Creating an Advocacy Movement with #NotJustFatigue’s Elizabeth Ansell: Part One

Episode Transcript

Dr. Correa:
From the American Academy of Neurology. I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katie Peters, and this is the Brain and Life Podcast. Welcome Brain and Life Podcast audience. We're on social media and we like to see those clever hashtags that really depends on the purpose of the hashtag. Some of them are a little silly, but if the hashtag is linked to advocacy, it can be really powerful because a message can spread, it can stick and then spark others into action. I know one of my favorites is really the hashtag ice bucket challenge, which is all in regards to ALS advocacy. Daniel, you have any popular hashtags you follow?

Dr. Correa:
I mean, you're adding at me, you're hashtagging me. Even though we've been working with the podcast for a while, the social media efforts through the Brain and Life Magazine, I feel like I'm still learning a lot of this within the epilepsy community. There's a lot of promotion of Epilepsy Awareness Month, our National Epilepsy Awareness Month, and there's a #NEAM for that. If you follow that and you want to learn more about epilepsy throughout the year, there will be more awareness activities that will use that hashtag. Then there are several organizations that celebrate Epilepsy Day, and then for anyone who wants more information or to help promote information about greater understanding of sudden unexpected death in epilepsy, then there is also the #SUDEP. Then all of us and every condition can benefit from greater mental health awareness, that is also a hashtag that's out there.
Both the AAN, the Brain and Life Magazine and many other organizations are using the #BrainHealth and #BrainHealthAwarenessWeek to create and bring more attention to more issues around brain health. I want to hear from some of our listeners, are there hashtags that you find helpful that you want to see more use of and either greater understanding about a condition that is present and for you and your family or that you're wondering or you've encountered questions about? Bring that information to us and hopefully we can include some of that discussion in one of our question answer episodes.

Dr. Peters:
Absolutely. I'd love to hear from our listeners, and if anyone wants to share a tutorial for Instagram with me, because I'm always forgetting to look at tag someone or add a hashtag, I'd really appreciate it, but I've got a new hashtag for you. It's #NotJustFatigue. This actually comes from a nonprofit organization of the same name, Not Just Fatigue, that is shining a light on the condition and symptoms of Myalgic Encephalomyelitis chronic Fatigue Syndrome, also known as ME/CFS, and it's all about educating patients, clinicians like us and health organizations about this condition. We talked with the founder and director of #NotJustFatigue, Elizabeth Ansell, and then we will also hear from our world-renowned expert Dr. Ian Lipkin. This episode is part one of our conversation with Elizabeth Ansell about ME and CFS. Make sure to come back next week to hear more from Elizabeth and Dr. Lipkin discuss research and what the future looks like for people living with this condition.
Hello, Brain and Life Podcast audience. I am very happy to be here today. I'm your co-host Dr. Katie Peters, and I am just so happy to have our patient advocate and documentarian Elizabeth Ansell here with us today. Elizabeth is the founder and director of #NotJustFatigue, and I can't wait for all of us to really learn about this. It is a nonprofit organization that is shining the light on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It's a lot to say, but it's very important and it's also known as ME/CFS, and this movement is really about educating patients, educating clinicians, healthcare providers and health organizations and our politicians about this condition. She is here today to teach us about this condition and tell us what it means to be an advocate about it. Elizabeth, welcome.

Elizabeth Ansell:
Yeah, no, thank you so much for having me on. I mean, I really appreciate it. This is great.

Dr. Peters:
I just gave a really brief introduction because you're the expert on this, but before we sort of delve into ME/CFS, how about just tell me a little more about yourself and where you're joining us from today.

Elizabeth Ansell:
Yeah, no, absolutely. My name's Elizabeth Ansell. I am a person with ME/CFS. I currently live in Connecticut with my parents as I've been bedbound from ME/CFS for the past nine years. I haven't walked in nine years and I have full-time 24/7 caregivers. Before that, I mean I was your average healthy person. I lived in New York City. I worked in TV production for places like Showtime and ABC News, and I really just loved life. I loved my friends and having fun, and I kind of thought the future would be great, and then this disease happened, so things change obviously. Yeah, that's a brief bio.

