Director’s Panel Discussion Awareness Event

by | Jun 6, 2022 | Awareness Day

As part of the May 11th Messages of Hope Awareness Event, BHC directors engaged in a panel discussion. The following is a transcript of the virtual discussion.

Rob Ence: I want to introduce our panel Dr. Lucinda Bateman, Dr. Brayden Yellman, Dr. Suzanne Vernon and Angela Linford and Tahlia Ruschioni who are not doctors but they have stayed at a Holiday Inn recently, so they probably qualify. Anyway. Glad to have this group together we want to talk a little bit about some of the events over the past year. I’m going to start right out by asking Dr. Bateman. The Bateman Horne Center made a decision last year to specifically observe and treat a group of individuals who were involved with long COVID. Let me just ask you to share a little bit about what we attempted to do there and what we have learned from this long COVID research? What implications does that have for individuals with ME/CFS and fibromyalgia.

Dr. Bateman: Thank you Rob, I’m happy to do that. We were very strategic in our decision to evaluate long COVID patients and first and foremost we didn’t want to shift our resources away from patients with ME/CFS and related conditions but we had a very clear view that COVID was going to leave many people sick with the post-viral syndrome. So thanks to many kind of unexpected resources we were able to create a plan and hire two new providers that we trained specifically to recognize, diagnose, and stay up to date on long COVID. That not only gave me a chance to learn vicariously about long COVID by supervising and teaching and working with our new clinicians but it trained those clinicians in an amazing way and their work with long COVID has prepared them completely to be able to see patients with ME/CFS POTS and fibromyalgia. So now they’re a very critical and important part of our staff and we’ve integrated long COVID patients in alongside us and it’s been a great opportunity and I think it’s going to benefit everybody.

Rob Ence: Thank you Dr. Bateman. Dr. Yellman or Dr. Vernon do you have any follow-up observations about that decision from the Bateman Horne Center to take that route? Starting Dr. Yellman?

Dr. Yellman: Yeah, you know it’s I see the involvement with long COVID as an actual additive to all of those with ME/CFS because really what we seem to be dealing with in most cases of long COVID and of course there are exceptions that are specific to that virus but what we’re really seeing is the early stages of onset of ME/CFS. So, we’re learning about what is happening in those early stages that could be defining or really be the start of this cascade of secondary complications and tertiary complications that become what people with long-standing ME/CFS are experiencing. So, in some senses, we’re learning more about the illness in ways we never have before. It was so hard to identify people early in the illness and also it’s brought national attention to ME/CFS. One of the things that we and many advocacy groups have been working on is trying to help other scientists and clinicians understand the connections between the two and that long COVID is the COVID triggered flavor of ME/CFS but that ME/CFS itself is where the work needs to be. That the research needs to be not specifically on the COVID virus, although that’s important of course for acute infections hospitalizations etc., but not through a virology perspective necessarily but from a whole multi-system illness perspective. That’s where we’re going to start shifting our money our research and also I think it’s been a fertile ground for people to start accepting others when they come in and say I have ME/CFS. When you’re in the emergency room that people are like, “Oh I’ve actually heard of this now and maybe this is actually something I need to learn more about or at least listen to my patients.” So, we’ve gotten better at that through our work with long COVID and I think the research we’ve done supports the connections between those illnesses and is really forwarding all of the work that needs to be done for those with ME/CFS, fibro, and long COVID.

Rob Ence: Thanks, Dr. Yellman. Dr. Vernon, your thoughts?

Dr. Vernon: Hear, hear, to what Dr. Yellman just said. This is really a generational opportunity you know as a scientist I’m going to put my geek hat on and it’s like you know how can we turn a pandemic that’s just been horrific, traumatic, horrible, into something positive and really it’s just created this hopefully for us once in a lifetime opportunity to understand post-viral illness as we know. So many people with ME/CFS started, their illness started with some kind of infection that they didn’t recover from and now as Dr. Yellman said you know the world’s attention is now on why people are not recovering from infection with SARS-COV-2 and that is just putting a lot of attention on Bateman Horne Center because we’re one of the handful of experts in the world that understands ME/CFS and understands post-viral illness and I think it’s just going to be an incredible opportunity to benefit not only the people that have long COVID but are our ME/CFS and fibro patients that started the same way or a similar way.

