• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
If that's how you people want to spend your time, discussing press releases that don't exist, go right ahead. I have better things to do than speculate for 25 pages about things that don't even appear to be true.

Gee, I figured that since you had posted several to this thread several times in the past couple of days, you were enjoying the discussion, too. Maybe we can start another thread on the merits or lack thereof of speculation. As I said, I enjoy reading people's speculations on this board, because it tends to be fairly well-informed speculation. But I won't say "well just don't read it, then" because I know sometimes I wade through discussions that I'm not interested in, because I'm hoping to find solid news, and that can be frustrating. But a platitude that seems to apply is, don't shoot the messenger. Can't we all just play nicely?
 

jeffrez

Senior Member
Messages
1,112
Location
NY
Gee, I figured that since you had posted several to this thread several times in the past couple of days, you were enjoying the discussion, too. Maybe we can start another thread on the merits or lack thereof of speculation. As I said, I enjoy reading people's speculations on this board, because it tends to be fairly well-informed speculation. But I won't say "well just don't read it, then" because I know sometimes I wade through discussions that I'm not interested in, because I'm hoping to find solid news, and that can be frustrating. But a platitude that seems to apply is, don't shoot the messenger. Can't we all just play nicely?

I think if you go back and look, the majority of my posts here have said something regarding about the futility of speculating. Then as days went by I completely lost track of the thread premise, started reading posts about what people thought the "press release" would say, hung around to hear the results, and now find out there will be no press release, that the entire thing is just a fabrication, with heaps of speculation on top of that fabrication. It's annoying to say the least. I don't like sloppy thinking. It's hard enough keeping track of stuff with brain fog and other cognitive issues without having to deal with threads premised on the eventuality of a press release that in fact doesn't exist.

But like I said, I'm trying to unsubscribe. How do you turn off these notifications?
 

bakercape

Senior Member
Messages
210
Location
Cape Cod. Mass
I understand where your coming from

It wasn't always presented as speculation. The impetus behind many posts presumed a press release to begin with, and then just merely speculated on the contents. The brainfog is bad enough with everything else to keep track of, let alone 25 pages of this kind of stuff. I was led to believe going through this thread that there would be a press release regarding XMRV, and now it turns out there will not be. So that indicates to me that the basic thread premise is irresponsible. Even here you present the study as being synonymous with the release. So there is a great deal of lack of clarity here.

And just to add again - no, I don't care if you want to spend all your time speculating on something you know nothing about, with no facts about it whatsoever. Which basically amounts to what? It really amounts to just making things up. The point is that can get confusing for many people, and rumors and speculation like that is what ends up confounding many issues, not just this one. As a general principle, in other words, spreading rumors and speculating on hypothetical outcomes is an irresponsible behavior.

After 23 years with this illness I guess I never really believe anything until it happens and I allways am prepared to be let down. That being said I'm actually more inclined to believe what an anonymous poster has to say about what is going on at the CDC than the CDC itself. This is the same agency that misdirected all the funds for our illness for years. Basically stealing from us and lying to us.
 

Frickly

Senior Member
Messages
1,049
Location
Texas
Mr. Kite, we all see what we want to see. In this case we all want to see the results of this study. I did not see this before but noticed in your post that the title of this thread is, "CDC replication study delayed in order to prepare a press release?!" I guess many of us missed the "question mark at the end". I do hope you continue to post Mr. Kite. I think emotions are very high.

Take care,

It wasn't always presented as speculation. The impetus behind many posts presumed a press release to begin with, and then just merely speculated on the contents. The brainfog is bad enough with everything else to keep track of, let alone 25 pages of this kind of stuff. I was led to believe going through this thread that there would be a press release regarding XMRV, and now it turns out there will not be. So that indicates to me that the basic thread premise is irresponsible. Even here you present the study as being synonymous with the release. So there is a great deal of lack of clarity here.

