Hi. This week, WKSU did a 35 minute feature on my story of living with ME/CFS. I was joined by the the Founder and CEO/President of Open Medicine Foundation, Linda Tannenbaum. I so appreciate my friend Jeff StClair, who helped to make the whole thing happen. I know I ask this a lot, but this time I’m serious… Would you please share this post with one person? Please help spread the word about this devastating illness that is terribly underrepresented in the media. Thank you!
Living in a Body in Rebellion
Rick Jackson — It is the Sound of Ideas from Ideastream Public Media. I'm Rick Jackson. Thank you for joining us this Tuesday. I hope you had a safe and relaxing holiday weekend. Today we'll be talking about the roughly 2 million Americans who suffer from a poorly understood, often debilitating illness - Chronic Fatigue Syndrome. Actually, its full name is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, generally abbreviated as ME/CFS. This hour, we will begin by meeting a local musician who has been documenting his struggle with ME/CFS for years through social media. And while his story may sound rare, health experts predict that more people will have to deal with Chronic Fatigue Syndrome in coming years because it's one of the most common symptoms being reported by the roughly 20 million Americans with Long COVID. First, we'll hear about what it means to live with ME/CFS disease from a local musician. In around 15 minutes, we'll take your comments and questions, as we bring in a researcher who's leading efforts to better understand this devastating condition. So here's Ideastream Public Media's Jeff St. Clair with the story of a friend who's living with chronic fatigue syndrome. Hi, everyone.
Hal - Hi everyone, my name is Hal Walker. I've been living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a very severe form for the last six months.
Jeff StClair — What is Myal…
Hal —Myalgic Encephalomyelitis. And it's not just that I'm tired all the time. It's not that I'm working too hard and not taking care of myself. It is a… it's a different kind of fatigue. It's a different kind of illness. When I go to the doctor, I'm perfectly healthy, you know, blood pressure is perfect. All the tests are perfect, but for some reason I'm 90% bedridden.
Jeff — I've known Hal Walker for around 30 years. And until late last year, I didn't really know what he was going through - that he was dealing with a debilitating and poorly understood chronic illness.
Hal — It's kind of like a flu-like weakness. You know, my ears are ringing. My brain is very sensitive. My eyes are very sensitive looking at screens. But mainly I just feel like I gotta go lie down
Jeff — Hal plays guitar and piano. He's a singer and songwriter, but his specialty is playing instruments that fit in your pocket. Like the jaw harp. Before the pandemic, he made a living performing in schools.
Hal — I'm a teaching artist and I worked with several different organizations like the Center for Arts Inspired Learning - they put Artists in Schools - and then I also worked with the Ohio Arts Council as an Artist in Residence. For 20 years now, I've been doing residencies in schools.
Jeff — Hal says "Right before the pandemic, a new door opened up."
Hal — I was giving an assembly for some fifth graders at Sacred Heart Elementary School in Akron. And during the question and answer time, a little fifth grader raised her hand and she stood up and she said "Are you on TikTok?" And I said "No," and she said "You should be." I went home that night and I downloaded TikTok. And then on January 1 of 2020, I posted my first video, and I basically have posted at least one video every day since then. Before TikTok blew up and became such a big thing, I got in right under the radar and made a name for myself before the pandemic started and now I have 1.6 million followers.
Jeff — Hal Walker's breakout hit feature an obscure instrument from Southeast Asia, a sort of bamboo harmonica called the Khaen. It's called Low Key Gliding. This groove caught fire with young TikTok artists and producers whose remixes attracted millions of views. One of the fans of Low Key Gliding is the band Coldplay's frontman Chris Martin. Hal recently met with Martin. This is a video of that lesson posted, of course, on TikTok. (Hal: Keep your thumb down. Chris: So fun! Oh, my god!) But this is not the story I'm here to tell. That story starts in a different time and place. Last September, Hal reached out to friends to help him survive his debilitating episode of ME/CFS. I was worried about Hal. He was in a bad way. And so I did what any radio producer friend would do. I gave Hal a microphone and a recorder and asked him to record what he was going through. And here is his story of living in a body in rebellion.
Hal — Hey Jeff... It was a very rough day today. My symptoms keep getting worse by these things called crashes.
My sister encourages me to call them temporary shift in symptoms but they feel like crashes. And I keep having them like every five or seven days. And I don't know why I'm having them. And none of the doctors know why I'm having them. None of the doctors have anything to offer to stop them from happening. So anyway, I had about four or five days of kind of getting adjusted to the new normal, and I was feeling a little bit better about that, like, okay, I can handle this. And all of a sudden, my whole body just filled up with adrenaline. And my heart rate went up to about 92... 95. Here I am in the middle of a crash. No particular reason. They say crashes can happen two days after whatever triggered it. So it's very hard to know what is triggering it. This afternoon, it's been a very difficult afternoon I've been very sad, very, kind of hopeless, very despondent. But I just wanted to tell you about this rough day I had.
