This is part of a series on visionary individuals in ME/CFS who have taken action to make their vision a reality. Check out Pt. I of a two-part blog series featuring Dr. Bateman and the Bateman Horne Center.
Stephanie Griffin, the Public Relations and Communications Director for the BHC, started off the interview by saying of her job interview with the group, “You’re kind of evaluated here for your commitment”.
Stephanie was born into a committed life. Her family has a history of taking on causes and supporting disenfranchised groups. (They called themselves the Justice Warriors.) Her personal connection to underserved health groups came when her stepfather passed away, she believes, twenty years too young – a victim of how modern health care treats chronic pain patients.
She said it seems like chronic fatigue syndrome (ME/CFS) patients have fallen through just about every single crack in the health care system you can fall through. Having ME/CFS, she thought, is like living in an undeveloped country where you don’t have access to a doctor. The BHC calls it, “The Landscape of Unmet Needs”.
The question she puts before herself every morning is how is this Center going to make the difference it wants to over the next two to three years – not just in Salt Lake City, not just in Utah and not just in the United States, but what can they do to impact people around the world?
The Bateman Horne Center, it turns out, is about much more than serving its patients – it wants to make a difference everywhere, and that involves doing what its leader, Cindy Bateman, does best – teaching.
The goal is to fulfill one of the most critical needs in “The Landscape of Unmet Needs” – teaching doctors everywhere. Ultimately, the BHC wants to evolve into the model of care for ME/CFS and FM patients. It wants to be the ME/CFS teaching institution doctors go to to learn about it. The Center has planned a comprehensive portfolio of educational programs designed to inform doctors about how to diagnose and manage people with ME/CFS/FM.
Building the ranks of doctors everywhere who can do the first and most important thing – validate the patient – is the goal. The next phase of the BHC’s doctor education program starts with the ECHO (Extension for Community Health Outcomes) program.
The program was begun in 2003 by Sanjeev Arora, M.D. in New Mexico. He was frustrated by exactly the same thing as Dr. Bateman – his inability to help the many (in his case hepatitis C) patients who needed his help. He devised a virtual medical education program that could provide diagnostic and treatment information to doctors everywhere. All they had to do was hook into ECHO.
The program features doctors using case studies to inform other doctors of the latest diagnostic and treatment procedures. The BHC got their “in” when the University of Utah agreed to sponsor their ME/CFS/FM ECHO program.
Thus far, Dr. Bateman has done a one-hour internal Utah Health System ECHO on pregnancy and ME/CFS, but the program will eventually reach ECHO’s affiliates across the globe. ECHO currently provides programs in 45 states and 31 countries. Its goal is to touch the lives of 1 billion people by 2025.
Dr. Bateman wants to produce weekly sessions featuring case studies done by different doctors. Dr. Peterson, Dr. Kaufman, Dr. Klimas, Dr. Levine, Dr Chia, etc. – could all present on a case study from their location. The program could ultimately provide advice on how to treat every kind of ME/CFS and FM patient.
A Sustainable Model for Making a Difference in ME/CFS and FM
“I want to build a sustainable model for the future.”
Rob Entz had a long career in health care administration. After retiring he became acquainted with the BHC through Dr. Bateman’s brother.
He said it was hard not to be captivated by Dr. Bateman’s story – her commitment to her sister with ME/CFS, the creation of the OFFER non-profit and now her vision of making a much bigger difference in ME/CFS and FM. He worked for six months reconstructing governance, instituting more efficient procedures, etc. as they moved to their new, larger location.
He was honest about the fact that the BHC is a work in progress. (Let’s hope it ALWAYS is.) They’re learning new things, checking out new opportunities, and continually looking for the most efficient way to do things.
Noting that some people have waited years to get in, his first task was increasing the BHC’s capacity to see more patients and freeing up Dr. Bateman’s time to educate more doctors and make the biggest impact she can. He called it the “Free Cindy project”.
His ultimate goal is to build a sustainable model for a non-profit that can provide excellent medical care for people with ME/CFS and FM, move the research forward, and above all be an education hub for patients, doctors and other providers. I found him utterly impressive. If anyone can create a new model for an ME/CFS/FM center, I think he can.
Dr. Bateman and her old-fashioned ideas about patient care haven’t made his task easier. Asking what happens to those who can’t afford to pay and noting that they’re often the sickest among us, she rejected the care-for-pay model that almost all doctors in this field and others now employ. With that decision, out the window went one cash stream, and in came more expenses for Entz to cover.