Dr. Peters:
Well, it sounds like you've had to contend with a lot, but I mean, I think with dealing with the condition that you have, but then also, coming out as an advocate and using your skillset is so important. Before we talk really about #NotJustFatigue and the whole illness, you've been an award-winning content creator for TV and film. Can you tell us more about what that is? What is a content creator?

Elizabeth Ansell:
I had grown up just always doing creative projects and in college I was an English major with a cinema studies emphasis, but took a lot of photography classes. This isn't necessarily something new for me. Like I said, I kind of moved to New York after college and I wanted to work in TV production, specifically non-fiction like content. I worked at some production companies and I worked at Showtime doing some trailers, but also behind the scenes interviews and stuff for digital and on-demand and short form pieces. Then also, the last job I had before I had to quit because I had gotten so sick. I worked at ABC News kind of in their in-house production company that did non-fiction content productions. Yeah, I mean, I've kind of been around this space for a while kind of taking those skillsets and thinking to myself, how can I apply that to maybe getting the word out about this disease? That was kind of my thought process with everything.

Dr. Peters:
Well, it sounds like you're the perfect person to teach others about this, and so I just want to thank you for sharing your skillset and doing that, so thank you very much. Now, let's get into the nitty-gritty, so what is exactly myalgic encephalomyelitis chronic fatigue syndrome?

Elizabeth Ansell:
Yeah, absolutely. ME/CFS is a complex neuroimmune neuroinflammatory disease that affects all parts of the body, including your central nervous system, your immune system, your autonomic nervous system, your energy metabolism system, and so on. The hallmark symptom is not fatigue. Obviously, there are like 60 symptoms as many as that, and it is one, but the hallmark symptom is called post-exertional malaise, which means that when you exert yourself emotionally, physically, or mentally, there's going to be a payback. A lot of people with the disease call it having a crash. I know that if I'm just lying in bed like I am now, kind of horizontal, I know that that's within my energy limit and I'm not going to experience post-exertional malaise. If I try to sit up or if I try to stand up that is crossing my energy limit and suddenly I'm going to have an eruption of symptoms, as I mentioned, they're up to 60 recorded symptoms and they present differently for different people.
For me, if I go over my energy limit, my lymph nodes start throbbing, I get a horrible sore throat, I get muscle pain, joint pain, headaches, brain fog increases, sleep problems increase and muscle fatigability, suddenly my arms will feel like a thousand pounds and I can't even lift them over my head and someone might have to feed me. Most people with the disease, I mean, everyone has a different energy limit, but you want to stay under your energy limit so that you don't experience post-exertional malaise, because having a crash can take days to recover from, weeks to recover from, maybe months even years, it might even be permanent. I've had crashes that permanently take my level from here, like up high to down low. That's kind of a scary thing obviously. Living with this kind of the facts about it, but you're also living day-to-day being like, "Okay, I don't want to go over my energy limit because I don't want to experience a worsening in symptoms."

Dr. Peters:
Why do you think it's called? There's two names for the condition, there's sort of the updated name, and I know there's been a lot to sort of codify the definition for not just to give it a name, but also to capture the patient experience more, but then also to promote research, right?

