Scary Take on NIH/FDA XMRV Study from Dr Teitelbaum

Discussion in 'Fibromyalgia Main Forum' started by Elisa, Jul 24, 2010.

  1. Elisa

    Elisa Member

    Excerpted from Psychology Today online (full link below):

    XMRV and CFS-A 2nd Positive Study Fuels More Controversy
    The truth about XMRV controversy

    Published on July 23, 2010

    "Given the controversy and implications, it is reasonable for the government (in this case the NIH and FDA) to take a bit of time to review both the positive and negative studies before release, though this is understandably very frustrating for patients. Unfortunately, the NIH and CDC have generated enormous (and I suspect often well deserved) mistrust in the CFS/FMS community. The question is whether the study review will be fair and honest, or if the data will be buried to protect insurance company profits. Unfortunately, since they have now quickly released the "XMRV negative" study for publication and are still holding back the "XMRV positive" study, ****it is again leaving many with CFS feeling like the government is ready to throw them under the bus again.**** It would have made more sense to have waited until the review was complete and then release both studies simultaneously."

    Full article:
  2. simonedb

    simonedb Member

    thanks for this
  3. spacee

    spacee Member

    At least Psychology Today was willing to put forth that our community is upset.

  4. Elisa

    Elisa Member

    Thought it was interesting...bits and pieces of the truth keep coming out.

    God Bless,

  5. bigmama2

    bigmama2 New Member

    ditto what aussiewoman said.

    SEXISM. I have thought this for years now. If cfs predominately hit men, it would be a whole different story.

  6. skeptik2

    skeptik2 Member

    And look at all the researchers now hunting high and low for it!

    Gee, wish I had been born with a prostate, LOL!

    Sexism for sure....and pity the men who were also incorrectly
    labeled with 'hysteria" and didn't even have a uterus, WOW!

  7. simonedb

    simonedb Member

    agree to agree, its definitely part of it!

    if things go well the next couple of months for xmrv research etc I want to start building a campaign of information to get out to the mental health community about the damage the mistreatment, lack of treatment for cfs/fm has done to some folks and that it has to stop now.....overtired right now can't articulate well right now but will get back to you guys down theline for feedback, ideas

    but I dont feel like i had ptsd to start with 20years ago but I feel like I got it in some ways from trauma of dealing with ignorant unhelpful medical system sometimes....
  8. arabella1776

    arabella1776 New Member

    Elisa, there is a new forum which you may want to check out. Just go to and send in the very short form. There are a number of very bright people on the forum who talk about the science involved with ME/CFS. You can read the News and Research section without joining, but if you want to post or read the other sections, you would need to join.