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An Open Letter to the Honorable Kathleen Sebelius

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Ember, Sep 24, 2013.

  1. Ember

    Ember Senior Member

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    https://dl.dropboxusercontent.com/u/89158245/Case Definition Letter Sept 23 2013.pdf
    Wildcat, Iquitos, Valentijn and 4 others like this.
  2. Roy S

    Roy S former DC ME/CFS lobbyist

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    This is great to see but I wonder how much it's going to do.

    An advisory committee for AIDS at least discussed resigning en masse to protest the poor response of the US government. Sorry for the dim memory but I think it was 1991 during a relatively short relapse for me while living on Capitol Hill. I haven't been able to find information on it online. It seems like the name of the woman chairing the committee was something like Dr. Osborn.
    Perhaps the CFSAC should consider doing that now after three decades of [insert appropriate colorful descriptions of what we've been going through]. It's the sort of thing that gets attention.
    beaker and Ember like this.
  3. Ember

    Ember Senior Member

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    Experts would risk being co-opted if they were to participate in the IOM study. The same could be said now of their CFSAC participation.
  4. Keela Too

    Keela Too Senior Member

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    Wow! This is fantastic news - and what a list of signatories too. I have heard 3 of these individuals speak and know how much they understand and support the ME patients. Notice of this will surely be taken?

    :thumbsup:
  5. Ember

    Ember Senior Member

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    Four of the seven clinicians in Dr. Unger's multi-site study have signed--Drs. Bateman, Klimas, Peterson and Podell. That should make for an interesting dynamic!

    I wonder what Drs. Lapp, Kogelnik and Natelson are thinking.
  6. Bob

    Bob

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    Wow!!! What an amazing letter. I don't remember having seen anything like it before. What a show of force!
    beaker, Wildcat, snowathlete and 2 others like this.
  7. Guido den Broeder

    Guido den Broeder *****

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    Why not accept the 2011 ICC-ME instead?
  8. Bob

    Bob

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    They do mention the ICC in the letter. Perhaps there wasn't a consensus for the ICC, at this stage, or perhaps they thought there was a better chance of getting the CCC adopted by the US authorities in the short-term? (I'm just guessing.)
  9. Keela Too

    Keela Too Senior Member

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    They do talk of re-defining as new information comes in from research - and I think this is an important point: It is the scientists involved in the studies who need to be considering the refinements to the definition. And it seems they are all happy to agree with the CCC as the starting point.
  10. Hugocfs

    Hugocfs Senior Member

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    This whole IOM contract doesn't make sense and doesn't pass the smell test. Something is rotten about it. Maybe I am being too pessimistic, but my gut feeling is that this open letter will be ignored and the contract will be pushed through. Time will tell.
    Shell and Nielk like this.
  11. Nielk

    Nielk

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    Wildcat and snowathlete like this.
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I wouldn't call her Honorable though, she had to be sued to let a young girl get a lung transplant from an adult, she was just going to let her die!

    Remember that, these people in the Feds do not give a crap about us, on the whole. FYI

    GG
    Hugocfs likes this.
  13. Nielk

    Nielk

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  14. Ember

    Ember Senior Member

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    Trust

    September 26th, 2013
    by Jennie Spotila

    “Thirty-five experts are now on record saying that no further study is needed to adopt the CCC. Advocates continue to press this point and are requesting that the IOM study be canceled. This document gives a superb summary of why.
    beaker and jspotila like this.
  15. jspotila

    jspotila Senior Member

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    Thanks Ember. I was just popping to share the link with everyone. I would love to hear what people think about the balance of trust, and how we make things better. The last month has certainly shocked me, and I know I'm not alone.

    http://www.occupycfs.com/2013/09/26/trust/
    beaker, Sasha and Ember like this.
  16. readyforlife

    readyforlife Senior Member

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    Thank you Jennie for a really great article TRUST.

     
    TRUST has been a long standing issue with US tax payers and the Government.
    People who are sick, tired, in pain, and trying to get help from the government are going to get frustrated.

