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.
Commitment
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.
People with these diseases seem to fall through every crack in the medical system possible.
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.
Project ECHO
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 opted out of the prevailing fee for care model…
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.
Cognitive Impairment
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.
Clinician Coalition
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.
Dr. Bateman’s Summary of Clinicians’ Summit March 2-3, 2018
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:
Fatigue, Fibromyalgia, ME/CFS and Sexual Health
The Experience of Childbearing with ME/CFS Peggy Rosati Allen
Living with a Partner Who has ME/CFS and Fibromyalgia, Part 1: When Your Wife is Ill
Life Happens: Sleep, Weight, and Activity Patterns in Fibromyalgia
Orthostatic Intolerance NASA Lean Test with Pelle Wall
Conclusion
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.
- Check out Pt I of the Bateman Horne Center series
- Find out more about the Bateman Horne Center
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I am severelly ill with me/cfs, 98% bedridden and it is even getting worse. I am 31 years ill, always going backwords and backwords. I even can not follow this blog or view the webinars well anymore. here and there a piece. I have a big question because I am for now for 9 years alone with almost no help. I even crash when the help comes. I crash when the homefysician comes.What do I have to do?
I read somewhere a good diagnosis. They only ruled out in the beginning 5 or 6 things and that was it. Even Jarred younger sais to rule all causes of fatigue it would take 300.000usd each person.
they say somewhere stay between your limits and try to exapand them slow. I even can not take care off myself, wash myself on a chair each day, brush my theath each day, just am focussing on eating.
although I admire the work the bateman hornecenter does, I do not see in my state off illness how they could get me better. Also not with there recomendations for docters. please tell me if I am wrong!!
I feel almost like ron’s son so how do I get better with this recomendations. for pain, things help not or my stomach get even more upset.
for sleep, after decades I need to take an overdose (trazodone ore so does not help) of benzo’s
for depression, I can not tolerate anti depressants
for my stomach and nausea.
nothing helps and for be able to do more, I even would not dare to take rilatin for the push and crash.
so what do I have to got to do???? It sounds all so easy…I even do not get for years now to a specialist for normal problems like a gynecologist.I am locked up in pain and when I hear her spaiking (little parts) its like I have to blame myself being in such bad shape. And not getting better.
I need treatment, diagnostices. How can I pace when even eating is crashing???
even the bateman horne center is for peole who are well enough to go there on visit, sometimes from far away.
I simply do not know anymore how to survive.
An hospitalisation, in Belgium they would not know where to look for and you get GET and CBT.
konijn, I am so sorry to hear of your situation. Trazodone does not do it for me but Benadryl does the job. Maybe it could help you.
I don’t have any good answers for you, but I do care.
I have only been ill for 3 years, but am already severe, and I continue to go slowly downhill (even though I pace), developing new symptoms along the way. You are now where I fear I will be in time, and would be now if I didn’t have help. I can’t travel, so any specialized care is out of my reach as well, and so many recommendations & “treatments” are for those who are less severe.
All I can offer you is my complete heartfelt sympathy and caring. I don’t know if it helps, but I wept for you and your pain. If it were within my power, I would fix this for you. Please don’t blame yourself for being ill, or for not getting better; it’s not your fault!
Sending endless compassion across the sea to you…
thank you birdie! thank you for being honest!
in the past, when I still could read this blog, I got the feeling that almost everybody got better except me. And I began to blame me, for not getting better. All the (partial) recoverry story’s… All the people who found something that helped.
I really hope you never get that ill as me and alone!! I hope for you they will get testing and treatments soon enough!!
But as you described, also whit me, over the years,I got new complaints and new ones and new ones.
And the first years off my illness there was here in Belgium and is still, the GET and CBT. I tryd and I tryd, there was still no internet, so I believed the docters just getting more ill. there was even not spoken about pacing. But as I learn and read from you, pacing is also not the magic word or treatment. And then you have to pace to gradually increase your limits. But that just does not work I noticed. And even with being alone now for so long, I crash as i wrote about the simpelest things. even from getting a little
bit of help from a service.
thank you for understanding me!thank you for letting me see that I am not alone in getting worse (allthough if I would have magic and could you heal offcourese I do that immediately!!)
