CFS Patient Advocate: Laurel's testimony and video

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.

Saturday, March 12, 2011

Laurel's testimony and video

In rooting around for Dr. Joan Grobstein's 2009 CFSAC testimony, I came upon once again Laurel's powerful video testimony from October 2009 CFSAC meeting. Perhaps there are a few new or uninitiated persons reading my blog this weekend. This is for them.

Also please watch this video on ME/CFS made by Laurel, ill and housebound with CFS for 13 years. It gets the major points across in a powerful, concise and beautiful manner. Laurel is the very best! Learn from her. Both these films are on youtube.