Elizabeth Ansell:
Yeah, absolutely. The name has been a huge point of contention for decades. Essentially, just to go into a very, very brief history of ME/CFS and for anyone who wants to learn more on our website, www.notjustfatigue.org, if you click the past section, we have an animated historical timeline of the entire disease, which I think is really helpful and educational and understanding the disease. Basically, this is not just a new disease. This has been around for decades if not hundreds of years, just without a name. We know that when there are viral outbreaks, a certain percentage of people don't recover. From these viral outbreaks, again, in the past going back like a hundred years or something, there would be people who reported sore throat, painful lymph nodes, muscle fatigability and neurological problems, but there was no name for it. Eventually in 1969, the World Health Organization named this Myalgic Encephalomyelitis, which means muscle pain and inflammation of the brain and spinal cord.
Then in 1970, these British psychiatrists noticed that most of these patients reporting these symptoms were women, and with that basis thought that the entire phenomenon was psychosomatic, which was really detrimental for the disease and has taken decades to get away from. There was an outbreak. Again, outbreak doesn't mean the disease is contagious, it just means after viral outbreaks this happens. That happened in 1984 in Incline Village and it got a ton of press for some reason, and the CDC went and investigated it, and in 1988 they came up with this thing called chronic fatigue syndrome, and they named it chronic fatigue syndrome, even though, I mean every person with the disease hates that name, it's so stigmatizing. It suggests that you're just tired or lazy when really you're dealing with this full-blown, life-altering, disabling, chronic illness that really there's not a lot of understanding of. That's the short version about how this name came about. The government currently refers to it as ME/CFS. Some people will just say ME. I think the issue with just saying myalgic encephalomyelitis is that kind of the mechanism of the disease hasn't been fully understood.

Dr. Peters:
I agree.

Elizabeth Ansell:
That's why people will take issue with that as well. There have been some other names suggested over the years, but just a lot of people, again, in the community, they refer to it as ME/CFS or ME, and the government currently refers to it as ME/CFS on their websites and in their proceedings.

Dr. Peters:
Name is really important in how the name is perceived and where our names come from. I am really glad that you mentioned that. I actually have a blog that I need to get writing a little bit more on called What's in a Name for Neurologic Conditions. It can mean a whole lot in how we perceive it. So I'm really glad you touched on that and I'm going to ask a little bit more about you because and your journey. I hope that's okay.

Elizabeth Ansell:
Yeah, absolutely.

Dr. Peters:
When you first had symptoms, how did it first start?

Elizabeth Ansell:
It's interesting because you'll talk to some people with ME/CFS and they'll be like, "I was 100% healthy and I got a virus, and then I developed ME/CFS," but then you'll also talk to some people who will be like, "That is true, but I had strange health problems for, unexplained health problems for a long time, and then it was kind of a virus that knocked me out." I'm kind of in the latter group. I've had health problems, mostly unexplained since I was 14 years old. From when I was 14 to 26, there was some strange things and I had been going to doctors, but no one could really explain this because my tests would come back normal. It's funny, I actually had this nurse practitioner once I had a test keep coming back normal, and she said something very poignant. She said, "Just because our tests are coming back normal doesn't mean something's not wrong. It means that we are doing the wrong tests or that the right tests simply haven't been invented yet."
That was kind of a turning point for me because I thought, "Wow, that must be what's going on," but ultimately, I was still able to live a very, again, your average life. The symptoms weren't interfering in my ability to function. When I was 26, I started getting joint pain and muscle pain and problems sleeping and fatigue and tingling in my fingers and toes and headaches and brain fog. I started writing the wrong letters or numbers at work and I was like, "This is really weird." I thought, "I need to go to the doctor. I need to see a neurologist. I don't know." That's most people's thought process. I go to the doctor and I really thought they'd be able to help me or would send me in the right direction. Again, I was living in New York at the time and everything that happened from that point onwards was just not what I expected. I was shuttled around to specialists after specialists after specialists. Every single one of them, I was misdiagnosed nine times.

Dr. Peters:
Oh, wow.

