Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
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Short Survey for Center in Southeast

Discussion in 'General ME/CFS News' started by usedtobeperkytina, Aug 18, 2012.

  1. Gemini

    Gemini Senior Member

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    years past Yale University Lyme Clinic had expertise, Lyme was discovered in CT. Don't know if that's still the case.
     
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    according to what I've read the Yale Lyme Profs are basically the Wessley school of Lyme. : (
     
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    Wanted to let everyone know the survey is now closed. We had over 1,300 respondents. The hospital has agreed to do a series of CME courses for their doctors and nurses on ME/CFS, fibromyalgia and Lyme. It will be in the spring of 2013. We are now discussing which experts to invite to do the courses.

    As for the center, the next step will be to get a resolution passed in the Alabama legislature. I am working with the legislative policy advisor to make that happen.

    A researcher has expressed interest in having the survey results published in a journal. We will keep you posted on that.
     
    WillowJ, SpecialK82, ggingues and 3 others like this.
  4. Liz

    Liz

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    Tina,
    Thank You for your efforts! I know I'm late in posting a comment, but I was looking to see if there was any new news. I did fill out the survey back when you first posted the alert -- just knowing that somebody is thinking of opening a center here in the southeast is hopeful. I'm in Atlanta and feeling particularly isolated these days. 21 years of CFS will do that to you. Many thanks again for your advocacy. Please post any way that ordinary CFS patients like myself might be of help.
     
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Thanks. I hope to have an announcement next week. I can tell you they have approved bringing in an ME/CFS expert for a CME course and have chosen the person and come to terms on the date and amount.

    However, they need to do the formal paper work, sign on the line. I think when that is done, we can announce the CME course instructor and date and hospital hosting it.

    Also, I am working with someone in state government to have a resolution passed urging all government agencies, hospitals, medical schools and more to work toward creating an NEIDs center and providing more medical provider education on NEIDs. We are finalizing the draft now.

    And that's all I know for now. I'll keep you posted.
     
  6. SpecialK82

    SpecialK82 Senior Member

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    Wow Tina, really good stuff! Your efforts are so appreciated, looking forward to an announcement!
     
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    SpecialK82 likes this.
  8. CallieAndToby

    CallieAndToby Senior Member

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    Survey is already closed. But I think this is great, especially since I live in the southeast and there just aren't many options here.
     
    usedtobeperkytina likes this.
  9. kauri

    kauri

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    Is this related to the center of excellence that has just opened in the Southeast, in Florida? Nancy Klimas is there. It's called Nova Southeastern?
     
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It is different I believe, Kauri.

    Sushi
     
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

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    No, Kauri, it is not. By the way, here is the flier announcing the first CME course. Woo hoo! They are advertising it heavily. They expect 70 doctors and nurses to attend. They will record it for doctors to watch and get CME credit later. Also, they said they would give us a recording. http://library.constantcontact.com/download/get/file/1098473133029-532/ME CFS Flyer (1).pdf

    Also, we have more information about it in PANDORA Org's newsletter: http://archive.constantcontact.com/fs156/1098473133029/archive/1112811166456.html
     
  12. Ember

    Ember Senior Member

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    Press Release: Alabama Legislators Support Creating a Clinical Center for Fibromyalgia, ME/Chronic Fatigue Syndrome and Lyme Disease Patients
    This press release probably deserves its own thread.
     
    WillowJ likes this.
  13. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Little Bluestem likes this.
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Well, here it is, the CME course given to 45 Alabama doctors and 24 others on May 7. Success!
     
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Great job! Thanks for all you did to make this happen. :thumbsup:

    Sushi
     
    WillowJ and usedtobeperkytina like this.
  16. concepcion

    concepcion

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    How is the doctor education coming along?
    Also, do you know if anyone has developed a set of protocols for dealing with ME/CFS patients, or for setting up an exclusive ME/CFS ward?
     
    Little Bluestem likes this.
  17. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Very old thread, but I have news.

    The survey turned into a study published online yesterday: http://www.vkingpub.com/Journal/FCM/421.html

    After Obamacare went into effect, the hospital system lost interest in creating a center. They did do a fibromyalgia CME course, but then balked on the Lyme one. I was starting to get the run around. And after two years of work, became frustrated at their telling me to find the interested clinician, without giving me any access to their network. Then, when I did find a clinician wanting to be a medical director of such a center, they sent me to meet with the new CEO of that hospital that knew nothing. I was having to make the case all over again. Then no response to emails.

    Meantime, I got news of a researcher that does fibromyalgia and ME/CFS research possibly moving to UAB in Birmingham. I worked with him and offered to help him find a clinician to screen his patients and to recruit patients. With that help, and UAB agreeing to his requests, he moved to UAB and brought two other researchers with him. Here is our announcement: http://www.uab.edu/news/focus-on-pa...ch-program-to-combat-chronic-pain-and-fatigue

    How very exciting!
     
    Last edited: Dec 8, 2014
    Little Bluestem and Sushi like this.
  18. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    :balloons: How very exciting, indeed! :balloons:
     
    usedtobeperkytina likes this.

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