Remarks at the Denver Millions Missing Event for ME, May 11, 2019
By Lila Rosenthal, MD
Thank you for the warm welcome and kind introduction. It’s an honor to be here with you today to raise our voices to raise awareness about ME. It was difficult for me to figure out what I could say to you long-suffering patients and caregivers, who have been marginalized and at times dismissed by my colleagues. If I’m honest, if you would have seen me before I became “educated”, I might have treated you without the respect and validation you deserve. Today I want to tell you, from the bottom of my heart, that I am sorry on behalf of myself and my peers.
Most of what I know about ME I have learned from my patients. And so in light of today’s theme, Finding your Allies, I want to say some words about how you can best educate your practitioners to be able to get the best possible care while we wait for new data and new treatments to emerge.
Find your Allies: Try not to see busy, harried, uninformed doctors as the enemy.
I know many, maybe even most, of you have been mistreated at best and possibly verbally or psychologically harmed by doctors at worst. I make no apologies for this. But I beg you to have compassion for us. We are a deeply wounded group. Especially doctors who work within the confines of the insurance model of health care. We are generally trying to function in a totally dysfunctional system run by business people with a poor appreciation for the complexity of human health and disease. The system is driven by profit which is predicated on volume- high volume. I have seen more than a few physicians in recent years with ME. Doctors are patients, too.
Providing care to patients with chronic, complex, multi-organ system disease that doesn’t fit neatly into the well-studies conditions like diabetes, heart disease, kidney disease, etc, is daunting. It needs time. We need to be able to hear you, really hear all of your symptoms, really appreciate the time course of how your disease process unfolded, hear about what your life was like BEFORE you became ill, to grasp the entirety of how you suffer.
This cannot be done in a 15 minute visit, or even a 20-25 minutes visit. 30 minutes is the minimum appointment time you should have, and you really need to be seen monthly. I encourage you to request extended visit lengths. Keep prescriptions requests and questions to a minimum between appointments or you will overwhelm your provider. Bring lists of your current meds, including over the counter meds, to each appointments.
Find your Allies: Find doctors who are knowledgeable about ME.
It goes without saying that our medical education has given little if any attention to this poorly understood disease. Again, I ask your forgiveness. I can only promise to do my part to raise awareness and work for inclusion of this diagnosis in medical school and residency curriculum, in CME courses for primary and specialty care and to otherwise raise the bar for your disease in all spheres of medical education.
The only way I was able to receive the information that was provided to me by my patients was because I was working in a private practice where I could control my patients volume and spend more time with patients. I took insurance, including Medicaid, and I saw many, many complex patients with ME. But I couldn’t sustain it and had to close my doors two months ago due to the high stress and rising overhead without a compensatory rise in reimbursement from insurers, which is why I suggest that finding your ally may very well mean finding a practitioner who describes themselves as “functional” or “integrative” to get the best possible care. And as you know, these folks are often in direct-pay models, meaning they will not bill your insurance. But putting scare resources towards this may be a money saver in the long-run.
I know this is hard to hear, but many patients and advocates who have had better outcomes have had such providers who really could give the TIME to understand ME, to explore the literature, and follow through when patients provide articles or helpful links.
Find Your Allies. Tell your providers about ‘Unrest’
When a patient told me about the documentary Unrest last fall, I had time and emotional bandwidth to watch it. I got CME credits for doing so, and ultimately this led me to be able to attend a conference at NIH in Bethesda a few months ago on accelerating research in ME/CFS. So tell your providers about the movie, tell them they can get CME credits for watching it and if they can’t devote the time to a feature-film, there is a 28 minute video produced by Medscape called “Diagnosing ME/CFS: The Experts Weigh In” that was recently updated and edited by Dr. Lucinda Bateman to offer the most up to date primer for busy providers.
I watched it on Thursday in preparing for this talk and I felt like it provided high yield information in a relatively short amount of time.
Find your Allies. See a Sleep Medicine Neurologist.
If you have not been seen by a sleep medicine physician, I strongly urge you to do so. Make sure they are a board-certified neurologist with fellowship training in sleep medicine. Many patients erroneously think that all they can do is rule out sleep apnea but this is not so. You DO need to be ruled out for this, but these doctors can understand terms like hypersomnia and really understand the dysautonomia piece of your disease.
And this word, dysuautonomia, is key. There is fundamental pathology of the autonomic nervous system (ANS) in ME that is a nascent area of research getting increased attention. Most general neurologists lack expertise in the specific subfield of ANS-related disease, so this is a critical person that you need on your healthcare team.
Find your Allies. Visit Bateman Horne Center
Raise your hand if you have heard of the Bateman Horne Center for Excellence in Utah? Dr. Lucinda Bateman is widely regarded as one of the top researchers on ME in the country and probably the world and I have had a patient get seen in her clinic. If you aren’t getting answers, aren’t getting better, and feel that you have exhausted resources and professionals, consider getting on the wait list ASAP to be seen.
Have radical hope. There is a growing understanding of and appreciation for ME building each and every day.
An ally can be an emotional support pet, clergy, family. Find what gives you joy. Music. Laughter. Vibration/energy work. Fresh air. Above all, have radical hope. Figure out how to keep alive the positive feelings that you have when you leave here today…that feeling of being understood, of validation, because I do believe there is a growing understanding of and appreciation for ME building each and every day. I pledge to do my part and although my work in student health limits me to seeing only patients enrolled in the university, I will be your ally by helping raise awareness among my peers in my local sphere and beyond.
Thank you for listening and for showing up today to raise awareness. You are an inspiration.