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!
ME/CFS: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
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. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    Of course we've been hearing for months that the paper was about to come out - hopefully it will come out next week but they've missed 'deadlines' before. I wonder why it would take so long? Dr. Miller said the HIV started testing samples the day after the paper came out. By the CFSAC meeting in Oct he said they'd tested 100 samples (!). Here it is 6 month s later and still no paper. How strange!

    I would bet that XMRV is being XMRV and has been playing coy. Its obviously not an easy virus to find - we have what, 6 negative studies reported now in CFS? I'll bet they've been digging one way and then another way - which is good news, I think. Even if they hit an initial negative result - as one would assume they would with the normal techniques - they realized that wasn't enough - they had to go deeper - that's my guess. I would expect a rather comprehensive, complex study to show up - they've been working since Oct!

    the Empirical Definition is no fun - but my feeling is the same as the Oxford definition - throw enough patients in there - and some are going to have XMRV. Remember that the WPI reported that they found that 2/7 samples they were provided from Kuppeveld and the Oxford definition were positive - and parvofighter showed what a screwey group that appeared to be.

    I've heard that the CDC has at least one other CFS group getting tested - they'll presumably have a less sick (Empirical Definition) and a more sick (other group) there.
  2. Bob

    Bob

    Messages:
    7,365
    Likes:
    8,409
    England, UK
    Yes, I'm sure that I've read that the CDC couldn't find XMRV to begin with, and so they have been refining their methodology. I think I read that they usually freeze their blood samples, but this was no good for finding XMRV, so they now use fresh blood samples, which was a very big change in the way they work at the CDC. So it does sound like they are actually trying to find this thing. (my memory is really useless these days so I'm not 100% certain that i've got all these details correct - but i think i'm right about this.)

    I agree... I think that the psychologists might not be as successful at filtering out an organic disease as they think they are... and that a high percentage of even the CDC's patients might actually have a physcial, organic disease process going on, and there might actually be quite a high percentage of blood samples which are XMRV positive... much to the CDC's surprise and annoyance.
  3. hensue

    hensue Senior Member

    Messages:
    269
    Likes:
    0
    Cort,
    If you are still on this board, I was looking at thread in nuts and bolts about flybro. Knackered made the suggestion that the forum will be better when all the xand have their on forum.
    Is this how you feel?
    That is how took it maybe I was wrong.
  4. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    Cort, what's your thoughts regards the press release?
  5. Knackered

    Knackered Guest

    For the same reason it would be for people who are HIV+ sharing a forum with people who are HIV- because they share a similar symptom.
  6. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    14

    Sue I don't think anyone wants to get rid of us both because we are xmrv+. I think Knackered meant that some xmrv+ may want to create a new forum in the future, but all hypothetical. So don't you worry ok?
    Xoxo
    leaves
  7. Robyn

    Robyn *****

    Messages:
    180
    Likes:
    0
    This is how I see it. I think this is going to be a big announcement. Why would this be happening on June 11, XMRV—Chronic Fatigue Syndrome and the Blood Supply, Dr. Katz was recently interviewed for The Wall Street Journal Article "New Threats to U.S. Blood Supply." 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.

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

    ladybugmandy *****

    Messages:
    25
    Likes:
    0
  9. jimbob

    jimbob ME/CFS84-XMRV+

    Messages:
    321
    Likes:
    8
    myrtle beach, s.c.
    somebody check on flex, we need that bag back!!!!!
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    I have said this before. Seems not too smart, if it can be avoided, to announce confirmation of a human retrovirus that causes disease when there isn't a test for it, either for those transfused, blood already collected, or the public at large who think they may have it.

    Tina
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    As reporter, if the news only affected researchers and CFs community, no press release, I would think. Press release is because you expect lots of phone calls from reporters and you put your answers out to keep from having to repeat yourself again and again. Also is sometimes done when you have news positive about your own organization and you hope a press release will prompt a news story.

    If, and we still don't know it is for sure, a press release is coming, then it has news of matter of public concern. Given it is public health agency, would likely be news of public health concern.

    I can't imagine CDC would do study that says they can't find it if Germans, Japanese, Cleveland Clinic and WPI can find it at 1-6% of healthy controls. Coming out with completely negative would be too embarrassing.

    Might show in population at large, but not in CFS patients at higher rate. I can't see this because NCI and CC also helped in study finding it in higher rate of CFS patients, and they have no great concern for CFS patients. They are cancer folks.

    As for statement that they would realize the results along the way, not so as far as finding it in higher rate in CFS patients. Likely, like the WPI / CC / NCI study, the samples were blinded. Meaning the rate in CFS patients would not be determined until they were unblinded in the end.

    Now, another possibility, they didn't test CFS patients at all, but instead tested healthy people and prostate cancer patients. And if they found it higher in prostate cancer patients, that would also calll for public statement.