Check one, two, check one, two… I spend most of my day in fear. Like I think of this illness as a monster. And I'm very afraid of it. I'm especially afraid of it getting worse. But my daughter was suggesting that this is an exciting time for me. Like if you didn't know that there was something on the other side of a birth, if you didn't know there was a baby, you would go through all this pain and it would be so much pain, but then you would find out on the other side that there was something very beautiful that came out of it. So I guess I much prefer looking at my situation like that. But the truth is, I More often have a more tragic view of it like I'm dying and, you know, with all my all that potential I had was lost, but I I'd like to shift my thinking to this is an amazing opportunity to birth and along with birthing comes a lot of pain.
Okay, and I'm out of breath now.
So I was just thinking I have spent the whole day in bed. I was just crying a little bit and thinking how long can my body handle this? How long can a body stay in bed without totally falling apart? I mean, I'm already falling apart. And I'm this amazing inspiration on Instagram and Tiktok all these kids are inspired by me. I don't want to be an inspiration. I don't care about being inspiration. I just want to have my body back. I just want to have my body back.
Hey, it's been a very challenging day today. I had the social day yesterday I had a friend over for several hours, engaged in some whispering conversation. I don't know if that's the cause of today but I'm very, very weak today and very little breath for speaking. I guess I just want to say one thing. Who I was has died. And now I'm not who I thought I was. And my job now is just to survive. I'm not feeling very inspired right now. I'll tell you more later.
So I've been questioning whether my role in social media has had any role in the worsening of my illness. You know, I don't know why I keep having these crashes. Why I keep having these sudden downturns of symptoms, you know, and they talk about stimulus, the stimulus of the brain and how our brains are just so sensitive. I'm extremely sensitive, even just the slightest thought gets my nerves on edge. I have a highly sensitive nervous system with this illness. I always did, but now it's just insane. The smallest amount of activity or the smallest anxious thought can just set off a whole body reaction. This morning was one of the hardest mornings of my life, I was very ill... some very dark thinking. I guess the point of my post was, you know, I get excited about something. I write about it, or I talk about it. But then I have to face the hours in the day... of being by myself in a dark room. Feeling like a time bomb is about to go off in my body.
Everyone thinks their illness is the most difficult but they actually say that ME/CFS has the lowest quality of life. And the number one cause of death is suicide. But I'm surviving one day at a time. All right, bye.
Jeff — It was around this time that house friends and family started planning a fundraiser to help him cover his living costs and raise money for ME/CFS research. 25 musicians from all over the country, including Coldplay's Chris Martin signed on for "a Love Song for Hal."
Hal — Well it's been several days since I've recorded anything. I've been in this wild kind of social media frenzy. In the last three days, I've received 25 million views on Tik Tok... all old material and stuff from the files. And it's sort of kept me occupied. About five days ago, I had a weird adrenaline surge at night. I woke up in the middle of the night and had this experience of my body dumping adrenaline. My whole body just filled up with this crazy energy -- really uncomfortable. But then ever since then I've been feeling a little better. It's a very tenuous, you know, I don't really believe this energy. Because it's weird energy. It's weird adrenaline energy.
I'm sure a part of it is fueled by this social media craze that's happening. Where I'm just achieving some sort of legend status on Tik Tok and Instagram. All the while I'm bedridden. And I'm telling my story on social media. I'm being very honest, I have this opportunity. I have this amazing platform -- 1.3 million followers on Tiktok. And they're all, many of them are learning about ME/CFS for the first time. All right, I'm glad I picked up the mic again. I'll try and keep it Going more regularly?
Jeff — So, how did you feel right after the benefit concert earlier this year?
Hal — I don't know if that's the right question.
Jeff — Well, I kind of want to catch up because it seemed that you had gotten better. You were able to travel.
Hal — Yeah, I saw some improvement after the benefit concert. And that improvement came crashing down within the last month. I'm pretty much completely bedridden.
I want to call attention to all the people who are suffering in silence, and who probably don't have the right care, who have lost their jobs, have lost their income. But I just want to call attention to all the millions that are missing. And I'm grateful for this opportunity to have a little platform to spread the word.