    Look at any normal person who gets a kink in their neck, kidney stones, canker sores, shingles ETC. They all get frustrated and cranky from the pain and the inconvenience that it causes in their lives, but it soon goes away and they forget all about what they went through. My husband gets cranky if he is hungry and I always say that I have to go feed the monster. But when he eats something he is back to feeling good and happy.

    Now back to the CFS/ME person, we are always suffering 24 hours a day, year after year. And our Government wonders why we sometimes get pissed off in our letters and they feel they don’t deserve that kind of treatment. They are right they don’t deserve to be mistreated and neither do we!! I’ve never been nasty in any of the letters that I have sent out but I can see how people could snap.

    Enough is enough, It’s time for our government to listen and respond to our community. I’ve sent out a lot of emails these last few weeks and not one congressman or representative has emailed me back saying they received my email or acknowledged me in any way.

    Our government is a mess. The funding for research should have priorities, like people who are suffering with out medication first!! Here are a few things our government would rather spend their money on.

    It was recently revealed that the National Institutes of Health awarded a Boston hospital more than $1.5 million to figure out why nearly three-quarters of lesbians are overweight — calling the disparities a significant public health issue.

    Another waste of taxpayer dollars is a study of pictures of animals in National Geographic magazines. The cost: $227,437. The grant for “Picturing Animals in National Geographic, 1888-2008,” is designed to look at how the esteemed magazine has used animal photos.

    The US government via the National institutes of health awards a $181,406 to a researcher to spend on research into how cocaine enhances the sex drive of the Japanese Quail.

    $682,570 in grants has been awarded to the research efforts to study a project that has shrimp running on a treadmill.

     
    I’ve been sick for 20 years the last 10 have been hell. Each year that goes by something new pops up. The one thing that I always have said is thank god I don’t get headaches, like a lot of CFS/ME sufferers do. Well guess what has been popping up this year….HEADACHES. The constant pain and suffering is to much. I hide a lot of my suffering from my husband and kids because who wants to constantly hear how miserable you are…..no one.
    We need change and help. How many other diseases are out there that don’t have any kind of medication available. This is inhumane.
    beaker and jspotila like this.
  17. Ember

    Ember Senior Member

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    Has Dr. Bateman forgotten that she signed the open letter to Secretary Sebelius? She writes, “I respect the opinions and decisions of my colleagues on either side of this vigorous dialogue, but feel it might be helpful to explain why I made the decision to support the IOM contract instead of advocating that we adopt the CFS Canadian Criteria as our official clinical definition.”
  18. Nielk

    Nielk

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    It's very interesting what a letter or cal from CAA can accomplish. Yes, she did sign the letter of 35!
    beaker and Ember like this.
  19. Ecoclimber

    Ecoclimber Senior Member

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    I should add that not only patients should contact and write their objections and asking for a a resission of the contract to DHHS, The President, Representatives in Congress but friends, family members, basically anyone you can think of, should write. I noted that some patients have express difficulty even just writing a note but every bit helps. You could use the strategy of additional costs and more bureaucracy on an illness that has already been defined by the experts. This may sway some during this period of fiscal restraint.

    It also dosen't have to be limited to only patients in the United States but to patients worldwide as funding for scientific research will come to a standstill both publically and privately. There are 17 million worldwide patients that will be affected.

    With the shutdown of Congress, this couldn't happen at the least opportune time but maybe it was their strategy with Congress having no appetite to address an insignificant issue such as this.

    This link provides the definition by the IOM redefining GWS into CMI, Chronic Multi-Symptom Illness. Look familiar?
    http://www.med.umich.edu/1libr/aha/umcmi.htm

    If you know of any patients from other communities or forums such as the Gulf War veterans, Fibromyalgia, Lyme, you should ask them to notify their member to assist you in this campaign. It will affect them as well.

    Eco
  20. lnester7

    lnester7 Seven

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    Is this being picked up by news papers or press of any kind???

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