    Still all of this confuses me, since as I said above, I can't see them releasing positive study results connecting to disabling illness until there is a commercial test.

    At the same time, I guess, if it is found out they had the results and held them for four months, then that would be unethical and against a Hippocratic oath. (Do researchers take that oath?)

    I just hope Cort's buzz statement is true and we aren't all getting anxious when there isn't a press release.

    Tina
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    I had another thought. But it escaped me. Hope it will come back.

    Tina
  13. bluebell

    bluebell Guest

    You know who will be second happiest if the gov't announces they found XMRV? BP.
  14. Robyn

    Robyn *****

    Messages:
    180
    Likes:
    0
    I'm wondering though was there a commercial test when they announced HIV? I would have to look it up. Or maybe they have the commercial test and will announce that at the same time.
  15. JT1024

    JT1024 Senior Member

    Messages:
    526
    Likes:
    273
    Massachusetts
    I know I wasn't too interested when HIV, HepB, or HepC testing came out even though I've worked in hospitals for years.

    Hepatitis B vaccinations were really big in the 80's and anyone with patient contact or with blood/body fluid contact was strongly "encouraged" to take a vaccine. Since HIV came on the scene at the same time the Hep B vaccine was being marketed to hospitals, few wanted the early vaccines until they were confident HIV was not in the vaccine. I remember a representative of a vaccine manufacturer (given at the hospital where I worked) was unable to guarantee that their vaccine was free of whatever was causing HIV/AIDS. Hepatitis vaccines at that time were made from carriers of Hepatitis B... (IV drug users and gay men).

    Later on, most of us did get a Hep B vaccine (once HIV was identified and tested for). I doubt there can be any guarantee that other viruses were not present.

    I've recently learned how many HIV "types" there are.. : http://www.patientslikeme.com/hiv/patients. From the website I've linked to, you can sort by HIV type.....

    I occasionally do rapid HIV testing when we have a needle stick or other type of exposure on an employee. The test screens for HIV 1 and 2. Little did I know there were HIV 1, Group M, Type A1, A2, B, C, D, ............

    Without the ability to test the existing blood supply in place, I doubt any "announcement" will take place.
  16. bluebell

    bluebell Guest

    I believe they announced a possible threat to the blood supply several years before the HIV test became available. That doesn't mean they will do it this time, but they might as well if other studies are going to come out anyway (so as not to appear as though they have been sticking their heads in the sand - because no one would do that with a serious disease, right? At least not if they were about to get caught:p).
  17. Countrygirl

    Countrygirl Senior Member

    Messages:
    764
    Likes:
    406
    UK
  18. Patience

    Patience Guest

    My main question is to Cort ? Whom are your sources stating there was supposed to be a press release? With whom are you speaking to that the rest of the community does not have access to . Amy Dockser Marcus the main reporter of the threat to blood supply has no mention of the study nor the press release . Furthermore a blog not citing your sources is a Rumor . Not Fact. However I am not concerned at all . Everyone must remain patient and calm . Here is the bottom line Silverman , Japanese Red Cross , Cleveland Clinic , Germany , WPI, CC, NCI did not contaminate their samples . They showed antibody responses!!! XMRV is very real and the CDC will look like complete fools if they come out with a we couldn't find it study . As Klimas and others have stated There is a positive study coming soon . If it's not the CDC then so be it .
  19. Patience

    Patience Guest

    I apologize if I came off witchy amafter reading My last post this but I get so flummoxed that the people who are trying to make a difference keep getting pushed back further and further . Do you know if certain advocacy groups hadn't gotten involved or patients for that matter or doctors eho are too worried about their ego and their theories we would have clinical trials going in the United States already . Dr. Mikovits emailed mecand she said these groups are the worst enemy because Yes to my surprise people who were getting involved have gotten tied down in the negative studies net reading these blogs . Having heads of advocacy group. Write them and scientists with their own agenda such as the Dutch saying they didn't find it when they did or Kerr not finding it when he did, or magazines and articles claiming these are outbreak Groups. The German study was genious for one reason they avoided controversy completely by testing ( immunocomptomised patients ) do you notice they didn't describe wgat that meant wink wink . Hello !!!
  20. Anika

    Anika Senior Member

    Messages:
    135
    Likes:
    1
    U.S.
    Any information from the Cold Springs Conference?

    Wasn't the Cold Springs conference on retroviruses, etc. this past week?

    I haven't seen any posts announcing specific results from the conference but I think it had a lot of eminent people in the area..

    I think there are research / conference venues where confidentiality is required and assumed, and Cold Springs conferences may be among them. I hope anyone with better knowledge will correct me if I'm wrong. The more important and/or sensitive the topic, the more important I would think it would be that press results be "managed."

    Whatever the outcome/s, I really want the best scientific minds, with adequate monetary support, behind all efforts into researching this.

    Thanks to all for posting info on this.
    Anika

See more popular forum discussions.

Share This Page