Elizabeth Ansell:
Yeah, which is absolutely wild. Then some of them just were like, "I don't know." Some of them suggested it was psychosomatic. That went on for I was moderately ill with ME/CFS at the time, most people classify themselves as mild, moderate, severe or very severe. I was moderate at the time. Eventually, I just had to quit my job because I was too sick to be able to do it. I got to the point about two years in where I was like, "If I don't figure out what's wrong with me, no one's going to," because at the end of the day, I mean, everyone kind of has to care about their health more than anyone else does. At that time, I knew absolutely nothing about science. I'm talking nothing. The last time I paid attention to science, I was maybe 16 and I'm sitting there reading journal articles online, Googling stuff, literally printing out pages of a biology textbook.
I was really determined to figure out what was wrong. Eventually I came across this thing called ME/CFS, and I thought about this time I had walked over the Williamsburg Bridge and when I got home I was like bright red and had painful lymph nodes in a sore throat. Then I was incapacitated for six weeks, which is clearly post-exertional malaise. I thought, "Wow, I think I have ME/CFS." There are very few specialists of ME/CFS in the entire country. I'm talking around 20, maybe less. At the time there were two in New York, I saw both of them. Again, there's no biomarker for the disease, but there are tests that suggest the disease and then also, your clinical history. They both diagnosed me with ME/CFS. Since then I've been diagnosed. I've seen other doctors both in person and over telehealth, and every single one has diagnosed me with ME/CFS.
I was devastated because I thought there was something maybe someone could do to help, but there are zero FDA-approved treatments for ME/CFS because kind of this misunderstanding and stigma of the disease that has gone on for decades. I mean, the government hasn't invested in medical research towards the disease and finding treatments to improve people's quality of life. That was very heartbreaking, but again, a relief to know what was wrong. Then what happened from there is essentially, I think, I got another virus and I had a bad crash going over my energy limit, and the next thing I knew, my legs felt like jello and I could not even walk and I thought, "I need to get to my parents' home right now. I can't take care of myself." That was in 2016 and I ended up in bed at my parents' home in the dark, unable to speak or move with full-time caregivers giving me a smoothie with a straw that I could barely sip and turning me back and forth.
I really didn't even know suffering like that existed. I literally couldn't even lift my finger. It was like I was just in this body with a monologue, internal monologue, suffering horribly. The thing was, there's no one coming to save you. There's nothing you can really do except there are a lot of people with ME/CFS. There's no FDA-approved treatments, but there are some off-label things that people use that help some people. That went on for two and a half years, and at that point I thought to myself, "If I ever improve, I'm going to speak about this disease because this is crazy. This is a wild experience and just with no systems put in place for people with this disease." Eventually, I improved to the point where I could move around the bed and talk to people and get in a reclining wheelchair and take a wheelchair shower and go outside and whatnot. That's kind of where I am now.

Dr. Peters:
But you also recovered enough to also start this #NotJustFatigue. I want to give you kudos for that, but I want to point out a couple things for our listeners that I think are really important that you said is that our technology is only good as our technology is. I think that that was very clear. I'm glad somebody came to that conclusion with you. Sometimes my patients will come to me, they'll be having a symptom, and I don't necessarily have the test that will explain it. MRIs are still, even though they're great, we can look at things all day long and say they're normal. If you are having a symptom, there's still something going on.
Elizabeth, thank you so much for joining us today and I can't wait to continue this conversation in part two next week.

Elizabeth Ansell:
Thank you for having me. Thank you so much.

Dr. Correa:
Can't get enough of the Brain and Life Podcast? Keep the conversation going on social media when you follow @BrainandLifeMag or visit Brainandlife.org as your host. We would also like to hear from you on Twitter @NeuroDrCorrea and @AudreyNathMDPhD.

Dr. Peters:
Hello audience to the Brain and Life Podcast. Thank you for joining us again, and I'm your podcast co-host Dr. Katie Peters, and I'm honored to introduce our medical expert, Dr. Ian Lipkin, who will be discussing aspects of Myalgic Encephalomyelitis Chronic Fatigue Syndrome Dr. Ian Lipkin is the John Snow Professor of Epidemiology, professor of Neurology and professor of Pathology and Cell Biology at Columbia University Irving Medical Center, Mailman School of Public Health. He's the director for the Center for Infection and Immunity where he has pioneered research on infectious disease and their long-term impacts on patients. Welcome to our podcast.

