Post-Pandemic prevalence of ME/CFS - what we can learn from the increase

Suzanne Vernon (33:07): That's right. Some studies early on by the CDC indicated that the sooner someone is diagnosed and treated, the more likely they are to recover, and then there's been research studies that have shown some pathogenesis differences, potentially some phenotypic differences between people who have been sick for less than two years, less than three years, less than four years, compared to people greater than five years, greater than 10 years, the underlying pathology is changing. It's different and it's progressing. It's the body's adapting, so the ability to have this RECOVER data set and all the samples that are being collected on it, and now the identification of people that meet ME/CFS criteria within this dataset to now look at all of these molecules, look at all these signals, look at all of the clinical data in the context of how they're defined is just going to be. I hope it's going to reveal a great deal about not only what is causing ME/CFS, but again how it can be treated, and what are the different targets that we can look at for treatment.

Emily Kate Stephens (34:35): And that essentially is what you set out to do at the Bateman Horne Center: identify objective diagnostic measures and implement evidence-based treatment. Implement treatment, help people to actually live their lives. Is that not one of your things? You're dedicated to actually trying to help people to get their lives back, so hopefully this can go some way. Now there has been a lot of criticism of the RECOVER programme. More broadly, I think amongst not necessarily involved patients, but patients, and actually I have heard it from researchers in the US who have said that they did not necessarily include sufficient people either with lived experience or with the depth of knowledge of post-viral conditions when they were designing their teams and their studies. You, obviously, in terms of the data that you have been able to gather from the RECOVER programme have found it immensely useful. Can you tell me your thoughts on the way that it is structured and the information that you feel that RECOVER should be able to bring us?

Suzanne Vernon (35:54): So, in the RECOVER initiative, I just want to digress for a minute. I'm going to go back. I'm gonna go back to when I was at CDC and I was invited to give a talk at the Infectious Diseases Society of America, and it was me and another MD. We talked about post-infectious ME/CFS. Gave presentations on that, and it was really quite stunning to me. To in this room, the room was full. The room was full. There was probably at least a couple hundred people in the room, and then afterwards there was the opportunity to talk with both of us that gave the presentations, and there was literally a line for both of us in answering questions one on one with these people. Most of the people that were in line talking to me were MDs and practitioners, infectious disease docs that just came to this big infectious disease meeting and were looking for answers for how to treat patients, these post viral patients. So there was a lot of interest. So I think there's a recognition out there for the most part in the world that there's this post viral, post infectious phenomena that happens to people, that practitioners need to want to know how to identify and help the patients. So I think when RECOVER was put together, and it's an NIH-funded initiative, so the academic world is what the NIH funds, and so they were really kind of spearheading the whole design. And I think NIH has also made a conscious effort to make sure people with lived experience are involved in the process, and I think that really kind of stems from the whole PCORI initiative, which is the patient-centered outcome research initiative that's been going on for many years now. Anyway, so it was a large group, 200 plus investigators initially, together with the NIH and people with lived experience involved in the design. Bateman Horne Center was one of the only groups that was involved in RECOVER. That was actually, I think, funded to some level to be an investigator in there. So there was ME/CFS research and clinical expertise involved, but it was-I mean, it was at least it was there. Wasn't a tonne. Yeah, I think what has happened over the past couple of years now with our involvement is that Bateman Horne Center has had an incredible opportunity to inform and educate people at all levels in RECOVER, and it's not always easy. You know, you can't always just convince somebody that what you're researching or what you're doing or what you've been studying or what you've been caring for is the right way. But I think we've made incredible progress at helping people understand post-Covid ME/CFS is there is important and needs to be part of the research, and that's evidenced by the fact that look at all these people on this paper from academic institutions that I could have never have even imagined to have had the opportunity to work with, and these are all people that now it's like, wow, this is ME/CFS. This is something. This is important.

Emily Kate Stephens (40:14): That again comes from this horrific situation that we have in terms of huge numbers of people being affected by post Covid, but the way in which the medical and scientific community and researchers have come together in this is quite phenomenal, and not just from an outside perspective, but I've noticed it in the people that I speak to, how much each one of them have gained from being part of a wider community and this more open conversation between organisations and between scientists, often sharing knowledge that previously was not really the crossover between body systems, the crossover between different types of illnesses, the between different specialties. That sharing of information has been quite phenomenal in the way that you've all been working in something like RECOVER, but also in the other organisations that have formed these groups that have formed as a result of something that was really not ideal.

