1. Patients launch $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!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

Sue J Blog: NJ CFS Conference - Update on XMRV by Dr. Mikovits

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Otis, Oct 20, 2010.

  1. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    407
    Upstate SC, USA
    Here is the thread on the seminar, but the link or the referenced information is not on here and I thought for sure it was. There is a short snip of information from a Yahoo group that gives some information, but there is another one somewhere. Unless it was removed!

    At the UCLA seminar Dr. Mikovits was stated as saying that there are two complete and separate viruses. There is XMRV and PMRV and she strongly felt that when these two were present it created a treatment problem with antivirals. I'll find if it has not been removed.

    http://www.forums.aboutmecfs.org/showthread.php?7726-Mikovits-speaking-at-UCLA-on-XMRV-on-Oct.-8
     
  2. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    Sue Jackson has updated her original blog to correct some mistakes people noticed. The updates and the original blog can be found here.
     
  3. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    407
    Upstate SC, USA
    I can't come up with it, but I don't see why anything that was said in NJ wouldn't have covered what she went over in LA at UCLA on the 8th. Sue Jackson's blog probably covers it all.
     
  4. natasa778

    natasa778 Senior Member

    Messages:
    1,483
    Likes:
    1,349
    London UK
    There was a LOT of pressure from Science on them to remove all references to CFS. Science did not want the paper to be about CFS, they wanted it 'purely' showing a new human retrovirus present in population... But J&co dug in their heels
     
  5. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    I heard a bit if that but not the extent of the pressure. Seems like all parties are dug in. Where will the current big studies land? And how cleanly?

    Major stakes poker. This is no time to take the heat off off DHHS, NIH and FDA. Now we add NCI to the game, only its no game.

    Dr. Singh was right, the papers get harder.
     
  6. Francelle

    Francelle Senior Member

    Messages:
    444
    Likes:
    15
    Victoria, Australia
    What if the journals refuse to accept any of the forthcoming research papers linking this retrovirus to M.E.? Could this conceivably happen to the Lo/Alter study and other - not just the WPI 'ones in the drawer'?

    It's a scary thought!
     
  7. Sasha

    Sasha Fine, thank you

    Messages:
    8,720
    Likes:
    7,988
    UK
    I wonder if they've considered setting up their own online XMRV journal. The normal publication process is not serving patients well at this stage in the game.
     
  8. Stone

    Stone Senior Member

    Messages:
    371
    Likes:
    6
    NC
    Maybe I'm wrong, but isn't Plos1 a journal that scientists can sort of "self publish" in? It's far beneath a scientist of Doctor Mikovits' stature, but it would get the information out there, and it would get the job done, although it's well known that it's a non peer reviewed journal. At least I think it is.

    Also, it would seem that the CFIDS Association could do something to get Mikovits published. Who publishes the studies they fund and back? How do they get their stuff published?
     
  9. Sasha

    Sasha Fine, thank you

    Messages:
    8,720
    Likes:
    7,988
    UK
    Good question, Stone - I'm not familiar with journals like Plos1. I don't think it is prestigious, which is a downside of self-publishing; on the other hand, if prestigious people such as Alter got involved in starting up an XMRV journal or data repository, it might be a different matter, especially for the purposes of getting a very young branch of specialist science off the ground with the speed of information-sharing that is necessary.

    As far as the CAA-funded studies go, the funder usually doesn't have any influence in getting their studies funded. Usually, the study authors submit their papers to the most prestigious (and hence most influential and widely-read) journal they think they have a chance with, and then if it's rejected they work their way down the journal "food chain" until one bites. It's a slow and frustrating process, though, with each submission-and-rejection cycle taking months. Every time you submit to a different journal you have to rewrite your paper to their word length, house style, etc.

    Was it Plos1 that that CDC null XMRV study was published in, though? That certainly got a lot of coverage! Just getting it covered anywhere, and sending out a press release, might do the job. It's a really hard decision for a scientist to make though, who has come up with a really important finding, to have to consider giving up on publishing in a good journal and putting it out somewhere trashy.
     