And just to add again - no, I don't care if you want to spend all your time speculating on something you know nothing about, with no facts about it whatsoever. Which basically amounts to what? It really amounts to just making things up. The point is that can get confusing for many people, and rumors and speculation like that is what ends up confounding many issues, not just this one. As a general principle, in other words, spreading rumors and speculating on hypothetical outcomes is an irresponsible behavior.
 

jeffrez

Senior Member
Messages
1,112
Location
NY
After 23 years with this illness I guess I never really believe anything until it happens and I allways am prepared to be let down. That being said I'm actually more inclined to believe what an anonymous poster has to say about what is going on at the CDC than the CDC itself. This is the same agency that misdirected all the funds for our illness for years. Basically stealing from us and lying to us.

Hey, I'm with you on all that. The only thing I am concerned with regarding this thread, however, is a simple question: Is there going to be a CDC press release about XMRV? The answer to that appears to be "no." So there is nothing to say until their study actually does come out, and from what I understand - although like I said, it gets confusing with all the speculation and I don't want to go back and sift through 25 pages of posts - that is not going to be on June 11 -- when the press release was said to be scheduled -- but likely will be weeks or more probably months away. Unless I have misread something and Mikovits or whomever is conducting this study with the CDC said they will release the findings on June 11. But that is not my understanding right now, at least.

And based on that, my personal feeling and inclination is that posting on what we "think" the study is going to show is about as futile as posting what we think about anything that hasn't happened. It's pointless. In fact, it's worse than that. All this kind of speculative information floating around only tends to confound the REAL information when it's finally released. It's just that much more for people to have to sort through. That's my opinion and in my experience. It's always better to *wait* until you actually have something to go on. Making things up helps no one.
 

leaves

Senior Member
Messages
1,193
Mr kite you certainly have a point, and I don't completely disagree. I think the net benefit from this thread is may not be so high. If you now also accept the fact that I actually had no bad intentions with posting, that I am not full of bs and that some people ARE interested in this stuff, I think were all good ;)
 

jeffrez

Senior Member
Messages
1,112
Location
NY
Mr kite you certainly have a point, and I don't completely disagree. I think the net benefit from this thread is may not be so high. If you now also accept the fact that I actually had no bad intentions with posting, that I am not full of bs and that some people ARE interested in this stuff, I think were all good ;)

I don't think you had bad intentions at all. Only the very best intentions, I would guess. It's nothing personal in the least, so don't take it that way at all. Mostly it's my mistake for assuming from the title that there was in fact a press release in the works, and it was just a matter of wondering what was in it. Now it turns out there is no release... I guess? And the study is delayed? Or it isn't? And June 11th is... a date that the non-existent release was supposed to appear, but now that there actually is no study, it's basically just a random date? Or the results of the study are coming out June 11? Or the study has nothing to do with June 11? Blah. a sloppy mess. It's just not how I normally function, sorry.
 

leaves

Senior Member
Messages
1,193
No problem at all. Wishing us all a good nights sleep and some answers in the near future. All this stress is killing.
Hugs,
leaves
 

jeffrez

Senior Member
Messages
1,112
Location
NY
The person that posted this thread did so after reading it on the buzz page. That is where they got the title for the post. Later it had been deleted from the buzz page. I saw the original posting and it also said that this was a study that was started before the WPI paper was even out. You can refer back to my posts. I don't think it was ever even a replication study or even related to XMRV. So I think the title should probably not have referred to it as a replication study. That could be why it was taken down.

Lol, it's totally confused. Things put up, taken down, misstated, mis-dated. I don't think this type of thing reflects particularly well on CFS patients. But who knows, maybe it helps to verify or highlight at least some of the cognitive issues in the disorder.
 
D

DysautonomiaXMRV

Guest
Huh?

What has a moderator/admin removing data from a page got to do with patient's congitive issues?

Either the information is visible or it's removed without explanation

Which furthers confusion and is nothing to do with anyone's cognitive issues.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Great New Game Syndrome

Hi

Have any of you hung out on gamers forums in the weeks leading up to the release of a highly anticipated game? For me the first time I did this was in the weeks prior to the release of Oblivion, since I was a Morrowind fan. Rumour, speculation, overthinking etc etc etc. Just like this thread. That is NOT a criticism, this is normal human behaviour. In fact, I find it interesting - we anticipate new information and have such hope that, as a community, we resemble teenagers talking with the peers about how they will pwn the new game. Given that this a life, life and death (yes, two meanings of life) situation, it just affirms that we all feel this is very very important to us. The speculation is not necessaryily wasted either. WHEN a situation arises like this, we we be able to more quickly respond to it - including having someone verify the source. (Thanks Rrrr.)

