Monday, August 2, 2010

"Change is coming" - Amy Dockser Marcus video

The Patient Advocate received an email this evening from his friend Jay Anania. Jay sent me the link to this youtube video of Amy Dockser Marcus. A few posts ago the PA tried to express his feeling about this reporter's "specialness" in regards to her writing about ME/CFS. While realizing his shortcoming in actually doing this, this video speaks directly to the issue. No interpretative expression is needed. Here are her feelings - "from the horse's mouth". This video heightens and confirms the Patient Advocate's high regard for her. She is in the right place at the right time.

3 comments:

  1. Thank you Christopher. Now we know why she is so passionate about helping give a voice to those with rare diseases. She really is a special woman!

    Also...just to let you know this is the FIRST site I open every single morning. The way you write reaches right into my heart and I thank you for bringing news to us and giving us your thoughts along the way. Thank you.

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  2. Thank you for posting this. It moved me to tears. Though perhap we with ME suffer from a different disease we also suffer from the same neglectful disinterest from the medical community.

    This is the heart of the matter which led to her short presentation being able to bring me to tears. Neglect, suffering and death, the shared experience of those of us unlucky enough to come down with little understood nor cared for diseases.

    I am sorry for this reporters loss. But I am grateful for her zeal, that she cares for others though her own mother is gone.

    In us she sees her mother's struggle. In us she relives the frustration of a medical system that is so much like highschool, you're either part of the popular medical clicks or you're viewed as an outsider, not worthy of their time or societies collective government funds for research.

    The bible says "The heart is the seat of motivation" Certainly this fact is being proved true as the reporters heart is moved to find out if this XMRV retrovirus is responsible for many unexplained diseases, ME/CFS one of them.

    Her pain from the sad experience she watched her mother suffer makes it a certainty that as long as her employer allows she will be reporting on the unfolding story of XMRV and it's realtion to disease.

    I am happy ME/CFS will be along for the ride. And will be elated for the healing feelings it will bring her heart if she is indeed the voice that cried out in the wilderness of media when XMRV is exposed as a culprit in misunderstood, uncared for conditons such as cancers & ME/CFS.

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  3. She does seem to be an incredibly talented and compassionate woman, and I feel honored that she has chosen to cover our plight. I just hope she is given the reins to do justice to the ME/CFS story.

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