Dr. Lipkin:
Thank you, Katie. Good to be here.

Dr. Peters:
Wonderful for you to join us today. I just gave a very brief introduction. Can you tell us a little more about yourself and where you're joining us from today.

Dr. Lipkin:
I'm looking over the George Washington Bridge and the Henry Hudson River. I'm at the Bay sort of northern tip of Manhattan Island, which is where the Mailman school and the medical center are located. We have a large group here that, as you said, studies acute diseases and chronic diseases using the same toolkit. Things that we've discovered that allow us to not only find the infectious agents themselves, but also, their footprints by looking for antibodies and the impact of infection on immune triggers for various disorders, including ME/CFS.

Dr. Peters:
You've also studied the long-term effects of the COVID-19 virus. Can you tell us a little bit more about what are the long-term effects and what is ME/CFS?

Dr. Lipkin:
Well, Tony Komaroff of Harvard and I have written a couple of review articles comparing ME/CFS and COVID. There are similarities and there distinctions and there's overlap in many patients, but I would not consider them really to be the same disorder even though there may be common features. ME/CFS is a disorder that is not rare. It's three to 4 million Americans alone has an impact economically about $50 billion per annum. It should be taken more seriously by the federal government than it has.
I would say, in fact, if you go back and look at the maximal investment in ME/CFS at the peak of funding, which is 2024, it was only $16 million a year. You look at that vis-a-vis the number of people impacted and it's largely been neglected. I've been interested in this syndrome really since the mid-1980s when I saw some of the first patients who had been evaluated by Dan Peterson in Incline Village Nevada, it's quiescent for a while until really the mid-1990s when there was some suggestion that there was a virus we had discovered that people thought might be implicated in this disorder called Borna Disease virus, which is really primarily a viral infection of horses and other ungulates, animals that eat grass.
We kind of surprised actually that came up, but this was what really led me to first begin looking seriously at this particular disorder, and I went to Sweden and met with Brigitte Avengard, who was a pioneer in that work on this particular syndrome. We studied a series of plasma and serum samples that she collected from a town where there had been an outbreak very similar to what had been described in Incline Village looking for evidence of this one particular virus, and we did not find it.
On the other hand, we did find that three quarters of the patients we examined had antibodies that were reactive with things that they shouldn't have been reactive with, [inaudible 00:28:36] not even found in nature. We posited at that time that this was not a psychological illness as many people thought, but it was biological. This was really the first evidence clearly that there was something abnormally in immune responses.
What is ME/CFS? Well, it is an incapacitating disorder, used to be called Chronic Fatigue Syndrome, but that under emphasized in many people's minds the full impact of the disorder because many people have cognitive dysfunction, which is referred to as brain fog. They have autonomic problems that, as I say, when they stand up they get lightheaded or they have changes in pulse rate, a whole range of things, which can be problems. Sometimes there's overlaps, so they have with other disorders like fibromyalgia, so they have pain and stiffness and so on.
God, it's almost 15 years ago now, we helped someone who was a father very generously asked us whether or not there was any way he could repay us, if you will, for the help that we'd given his son who'd started out as an A student, had become so impaired that he couldn't complete his work. We treated him with antivirals, he improved dramatically, became a straight A student again, graduated, got married and so on. What Glenn Hutchins, the father of this affected patient did was to give us support to begin collecting biological samples that could be shared broadly with people who wanted to look into causes of ME/CFS, as well as some resources so we could begin doing some work of our own. I've done many things with ME/CFS really beginning in the mid-1990s and then, obviously, more recently, under the auspices of the Center for Solutions for ME/CFS, but I'm sure we'll get into that during the course of our conversation.