Suzanne Vernon (41:25): Yep. I must say it has happened in other epidemics, like with West Nile, with SARS, the original SARS, with Zika. The interesting thing is that so the initial kind of surge of attention happens, and this intense research happens, and the need to develop diagnostics and understand the pathogenesis, and then get treatments or vaccines or whatever. So that happens. I think what's been an interesting observation for me is that once the acute scenario goes away, the funding and the interest goes away too, because there's no more funding. So how can researchers do it? So that again, one of the things about this pandemic, as horrific and as tragic as it is, it has forced us to pump in a bunch of money and to figure it out, because so many people there's not one person really that hasn't been not touched by this pandemic in some way, shape, or form. So before pre-pandemic, you could say ME/CFS, and people are like, "Huh, what's that? I've never oh, you know, you're just tired or something like that, and now you say Long Covid or you say ME/CFS, and you're bound to find be talking to someone who has either knows someone or has been affected by it.

Emily Kate Stephens (42:54): Yeah, it's very rare now to speak to someone who does not know of it, and so I think that there's also within your profession whether or not people are dealing on a day-to-day basis with people that have it. They've also all had personal experience of it, which definitely adds to the way in which people are being treated.

Suzanne Vernon (43:16): Yep.

Emily Kate Stephens (43:17): Do the results of your paper suggest the majority of us that have Long Covid are categorised now as having ME/CFS.

Suzanne Vernon (43:28): No, it does not. That's a really important point because one of the reasons we did this was to really determine are Long Covid and ME/CFS the same thing or are they different? I think what our research right now indicates is that ME/CFS is the more severe subtype of Long Covid. So if you have, and I'm going to just generalise because I don't remember the exact numbers from the paper, I'm actually going to go back to the paper that was published by RECOVER in JAMA last year. The case, the first case definition paper, where they showed the four clusters how Long Covid patients clustered into four different groups, and when Cindy and I saw this cluster, this heat map, we both said ME/CFS is going to be in the most severe cluster, the most symptomatic cluster, and that turned out to be true. So, if you think of a Venn diagram, here's Long Covid, and then here is ME/CFS. It's embedded. It's a subset of the whole umbrella, and most of it, 90% of the ME/CFS fits within that Long Covid bubble, but there's 10% that doesn't.

Emily Kate Stephens (44:59): Yeah. Makes sense. Yeah, absolutely. It's something that since I started researching the ME/CFS much more, it's something that's really interested me because the diagnostic criteria that I'd mentioned earlier that requires 50% I since I read that, I've always been wondering. Well, therefore, I don't think I meet the diagnostic criteria for ME/CFS because I probably have it about 40% of the time that it's completely cripplingly debilitating, and then the other part of the time it's just niggling symptoms. That's an interesting point in itself, either for people with Long Covid or ME/CFS, in terms of whether you need to fully fit into a criteria to subsequently be able to gain disability benefits or things like that might enable you to live life, and whether having only crippling disease 40% of the time means that you are just then left to live your life, just because it's just over 50% then I'm classified as being okay, and I think that's just something that we need to be really aware of in terms of the way in which people are treated. Yeah, totally. With ME/CFS as well, because there will be people who are just borderline in terms of that criteria, and it doesn't mean that it is easy for them to live their life.

Suzanne Vernon (46:20): Totally. It's a really important point.

Emily Kate Stephens (46:24): Yeah, it's just fitting into diagnostic criteria. You can't encapsulate everyone. You have to have cut off points. But then I think it is the way that you look at people and treat people at the Bateman Horne Center is you look at the individual and you speak to the person, and you're trying to find ways in which that those people's lives can be improved, whether or not they fit into boxes.

Suzanne Vernon (46:50): Yeah, I guess to me the diagnostic criteria was there, and we know it works, right? We know we can diagnose people with ME/CFS using the IOM diagnostic criteria, so it just seemed logical to us to just operationalize it, use it to identify the people that we could help.

Emily Kate Stephens (47:13): Yeah,

Suzanne Vernon (47:13): And so so it's interesting to put it in that framework. Everybody needs help. Everybody needs to get the diagnosis. Everybody needs. We were just focused in on ME/CFS because it's kind of what we know, what we do.

Emily Kate Stephens (47:29): Could I ask you what you are most excited by, either in terms of the research that you are currently doing yourself and with the team at Bateman Horne Center, or out there in the field, what are you seeing that you feel might really make a difference in this space?

