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!
Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Article: CDC Chief Unger Pledges to 'Restore Trust' - Agrees to Meet with ME/CFS Reps

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 17, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    649
    Likes:
    993
  2. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,203
    Likes:
    1,535
    Australia
    Why is funding #8? Funding needs to be #1. With the recent CDC paper showing huge economic costs, I cannot see how they can deny the fact that we need to increase federal research funding to $100+ million PA if it is to be funded in line with other medical conditions. I will do an in-depth comparison of published economic costs and NIH funding if need be (if no one else does it..).
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    I agree - for me - funding is always #1..
  4. Esther12

    Esther12 Senior Member

    Messages:
    5,088
    Likes:
    4,856
    To regain my trust they need to appologise for the Nater personality study and the way it was promoted. Or defend it honestly, on it's own terms.

    If they're really so clueless that they cannot recognise the active harm that does to the psychosocial setting of petients then they have no place doing any further psychosocial research.
  5. kurt

    kurt Senior Member

    Messages:
    1,132
    Likes:
    174
    USA.Earth
    I agree that funding is critical, but believe it is unlikely to flow our direction until the mother of all problems with CFS is corrected, which is the stupid name of this totally disabling neuro-endocrine-immune disorder.

    START WITH #6.

    And the good thing about starting with 6 is that it does not cost much money, and right now the CFS program at CDC is a pretty low-budget operation. So we have to be realistic, they can not do much on our wish list right now, but they can fix the name they branded us with, take that 'kick me' sign off our backsides.

    Once we have a credible title for this disorder, many of the other items on that list will be easier to work out.
  6. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    505
    Los Angeles, CA
    The division of functions between the CDC and the NIH seems to get a little fuzzy at times. Original research has never seemed to be the CDC's strong suit: they are supposed to be controlling and preventing diseases, and given their track record on research, one would think the best role for them is to implement policy based on science funded by the NIH. Also the CDC's budget is peanuts compared to the behemoth that is the NIH.
  7. Nielk

    Nielk

    Messages:
    5,073
    Likes:
    4,603
    Queens, NY
    I, too thought that the CDC has a low budget to work with but, I looked it up and their budget for this year is
    8.8 billion dollars.

    It's a matter of distribution.

    Where will the money go??????????????????????????????????????
  8. LaurelW

    LaurelW Senior Member

    Messages:
    552
    Likes:
    91
    Utah
    "they can fix the name they branded us with, take that 'kick me' sign off our backsides."

    I'm with Kurt. Change the name and many other blessings will flow.
  9. SOC

    SOC Moderator and Senior Member

    Messages:
    4,966
    Likes:
    5,514
    USA
    Thank you, Urbantravels.

    I have been trying to say this for years -- the CDC is set up for policy implementation, not original research. They've shown that they don't know how to do original research, at least in ME/CFS. We shouldn't be surprised as that isn't the CDC's original mandate. We need to get them out of research in ME/CFS entirely. They've got a bad case of mission creep that should be stopped immediately.

    Let them change the name and do the necessary PR to improve the public perception and understanding of our illness -- THAT'S more within their mandate (and budget).
  10. Francelle

    Francelle Senior Member

    Messages:
    444
    Likes:
    15
    Victoria, Australia
    When I went to do the survey it stated that I had already done it. I've never even seen these nine points before - are they relatively new?

    Can others check that the survey is working for them?
  11. Nielk

    Nielk

    Messages:
    5,073
    Likes:
    4,603
    Queens, NY
    It worked for me this morning.
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Getting the government to take action, including tests and clinical trials (research) on XMRV was a major theme of this press release from PANDORA: http://www.pr.com/press-release/258171

    PANDORA told CFSAC members in October that the XMRV finding should make all government agencies change the merry-go-round, pass the buck, that has been going on with this illness for decades. Marly compared it to how HIV changed things for AIDS. She listed many of the same points in the above press release.