Dr. Peters:
I like how you have it for Center for Solutions and I guess we all get exposed to different viruses and not everybody develops ME/CFS. What are the risk factors for somebody to actually develop that pattern and to have those symptoms?

Dr. Lipkin:
That's a very good question. We really don't yet understand why some people exposed to similar agents may or may not have onset of disease. Just like with long COVID, not everybody who is infected with SARS-CoV-2 develops long COVID and long COVID is a wide range of things. I mean, some people have lung problems, some people have heart problems, some people have somebody that looks just like ME/CFS. There's another disorder called Gulf War Illness, which hit a large number of veterans coming out of the Gulf War in '90, '91 who also had an overlap with what we recognize as ME/CFS. ME/CFS at present is really described as a disorder of more than six months duration that has certain characteristic features for which there is no other explanation. There still is no accepted objective diagnostic laboratory test that allows you to say unequivocally, someone has ME/CFS. It remains a clinical diagnosis.

Dr. Peters:
Because it remains a clinical diagnosis, unfortunately, patients are going to be misdiagnosed. They're going to have to undergo lots of testing usually to get a diagnosis of this, maybe even treatments that are not warranted. Then also, some people face the stigma that they say that this is just in their head. When we had a nice discussion with Elizabeth Ansell, she really touched on all those little points, so what should we do? I like the idea of we need solutions. I like the name of that center. What should we do for those patients that are in that scenario, that are in that predicament where they're being misdiagnosed or diagnosed too late?

Dr. Lipkin:
You've raised, I think, the most important problem, which is this is an underdiagnosed syndrome. We don't have a lot to offer people though. Hopefully, that will change with more investments in research, but at minimum we should be able to reassure people that they're not malingering. We should make it possible for them to get disability if they are disabled and we should get their family, their loved ones or communities to take seriously the fact that they are disabled. This is one of the things that patients are most disturbed by. The people who make diagnoses of ME/CFS with real confidence are very few. I can think of maybe a handful of people. I would recommend if somebody would to say to me, "Look, I think I have ME/CFS and I want to be evaluated and see if there's any treatment that might be valuable." As I say, only a handful of people whose judgment on which I'm confident, and this is a problem.
I think that primary care docs and whether they be pediatricians, internists, OB/GYNs, family practitioners need to get exposure to the syndrome to understand it and find ways in which they can provide some sort of support to patients. It's not really part of medical curriculum yet. It's not, as I say, it's not really taken seriously by NIH. If you're putting $16 million a year into studying a syndrome like this, far less than this put into things which are far more rare, so that is a problem in its own right. There was a period about seven, eight years ago when there was a plan to have three centers that would relate with one another, support, check one another's findings and so forth. Three centers were established. Now, in the second [inaudible 00:34:56] after five years, only two centers were awarded support. In the middle of October we lost all of our support, as a function of what happened with the Trump administration.
At present, there's only one center and the amount of money allocated this time around was the same thing that was planned eight years ago. With inflation and so forth, this means that we're now getting 25% of the investment that we had when we first talked about this program. I think one of the challenges for patients with ME/CFS is that because they're so ill, they don't have the energy to advocate on their own behalf, we try to advocate for them. We try to include, for example, an ME/CFS control group when there was a lot of funding for long COVID and we were not successful.
Long COVID because it was, obviously, so many people had experience with a sequelae of SARS-CoV-2 infection, there was a large infusion of resources to try to address this problem because people realized that there were any large numbers of people involved. One of the things that came out of that unfortunate sequelae, if you will, of SARS-CoV-2 infections, was that people realize that infections could result in a syndrome like ME/CFS. Three quarters of people with ME/CFS report a period what we call a prodrome, where they feel as though they had some sort of infection or inflammatory disease that was, as I say, preceded the onset of what later become known as ME/CFS. The difference here with long COVID is that we had a clear inciting event, before that these people were normal.

Dr. Peters:
Do you see any sort of similarities biologically between those long COVID sufferers and ME/CFS?

