CFS Patient Advocate: InvestinME message from Annette Whittemore

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.

Friday, May 20, 2011

InvestinME message from Annette Whittemore

Hello Everyone,

The Invest in ME Conference just ended a few hours ago. This conference brought new and exciting ressearch to ME that is soon to be published. Dr. David Bell discussed how the patients that he saw as children are now adults ...around 40 years old. Several have cancer, while others are still severly ill, but the majority are coping and say they are well but are actually still living with CFS. Dr. Demeirlier continues his important XMRV research, in Belgium and around the EU, finding many of the sickest patients positive for the retrovirus. Dr. Mikovits showed more "footprints" of XMRV infection from the patient's immune system data and described how XMRV seems to act more like HTLV than HIV. Dr. Bieger, a delightful iimunologist from Germany, is doing exciting work with XMRV and EBV. The rest will have to wait until the conference DVD is completed.

Discussions following the conference were very lively as those in the audience stated their frustration with the British medical/political establishment at not having adequate medical care in the UK. Howeveri, all in all, it was the best conference to date. I am overwhelmed with emotion over the expressions of thankfullness for all that the WPI is doing to bring awareness of this disease to the rest of the world. I wish we could all get together in one place to share stories and meet face to face. I realize how connected we've become, in our quest to find the answers to this devastating disease. I'll be flying home tomorrow while Judy travels to Ireland to give another presentation and more hope to those who suffer. Goodnight all! Annette