In this two-part episode of the Brain & Life Podcast, co-host Dr. Katy Peters is joined by Elizabeth Ansell, founder and director of #NotJustFatigue. #NotJustFatigue is a nonprofit organization shining a light on myalgic encephalomyelitis/chronic fatigue syndrome, also known as ME/CFS, and educates patients, clinicians, and health organizations about the condition. Elizabeth shares how raising awareness and furthering research really improve the everyday lives of people living with ME/CFS. Dr. Peters is then joined by Dr. W. Ian Lipkin, who is known internationally for his research and 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. Dr. Lipkin discusses what’s next in ME/CFS research and what the future could hold.
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Additional Resources
- #NotJustFatigue
- How to Fight Fatigue
- Understanding the Impact of Invisible Illnesses on Daily Life
- How Families Are Leading the Charge in Rare Disease Advocacy
Other Brain & Life Episodes on this Topic
- Rare Thoughts on a Rarer Neurologic Condition
- Shedding Light and Love on a Rare Genetic Condition with Deborah Vauclare
- Neurofibromatosis Advocacy and Community Building with the Gilbert Family Foundation
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- Guest: Elizabeth Ansell @NotJustFatigue ; Dr. W. Ian Lipkin @ColumbiaPublicHealth
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Episode Transcript
Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.
Dr. Peters:
And I am Dr. Katy Peters. And this is The Brain & Life podcast.
Hello, listeners. We had so much interesting content on ME/CFS from our guest, Elizabeth Ansell, founder and director of #NotJustFatigue, and our expert, Dr. Ian Lipkin, that we had to share all of it with you over two podcast sessions. So in part two of the podcast, we highlight the importance of research, funding that research and delving into how caregivers and care partners are integral to one's trajectory with battling Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Now Daniel, are you ready for part two? Do you have any remaining questions about ME/CFS?
Dr. Correa:
Well, I'm looking forward to it because I know in this episode you talk with Dr. Lipkin on strategies that he suggests towards improving access to care and testing needed for those living with ME/CFS. But mainly, I'm glad to just hear more about Elizabeth's story and Dr. Lipkin's perspective on this condition. I love their energy and their support for this condition, those living with it, and the need for continued research.
Dr. Peters:
Hello, Brain & Life podcast audience. I am very happy to be here today. I'm your co-host Dr. Katy 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 so 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:
One of the outcomes of the pandemic was that a lot of patients have this post-COVID. And it's almost like you started these symptoms before COVID. How did you fare during the pandemic? Were you okay? Or did you-
Elizabeth Ansell:
I mean, that was a very confusing time. I was in bed when this started going on. I know, with COVID, I know a lot of people from the ME/CFS community almost predicted long COVID because we know, again, with these viral outbreaks that a certain percentage of people do not recover. And so obviously that started happening and people started reporting these symptoms that are called long COVID. And as many as 45% of people with long COVID fit the case definition for ME/CFS. Obviously, these are either... I mean, we don't have the research at this time, but these are clearly post-viral illnesses a lot of the time. And we don't know, is this the same disease, are these sister diseases?
But yeah, I mean it's definitely raised the profile of post-infectious illness and kind of showed that we really have not invested in post-infectious illness. And it's sad because again, when you look at the history of ME/CFS, there are so many points where you're like, "Okay, we could have really invested at this time or this time and this time, and maybe in 2025 today, things would be different." But we can't change the past obviously, but we can work today in the present to change the future. So that's definitely what I'm really focused on.
Dr. Peters:
I'll say that the last American Academy, the fall meeting, American Academy of Neurology 2024, great presentation by Dr. Avi Nath at the NIH, that was talking about how to study this and what drugs to study, and I was so excited that he was finally bringing investigational agents to study ME/CFS. If you don't know Avi Nath, he's awesome.