Rick Jackson — You're back with the Sound of Ideas on WKSU Ideastream public media. I'm Rick Jackson. Thank you for being here. Today we're talking about a disease Myalgic Encephalomyelitis, which is also known as Chronic Fatigue Syndrome. We heard from local musician Hal Walker in the first segment of the show. Our Jeff StClair shared that story. Good morning, Jeff. Thanks for doing that.
Jeff StClair — Hey, Rick, good to be with you. I just want to mention that all the music that we heard in that piece was written and performed by Hal.
Rick — That was wonderful. Good job. Thank you. Also, here is Hal Walker. Hal, good morning. Thank you for the time today.
Hal — Good morning. Thanks for having me.
Rick — How you feelin' today?
Hal — Well, I'm not feeling so well.
Rick — Okay. Well, thank you again for taking the time to go through this next few minutes with us. Also joining us Linda Tannenbaum. She's CEO, and founder of the Open Medicine Foundation. That's a Research Consortium looking into Chronic Fatigue Syndrome. Linda, welcome to the Sound of Ideas.
Linda Tannenbaum — Thank you so much. Thank you for so much for including me
Rick — To join this conversation, to add your thoughts, 866-578-0903. You can also email us soi@ideastream.org. You may Tweet us at Sound of Ideas. Now, we just did hear more of Jeff's profile. We'll talk with Hal more in just a moment. But first, I want to talk to Linda for a brief explanation of the name, Myalgic Encephalomyelitis. It's a mouthful. What exactly do all those terms mean?
Linda — Oh, well, thank you for asking. Just before I begin, I just want to thank you Hal for, for sharing, really, what you're going through, it really described the disease from a personal nature and really kind of helps everybody understand what this is, because it's a mouthful, Myalgic Encephalomyelitis. And it used to be called Chronic Fatigue Syndrome, mainly here in the United States and Myalgic Encephalomyelitis in Europe and other places. And basically, it has to do with the inflammation of the brain and the muscles. And so those words together - Myalgic Encephalomyelitis - is how that came to be. And here it was called Chronic Fatigue Syndrome by the CDC, which gave it that name in the mid 80s. Because one of the main symptoms was really profound fatigue, and there's so many other symptoms, but that's what they ended up calling it, which ended up being a very bad name, actually, because Chronic Fatigue Syndrome kind of minimizes what this horrible disease is.
Rick — You mentioned the main symptoms there, what we see, but do we know what the cause is? You mentioned brain?
Linda — It's a good question. And the million dollar question. We don't know what the cause is, which is what all this research is all about. Because they're trying to find the cause. So they can find basically biomarkers to set up treatments. And they haven't found the cause yet. So basically, between genetic and environmental factors, where is the cause? Most of the people who get this disease - about 80% or so, if they want to give some statistics to it - it's caused by a post-viral or post-infection, illness, and which is why we're so concerned about this with with COVID and long COVID. Because most people have initiated this by a viral illness or some type of illness.
Rick — Hal Walker, wanted to ask you about your experience with MECFS. I know that as we discussed diagnosis, that's not the right word. But what were you told? How did you find out that this is what you were suffering?
Hal — Well, the original onset for me was in 1992. And I had a sudden onset of weird symptoms in my body. I had been a long distance runner. And suddenly overnight, I couldn't run across the street without needing to lie down. And on my own, I learned about Chronic Fatigue Syndrome. Years later, I learned about the name Myalgic Encephalomyelitis. And in northeastern Ohio, it's almost impossible to get a diagnosis of ME/CFS. But, you know, most doctors have never heard of it or don't, don't have any ... it's kind of a non diagnosis. And then once you have the diagnosis, doctors wouldn't know what to do with it. But I have recently gotten a diagnosis of ME/CFS. And I'm not sure what good that does. But I've known I've had it. You know, there's a whole community of people that I relate to and I've known I had it for years, but no one was willing to tell me that's what I had
Rick — Linda, he brings up some interesting points and he specified that he couldn't get a research person to talk about it or give him a diagnosis here in Northeast Ohio. Is that common around the country? The idea that doctors don't know? The idea that there are regions where it's just not studied?
Linda — Yes. In fact, even the CDC says that up to about 90% of people aren't even diagnosed because doctors just have no idea what this is and as Hal talked about earlier, all of the tests that a particular clinician might do on a patient, they're all normal. And so they can't figure out what is wrong with people. And sadly, most doctors just dismiss it and tell people to go home and rest. And there's nothing that can be done about it, because they don't know what this is. So, in fact, we are setting up an entire medical education project this year, because we have to start training doctors on, at least, how to diagnosis this, and how to treat some of the symptoms, because most doctors do not know what this is, how to diagnosis this, and what even to do for the patients.
