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 and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
Discuss the article on the Forums.

First International XMRV conference

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

  1. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Yes, lie down, you always win in the end when you do that. Really great advice. No one do anything. Nothing to see, move along. XM..... don't bother to know, better to be a sick hermit. The system works, and always has, your energy will return.
  2. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    Rather than get in the way....yes.

    We've already had 2 researchers in the field saying they are bothered by the 'advocacy' letters. One, who could ultimately have been won over has stated explicitly that she wants nothing to do with CFS ever again.

    Even Judy M had to ask for people to let her get back in the lab at one point because she was getting too many emails.

    Take a look around...there are tons of top researchers working on this. It's happening and it will continue to happen. This paranoia is getting in the way.

    Seriously.
  3. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Yes, lie down, you always win in the end when you do that. Really great advice. No one do anything. Nothing to see, move along. XM..... don't bother to know, better to be a sick hermit. The system works, and always has, your energy will return.
  4. judderwocky

    judderwocky Senior Member

    Messages:
    327
    Likes:
    3
    I mean i guess the logic makes sense... if you can't do anything else you might as well shoot yourself in the foot. I hear wolves chew their feet off if their caught in a trap.
    I'm not meaning to be rude... here ... what im trying to say ...trying to find an anology for... is people are getting desparate... i FEEL you on that.... but if we start attacking our own, or getting enraged its going to make us make bad decisions... that we can't undo. ...

    lets just take a few steps first... we can wait a day or so for the press release to come out and figure out then if anything has changed. the conference isn't for a while right? its not happening tomorrow and there will be other conferences after this... lets just take a few days to get some feedback about how these actions will reflect on everybody involved...
  5. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    I don't see anyone getting enraged with the organising committee. It is only a request.
  6. SOC

    SOC Moderator and Senior Member

    Messages:
    4,959
    Likes:
    5,507
    USA
    Yes, waste all your ammo shooting at shadows, or worse, your allies. You always win in the end when you do that.

    Don't put words in our mouths. No one but you said, "don't bother to know". No one but you said, "better to be a sick hermit". No one but you said, "The system works, and always has".

    Call the WPI media dept if you're so sure you're helping. If they agree that you are improving the situation with your campaign, more power to you -- go for it.

    But it's time to quit harassing people whose viewpoint is different from yours.
  7. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Who ever said that you said that?
  8. Robyn

    Robyn *****

    Messages:
    180
    Likes:
    0
    xxxxxxxxxxxxxxxxxxxxxxxxxxx
  9. judderwocky

    judderwocky Senior Member

    Messages:
    327
    Likes:
    3
    I guess she was only implying that about me. lol.

    But in all fairness V99... she did say "our"

    You keep trying to personalize this. To make me or somebody else responsible for the situation. Because you are unable to deal with this.. you making it into a me vs. you issue. Just calm down and realize you are attacking people on your own side.

    Attacking me for being honest about the way these actions are going to be perceived is fruitless.
  10. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Again, who ever said you put that? And where is the 'our'?

    Anyway, Mikovits has been stopped from presenting at the XMRV conference, and Ruscetti is kindly stepping in. They are trying to remove the WPI from XMRV research. If you want this changed, ask the committee.
  11. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    As everyone knows, I could not agree more with V99. As for the researcher (McClure, I believe) who said she wanted nothing more to do with XMRV or CFIDS/ME, well, she was part of the failed paid for article and got snookered by Weasel and then got nailed by the public, other researchers, the sick, etc. She KNEW this was going to damage her career and reputation - dealing with Weasel on a very controversial topic. She was NOT going to be on our side at any point - so give that one up.

    We have done very little in the last 30 years - minus those true, hard-core, year-in-year-out advocates. The rest of us (ME very much) have done little for ourselves. We complain to eachother but not to those that need to be complained to - the media, government, public, and so on. We have done so very little in representing ourselves. I know we are so sick that we can't go march or travel or do anything physical - I know that, but we do have the internet and our ability to spread the word and beat on all those that need to be beat on over and over and over.

    As for Dr. Klimas, Mikovits and others on our side, yes I am sure we are bothering them too much and not allowing them to do their jobs in the labs. That needs to end and only a few people with very solid contacts (almost personal contacts if not personal) should be bothering them via email/phone. So, leave OUR researchers alone.

