CFSAC Meeting IV Quilt unraveled

Discussion in 'Fibromyalgia Main Forum' started by MicheleK, Jun 14, 2012.

  1. MicheleK

    MicheleK Member

    In testimony this morning at the Chronic Fatigue Syndrome Advisory Committee, Samantha Hodge Williams, who has CFS has been very sick. In the last 6 weeks she has been flat in a bed with an IV drip going. She could barely stay conscience and lost consciousness even with the IV's flowing fully non stop.
    She decided since she couldn't attend the CFSAC meeting because of being so ill she would send something that would get the point of how ill she is in front of the members of the committee.
    She made a quilt of the empty saline bags she has used just in the last 6 weeks. It was held up by patients and unfurled. Quite a moment in that room. Very moving and brought many to tears. Especially those of us who know that without our IV's we would literally be in living flat in our beds, unable to do the simplest things, which for Samantha means staying conscious!

    Incidently her insurance would not cover continuous IV therapy through homecare, so her family has paid $1,900 in the six week period just for the saline IV's alone! Incredibly unfair and that's just one treatment for her CFS!

    The government needs to get moving and Samantha's "quilt" made quite a visual impression. Why? Because that many IV's made it impossible not to see that this illness is a real illness and has serious consequences.

    Earlier Laura Hillenbrand's father (author of Seabiscuit & Unbroken) testified on the effect CFS has had on his daughter but also on him as a father and all her loved ones lives. He spoke not just to the board members but turned around many times to the patients and told them he would dedicate the rest of his life to getting progress made in the CFS arena. He also highly praised and commended Kim McCleary of the CFIDS Association of America for the new concept: Research Without Walls".

    It was a moving morning emotionally once the patients and their families testified on behalf of us all.