Bye
Alex
 

Rrrr

Senior Member
Messages
1,591
i agree with frickly, leaves. no worries! i, too, posted that i had heard the rumor.

rrrr

Oh leaves, please don't worry about it. Your source might be correct. Everyone is just on pins and needles now. Please continue to post your thoughts and information from your sources, they might be right!
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Just because the CDC study started before the publication of the WPI paper does not mean they are not trying to verify the WPI findings. I don't know if y'all remember, but there was a private meeting before the paper came out. Please correct me if I am wrong, my memory is not real reliable that far back. But didn't Coffin or someone refer to that meeting? And wasn't the question asked if there was a representative of blood safety there? and the answer was yes.... I think. This was discussed, I think in the CFSAC meeting in October, right after the publication of the study. So it happened earlier.

And then there was another one in November. It was private too, but not so secret.

So, there was knowledge by many, including government researchers, of the WPI study before it was published. So they may have started the study, and maybe altered it along the way as more studies revealed more after publication by WPI. That is just speculation here.

And, as for the other issue, I hope in the future that Cort will not post something from him unless he has it from firsthand source. I know many may post rumors here. That is the nature of message boards. But I hope that Cort will follow more stringent standards so that he can keep credibility and future information he puts out on this Web site, even if from a firsthand anonymous source, is trusted. I think someone who writes a blog as a semi-news or commentary position is not the same as anonymous people posting on message boards. The expectation of reliability is different.

All that to say, where there is smoke there is fire, usually. So the rumor may be true.

Tina
 

Rrrr

Senior Member
Messages
1,591
and, i will add again, often the press person (e.g. joe at the cdc?) is purposefully kept out of the loop for deniability reasons, which he duly performed today, to/for us.

soon enough, the cdc will have to come out with a press release on xmrv. i mean, countries ARE banning cfs folks from donating blood. so i'll bet it will be sooner rather than later.
 

Rrrr

Senior Member
Messages
1,591
lastly, i'll remind you all of this. this is a FACT. i asked my doctor's office to let their phlebotomist attend it. we'll see if he will.



HomeTeleconferencesTH0037X
XMRV—Chronic Fatigue Syndrome and the Blood Supply
Date: Friday, June 11, 2010 12:00 Noon CT
Credits: 1 CME/CMLE
MOC: PC, MK, PBL

Who should attend?
Practicing Pathologists, Residents, Laboratory Managers, Bench Technologists & Technicians, Cytotechnologists, and Phlebotomists

Louis M. Katz, MD
Executive Vice President of Medical Affairs, Mississippi Valley Regional Blood Center, Davenport, Iowa

Public health officials are investigating the potential threat to the nation’s blood supply posed by xenotropic murine leukemia virus-related virus (XMRV) – a retrovirus that some researchers believe may be responsible for chronic fatigue syndrome. This is a potential concern because, theoretically, the virus can be transmitted through transfusions as are other retroviruses such as HIV and HTLV.

There is currently no FDA-licensed blood donor screening test and standards for diagnosis for XMRV infection. Currently, some blood collection agencies are considering the possibility of deferring donors with a history of chronic fatigue syndrome. Efforts are underway by the FDA and CDC to find effective tests for and determine the prevalence of XMRV.

In this Teleconference, Dr. Katz, a specialist in infectious diseases and a prominent figure in national blood banking organizations, will provide in-depth background about the virus and its taxonomic relationships, bring you up to date on XMRV research initiatives, and clarify the issues surrounding the virus in transfusion medicine.

Participants are encouraged to ask questions and engage with Dr. Katz.

Louis M. Katz, MD has served as President of the Board of Directors of America’s Blood Centers, the national organization of independent, community-based blood centers that supply half of the blood components transfused in the United States.