Elizabeth Ansell:
Yeah. Things really started to change for ME/CFS, in I'd say about 2015, the government tapped the national academies in medicine to do a report on the state of the disease in the country, and they concluded this is a serious physiological disease that we do not know enough about. I think the NIH started their first significant in-house study on ME/CFS in 2016 and 2016. In July, 2017, the CDC removed their recommendations of cognitive behavioral therapy and graded exercise therapy from their website about treatments for ME/CFS. And they also, in 2017 I think, set up three NIH ME/CFS research centers. One at Cornell, one at Columbia, and one at Jackson Laboratories. When they got renewed in the last few years, we still had the ones at Cornell and Columbia. But unfortunately, due to these cuts that have happened this year, the Columbia one is not getting funding anymore.
I know, at #NotJustFatigue, we wrote a letter to Secretary Kennedy talking about how this research center needs to keep going because these cuts, I mean, you're not thinking about the people who are actually living day-to-day with the disease, and who are desperate for help, desperate for treatments. And the way that we get those treatments is government-funded clinical trials, research that leads to those trials. Yeah, I mean that's just a tidbit of what we're fighting for. But yeah.
Dr. Peters:
Keep fighting. And that's what made you want to do... I guess, tell me, what started #NotJustFatigue?
Elizabeth Ansell:
So obviously I've told you about my story, how I wound up in the bed completely incapacitated for years suffering so much. And I really told myself, "If I ever improve even a little, I want to speak out about this." Because nobody ever thinks that this is going to happen to them. People are just living their lives, and I think that's true about any kind of health condition. You think like, oh, well that's not going to happen to me, or if it does happen to me, there are systems put in place for this. But with this, there's just not a lot. And so I wanted to speak out about it. I just became very passionate about it through my own experience with it. And then also just trying to explain the disease to people. I mean, again, this whole chronic fatigue syndrome thing did not reflect at all what I had experienced.
And I would send people links to websites or documentaries or something, and everyone would still be very confused or just be like, "Well, I can't really get through this." And there was just this lack of understanding. I really think some people thought I was just chilling in the bed. And I really wanted to educate people because education, I think, leads to understanding and understanding leads to empathy. And this is certainly a disease that's deserving of recognition and public awareness and research. So that was my inspiration. I kind of just saw a hole there and I really wanted to create a website that had educational materials for your everyday person about the disease that were kind of presented in a creative way, but also very digestible way. So for example, on our website, we have an animated historical timeline. We have a photo documentary series with quotes from real people with the disease. We have a question answer just basic information about the disease. We have extensive lists of citing our sources so that people aren't confused about where we're getting our information.
We have a short film about myself just living with the disease because people don't really understand how severe it can be. And then we also have a docu-series about the disease. It's a 10-part docu-series that are one to two minute videos. Again, very easily digestible topics and videos. And then we also have social media shares. So say you're someone with the disease and you want to put these social media shares to educate your community about it, or say you have a friend with the disease and you want to educate people about it. We just kind of make it easy to share that on social media. And I just thought this would be a great resource for the general public, but specifically, again, say you're diagnosed with a disease and people don't really get it, you can send them this website and there are so many avenues for them to explore, to understand it so that hopefully they can empathize with you and understand something about what you're going through. So that was definitely a lot of my goals with the disease, or with the website.
And from there, once we launched, we launched March 2024. It's just really gone super well, and I've gotten a lot of positive feedback on it. People telling me things like, "Nobody believed me and I sent them this website and now people understand." Which is definitely a huge part of living with this disease or even, yeah, you can send it to friends, family members, doctors, your local politician. So yeah, I think just something being on the web available 24/7 like that is something I really wanted to create. Because of energy limitations, it took me six years to do, but I'm proud I kind of stuck with it and worked within my energy envelope to get there and put it out there.
Dr. Peters:
Well, I think it's great. I checked out all the resources online. It looks great. Instagram looks great. I saw part of the 10-part documentary video series. So I'd just say kudos to you. And I would say, while it may have taken a long time, I think you're making a big impact for all of those patients with ME/CFS.