Rob Ence: Thank you. Thank you, Dr. Vernon. So back to Dr. Bateman you know we experienced and continue to experience questions from individuals who have suffered for years and years and years with ME/CFS and were concerned about us turning our attention to long COVID and overshadowing potentially the needs making progress what would you say to these folks?

Dr. Bateman: I would say that I had that fear a little bit initially in the beginning but once we got going it became more and more clear that this is just an increase in our own fold and that everything we learn from long COVID research is going to help people with ME/CFS and related conditions and that’s true in spades when it comes to research and clinical care. I have just become more and more convinced of how important it is and also the government of course our federal government but also governments around the world are pouring money into research to try to understand the long-term consequences of COVID and it is not lost on me they’re asking the very same questions that we’ve been asking for 30 years and the great thing is the critical mass of people asking those questions where they come from and how well they’re funded is now entirely different and I will say those same people are understanding the relationship between COVID and previous post-viral syndromes and it’s heightened their awareness.

Rob Ence: Thank you. Dr. Yellman, Dr. Bateman mentioned the coexisting conditions. What have you learned about the role that coexisting conditions can have on an individual’s disease severity? Yeah, you know it’s interesting even to call them co-existing conditions. I think of it as sort of different manifestations of the underlying illness and certain you know symptomatologies that at any time in the course of an illness tend to be the driving factor that’s making all the other ones worse and it’s really where I think the art of medicine comes in for us as clinicians is to figure out among you know 100 different symptoms even breaking those down into major categories whether it be mast cell activation, craniocervical instability, hypermobility, orthostatic intolerance, sympathetic overdrive. Even when you break those symptoms down into those categories you can still struggle to know which one is driving any given symptom of headaches or of vertigo or pain and so it’s they are not in separate silos they all interact with one another they all make one another worse and so somebody can present with you know worsening of all their symptoms and trying to figure out. Is that because their mast cell was triggered? Is that because they’re in post-exertional malaise? Is that because their sympathetic overdrive is worse? Is that because they have a slight shift in their anatomy with craniocervical instability that’s making them not respond to medicines they were responding before? Trying to tie those together and think about them as a whole rather than as separate sub-specialties is really the challenge we all face and something that I think we’ve gotten better at of thinking about what is driving what and how do we go for that low hanging fruit to really improve everything. For a long time the only tools we had were symptomatic treatments you know if sleep is bad if pain is bad give a band-aid for it right and help improve quality of life but I think now we’re at a point where we understand why the band-aid is needed and we’re trying to learn how to reverse or heal those wounds in the first place. So, for me it’s been incredibly exciting to practice medicine under those terms and really then take what I’ve learned and try to share that with others.

Rob Ence: Thank you. So, Dr. Bateman you’ve been in this arena for a long time and you experienced things going way back to your days at Johns Hopkins and to the University of Utah. What have you seen shift in the world of clinical care and education regarding receptiveness of your colleagues? That’s interesting because I’ve said many a time I don’t claim my kind which are other physicians in the field. Once we made buttons as part of our campaigns and the button that I liked the best was a quote from me and it said, “Infiltrate Academia.” So you know it was very difficult to get the attention of major institutions like my alma mater Johns Hopkins and other places but things have really changed they changed over time and it’s been catapulted forward with long COVID and I may have mentioned this previously but I’m part of an effort outside of BHC it’s a CDC funded monthly webinar-style ECHO learning session for primary care physicians. It’s called Long COVID and Fatiguing Illness Recovery Program and the goal of this is to target primary care providers with information and best practices for post-acute sequela of COVID or long COVID and myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS and there are 20 amazing faculty members as part of this effort from institutions all over the U.S. who previously did not have expertise in ME/CFS. I would say 75 percent of them who come in with their long COVID expertise who are now experts in ME/CFS and part of this lecture series. So that’s just an example of how important it is.
I just wanted to say also that I got a ding on my email yesterday from Hippocrates which is an online clinical decision tool for clinicians and one of the most utilized online medical reference services and it said they had an algorithm for long COVID so I thought yeah I’ll follow that and see if they even care about ME/CFS. Right? I mean there are more than a million subscribers for that. I looked it up on Wikipedia in 2010 and I’m sure it’s at least double that now. I went through the algorithm and the first one I came to was when I clicked on the fatigue of long COVID was a reference to ME/CFS saying with all the case definition and describing post-exertional malaise and the whole the whole tool included an integrative discussion of other post-viral syndromes including ME/CFS.

