CFS Patient Advocate: Please vote for WPI

Patient Advocate

The job of Patient Advocate came upon me uninvited. I did not apply for this job, nor did I have any qualifications for it. I am a sculptor, not a doctor or a researcher. My daughter became sick with a mysterious fatigue illness and I was the obvious person to fill the job. Learning the job of a PA unfolds over time and there is no instruction manual. Certain ideas and thoughts can be transferred from former jobs and former lives, but much has to be learned from scratch. It is helpful in doing the PA job if you have a lot of time and a lot of money, as the solution to this disease takes a great deal of both. It would also be helpful to have an education in bio-chemistry, of which I have none. The most important qualification that a Patient Advocate needs is persistence and discipline. A PA also needs to remain objective and detached, even under the most extreme conditions. Every Patient Advocate has a patient. My patient is my daughter. The objective of this particular Patient Advocate is to make his daughter better. How to set about it is another matter, and turns out to be a complex and sustained set of illusive problems. While most doctors look at a broad and confusing set of symptoms and try to attach treatments to an entire cohort of partially differentiated patients, the PA’s problem is slightly different. The Patient Advocate, by job definition, is obliged to help one person - in this case, his daughter - his patient. Thus the PA is looking at one narrow and confusing set of symptoms, which makes his problem slightly easier.

Monday, June 6, 2011

Please vote for WPI

Keep voting everyday and fund research for neuro immune disease. WPI remains number 1 in their region.

1 comment:

AnonymousJune 6, 2011 at 12:05 PM
The ad i read about this contest said "fans" can vote for their favourite. I feel that a lot of the continued support the wpi have mimics the way sports fans are. Blind alliegance.

I suspect they'll (wpi) need all the charity they can get when they are stopped from selling xmrv tests when the bwg/lipkin studies are through. Then again Dr Mikovits started her career by proving everyone wrong, maybe she will do so again. My heart hopes she does but my brain thinks she won't.

I have had half of my life suffering from ME/CFS and i desperately need to get better so my life isn't completely ruined. The wpi could be part of the solution but i wonder how tainted they'll be by this xmrv situation if it doesn't work out.

I have as much right to an opinion as anyone is in this community even if others are unable to tolerate a different view.
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Monday, June 6, 2011

Please vote for WPI

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