Elizabeth Ansell:
Thank you so much. I really appreciate that. And yeah, obviously it's not just me who's been involved in this. I worked with an incredible web designer and web developer, and I've also worked with these two great film guys and a lot of people have been involved in this process. Also, just the people with ME/CFS who are willing to share their stories and put those out there in our docu-series, but also our photo documentary series. I mean, it's wild because you connect with people and you wouldn't have necessarily, but you're talking to them and they describe the exact same thing that you've been through and the exact same symptoms that you have. And also the same ways you're feeling; nobody believed me, I was misdiagnosed, there are no treatments. I don't know what to do. So it's really crazy that there are millions of Americans who have this same story.
Before the pandemic, it was kind of estimated that as many as 2.5 million Americans were living with ME/CFS. After, I mean kind of five years after COVID, the CDC changed their website to say that they estimate that 3.3 million Americans are living with ME/CFS. But independent research suggests that it may be as many as 9 million Americans living with ME/CFS. This is certainly a relevant issue just in this day and age in our time, people are living with ME/CFS without any infrastructure or FDA-approved treatments. And more people are getting it every day, so it's definitely something to be on everyone's radar. And like I said, with our advocacy work, we're advocating for more ME/CFS research. Traditionally, ME/CFS is only getting $13 million a year in funding from the NIH, which is honestly insane when you compare it to other diseases that have comparable quality of life. So we really want that research and we really want clinical trials.
And specifically, we're currently advocating for something called the ME/CFS Research Roadmap. The NIH put it out in 2024, but it doesn't have any funding attached. So we're trying to get funding attached to it because this is so important. We're also advocating that ME/CFS be included in the Long COVID Recover Act. The Recover Act has existed for years, but it's been widely criticized, and given as many as 45% of people with long COVID fit the case definition for ME/CFS, it makes sense to be tapping these researchers who have studied ME/CFS for decades and including them in those conversations and including ME/CFS in those conversations as well.
Dr. Peters:
And I really want to understand this because I'm actually the director of supportive care here at our Brain Tumor Center, and so many of our patients, even if they don't have chemotherapy or other treatments, do have some of the same symptoms that you were describing, sort of the exertion, malaise that you discussed, and also the unrelenting fatigue. And then also not getting a restful sleep, which I think is like you go to sleep, but you just cannot feel refreshed. And it really points to a central component, something in the CNS that is going on.
And so what I'm hopeful for, I'm hopeful of course for more change, more advocacy, more opportunities for research and treatments for ME/CSF. CFS, sorry, neurology got me there because I'm a neurologist, CSF is cerebral spinal fluid. Chronic fatigue syndrome is CFS. But what I'm trying to say is we find out a clue on something else and we find something else that can treat another disease, we can use it for another condition. And so I think we really need to come together. I mean, I think you're bringing together an amazing community. And so just again, congratulations to you. But I think you can make it even a broader community. I think we can continue to learn from you across neurologic disciplines.
Elizabeth Ansell:
Yeah, I mean, I think when you look at just the history of medicine and science, obviously, there are so many examples of, "Okay, we were studying this one thing and this led us to discover, or even accidentally discover, a treatment or an understanding of something else." So I mean, I think the past has taught anyone in this field that that can happen, and that is true. I'll also point out that, I mean, ME/CFS is definitely thought of as a heterogeneous disease. I don't think there's... Again, it hasn't been discovered, but there's not many people who think, oh, there'll be one cure one day. Again, like I said, people definitely use these off-label treatments.
And the prognosis for ME/CFS is some people stay the same, some people get worse, some people improve. And I mean, we don't even have the research to know why that is. And I mean, we need to definitely be studying that and figure out what subsets of people are responding to what treatments and why. And then, yeah, I mean with that understanding obviously comes, maybe it can be applied to different things, whether it's long COVID or post-infectious Lyme disease, or all sorts of things, because there's definitely, the more you dive into this stuff, you realize there is just so much that we don't know, and it's always evolving. And I mean, I think that's why it's so important to invest in medical research.
Dr. Peters:
So I agree with you completely. So we need to fund this and we need to get some answers. But I think that you're starting a movement, and so I just completely appreciate your time today, your expertise, and for educating us on ME/CFS. So I just want everybody to check out #NotJustFatigue on Instagram. Also check out the website. I think you listed the website before. Can you tell us again?