    NOW is the time to fight. NOW. Not just wait for someone else to do something. WE must be the big voice and we must be the ones bringing this disease and deadly virus out into the public.
    Our "efforts" (minus the real hard-core advocates) have gotten us nowhere. I and it appears, V99 (the WARRIOR ME GODDESS) know we must really fight NOW.
    Do what ever you can possibly do. But please, do something, anything ---
  12. judderwocky

    judderwocky Senior Member

    Messages:
    327
    Likes:
    3
    still operating under the delusion that your words will change anything.
  13. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    34
    Texas
    Act Now Please

    http://www.facebook.com/pages/XMRV-...clinical-and-public-health-impli/421411181796

    1st International Workshop on XMRV: Pathogenesis, Clinical and Public Health Implications Please Act Now

    The 1st International Workshop on XMRV , co-sponsored by the NIH and organized by Virology Education, will be held on September 7, 2010 at the National Institutes of Health in Bethesda, Maryland, USA. The objective of this scientific workshop is to assemble an international group of scientists, physicians and epidemiologists to present and discuss the latest XMRV studies, including topics such as virus-host interactions, cell type tropism, mode of transmission, animal models and the efficacy of current antiretroviral drugs.

    While we at XMRV Global Action are very excited about the workshop, we believe the list of invited speakers is incomplete and it is imperative that Dr. Judy Mikovits of the Whittemore Peterson Institute be among the invited speakers. We feel that it is incomprehensible to omit the leader of the team that showed XMRV to be a new human exogenous retrovirus firmly associated with ME/CFS.

    The list of invited speakers as of today, July 22, includes:

    Dr. Kate Bishop, NIMR, London, UK - Host Restriction Factors
    Dr. Sam Chow, UCLA, Los Angeles, USA Viral Integration
    Dr. John Coffin, Tufts University, Boston, USA Basic Virology
    (Keynote lecture) Dr. Eric Klein, Cleveland Clinic, Cleveland, USA Prostate Cancer
    Dr. Robert Silverman, Cleveland Clinic, Cleveland, USA Animal Models
    Dr. Ila Singh, University of Utah, Salt Lake City, USA Pathogenesis
    Mr. William Switzer, CDC, Atlanta, USA Assay Development
    Dr. Frank Ruscetti, National Cancer Institute, Frederick, USA Chronic Fatigue Syndrome
    Dr. Ellen Sparger, University of California, Davis, USA Vaccine Development
    ( http://www.virology-education.com/index.cfm/t/Program/vid/1FFCB7B8-FB88-C1D2-92C420E3BCEB0FB0 )

    We are urging all our members to send an email to the Science Committee contact, Wilco Keulen wilco.keulen@vironet.com from Virology Education, and Dr. Francis S. Collins francis.collins@nih.gov, Director of the NIH, to request that an invitation be extended to Dr. Judy Mikovits as a featured speaker. We also encourage you to send this message on to your friends and family. It is up to our community to ensure that ME/CFS and XMRV continue to be an important part of the conversation.

    Below you will find a sample letter that you are welcome to use.

    Thank You!

    (sample letter)
    To all involved in the 1st International Workshop on XMRV,

    Congratulations on mounting the 1st International Workshop on XMRV. Bringing researchers and medical professionals together in this way is a critical step in understanding XMRV and its impact on public health and in moving the state of the science forward.

    When this workshop was first announced I noticed Dr. Judy Mikovits was included as part of the workshops Scientific Committee. However, I was very surprised to see that she was not one of the speakers, let alone not the keynote speaker.

    It was the October 2009 publication in Science of Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome that reignited and expanded global interest in XMRV as well as the role it might play in disease after its initial discovery in some prostate cancers by Silverman and Klein et al in 2007.

    This paper, linking XMRV to ME/CFS, was authored by scientists from the Whittemore Peterson Institute, National Cancer Institute and the Cleveland Clinic. The National Cancer Institute is represented by Dr. Frank Ruscetti and the Cleveland Clinic is represented by Dr. Robert Silverman. However, Dr. Judy Mikovits from the Whittemore Peterson Institute is nowhere on the program. The omission of the leader of the team that showed XMRV to be a new human exogenous retrovirus firmly associated with CFS is incomprehensible.

    Furthermore, while I welcome and encourage the involvement of the CDC in research into XMRV, Mr. Switzer, the guest speaker on Assay Development, to date has been unable to detect XMRV in any blood samples. While exploring why methods do not work contributes valuable information to the field, so does information on methods that do work.

    The original Science paper, along with Response to Comments on "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome on methods of detecting XMRV, demonstrate that Dr. Mikovits and Dr. Ruscetti are the leaders in this area right now. They have published studies detecting XMRV in blood and other studies have corroborated these findings. Drs. Mikovits and Ruscetti should also be presenting on "how to find XMRV and Assay Development.

    I do not believe the stated objective of the 1st International Workshop on XMRV to assemble an international group of scientists, physicians and epidemiologists to present and discuss, in a public forum, the latest XMRV studies can be accomplished without including Dr. Judy Mikovits of the Whittemore Peterson Institute among its scheduled speakers.

    I will be following this conference schedule with great interest as it develops. I request, and strongly urge, that Dr. Judy Mikovits be invited to be an important part of this conference and its presentations.

