Journal of IiME Volume 5 Issue 1 (May 2011) Letter from America By Chris Cairns The CFS Patient Advocate A month ago President Obama was asked a question about Chronic Fatigue Syndrome at a news conference. The question came from Courtney Miller, the wife of CFS advocate and patient Robert Miller. For one second, ME/CFS hit the big-time. 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. Chris Cairns‟ blog is at - http://cfspatientadvocate.blogspot.com Invest in ME (Charity Nr. 1114035) www.investinme.org Obama answered that he had heard of Chronic Fatigue Syndrome but "did not know much about it". He said that "he would look into it". If Obama has heard of CFS, no doubt it was from Senator Harry Reid of Nevada. If Obama sincerely wants to know more about CFS, he only needs to ask his friend Senator Reid. Senator Reid was instrumental in the formation of the Whittemore Peterson Institute in Reno, Nevada. Senator Reid is the best friend of ME/CFS in the US government. In the last year and a half, the patient voices of ME/CFS have become more spirited, consolidated and articulate. This is a very important development. This elevated collective voice can be seen in many blogs, posts, message boards and advocacy groups. Significant among blogs are those of Mindy Kitei (cfscentral.com) and Jamie Deckoff-Jones (treatingxmrv.blogspot.com) and XMRV Global Action Facebook page (http://www.facebook.com/pages/XMRVGlobal-Action/216740433250). There are many worthy blogs and voices. Forums on phoenixrising.me and mecfsforums.com have many strong and clear voices. To be further convinced of the strength of these patient voices one only need to read the current testimonials of ME/CFS patients that will be presented on May 12, 2011 at the CFSAC conference. All this increased vocal and written activity can be directly attributable to the WPI Continued page 19 Page 18/58
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