International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Article: Dr. Nancy Klimas Forms Neuro-Immune Institute on ME/CFS at Nova Southeastern University

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 9, 2011.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    The word I prefer is "body activity." Much better than "exercise." Tina
  2. CBS

    CBS Senior Member

    I agree 100%. And with all due respect for Dr. Klimas, I simply cannot see how 'exercise' is in anyway appropriate for the most severely ill. Several people have posted about the need to give up activities in order to exercise. For the severely ill it's not just "giving up activities." The most severely ill aren't able to do the basic "activities of daily living" and to suggest something that:

    a) means they'll have to give up some essential portion of their self-care,
    b) leaves them unreasonably vulnerable to serious setbacks if the slightest unanticipated demand (like having to reschedule a doctor's visit - could be a major logistics nightmare) arises doesn't make sense to me and,
    c) suggests to the uninitiated that if an expert like Dr. Klimas recommends 'exercise' them we all ought to be exercising

    The most severely ill amongst up do not need to increase their activity level in any way shape or form. They need REST. When a patient is experiencing severe autonomic neuropathy (check out this NIH link - sound familiar?), the last thing they ought to be doing is raising their HR, even temporarily (if you do, you are very likely to experience life threatening bradycardia/arrhythmia as a direct result). ME patients need to be given permission by their doctors to respect what their bodies are telling them.

    I agree that the study of CFS/ME is not a science of the most severely afflicted. If you aren't sure if you're amongst the most severely afflicted, you probably aren't.

    All of that said, I'll step off my soap box to thank Dr. Klimas for her years of dedication to ME and CFS patients (as well as GWS patients) and to wish her the best of luck in her new clinic.

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