CFS Patient Advocate: Online screening: Voices from the Shadows

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.

Thursday, October 6, 2011

Online screening: Voices from the Shadows

Natalie Boulton and Josh Biggs' ME film "Voices from the Shadows" will be available for people in the USA and Canada to watch free of charge online - during the Mill Valley film festival, where the film is being premiered. The film festival runs from October 6th-16th and the free screening will be extended to October 30th. The film will be able to be accessed for streaming at http://mubi.com/festivals/mill-valley. It will not be downloadable.

This screening is available through a Mill Valley/MUBI collaboration. The will be more information on the website: http://voicesfromtheshadowsfilm.co.uk

This is a timely event. Today is a very good day to reflect on the serious nature of this illness, Myalgic Encephalomyelistis - and to expand the knowledge base of information so that necessary research and treatment can move forward for these neglected and abused patients.

This is a must-see film.

1 comment:

David WalkerOctober 9, 2011 at 1:59 AM
Any idea how this can be viewed from the UK? I tried using a US-based proxy server, to no avail. Apparently, proxy servers don't always handle live streaming very well.
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Thursday, October 6, 2011

Online screening: Voices from the Shadows

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