

Congratulations to the team led by Dr. Judy Mikovits at the Whittemore Peterson Institute and inspired by the Whittemore family, especially Andrea Whittemore-Goad, who has suffered with CFS for 20 years since age 11.

In recent weeks, the U.S. Department of Health and Human Services has formed an interagency task force that is meeting regularly to appropriately replicate the CFS studies, address validation studies, development of appropriate screening and diagnostic tests, and to address the safety of the blood supply. There has not yet been a formal statement from the Department about this interagency effort, but the National Cancer Institute (part of the National Institutes of Health) posted an informational question-and-answer page about XMRV on November 18, 2009. More information from the federal agencies is expected soon, especially on the topic of blood safety.

Numerous follow-up studies are under way at academic centers and government labs in the U.S. and other countries. On November 11, the Cleveland Clinic hosted a meeting of researchers studying XMRV in prostate cancer, CFS, and other diseases. Last week, the Medical Research Council of the U.K. held a meeting on ME/CFS at which XMRV studies were discussed.

These investigators are proceeding cautiously to ensure that their results are comparable to the initial study based on the characteristics of patients and controls tested, and the laboratory methods and procedures utilized. Although it’s tempting to pass along rumors about which groups might have found positive and negative results in samples they’ve tested so far, we will await published data from authoritative sources before posting updates.

Response from the CFS community to the initial study, media reports and burgeoning online discourse has run the gamut from salvation to skepticism, from relief to fear, from euphoria to panic. These varied and dynamic reactions have created communications challenges, as organizations and individuals have tried to keep up with the latest news and separate data from opinion and rumor from fact. With the many channels by which people now receive information, new sites have sprung up and existing ones are busier than ever. We’re using a combination of new and traditional media to keep our constituency informed.

Content, tone and timing are all important and, at times, we acknowledge that we have gotten only one of the three completely right. And we recognize that these missteps have created some questions and strong feelings about our response to the XMRV study. Be assured that we share the hope and anticipation that these important findings will lead to immediate advances in diagnosis and treatment. And know that we’re listening to feedback, shared both directly and indirectly, with us. We’re constantly working to refine our messages to ensure that we deliver the factual, focused communications you count on.


On this Thanksgiving eve, we express gratitude for the dedicated efforts of all researchers, professionals, and volunteers who seek to advance understanding of CFS, including the team led by the Whittemore Peterson Institute. We are most grateful for the sacrifices of donors at all levels who have sustained the CFIDS Association of America over the past 22 years and who share our relentless determination to make CFS widely understood, diagnosable, curable and preventable.

For more information about the topics mentioned above, please visit http://www.cfids.org/XMRV/default.asp#info.
 

Daisymay

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Thanks Wildaisy, Go Wanda

(Doing a "Go Wanda" happy dance. In my mind.)

I like it! I

I think Wanda is great, she is really on side and caring.

Thanks so much for finding this info Wildaisy, this is great news, apart from the fact that the CDC is involved and which blood samples are they using, I would assume though that WPI and Dr Mikovits have really made sure this problem is well understood? I surely hope so......
 

fresh_eyes

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FDA, NIH, CDC--the agencies responsible for blood safety, as well as several non-Federal groups. The team is drawn from the retrovirus expertise of the agencies...They have standardized reagents, working with Judy Mikovits.
Daisymay, I took the above to mean that 1) the CDC is not represented by a Reevesian, ("retrovirus expertise") and 2) that the studies are all using the same techniques and they're the ones Mikovits used. Both enormous changes from the bad old Osler's Web days at the CDC.
 
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anne

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Then they provide an apology and extend an open hand to the WPI and Andrea Whittemore. (that so far has been ignored).
That's not true. People have commented on it on another topic. We're just talking about that very tantalizing tidbit. And I freely admit my frustration is simply DYING to know more.
 

Daisymay

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CDC blood samples

Daisymay, I took the above to mean that 1) the CDC is not represented by a Reevesian, ("retrovirus expertise") and 2) that the studies are all using the same techniques and they're the ones Mikovits used. Both enormous changes from the bad old Osler's Web days at the CDC.
Yes I understood the same, standardised reagents (and hopefuly not Reeves involved, though same organisation with a lot of history to hide, though maybe now they will come good) but it is the question of them using CDC stored blood samples from supposed CFS patients, for example Georgia Wichita study as defined by CDC definition of CFS, which we all know is a load of bunkum, which is the problem.

