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Ehlers-Danlos Syndrome Conference notes 2012

Discussion in 'Other Health News and Research' started by Allyson, Jan 16, 2013.

  1. Allyson

    Allyson *****

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    http://www.ednf.org/index.php?option=com_content&task=view&id=2219&Itemid=88889285

    Videos of Ehlers-Danlos syndrome international conference 2012

    bing.com/videos
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  2. MishMash

    MishMash *****

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    Ally,
    Thanks for introducing this new thread. Still the most likely cause of the numerous symptoms we call ME/CFS. CFS is a symptom of a wider condition. Let's start looking now. It's probaby EDS related.

    I noticed that the speakers at the ED National Foundation conference included:

    - Andrew Smith, MD • Mast Cell Disorders

    - Alan Pocinki, MD, Internal Medicine, George Washington Hospital • Sleep Disorders in Ehlers-Danlos Syndrome

    - Clair Francomano, MD, Director of Adult Harvey Genetics program at Greater Baltimore Medical Center, associate professor Johns Hopkins • Pain Management in Everyday Life.

    Seeing any of the above practioners are likely to be more beneficial for patients then the current group of self-proclaimed guru docs.
    Allyson likes this.
  3. Allyson

    Allyson *****

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    Thanks Mish,

    I had been hoping to find the proceedings of the conference that my doc had mentioned.... with abstracts or published papers; I will ask him the title/s and speakers in February when I see him;
    anyone who reads these links and has comments that would be good - or finds any better links - some are better than others

    i put them all up here so they didn' t get lost but will remove any that arent appropriate

    i was intrigued to see that EDS has our "unrefreshing sleep" as a symptom - had never heard of it outside ME/cfs....
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  4. MishMash

    MishMash *****

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    The next EDS conference is in August, in Providence RI. http://www.ednf.org/ I might go and listen to the speakers. If it is anything like the last one, it will at least partially address dysautonomia, CFS, FM and other co-morbid conditions.

    Weak tissue structures definitely correlate with many ME cases. It is being passed over due to the fetish for a "viral pathogen" that seems to exist in our research community. ME/CFS is probably a symptom of a larger disorder.

    It would be nice if one of the speakers would combine "Empty Sella Syndrome" and "idiopathic intracranial hypertension" with the subject of EDS, as the the two go hand and hand, and are probably responsible for a large subset of ME patients.
    Allyson likes this.
  5. Allyson

    Allyson *****

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    Hi MishMash,
    thanks for that interesting info; that would be great if you could go; could you say a bit more about idiopathic intracranial hypertension as I have ever heard of that? What are the symptoms and signs, known causes etc please.

    Ditto for Empty Sella Syndrome if you have the time/ energy - totally new to me.
    Many thanks
    Ally
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