CFS Patient Advocate

Friday, August 16, 2013

Striker drugs or terrain modulation?

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Here in Minnesota, I try to escape the role of a patient advocate for a few hours and recapture my own reality. Often I go into the ...
7 comments:
Thursday, August 8, 2013

Laurel B.'s ME/CFS video

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Here is a re-edited version of Laurel B's fine ME/CFS video. Laurel has done a service for us all in making this essential video. . ...
2 comments:
Thursday, May 30, 2013

Moving a Severe ME patient

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I was at the recent FDA meeting. Whether it is this meeting or any other government meetings, no mention is ever made of severel...
4 comments:
Thursday, May 9, 2013

Mindy Kitei at the FDA

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6 comments:
Tuesday, April 23, 2013

Paul Cheney lecture - March 22, 2013

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Here is the first part of a Paul Cheney lecture given in North Carolina on March 22, 2013. It is entitled "Compassionate Use Treatme...
6 comments:
Sunday, March 31, 2013

Alexander Khoruts, M.D.

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I first read about Alexander Khoruts and his work a good number of years ago.  He is right here in Minnesota at the University of Minnesot...
1 comment:
Sunday, March 24, 2013

Jessica's Story - Severe ME

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Here is a video of Jessica, a young woman with Severe Myalgic Encephalomyelitis. Jessica has been bedbound for seven years. The video is ...
11 comments:
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About Me

consuegra
I am the patient advocate of my 40-year-old daughter. She is housebound in St. Paul MN with CFS/ME. This blog presents reports from several lectures or conferences. It also attempts to define, in my own way, the role of a Patient Advocate. The premise is simple. I make my observations in hopes that they might be beneficial to others, in the same spirit of generosity that so many others' comments have been useful to me. These entries are presented for information only purposes. In no way should they be taken as medical advice. I am not a doctor and I do not want to be one.
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