To the meirleir I was in 2001. Oh my god,I wish that I would have never done that! Before I was verry bad, but with his tratment off a half year antibiotics for a so called chlamydia pneumonia (it was even not an active infection but I did not know at that time and he said it was an active infection) I got so so much worse! with so many more complains and now, if I need it, I even can not take antibiotics anymore. And during the tratment with antibiotics, I got an active infection with mycoplasma pneumonia. So to him, even if I could, I would never go again!
what are you doing in gods name when you even like me can not go to see a specialist? As me, getting older, I just have to see specialists and also to rule out co morbiditys. But a hospitalisation I would not survive with the light, the noise, the effort off all the research that has to been done, the sleeping ritme.
but for excample, if you need to go to the dentist, what do you do? Or things like that?
gentlle huggs and prayers for better times because praying is the only thing left for me. praying that I will survive untill there are cures but they must come fast! I hope that also for you!!!
This is from ME Actions ME-pedia;
https://me-pedia.org/wiki/Kenny_De_Meirleir
Professor Dr. Kenny L. De Meirleir is a Belgian Internal Medicine doctor who specializes in ME/CFS. Professor De Meirleir runs a clinic in Brussels, Himmunitas. http://www.himmunitas.org/pages/english/index_en.php?page=home_en
Maybe you could contact his clinic for advice?
I think you’ll find that Konijn says she went to Meirlier and he misdiagnosed and made her worse.
Konijn
ik veronderstel dat je een Nederlandstalige Belg bent. Voor mensen die zo ziek zijn als jij kan een koolhydraatvrij dieet, dus enkel vlees, een groot verschil maken. De eerste maand kan lastig zijn.
I also follow a very low carb diet and found it helped especially with digestive issues that are common among ME/CFS sufferers. My doctor is Dr. Bateman and it was one of her recommendations.
are there manu me/cfs people like birdie and me? Always geting worse and so ill? when I could still read the blogs from cort, I remember ofte “they left no stone unturned and found something that helped them (great). Or how people could fly from state to state or even to an other country for seeing a docter?
It was as if I was not trying enough…
even the centers of excellence, when I could go a hospital in and do every excamination the me/cfs people have to do, I would called myself “cured”.
Are the verry ill people not on this blog? are they not able to say anything?
I think there are many people like you Konjin. Dr. Jason did a study that found about 25% of people with ME/CFS do not really benefit from coping or pacing…The disease has just gone too far.
While some people do recover and others get better I think lots of are either stuck or are unfortunately declining.
Please keep up hope, though and if you can keep trying new things. I recently bumped into someone who had terrible problems eating – he experienced terrible pain – which was cleared up by a special formulation of magnesium called ReMag. Who would have ever thought.
We have a story coming up of a person who was horribly, horribly ill who is now back working full-time. It can happen.
thank you cort! for you kind words!
but I am to ill to longer keep trying. I even have although I am 99% bedbound problems often with the strenght off breathing. can not go to specialists, have latest times even problems with reading your blog (just here and there a sentence). It lookt as if all the recovery story’s happen to others. By coinsidence.I even do not know how to eat now. Am to weak and alone. And even not alone, must have strenght to eat. so I have to wait untill I have a little bit of strenght to crash then again from eating. I really do not know it anymore and with getting more and more ill, my hope disapears more and more….
To be fair, I think the only hope for us severe patients is science. We can only hope treatments show up… repurposed drugs, something!! It’s so hard being stuck but we will hold on together, it’s all we can do.
thank you Eimear for the words: bur we will hold on together! At least I know I am not alone in severe ME/cfs. I am sorry you are in that part of the spectrum tp! I hope you have a partner or family or so who helps you at least.
Dear Konijn. My heart just breaks for you. I put you on my prayer list and will pray every day that you get some help. I had an idea that you could try. Could you contact some of the local churches near where you live and see if there are people that would volunteer to help you in any way possible? I know there are people out there looking for a way to help others. Someone would likely love to help you. Take care my dear