It was a joke—payback--- for the intense interest I had expressed for CFS during my training, about the time the 1988 Holmes case definition was published. My interest was initially fueled by a personal desire to help my sister, who became ill while I was in medical school, but grew as I searched the medical literature, evaluated hundreds of patients, and came to know the illness face to face.
Nine years ago, after 10 years of CFS, my sister developed non-Hodgkins lymphoma. She died at age 51, overwhelmed by an unknown infection following stem cell transplant. Now WPI has reported the presence of XMRV, a discovery that could potentially have changed her fate.
Two decades after diagnosing my first patient, and one decade after opening a CFS clinic, remaining self employed has been the best way to continue a search for answers and to provide a place for patients with CFS.
I have indirectly donated at least a million dollars to the cause of CFS in the form of lost potential income.
I still participate in Medicare and most major insurances and follow a large group of patients with CFS and related illnesses. As a small business owner I can not provide medical insurance for my staff and was myself recently declined individual medical insurance by Blue Cross/Blue Shield. The clinic generally runs in the red and continues as a service to patients in my community.
The effort is subsidized largely by pharmaceutical dollars since I moonlight doing drug research and consulting to pay my clinical staff.
The CDC researchers are still doing epidemiology, deny a viral contribution, and demonstrate little understanding of the clinical subsets that meet the Fukuda CFS Case Definition
The NIH has not matched research funding to the significance and immediacy of the problem.
There is little recognition, interest or expertise regarding CFS at academic medical institutions across the country, including the University of Utah.
As a departing member of the CFSAC, I’m grateful for the chance to represent my CFS patients, to learn the ins and outs of Washington and to meet the many good people who form the committee. Thank you for your dedication and contributions. I’m happy for the progress that has been made.
I’m disappointed that the urgent and repeated recommendations of this committee for research funding, clinical care and CFS education—coming from people with the most CFS experience--- have largely fallen on deaf ears or been met with excuses and resistance.
I’m disappointed that federal agencies have been underfunded, uninspired, and generally disinterested in this urgent public health problem, and have maintained an undercurrent of disdain, not only for those who are ill, but also those who are trying to help them in the face of dismal resources.
I would like to thank all who have been working in the field for the last 20-plus years.
I sincerely hope that the discovery of XMRV in patients with CFS, along with other high quality but largely unnoticed recent biomarker research, will stimulate an explosion of good questions and additional science that will place all the patients with CFS back on the scientific radar and into the mainstream of modern medicine.
Lucinda Bateman, M.D.
October 30, 2009
Comments
A Thank You isn't enough for your efforts in supporting us CFIDS sick. With great respect - Sharon Stapleton
we are a me cfs fms mcs backwater i personally have gained knowledge and great emotional support from your web postings over the years since 2004 when my proffessor retired it is people like you that have kept us in the picture you may not have become as financially well off following the path you choose but god will remeber somewhere down the track good things will happen to you god bless geoffrey