Elizabeth Ansell:
Yeah, definitely. It's www.notjustfatigue.org. Would love if everyone went there or sent it again to their friends and family to go there, just to educate yourself on ME/CFS and kind of what people with this disease are experiencing. We're also on TikTok and Instagram and Twitter, and we frequently post updates about what we're up to. I know we kind of just filmed something about the two NIH research centers on ME/CFS, so there's definitely a lot of exciting things coming soon in that area, but also our advocacy efforts. So yeah, definitely.
Dr. Peters:
Check Elizabeth out. Thank you very much again, and we hope to have you back again soon.
Elizabeth Ansell:
Yeah, no, this has been great. I really enjoyed our conversation. Thank you for having me. Thank you so much.
Dr. Correa:
Want to learn more about the conditions discussed in this episode and other factors that could impact your brain health? For the latest on causes, symptoms, diagnosis, treatment, and management of more than 250 of some of the most common and rare neurologic conditions, please visit brainandlife.org/disorders.
Dr. Peters:
Hello, audience to the Brain & Life podcast. Thank you for joining us again. And I'm your podcast co-host Dr. Katy 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. 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, and I want to welcome him to our podcast.
Dr. Lipkin:
Thank you, Katy. Good to be here.
Dr. Peters:
Now, because I'm a neurologist and I wear my neurologist hat, like have looked at the cerebral spinal fluid of patients? Or do you have any brain tissue maybe postmortem that you've evaluated that gives us any more clues?
Dr. Lipkin:
I'm a neurologist as well, and I would love to have those kinds of reagents to work with, on the one hand. On the other hand, I've taken care of patients and I've lost a few to suicide. And I have people who have written me and said, "I want to donate my body to this work." And I say, "Please don't." Because these people, or some of these people, are so desperate and so unhappy that we've seen suicides. So we don't want to encourage that. Now, I'm not suggesting that a spinal tap falls into that category. Now, your former mentor, Avi Nath, has done a lot of spinal taps and we are collaborating with him.
Dr. Peters:
Oh, great.
Dr. Lipkin:
We are not doing taps here, but we're happy to look at those materials. And we have reported that in patients with ME/CFS, you can find higher levels of pro-inflammatory cytokines than in matched controls.
Dr. Peters:
Very interesting. Very interesting. I'm also a neuro-oncologist, and one of the, probably the number one, symptom in my patients is fatigue. And it doesn't necessarily have to do with our patients having a chemotherapy or radiation. It is a form of, I often say, central fatigue. Similar to what is seen in MS. Do you see any parallels there since fatigue or I guess the cognitive symptoms of Chronic Fatigue Syndrome and Myalgic Encephalomyelitis can really mimic that. Can you see any parallels there?
Dr. Lipkin:
I think that's plausible. I do know that many of the patients we've evaluated have, as their primary complaint, the cognitive dysfunction. And it requires energy to process information, right? I mean, 25% of the blood flow, body goes to the brain. It's a very active organ. And I don't think people really thought about the importance of energy. Now, we have found abnormalities in the mitochondrial function. We haven't looked at mitochondria in brain, but people have looked at muscle mitochondria. I think we need to do more of that sort of work.
Dr. Peters:
Yeah. Because it's not just about finding the true pathology, but also I think what you're really delving in is what's happening to the, I guess, the person/the host when they get some kind of environmental exposure, whether it's the environment and how their own body handles it and regulates it. I know that other researchers have looked at disruptions in the gut microbiome. What are your thoughts about that in ME/CFS?
Dr. Lipkin:
Well, we wrote, I think we published the first paper on microbiome analyses in ME/CFS. And since, did a second paper that was much larger. What we found was that patients with ME/CFS had dysbiosis, and that the most remarkable finding was a decrease in levels of specific bacteria that produce short-chain fatty acids. And these short-chain fatty acids are important for maintaining the integrity of the lining of the large intestine, which is known as the mucosa for those of you who are more sophisticated members of your audience.
