August 8th, 2018: Understanding and Remembrance Day for Severe ME
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Join the Rare Disease Clinical Research Network (RDCRN) today!

Discussion in 'Other Health News and Research' started by *GG*, Oct 20, 2012.

  1. *GG*

    *GG* senior member

    Concord, NH
    By signing up for this patient contact registry, you are furthering research and potential cures and treatments. Patients who participate in research make it possible for researchers create new studies and work for the improvement of all our lives.

    The RDCRN provides a Contact Registry that is patient populated. The registry collects contact information and self-diagnosis of people with rare diseases via the internet and it is a useful tool for researchers for recruitment for clinical trials and other projects.

    If you want to make a contribution to mitochondrial disease research, the absolute best thing you can do is participate in both registries. For information on the RDCRN and details on how to join,

    Join the RCDRN Patient Contact Registry NOW!
    1. From the highlighted links below, click on the link that best describes your diagnosis. If you are not yet diagnosed, scroll to the bottom of the list and choose
    "Mitochondrial Disease - Not Classified"

    2. After you have read and agreed to the Authorization, the Registry form will appear on your screen. This form asks you for information such as your (or your child's) name,
    address, birth date, place of birth, email address, or items relevant to your (or your child's) disorders.

    3. At the bottom of the registry form, click "Complete Registration" to send your information to the RCDRN.
  2. *GG*

    *GG* senior member

    Concord, NH
    Thought some people might be interested in this?

    August59 likes this.
  3. August59

    August59 Daughters High School Graduation

    Upstate SC, USA
    I'm all signed up on this site. Some of that information could be very interesting when it comes to mitochondria. As long as we all typically have this disease I can help but to believe that it has worked itself it to the mitochondrila system. If it is not I would be very surprised.
    When and if there is a treatment found it will envolve starting at the bottom with the mitochondria and correct or nourish them in a distinct way and move our way on up and move on to tthe next step and we will do what we have to do. It might be time antivirals at this point and I believe AV doses are going to be very individual and are going to have to be
    started low and go slow because some of us are much to sensitive to the AV. Could be a round of antibiotics at this point, but who knows now, but this cannot work as a self medicating person. There is going to have professional follow-up in here and probably quite a few lab test to be performed.
    Enough of me thinking to hard on this particular subject. It might be something else tomorrow

    My eyes are crossing, so i bid you a good evening
  4. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    Long before I had any idea that I had CFS, I thought that there must be something wrong with my mitochondria and/or ATP cycle. I do not know anything else that would effect both my muscles and brain in the way they are effected. However, I have had NO medical confirmation of this. I don’t know that I can truthfully say that I have a mitochondrial disease.

    I am glad to know about this website. When I have time to look it over more thoroughly, it might be helpful in determining if I do or don't have a mitochondrial disease.

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