  10. jenbooks

    jenbooks Guest

    Messages:
    1,220
    Likes:
    114
    Something doesn't compute for me here. If XMRV were the cause of disease, why would it manifest so differently in different individuals (CFS, prostate cancer, autism). In addition, autism tracks with the astronomical rise in toxic vaccines, and in toxins generally. If XMRV causes disease, why do family members remain healthy? Much remains to be determined. Perhaps it's a necessary cofactor for some.
     
  11. Esther12

    Esther12 Senior Member

    Messages:
    5,369
    Likes:
    5,848
    Maybe they're waiting for the blood group to report, and don't want to publish a paper when it could be announced in one months time that it's all down to contamination.

    It would be pretty cowardly if that was the case. Let the data speak for itself.
     
  12. Valb626

    Valb626

    Messages:
    39
    Likes:
    0
    Problems in getting papers published in existing journals is why new journals get started. I hope we see one eventually.

    I don't know the in's and out's of why this occurs at some places and not others, but some universities, as well as some researchers, make their working papers available on-line before they are submitted for publication. I doubt this happens when there are potential patents involved in something.
     
  13. FancyMyBlood

    FancyMyBlood Senior Member

    Messages:
    175
    Likes:
    69
    Why do some people get sick from EBV while others remain healthy? After all it's in present in the blood of 50%+ of all people. Why do some get sick from the influenza virus and others can still be working? Why do some people get cancer from smoking while others stay healthy till 90+?

    Like you said, there are no real answers at this point besides speculation. That's why it's very important to quickly resolve issues the zero/zero vs. XMRV+ studies. Only then we may be able to get an accurate answer.
     
  14. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    Wow, really?? But why on earth would they do that? Can you provide some more info, maybe some links etc. on this?
    I mean what better thing could happen to a paper than to be the first to publish a study that might have discovered the cause of a so far not understood illness that affects so many people? I don't get it.
     
  15. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    Yes, i think it's very good for us that his and Lo's reputation are on the line as well.
     
  16. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    507
    Los Angeles, CA
    We're all getting viruses all the time. Every time you breathe in you are breathing viruses. Most of them don't infect you; some of them try to infect you and get fought off by your immune system; some infect you but don't make you noticeably sick; and then a few might actually make you sick.

    Quiz: what percentage of people infected with polio in the 20th century epidemics developed a paralytic illness?

    (a) 100%
    (b) 60%
    (c) 20%
    (d) 1%
     
  17. Stone

    Stone Senior Member

    Messages:
    371
    Likes:
    6
    NC
    I'll take infectious diseases for 500, Alex

    What is 1%?
     
  18. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    I think that's just reality. Journals feel they have their reputation to protect so they are going to wait until independent labs verify the WPI's findings before they publish anything from them. They are scared off by the idea that contamination plays a role. I imagine that would be true for any lab that publishes a finding which is having trouble being validated. Once their findings are validated I imagine the journals will flock to them - because then they will be the hot item in town.

    Dr. Singh alluded to the publication problem at the OFFER conference: I asked if because XMRV was a hot subject her paper would be published quickly - she said it was just the opposite - it will take longer because the journal is going to be very careful with it and subject it to more reviews.
     
  19. Sasha

    Sasha Fine, thank you

    Messages:
    8,720
    Likes:
    7,988
    UK
    I wish the same were true for the negative studies! If contamination is the journals' worry with the positive studies, then patient selection and sample handling should be their worry for the negative studies but that doesn't seem to be stopping the publication. Or perhaps now it is? Things seem to have gone quiet lately.
     
  20. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    It's very good for us and that Hansen is in there too. Lo and Alter are working on sequencing what they found and isolating the bugs and identifying and other things. Once they do all that it will make a big difference.
     

See more popular forum discussions.

Share This Page