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.
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.
Llewellyn King and Deborah Waroff have an ongoing series of short informational videos on ME/CFS entitled "MECFS Alert". The goal of this series is to heighten ME/CFS awareness and to provide critical information about treatment and research into this illness. So far there are 23 episodes and they are available on a "MECFS Alerts" youtube channel. We have to thank Llewellyn King and Deborah Waroff for their efforts that allow the rest of us, worldwide, to have access to important information and developments.
The most recent three-part episode features an interview with Dr. Andreas Kogelnik. Dr. Kogelnik is a clinician/researcher who runs the Open Medicine Institute in Mountain View, CA. Dr. Kogelnik worked with Dr. Jose Montoya at Stanford on the Valcyte trial. Since then Dr. Kogelnik has opened his own clinic in Mountain View, CA and is working hard to find treatments for ME/CFS. Dr Kogelnik is one of a number of younger clinician/researchers who have moved into this field, and are tying to consolidate and energized diagnosis and treatment.
This is an excellent interview. Llewellyn King asks all the right questions and Dr. Kogelnik provides articulate responses, stating his views on the illness and the current efforts that his Institute is pursuing. The viewer gets the sense that this clinician/researcher wants to get at the mechanism of this illness or these illnesses.
Dr. Kogelnik will be speaking at the upcoming InvestinME conference in London on June 1, 2012. He gave a talk at this conference a year ago and more can be read about Dr. Kogelnik on the InvestinME website here.