    Sincerely,
  14. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    I swore I would never "fight" with anyone on this site

    And I aim to keep that promise. However, Judder, you are not playing fair with V99. She is being tenacious and is on the attack and I respect and appreciate that in her very, very much.

    I ask that you both leave eachother alone. Judder, please no more comments directed at V99. She is being a hard-core advocate and we must have people like her or we get no where - and we have been getting no where for the last 30 years.

    Again, knock off the personal comments and deal with the situation. This is a critical issue to V99 and ME as well. If we don't go after them each and every single time, they nibble away and then they win.

    V99 will do as she sees fit and I am certain that her methods will be super careful and mindful of the whole situation - including all your arguements. I too have sent emails to a number of people about this situation including the workshop people. But, being an American, I have not been as "ultra gracious" as the Brits - tactful but straighforward and forthcoming. And I do expect my questions for them to be responded to, even if I have to get on the phone on Monday (a good idea, think I will). If US Federal money is being spent on this workshop then I, as a taxpayer, have a right to know what the hell is going on with the workshop. I have also emailed the heads of the DHHS, NIH, FDA and CDC. I want them to know what is going on IF they bother to read their own emails. And I am not going to stop emailing the Federal people as I am the taxpayer and THEY WORK FOR ME (and all US taxpayers). And as for V99 and all others being non-Americans: what happens in the US at the CDC and other Federal health orgs affects what happens in their own countries. God knows the Brits have a God-awful fight on their hands with all the sociopaths damaging ME research and the ME sick. I would hate to know the true numbers of suicides from ME in the UK because of these sociopaths.

    So, leave V99 alone - take me on, I've given you a whole bunch of things to get testy over. However, again I don't fight with others in the CFIDS community so you won't get much out of me.

    With respect for the outstanding efforts you have made in making this site better informed - Muffin.
  15. judderwocky

    judderwocky Senior Member

    Messages:
    327
    Likes:
    3

    I am done with this. you are beyond help. pushing this campaign is not what will help them. call them if you want their word on it. you are not listening to reason.
  16. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    So, basically muffin, you are asking judderwocky to stop commenting because his position is different from yours and V99's.

    This campaign you guys are on is going to have a whole bunch of great scientists getting loads of correspondence. Some of which will be decent and respectful, some of which will be rude and inflammatory.

    The net result is that you will alienate the very people who we want to get on our side.

    I am commenting because your actions will ultimately affect me. The fewer scientists we have taking on the CFS/XMRV question, the longer I will have to wait before causation and treatments are established.

    Please stop annoying and scaring the best researchers in the world!!!!! For god's sake.

    Judy M made careless comments and for that reason she is not up to the standards of this workshop. Period. No conspiracy to "shut out" the WPI.

    Let it go, please.
  17. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    34
    Texas
    Please Act Now

  18. judderwocky

    judderwocky Senior Member

    Messages:
    327
    Likes:
    3
    They no longer care about that.

    They have no connection to research. No clue of how badly they are going to screw everything up for the WPI and they just keep rollin along cuz they don't realize they've shorted all their brain cells out.

    For God's sake wake up and smell the coffee you people are NOT NOT helping. You aren't being activists by reposting this to people your making a delicate situation EVEN WORSE.

    Your inability to read between the lines and your inabilty to understand the complexities of the situation is precisely why you need to back down immediately.

    Do you not understand how selfish you people are being in this? do you not understand?

    You are going to look like a bunch of crazed cows running into an electrical fence... THAT is how seriously you will be taken.
  19. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    No. I am not telling or asking anyone to do or not do what they think is right. I asked Judder to stop with the back and forth with V99. I think I was clear about that and quite diplomatic about it as well.
    Sorry, but I am going to do what I believe is the right thing to do. You and Judder and others do what you believe is the best thing to do - apparently not fighting this one.

    I got an email response from an idiot at the Emory Mind-Body program that stated that we CFIDS/ME sick were fighting with eachother and that weakened our arguements, etc.. I responded that was not true and that we were fighting against Reeves and the waste of the CDC/CFS program. Well, that idiot was correct. We are fighting eachother and this leads to a "divide and conquer" situation and we can not afford that situation at this time. Particularly at this time.

    And I too am done with this topic. We shall see what comes out of this workshop.
  20. judderwocky

    judderwocky Senior Member

    Messages:
    327
    Likes:
    3
    You can do whatever you want. You're just going to make everyone look bad doing it.

    GROW UP A BIT. Activism affects the WHOLE MOVEMENT. ITs not JUST YOU.

    All you are doing is chasing emotional release. You're so worked up over CFS issues you're just looking for a "Fix" to keep you going. Calm down. This committee is NOT a problem.

See more popular forum discussions.

Share This Page