Rob Ence: That’s awesome and I love the phrase, “infiltrate academia.” We are committed to doing that and as you’ll hear in this ongoing conversation we’re making great strides in provider education but before we leave that another arena that has to be infiltrated in funding and practice is research and Cindy you talked a little bit about the RECOVER concept and program. Let me ask Dr. Vernon to just weigh in for a few minutes about what she sees on the horizon and current what we’re doing and in other places what we hope to be able to accomplish related to research in the future?

Dr. Vernon: So RECOVER is an initiative that was spearheaded is being spearheaded by the the National Institutes of Health and there are several hundred scientists and tens of centers involved in the whole design it’s really called the collaborative design to the whole RECOVER Initiative and included in that design are also patients. There will be tens of thousands of patients enrolled in RECOVER and the whole basis for the RECOVER Initiative is to learn about the long-term effects of COVID. Why do some people get better? Why do some people not get better and what can be done through the whole course of that disease? I mean it’s been really a quite a stunning effort that was started last year and enrollment is now underway, and it’ll go on for five years and probably beyond. It is a study that is really trying to understand the natural course of disease the natural course of recovery or not recovering following infection. I think it’s very very important there’s already been additional funding put into the Initiative for additional types of research that was put out to the to the broader research community not just the those that are involved in RECOVER and they recently also just put out additional funding for treatment trials which they intend to get started in the third or fourth quarter of this year. So, it’s really just it’s just mind-boggling how fast everything is moving. The Bateman Horne Center is part of the RECOVER Initiative we are a recruiting center for the Mountain States PASC Consortium which is led by the University of Utah (Dr. Rachel Hess), and the University of Colorado, and the University of New Mexico, and Intermountain Health. So, it’s a very large consortium which falls under the Mountain States PASC Consortium and we are working in the adult cohort. There’s also a pediatric and a pregnancy cohort that’s part of the Mountain States Pass Consortium. We are in the process of submitting clinical trials to the RECOVER Initiative which I think is very exciting as well as very specific research projects that are looking at genetics and trying to understand genetic factors associated with long COVID and not recovering.

Rob Ence: Thank you for that insight. I’m going to jump right now and talk a little bit with Tahlia Ruschioni about our education program. So, Tahlia a little bit about what has changed and where we’re headed with our provider education.

Tahlia Ruschioni: This is my third year with Bateman Horne. So much has changed in that short period of time and I do think that in large part the pandemic has certainly helped us create a platform where it’s hard to dismiss post-viral education and the need of providers no matter what specialty or care field they’re in to understand that and be able to meet patients where they’re at and really it’s just taking the the blueprint of what we know with ME/CFS and teaching providers that they are seeing this that they have been seeing this and trying to meet them in their in their field where they’re at and seeing patients and giving them the tools to be able to do that effectively. This next year, well this year in particular, we’ve gained a ton of momentum so all the seeds that we’ve been planting for the last couple of years are really starting to take off with a lot of different medical education programs, continuing medical education using institutions in academia to really launch that platform and reach more providers as you guys have probably seen by now we’re becoming a training center as well. We have residents coming through and fellows and I think that each one of those people reached no matter how small or large is an opportunity and synapse for change. So, I think we’re really starting to take off.