Dr. Katz was recently interviewed for The Wall Street Journal Article "New Threats to U.S. Blood Supply."

Following the conclusion of this program, participants will be able to:

Identify the taxonomic relationships of XMRV
Recognize the disease associations that are being proposed for XMRV
Justify the emerging interest in XMRV in transfusion medicine
Evaluate current research initiatives

Live Webcast Option!
As an alternative, you may view the slide presentation via the live webcast option – the slides are advanced automatically as you view them online while the audio is still accessed over the telephone.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I would like to offer a word of caution to people who have been finding this discussion thread stressful...

At the moment, many of us are hanging onto the hope of XMRV being the answer to all of our problems (me included)... but, for our own well-being, may I suggest that people think about taking a step back from this situation sometimes...

At the moment we don't know that much about XMRV, although the Science paper is very strong... XMRV might only apply to a subset of people with CFS/ME... and it won't apply to everyone with CFS (CFS as diagnosed with looser criteria), as shown by the results that the VIPdx laboratory are getting with their private blood testing. And XMRV might still only be proved to apply to a subset of people with ME (ME diagnosed with tighter criteria). Also, XMRV might still prove to be only an opportunistic virus, taking advantage of an already compromised immune system, rather than the cause of ME. I think that it is healthy to keep these things in mind.

I'm only saying this because I think it might not be healthy for us to cling onto XMRV as our only hope... There is other research being carried out such as with enteroviruses, HERVs and Dr Lerner's work... XMRV isn't the only hope on the horizon...

Even if XMRV does turn out to be the cause of ME for a majority of us, it will still leave some of us without answers, and it might still be years before the establishment fully accept the link between XMRV and ME and come up with some effective treatments and make them generally available... There's a strong possibility that we're not going to get any definite answers any day soon.

I'm not trying to dash anyone's hopes here... but I'm simply pointing out that if we put all of our hopes into one basket, then the amount of stress that we experience with announcements like this will continue to rise... I can't see there being any officially accepted certainties with this for another year at least.

Even if the CDC publish a positive study in this instance, it may not be conclusive... it's quite likely not to be conclusive, although it might be a step in the right direction... but it might just raise more questions, rather than answering any for us... they would need to do further studies using only the Canadian criteria, or similar, to get results which are meaningful for us.

I'm trying to be pragmatic and helpful here... I'm not trying to kill off hope...
I'm just saying that it might be a good idea that we remember to take a step backwards sometimes and to keep some perspective, however hard it is with this illness... (Hope that's not coming across as patronising... it all applies to me too.)
 
Messages
5,238
Location
Sofa, UK
But like I said, I'm trying to unsubscribe. How do you turn off these notifications?

To unsubscribe from the email notifications to a thread, at the bottom of those notifications you'll see two links: one to unsubscribe from the thread, and one to unsubscribe from all threads.

To manage your thread subscriptions, go to Forum > Quick Links > Subscribed Threads.
Or Settings > List Subscriptions goes to the same page.
Select threads by ticking the box next to each one, and at the bottom of the page then click "Selected Threads" and a menu comes down: from there you can manage those subscriptions by setting the subscription type - you can also delete the subscription (unsubscribe) that way.

Regarding speculation, I think I see your point, but I also think a lot of us enjoy speculating and are going to carry on doing so, so it's a bit futile to say we shouldn't. Whether the whole premise of this thread is based on unfounded or on well-founded rumours I don't know, and I'm really not sure how I feel about unsourced rumours in general, but ultimately I'd be more critical of the CDC for not officially releasing enough information about what's going on, than I would be of anyone involved in leaking information, and so long as the source is genuinely reliable, I'd personally rather know more rather than less, so I'm not complaining. I guess how I feel about it is likely to be heavily influenced by whether it turns out to have had a grain of truth to it.

And by the way June 11 is also kick-off day for the World Cup, and in the UK whatever the CDC or anyone says on June 11, however dramatic, probably won't be ready in time for the evening news here, and from that point on everyone will be in world cup fever with England-USA to focus on the next day...so whatever is said on June 11, the general public won't notice...