Suzanne Vernon (47:54): I'm really excited that this paper finally got published. I think it's evidence that we've been needing for a very long time. I'm also very excited by the RECOVER initiative because we have not had a study of this scale ever, and now the number of people involved and the range of expertise involved in this multidisciplinary study-it's just bound to come up with answers that will get us to treatments for this community, and it will also get the attention of pharmaceutical companies because pharmaceutical companies have not necessarily been interested in post-infectious ME/CFS or Long Covid because there aren't biomarkers, right? There's not things that they can measure and say, okay, we fixed that, or we've done, we've modified this, we've had this effect. So RECOVER has the opportunity, I think, to really provide that type of evidence base that has been really sought after by the pharmaceutical companies to get involved.

Emily Kate Stephens (49:27): Do you think the way in which RECOVER works legitimises listening to your patient? Because, for example, a lot of your study it is done on huge numbers of people, but a lot of it is to do with patient responses, to be backed by something like RECOVER and therefore the NIH, does that legitimise when patients are saying, "I have improved, I have not improved" It's not something that historically, in terms of scientific studies, was necessarily taken to be sufficient evidence. Does it legitimise that?

Suzanne Vernon (50:02): I sure as hell hope so. Diagnosis is important, right? So people want to understand what it is that's going on with them. So a Long Covid diagnosis and or an ME/CFS diagnosis is important to have, and then the ability for a physician to understand how they can manage that patient is also important. I think if there's, I'm not a clinician; I'm a scientist, so I think if we can make it easier and more efficient to diagnose with objective outcome assessments, you know, objective measures, so that physicians in general can just say, "I think you have this, and oh my goodness, this is the worst part of this thing that you have. You know, your orthostatic intolerance is bad. I can fix that, or I can help you manage that. That's super important from a clinical perspective, and then from a research perspective, being able to identify patients that fit certain types of criteria, whether the study, the trial, for example, really wants to focus on viral reactivation or orthostatic intolerance or cognitive impairment to be able to have the ability to zoom in on the disease characteristics that you want to will also be very important and I do think that RECOVER is helping the physicians of the U.S. To appreciate that you know they have trials now that are designed targeting very very focused areas. I mean, immunomodulatory trials, they have metabolic trials, they have viral persistence trials. So I think yes, it's just going to take time. It's I know it's exasperating how slow stuff moves. I mean, again, this darn paper took me two years, so I hope it does, and I hope things begin to move faster. You know, I think we're snowballing, right? So I think it's just getting bigger and faster and faster, and will make a difference. And again, I hope this paper, which has been picked up by a lot of different media outlets, really helps people appreciate the magnitude of the problem that we have at hand and the attention that it needs.

Emily Kate Stephens (52:34): Fantastic! I think that is a really lovely point on which to end.

Suzanne Vernon (52:40): Thanks for having me, Emily.

Emily Kate Stephens (52:46): I hope that you enjoyed that conversation, and that what Dr. Vernon is researching and the way in which she and the team at the Bateman Horne Center are applying their some 30 years of knowledge of treating these patients is being fed now into this better-funded space, with the hope that we can develop strategies for everyone living with these energy limiting conditions. One of the other comments that I have received is that we've not yet had full episodes into various of the conditions that we're hoping to explore, along with some of the symptom sets and subjects that you have requested. Please do stick with us. We are only 11 episodes in, and this is a project that we're building piece by piece. We feel like we are doing something unique here by trying to encompass all of these conditions. What we are trying to do is jump on some of the latest papers as they come out, or bring to you some of the most influential researchers in these conditions as they have new findings and new work to share. There is so much going on out there, but I can only work as fast as I am able with my condition. So we would love it if you could bear with us, stick with us, keep feeding back because we really, really appreciate knowing the direction that you want us to take this. And I read all your comments and try to take all of them on board. Whether you have been affected for 30 years or for one year with one of these life-limiting conditions, your particular experience is valid and respected, and we all weather and choose to react differently to our situation. One thing I implore you is to please be kind to each other. How you deal with it is your choice. There should be no preaching, but there can be ideas shared. We all have our own paths to navigate. Please take from the people that I speak to what aligns for you. Disregard what does not fit, but always try to stay open to possibility, to new information, and open to hope. Thank you for listening to Make Visible. Please do like, follow, or subscribe to listen to our next episode, where we'll be uncovering more insights into complex chronic illness. This was brought to you by the team at Visible, a group of scientists and engineers whose lives have been affected by energy-limiting health conditions. We're building wearable technology that's helping 100,000 people measure and manage their complex chronic illness. To find out more about what we're working on and how Visible could help you, visit our website at makevisible.com.

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