Rob Ence: Thanks Tahlia. You’ve done an amazing job in those three years and we deeply appreciate it. One of the things that you recently launched specifically to assist providers but also our patients and our friends in the community was your Crash Survival Guide. Talk a little bit about the feedback on that and what was your inspiration for that?

Tahlia Ruschioni: I think ME/CFS, fibromyalgia, long COVID, all of these chronic illnesses have their own monster as Amy so poetically shared with us today. The biggest struggle that I see with patients with ME/CFS and long COVID is PEM. That push crash cycle and I think most of you know by now that my sister was my inspiration for this. I just watched her in this constant tug of war and every time she would crash she would just get sicker and sicker. I kept stepping back and saying what is the one thing that if patients could gain some control back from this disease what would it be? It would be controlling that push crash cycle and trying to stay out of PEM. So, myself and a wonderful amazing group of interdisciplinary professionals joined me in creating this guidebook which really just kind of takes patients and hopefully their care partner as well as providers through different aspects of staying out of PEM really understanding what that is and trying to implement some of those changes. I think one of the biggest things that we can do as a center is give both patients and providers and their care partners tools to help support them in their care.

Rob Ence: Thank you Talia. We’ve got some exciting things on the horizon individuals who are on this call have been great partners in helping us move some of this education forward and partners yet to be announced that helping us really unfold some new horizons and great advancements in provider education and we appreciate all you’ve done with that. Angela, who is our Communications Director, plays a pivotal role in helping communicate all that we learn in our clinic and our research and to promote the things that will help individuals understand where to get information and how important it is for providers to grasp this as well as our donor base. So, Angela talk a little bit about your communication and marketing role in moving our mission forward and what you’re doing to help increase overall awareness

Angela Linford: I’m fortunate that as you know we have some really great educational materials that are developed and content that we have and so then my challenge is to disseminate that to as many people as we possibly can. But you know we’re a non-profit and so we’re on a budget so it’s a matter of leveraging and figuring out how to spread that information through social media, through professional, organizations, through any kind of networking that we can do and of course all of you on here are a big part of that because you get the information and you take it and you share it with other people and in that way it just continues to grow and grow and grow and we’re really grateful that. Individuals and providers from all over the world access our education. We are working on making things more accessible for the members of our community who are unable to look at screens or videos or view things that way so that’s something that I have a challenge for myself to do is to figure out a way to disseminate that to make it more accessible for everyone that we possibly can within our community. So we’ve got a question here. How can we access the manual? I was going to mention that. The ME/CFS Crash Survival Guide is on our website which is batemanhorncenter.org and right on the home page at the top in red you’ll see the word “new” and then it says new guidebook. Click on that and that’ll take you to the guidebook. I also want to call out that hopefully you’ve all received the email that Dr. Bateman is speaking at a provider education event tomorrow. It’s one of the ones that she talked about the one that’s funded by the CDC and these monthly sessions are open to the public. They’ve asked her to speak in honor of Awareness Day so that’ll be at one o’clock mountain time and it’s on our website on our event calendar and hopefully you’ve gotten the email reminders for that.

Rob Ence: Thank you Angela for all you do. So, in the last minute or two of the panel time. I just want to ask the entire panel if anyone has any other aha’s to your respective work that surfaced for you in this past year that we haven’t touched on?

Dr. Bateman: There’s a lot and I’ve tried to move through the overwhelmed stage to the embrace the new challenges stage.

Dr. Vernon: The biggest aha for me is the incredible attention and awareness that the pandemic is bringing to the diseases that we’ve been studying and trying to help people with our entire careers. I mean it’s just been mind-blowing.

Tahlia Ruschioni: I just wanted to conclude by saying that each one of you play a huge role in the work that we do not just from the communication aspect but we learn from you every day and hearing from you and the research that you engage in the clinical care the education everything we learn that from you so you are just as much a part of this as we are.

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