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!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

First International XMRV conference

Discussion in 'Action Alerts and Advocacy' started by Kati, Jul 21, 2010.

  1. judderwocky

    judderwocky Senior Member

    Messages:
    327
    Likes:
    3
    yes... but in the end he is a scientist that studies retroviruses... he's been chasing monkey viruses for years in africa supposedly trying to show they cause disease.... in the end i think even his curiosity will win out... who knows, maybe it was just jealousy that blinded him... i mean, they basically showed what he couldn't ... a VERY strong link to a retrovirus and a mystery disease that had been studied for more than three decades... for an "upstart" research facility to do that has got to be.... humbling.... he's got to have wish he stumbled on it sooner...

    but he might have just been looking in the wrong places....
     
  2. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,043
    Sth Australia
    ***starts laughing madly*** This whole thread is enough to send someone almost insane.
    ................

    Take care.. the CDC will be adding arguementative to its CFS diagnostic criteria next :p
     
  3. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,043
    Sth Australia
    Muffin if there is an issue (which i personally believe there is).. i cant see how the WPI could get involved any more than what they already are.. that being to answer back privately and truthfully to any emails which have been directed to them, just saying that Dr Judy Mikovits wasnt invited to speak.

    They need to keep a scientific reputation.. and for them to be openly causing a riot.. wouldnt go down well at all with their peers at a time when they need to be getting a good reputation with their peers.

    The way i look at it.. this would be making them powerless to speak openly out. It will do no good to destroy a reputation they need to build up.
    Having an individual spokesperson for them.. would be the same as they talking publically themselves... damaging to their scientific reputation
     
  4. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,043
    Sth Australia
    "Abstracts Committees Contact Program Registration Workshop Information PrintBackProgram
    Please note, taking into account Labor Day on September 6, the program of the 1st International Workshop on XMRV will start in the afternoon of September 7.
    Invited Speakers
    We proudly present the following list of confirmed speakers for the 1st International Workshop on XMRV:

    Host Restriction Factors
    Dr. Kate Bishop, NIMR, London, UK

    Viral Integration
    Dr. Sam Chow, UCLA, Los Angeles, USA

    Basic Virology
    Dr. John Coffin, Tufts University, Boston, USA

    Prostate Cancer
    (keynote lecture) Dr. Eric Klein, Cleveland Clinic, Cleveland, USA

    Animal Models
    Dr. Robert Silverman, Cleveland Clinic, Cleveland, USA

    Pathogenesis
    Dr. Ila Singh, University of Utah, Salt Lake City, USA

    Assay Development
    Mr. William Switzer, CDC, Atlanta, USA

    Chronic Fatique Syndrome
    Dr. Frank Ruscetti, National Cancer Institute, Frederick, USA

    Vaccine Development
    Dr. Ellen Sparger, University of California, Davis, USA"
    ...............................

    LMAO.. MR William Switzer, CDC ... He's the only Mr among all the Doctors speaking
     
  5. judderwocky

    judderwocky Senior Member

    Messages:
    327
    Likes:
    3
    Assay development... thats an interesting way of putting it.... clearly they realize there is work to be done.
    I think also this might also refer to assay "mass" development.... which will be necessary if we are talking about testing 17million+ people.... i mean right now it takes a while for even the good labs to find it in a few hundred people.
     
  6. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,043
    Sth Australia
    I doubt that anyone here has been galvanized to speak on Dr Mikovits behalf.. Im speaking out strongly on this issue but i myself have never in my life sent Dr Mikovits an email (well not that i remember). Quite a few have emailed Dr Mikovits but are keeping the emails back confidential (I assume she may of said she wanted that???).
    ........................

    Everyone ignore this post.. i saw some time after i posted it that Cort had clarified he didnt mean to imply anything by what he'd said and ended up deleting that part of his post.
     
  7. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,043
    Sth Australia
    Hi George... i know your question wasnt directed at me, but i'd like to answer how i feel about it.

    I personally wouldnt ask Dr Mikovits about is she okay with advocacy in her name as the moment one does that.. one is then involving her in it!! I do not wish to involve her in it.

    Im not advocating on her behalf.. but rather advocating for a situation I see as just not being right.
     
  8. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,043
    Sth Australia
    This post i thought was great. You should make a new thread for it.. a quick run down of the facts. I saw someone post the other day who wanted a quick run down.. many are too sick to read lots to be up with what is going on and a quick post such as this.. helps to fill them in.
     
  9. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,043
    Sth Australia
    Conspiratory???? delay postive publications.... set deadline for abstracts before those publications can get published.....
     
  10. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,043
    Sth Australia
    :( :( :(




    Sadly we are already alienated and outsiders

    Thanks for your post filling us in.
     
  11. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,043
    Sth Australia
    Could you please start a new thread about this and someone put the email address of the new governer so we can start that CFS educating him.
     
  12. aruschima

    aruschima I know nothing

    Messages:
    113
    Likes:
    0
    Global
    Excuse me to bud in again here, but have you looked at the revised CDC site for CFS?
    You will be shocked !
     
  13. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    35
    Texas
    Yes, I saw it. It is infuriating.

     
  14. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    V99: Have to applaud your tenacity on this critical topic.

    V99: Have to applaud your tenacity on this critical topic. You really are quite the Warrior!

    And, of course I agree with your assessments on this entire situation. Now we need solid ideas on how to crack this nut and get Mikovits on the speakers roster as well as the public/media in (assuming that they are not allowed into this NIH co-sponsored- Federally funded- workshop).

    Are the other CFIDS websites/forums aware of this situation? Need to get those people aware and emailing/complaining to the officials and media. Aside from this, I cant think of what else to do.
     
  15. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    35
    Texas
    Yes, thank you V99! You are awesome. Muffin, we have been posting our request in several places on the web. Thanks for helping us spread the message. People are talking about it now and I hope that our community will not sit by and say nothing while wpi is pushed out of the xmrv topic all together.

    Thanks Muffin!
     
  16. Rrrr

    Rrrr Senior Member

    Messages:
    1,397
    Likes:
    264
    To everyone who is on the fence:

    Please email the XMRV workshop/conference organizers and ask that Judy Mikovits, the scientist who discovered XMRV's link to CFS, be invited to speak on a plenary at the conference. At present, she has not been invited to speak anywhere at the conference.

    Rrrr
     
  17. judderwocky

    judderwocky Senior Member

    Messages:
    327
    Likes:
    3
    please be aware. from my communication with them they do not endorse this. they do not believe this will help them.

    you are shooting them in the foot.

    i will say it again. Their media department, after I spoke with them, does not endorse this. they do not feel this will help them.

    you should wait for their press release. after mikovitz has traveled one is going to be published shortly. at least give it a few days to hear their official response... something could change by then either way. at this time i can only telll you what they told me...

    if you still feel then like this is the best course of action, nobody can stop you, but i think at this time it is very unwise.

    at least wait for the WPI press release... they have asked that much.
     
  18. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    And by extension shooting all us patients in the foot as well.

    I know many of these people didn't do their job for years, but now they are trying to. All these angry letters and whatnot are just causing more problems than they could possibly solve.

    Please everybody just relax with the knowledge that finally, It's getting done!!

    Let it happen.
     
  19. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    I don't know of anyone writing an angry letter, it's merely a request.
     
  20. SOC

    SOC Senior Member

    Messages:
    5,362
    Likes:
    6,423
    USA
    A friutless request contrary to the best interests of WPI (according to their media dept) from people who don't understand the system. Save your energy for the real fights.
     

See more popular forum discussions.

Share This Page