And we hypothesized that bacteria and bacterial products may transit from the inside of the GI tract to the systemic circulation and trigger innate immune responses. Which would then result in some of these phenomena that people perceive as either central fatigue or peripheral fatigue. And the other thing about these short-chain fatty acids is that they have the ability to down-regulate inflammatory responses. Some people who were treated with pre and probiotics have excellent responses to that alone and they find improvement. But I've yet to find anybody who has responded to just pre and probiotics.
Dr. Peters:
So it's going to probably be some kind of combination of therapies. It's not going to probably be one therapy. What is available right now for treatment for patients?
Dr. Lipkin:
Well, so I wish I could give you a more satisfactory answer. Sadly, not much. I mean, there are people who have autonomic dysfunction and they respond to the usual things that are useful for treatment of things like hypotension. You can, as I said, I put everybody I talk to, although I'm not really seeing patients for the most part, but I suggest everybody have be tested for dysbiosis or they can prophylactically empirically use pre and probiotics to improve their GI diet. There are people who respond to a drug called Ampligen, which is an immune stimulant. It triggers the response of a particular region's type of receptor inside of cells. It can be very, very helpful. I've seen people respond very positively to that. There's a very small proportion of people who have herpes virus infections who respond to anti-herpes drugs.
But the other things I'm afraid to even talk about, because I don't want to endorse anything that may not work. The thing I will say is that there are people who go for fairly invasive sorts of surgical operations, like in the back of the brain, opening up the skull and so on, which I think are very dangerous. And I've seen very bad outcomes with that. Though there's at least there are at least a few people who claim that they improved dramatically. I wouldn't object to anybody having neuroimaging studies, but I would make sure that I got second and third opinions before I would recommend something like a neurosurgical approach.
Dr. Peters:
I completely agree. And I think probably maybe the first step, I think the treatments are warranted now, but I think what we need to do is really permeate medical education, train people about this condition appropriately and how to evaluate it appropriately, and to be compassionate and caring for our people that are affected by this.
Dr. Lipkin:
So I agree, and I just want to emphasize one thing. I think that this should be part of every medical curriculum.
Dr. Peters:
I agree completely. And I think that another part of the equation is our care partners, their loved ones, these patients may not be able to work, they may not be able to be a partner in those relationships. What can you do to sort of support those care partners and to support those relationships?
Dr. Lipkin:
Well, I think you've hit a very important point there. And that is, many people have thought to be malingering or lazy, and they're not. So the first thing you can do is, by rendering an accurate diagnosis, you can make it clear that this person needs certain sorts of considerations. There are things they can do and things that they can't do, and they shouldn't feel guilty, and they shouldn't feel ashamed if they can't do these things.
I'm optimistic that if we get the resources needed to complete the basic research that we understand the underpinnings of these disorders, that we can have real treatments. And it's not going to take that long. But as I said, when you get defunded and you have to lay off all the people who are doing the work, not only can't you do the work at that point, but then you have to overcome all this inertia to get going again, even when the spigot is turned back on.
Dr. Peters:
Well, I applaud your efforts and we hope for brighter days for all of our patients, for continued efforts to find better treatments for ME/CFS. And I would say also a better understanding by our community, by leadership, and by clinicians. So Dr. Lipkin, I can just say thank you very much for your time, your expertise, and your advocacy to help a condition that is very common, but poorly understood.
Dr. Lipkin:
Thank you. Always a pleasure.
Dr. Correa:
Thank you again for joining us today on the Brain & 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 & Life magazine for free at brainandlife.org.
Dr. Peters:
Also, for each episode, you can find out how to connect with our team and our guests along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to blpodcast@brainandlife.org and leave us a message at 612 928 6206.
Dr. Correa:
You can also find that information in our show notes, and you can follow Katy and me and the Brain & Life magazine on many of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online @NeuroDrCorrea.
Dr. Peters:
And Dr. Katy Peters joining you from Durham, North Carolina and online @KatyPetersMDPhD.
Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.
Dr. Peters:
We hope together we can take steps to better brain health and each thrive with our own abilities every day.
Dr. Correa:
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