Dr. Lipkin:
There are similarities in the symptoms that some of these patients have. With long COVID, people sometimes have structural damage, which explains their disability, right? If you don't get blood supply to an organ and you have liver failure or muscle failure or cardiac disease and so forth, it's fairly straightforward. Whereas, people with ME/CFS don't have those kinds of hallmarks. What you see is primarily a disorder associated with inflammation and with metabolic dysfunction. Yes, there are similarities, but the paths are not quite clear. We will know more, I'm sure, as we begin to look at converging studies in pace with ME/CFS and long COVID. One of our problems of course is that as of the middle of October, our grants were terminated. We don't have the ability to do the various things that we intended to do. We had three projects. One of them was called the Good Day Bad Day Project, which was a sort of a longitudinal study of individual patients who would use an app, would record how they fell from day-to-day.
On days when they fell particularly poorly, a coordinator would go out and collect samples, bring them back, they would return to that patient's home three weeks later, collect a second set, and we would look for differences between the metabolites and the proteins and the cytokines and viral flora and so forth when they felt poorly and when they felt better. Three weeks later, we also had the opportunity to look for antibodies. What typically happens, as you know, is that three, four weeks after an infection, antibody titers go up. We were going to use all those data in aggregate to try to understand whether or not there might be some viral trigger that are important or bacterial or fungal trigger. In addition, we were going to do study proteins and metabolites and see if we could get insights into what was different when people felt well or poorly.
This would then allow us to talk about clinical trials because we would understand enough about what was going wrong that we could make various hypotheses that would lead to drugs that might mitigate disease or even prevent it. We had another one, a second project, which is a collaboration with the UK where we were going to try to identify genetic risk factors so we could find out who is at risk for developing ME/CFS as a function of different types of exposures. That, in turn, might allow us to come up with strategies to prevent the onset of ME/CFS. The last one, which is another very interesting sort of an approach, was to use a repository of plasma and serum samples collected by the Department of Defense so they could track HIV in the Army, Navy, and Air Force enlisted people. We were going to look for periods when people were healthy and when they became ill to see whether or not we could identify something that triggered disease, some sort of an exposure.
It was a combination of things looking at manifestations of disease, what correlates with severity, genetic factors that may be implicated, and ultimately, we were going to do epigenetic studies, which are studies where you're looking at how the genome is modified. Now, we did find in some of our preliminary data that there are differences in the proteins and the inflammation and metabolites mostly with respect to severity in different populations of people with ME/CFS. Women are affected more severely clinically, and they have different markers, if you will, of disease and particularly older women over the age of 45, lower levels of estradiol, postmenopausal. They also have more evidence of severe derangements in some of their body chemistries. We really feel as though we're really honing in on a series of actionable druggable targets, and that's what's so discouraging. Right?

Dr. Peters:
Yeah, it sounds like those were very probative projects and I mean, I think all of them are very noteworthy, but I have to say that the first one is quite compelling to essentially, I love the idea of the Good Day Bad Day, catching them at the time when they're having that symptomatology and then following it forward through. Thank you, Dr. Lipkin.
Listeners, don't forget to come back next week to hear Elizabeth and Dr. Ian Lipkin discuss research care partners and what the future looks like for people living with Myalgic Encephalomyelitis Chronic Fatigue Syndrome, also known as ME/CFS.

Dr. Correa:
Thank you, again, for joining us today on the Brain and Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain and Life Magazine for free at Brainandlife.org.

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Dr. Correa:
You can also find that information in our show notes, and you can follow Katie and me and the Brain and Life Magazine on many of your preferred social media channels. We are your host, Dr. Daniel Correa, connecting with you from New York City and online @NeuroDrCorrea.

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And Dr. Katie Peters joining you from Durham, North Carolina and online @KatiePetersMDPhD.

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Creating an Advocacy Movement with #NotJustFatigue’s Elizabeth Ansell: Part One

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