The Bateman Horne Center is one of the few willing to provide access regardless of ability to pay. They’re one of the few to accept insurance. They underwrite the cost of caring for those who can’t pay through their fundraising. (Every time you support the BHC you’re supporting someone who wouldn’t otherwise get care…)
The BHC’s model – spending significant time with the patient, working them up fully, keeping up with the research, and not focusing on the patient’s ability to pay – didn’t exactly help with their doctor search either.
Doctors at the BHC are simply not going to maximize their incomes, but they are going to be given the opportunity to form relationships with their patients and know that they are making a real difference. It took the BHC well over a year to find two doctors willing to work the BHC way.
Entz said they have a young doctor coming on board who’s leaving a major health system and taking a major cut in pay because he can’t stand the fact that he’s unable to spend the time necessary with his chronically ill patients. They now have 7 providers: 4 MD’s, 2 physician assistants (PA’s) and one registered nurse.
Instead of the care-for-pay system, the BHC relies on several income streams: insurance reimbursements for treating patients, research projects, grants and fundraising. Their goal is to apply for one grant a month in 2019.
If they can pull this off – the BHC is not sustainable yet – they’ll provide a possible template for others.
The Education Center
ECHO is just one of the programs the BHC has created to educate doctors and bring relief to people with ME/CFS and FM.
The Center has created guidance sheets for doctors, parents and caregivers.
- A four-page ME/CFS and FM Management program for doctors
- A five-page Advice for Parents with an ME/CFS/FM child sheet
- A five-page Tips for Pregnancy with ME/CFS guide
- A simple way to assess orthostatic intolerance
- A two-page Tips for Caregivers sheet
The ME/CFS/FM Online Series
The ME/CFS/FM Online Class six-part series is the first to provide in-depth introductions to key aspects of these diseases.
Getting the Right Diagnosis
ME/CFS and FM are complicated illnesses and getting the right diagnosis can be challenging. Learn how to recognize these diseases and other conditions that may play a role in illness presentation.
Activity Intolerance and Pacing
Learn why physical and cognitive activities can cause symptoms to worsen and how to identify and improve the “threshold” of relapse. Review the importance of pacing and realistic expectation setting that can minimize and even improve symptoms.
Getting Restorative Sleep
Poor sleep is a hallmark symptom of ME/CFS and FM. Not getting a good night’s sleep can worsen symptoms. Dive into the mechanics of good sleep with Dr. Bateman and learn why sleep disturbances occur and how to implement strategies that improve them.
Chronic Widespread Pain
Pain is one of the most troubling and hard-to-manage symptoms of ME/CFS and FM. Dr. Bateman teaches about the various types of pain, how pain is amplified, and treatment strategies to improve your own pain management.
People with ME/CFS and FM often suffer from cognitive impairment that can lead to brain fog, trouble with word finding and more debilitating symptoms. In this class, you will understand the types of cognitive issues that commonly occur, possible causes, and how to implement strategies to improve cognitive function.
VIDEO 6: Orthostatic Intolerance (OI) Syndromes
OI, Postural Orthostatic Tachycardia Syndrome (POTS), neurally mediated hypotension (NMH), and orthostatic hypotension can all be manifestations of ME/CFS and FM. In this class you will learn to assess orthostatic intolerance objectively, how to differentiate between these syndromes and strategies to manage the symptoms they present.
With the ME/CFS pioneers getting older and retiring (Dr. Lapp) or dying (Dr. Lerner), the BHC feels an urgent need to get their experiences documented and build the ranks of new doctors.
The Clinician Coalition is part of that. It brought together a who’s who of ME/CFS practitioners over two days in March, 2018 to summarize and disseminate key diagnostic and treatment information to the medical and research communities. Other goals included providing recommendations for treatment trials, identifying possible subsets for research studies, and increasing the ranks of knowledgeable doctors. The results will be published in a medical journal and further meetings are planned.
Patient Meetings Go Digital
The monthly education meetings are videotaped, livestreamed on Facebook and then immediately posted to Youtube. The BHC has over 40 videos on different aspects of ME/CFS/FM. Some recent video presentations include:
Over the last three years, the Bateman Horne Center has moved into beautiful new digs, hired a bevy of doctors and nurses, expanded its research capacities and begun efforts to educate doctors and providers everywhere. Its goal is nothing less than to become the medical education teaching center for these diseases.
Over the next couple of years the BHC hopes to free up Dr. Bateman to become a full-time mentor and educator. The goal is to disseminate her knowledge as widely as possible so that people everywhere can get diagnosed and receive adequate treatment.
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