CFS Patient Advocate: Alexander Khoruts, M.D.

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.

Sunday, March 31, 2013

Alexander Khoruts, M.D.

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 Minnesota. He is a world leader in fecal transplantation and it is exciting to have him working so close by to where I live in Minnesota. Minnesota is not known to be a state that is aware of or gives legitimacy to ME/CFS (an understatement), so the possibility that a treatment for ME/CFS might emerge here is welcome news.

Here is an article on Dr. Alexander Khoruts, from the Guardian. As usual, the comments are interesting and informative.

1 comment:

AnonymousDecember 5, 2013 at 12:22 AM
This Doctor and his "Nurse Laura" are the most inconsiderate and cruel practitioners. Dont waste your time in hoping that this is a suitable alternative. His nurse is a lazy pig with an attitude...and if you dare to advocate for yourself...well...you are no longer a candidate for the transplant. Even if you are bleeding to death from having cdiff for 12 years. I hope his Nurse contracts cdiff.
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Sunday, March 31, 2013

Alexander Khoruts, M.D.

1 comment: