1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Dysautonomia and POTS: An Overview
Andrew Gladman considers the importance of dysautonomia and several of its component parts -- neurally mediated hypotension, inappropriate sinus tachycardia and postural orthostatic tachycardia syndrome -- all recognised as problematic comorbidities by ME/CFS patients ...
Discuss the article on the Forums.

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

Discussion in 'XMRV Research and Replication Studies' started by awol, May 28, 2010.

  1. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    262
    Long Beach, CA
    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?
  2. jeffrez

    jeffrez Senior Member

    Messages:
    1,099
    Likes:
    618
    NY
    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?
  3. bakercape

    bakercape Senior Member

    Messages:
    210
    Likes:
    1
    Cape Cod. Mass
    I understand where your coming from

    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.
  4. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    34
    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,

  5. jeffrez

    jeffrez Senior Member

    Messages:
    1,099
    Likes:
    618
    NY
    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.
  6. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    14
    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 ;)
  7. jeffrez

    jeffrez Senior Member

    Messages:
    1,099
    Likes:
    618
    NY
    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.
  8. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    14
    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
  9. Robyn

    Robyn *****

    Messages:
    180
    Likes:
    0
    xxxxxxxxxxxxxxxxxxxxxxxxxxx.
  10. jeffrez

    jeffrez Senior Member

    Messages:
    1,099
    Likes:
    618
    NY
    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.
  11. 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.
  12. serenity

    serenity Senior Member

    Messages:
    571
    Likes:
    3
    Austin
    the CDC is to blame not any poster here.
  13. alex3619

    alex3619 Senior Member

    Messages:
    5,971
    Likes:
    7,841
    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
  14. Robyn

    Robyn *****

    Messages:
    180
    Likes:
    0
    xxxxxxxxxxxxxxxxxxxxxxxxxx
  15. Rrrr

    Rrrr Senior Member

    Messages:
    1,345
    Likes:
    154
    i agree with frickly, leaves. no worries! i, too, posted that i had heard the rumor.

    rrrr

  16. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    184
    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
  17. Rrrr

    Rrrr Senior Member

    Messages:
    1,345
    Likes:
    154
    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.
  18. Rrrr

    Rrrr Senior Member

    Messages:
    1,345
    Likes:
    154
    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.
  19. Bob

    Bob

    Messages:
    6,319
    Likes:
    6,617
    England, UK
    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.)
  20. Mark

    Mark Acting CEO

    Messages:
    4,412
    Likes:
    1,717
    Sofa, UK
    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...

See more popular forum discussions.

Share This Page