Willl they be using these blood samples to try and find XMRV?

Hopefully not......'cos that would serioulsy screw the findings, well at least the CDC's findings.

The retroviral guys at the CDC may be kosher but are they aware of all the diagnostic criteria problems? They may just use the blood in good faith not knowing the problems?

Or they may know full well about these problems........

We realy need to know that they are using the same diagnostic criteria as WPI.
 

Cort

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Its going to be interesting. Dr. Miller told me the CDC is very aware of the diagnostic problems and that is one reason why they are asking other researchers/clinicians for blood samples. They also have 20 samples from the WPI that are positive for XMRV - so they can focus on those - make sure they're doing the test right and then assess the rest.

They should have four or five groups of CFS patients! Patients who met the CDC definition in the late 1990's but not in 2001/2, patients who met the definition both times, patients who met the Empirical definition in 2006 or whatever and then CFS patients who met the definition later. What a mess!

Unless they have samples from 'certified' CFS patients they're not going to be able to replicate the WPI's results. They'll be doing their own study on their own set of patients. All they need to do is find it in a significant subset (10-20%?) and I'll be happy.
 

fresh_eyes

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I see what you mean, Daisymay. This is total guess on my part, but I bet they'll go ahead and use CDC banked samples for a study, knowing full well that they're questionable, partly to figure out just how bad they are. If, as Cort points out, it's 10-20% XMRV+, that will be informative in itself, showing that we were right about the flawed cohort (since about 5x as many people have Reeves' Disease, right?). This in conjunction with lots of other studies using a better cohort. That's my guess, today - feeling very optimistic right now. :)
 

Daisymay

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CDC blood samples

I see what you mean, Daisymay. This is total guess on my part, but I bet they'll go ahead and use CDC banked samples for a study, knowing full well that they're questionable, partly to figure out just how bad they are. If, as Cort points out, it's 10-20% XMRV+, that will be informative in itself, showing that we were right about the flawed cohort (since about 5x as many people have Reeves' Disease, right?). This in conjunction with lots of other studies using a better cohort. That's my guess, today - feeling very optimistic right now. :)
Yea, feeling v optimistic too!

Hopefully with all these researchers on the case it will all pan out OK.

And with the MERUK research announced to day things are looing good.
 

hvs

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This CAA stuff is getting blown way out of proportion. Yes it would have been good if they'd provided more information but this
is crazy in my opinion.
Cort! You know I love you, dude, but you don't see anything unwise about using the word "crazy" on a CFS forum? :rolleyes:

Man, I'm not sure it's the right idea to accuse those who disagree with you of getting worked up and then losing your cool.

I've heard reasonable arguments that the CAA is $#$@!ing the pooch these days and that, on balance, they're doing alright. But apparently no one has the market totally cornered on reason and calm.

---

I would just add that WildDaisy appears to have gotten us more information by emailing Wanda Jones than the CAA was able to provide. :)
Way to go WildDaisy!
 

Sing

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Re: Cort's post

I liked Cort's message as it was aimed to restore perspective. I wouldn't take it personally that he used a word like "crazy". Some of us can get carried away in fear, speculation and attributions of motives that may not be the case. (I've done it myself.) And then a splash of cold water or occasionally a large STOP sign can help one sober up. I always see Cort as trying to keep this forum as realistic and useful for everyone as possible.

THanks!

Cecelia
 

starryeyes

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Unless they have samples from 'certified' CFS patients they're not going to be able to replicate the WPI's results. They'll be doing their own study on their own set of patients. All they need to do is find it in a significant subset (10-20%?) and I'll be happy.
I don't know... we'll see... this is very scary. I don't trust any list that has the CDC on it. It's way worse that they have so many other big names working with them on this. I don't trust them at all.

Thank you Wildaisy for contacting Wanda Jones, that was a smart move. Wanda Jones is really coming through for us. :)