    Dr. Unger's department does not do XMRV research. But, the department of CDC that does XMRV research may get samples from her. That is why getting the research criteria right is so important. We have seen this with British studies.

    Because she was new to the position, the goal of the letter was to discuss the action points that are under her authority.

    Also, to our understanding, the area of CDC that is doing XMRV research is working in the blood working group with Mikovits, NIH and others.

    Bill Switzer, who is seen here: http://www.cdc.gov/about/opportunities/careers/microbiologists.htm, is the author on the CDC study that did not find XMRV.

    Tina
  13. acer2000

    acer2000 Senior Member

    Messages:
    551
    Likes:
    177
    Where there is smoke there is fire. CFS presents like an infectious illness that goes chronic. Fund studies that use patient cohorts from the most trusted CFS docs to find the cause. Let the experts in the field do the work. Thats the only thing that is important. Once a cause is identified we can focus on treatments.

    No more psychological studies! And no more studies of downstream effects! Keep your eyes on the prize. Find the cause!
  14. acer2000

    acer2000 Senior Member

    Messages:
    551
    Likes:
    177
    Also, that link to the survey is tied to a session from someone who already took it. What is the real URL for the survey?
  15. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    838
    UK
    Jut to say how nice it is to see an abrupt break from past history for you. We are hoping/there are signs of a "culture" change here too at 2011, despite the well known (few) hard core psychobabblers.
  16. laura

    laura Senior Member

    Messages:
    108
    Likes:
    4
    Southern California
    I also could not access the survey. I tried repeatedly and it says that the survey was already taken.

    Could the correct link be posted?

    Thanks
  17. Forebearance

    Forebearance Senior Member

    Messages:
    360
    Likes:
    99
    Great Plains, US
    I would take the survey, too, if I could. I couldn't find it on PANDORA's website.

    To me, the most important thing BY FAR is #3. I am most scared of the damage that will be done to CFS research by the CDC promoting an incorrect definition of the illness. That would be cheap to change, too, wouldn't it?
  18. CBS

    CBS Senior Member

    Messages:
    1,356
    Likes:
    216
    Western US
    The way you fix the name is to get rid of the 75+% of the patients who suffer from MDD and not ME who are drawn in with the CDC definition (that explicitly excludes those of us with documented serious neurological and infectious/immune problems). It's not just ironic, it is a crime that patients like me could not get into a CDC CFS study after nearly 17 years with this disease precisely BECAUSE I've developed too many serious complications. Seriously, How fucked up is that?!! And they wonder why they can't find anything.

    We need to stop focusing on fatigue. My neighbor has leukemia and no one tries to pretend that fatigue is her primary issue. Even the term ME/CFS used by the NIH is a weak compromise that, depending on the definition, can actually includes two mutually exclusive conditions.

    NO CFS for M.E!

    The CDC wants a relationship and my respect? They can start by acknowledging that I exist!

  19. LaurelW

    LaurelW Senior Member

    Messages:
    552
    Likes:
    91
    Utah
    :victory:You go, Shane!
  20. Marty

    Marty Senior Member

    Messages:
    117
    Likes:
    17
    I'm afraid

    I'm afraid that people who write long letters think this is an information campaign instead of a war. I explained this briefly and showed my support for PANDORA here: http://forums.aboutmecfs.org/showthread.php?10008-PANDORA-meeting-with-CDC&p=157696#post157696

    There is no way in the world I would "trust" the politics of CDC (can't "restore trust" because it was never there). I hope PANDORA will go in there and lay out the terms of surrender, which ultimately means the removal of Unger and replacement with someone who does not believe the psychobabble and who will aggressively promote the biomedical research. They must tear down that website immediately. They must do nothing less than a complete turn around and take the "kick me" sign off our backs (as someone said). There is no "discussion" on these points.

    I hope Marly marches in there with blood in her fist and her eye doubled up! Er, blood in her eye and her fist doubled up.

See more popular forum discussions.

Share This Page