Rick — That's got to be tremendously frustrating, I would think, for those of you professionals in the field who want this out there.
Linda — Yes, it really is. It's just horrible. I live in Los Angeles, and they don't even diagnose it here. I mean, it's just horrible.
Rick — You mentioned that you live in LA. Is that where the center is based?
Linda — Yes, that's where our nonprofit is based. But basically, we're virtual. So we have people that are all over the world working with us. Yeah.
Rick — When you talk to doctors, what do they tell you? I mean, surely, you know, they look at you as somebody with some authority, because you do run the nonprofit, but do they just kind of deny you as they would deny a person who's suffering?
Linda — Well, we deal with doctors that really know about this disease, helping us kind of create information and resources to train other doctors that, basically, that we don't know, all the primary physicians that are out there that are local to people. Because really, there's only literally a handful, not even a dozen doctors that really work on this disease with any type of specialty whatsoever. So our job and our responsibility right now is to find those doctors to let them know and to figure out how they learn. So we can get in that space, and let them know about this disease that they don't know about and COVID and long COVID have opened those doors widely for us. So we are taking advantage and leveraging that, that people who come in and say they're sick even after they've had and they're over this disease, what is wrong with them, and so many of them are transitioning to ME/CFS, we are able to open that conversation, because most doctors aren't haven't been open to that conversation.
Rick — You talked about the very few doctors who are working on this. I was kind of wondering how did you get into this? Was there a family member? Or what led you into something that's very specialized?
Linda — Yeah, thank you for asking. Our 16 year old daughter came down with this. Actually, for her, it was sudden onset. We don't even know why - she didn't have an infection. And she just suddenly -- She was 16. And I dropped her off at school. And at eight o'clock in the morning - at 8:20 - they called me from the nursing office and said that she was sick. And we ended up in the emergency room. And, and again, they didn't know what was wrong with her whatsoever. So it took us 20 different doctors to find out and actually get a diagnosis of ME/CFS. At the time, it was called Chronic Fatigue Syndrome. And we said well, there's so much more than fatigue of what's going on with her. And they said, Well, that's -- out of the exclusion of everything else, this is what she has. And the only thing you can do at all is pain management, because there is no treatment. So our daughter was bedridden, totally bedridden. And she was one of these top A students, an athlete, and volleyball player, and then suddenly she was in bed and she was bedridden. So I said, Look, we've got to do something about this. And so that's how I got involved. Because when I started researching it, I found out that there were no other people that were researching this for any type of treatment or help or diagnosis. And I didn't want people to have to go through 20 different doctors to get a diagnosis and, and so I figured we needed to do something. And I was in the laboratory diagnostic business. So I was able to test every test I could possibly test in the clinical lab and saw that everything was normal. So something else needed to be found out about this. So I got involved with this, because I had to. I was a desperate parent. And that's usually how nonprofits in the medical space happen - from desperate parents; they're trying to cure their kids. And that's really where I was at. And I told her as soon as she gets out of bed, I'm going to set up a foundation to try to fundraise for this and try to get some researchers together to do this.
Rick — You said she was 16? How long ago was this?
Linda — 2006. So she's 32 now.
Rick — Okay, thank you. 866-578-0903, if you want to weigh in. Linda, Rosemary writes in to say "Is there an intersection, a common denominator between Lyme and people who are suffering chronic disease?"
Linda — That's a very good question, because there definitely is. People who have post treatment Lyme or chronic Lyme, what they're calling it, have very, very similar if not the same symptoms as ME/CFS. And so what we're hoping in the research world is that whatever we find, as far as treatments, that it will cross over and help people who have these these chronic conditions, because - we now call them multi system, chronic complex diseases, and Lyme, chronic Lyme, post-treatment Lyme, is definitely one of them. Yes.
Rick — It's kind of interesting, as people are becoming more aware of this, I got a tweet that came in, Hal, someone who wanted to thank you for sharing your story, and just talking about this in a public sense. She writes that it's kind of amazing to hear a story from someone with ME/CFS. Rarely does anybody know what she's dealing with on a daily basis. And Shelby just wanted to thank you for sharing and bringing awareness. Do you have other people who reach out to you and say, "Gee, thanks for putting a name to what I didn't know."
Hal — I have a few people. You know, I have a social media presence. And every once in a while, I'll get a direct message of someone that says, "Thank you for speaking out about this illness I've been in. I'm living in silence. So many people are living in silence, suffering." And, you know, most people don't have the kind of platform that I have. So I'm grateful to be able to call attention to the millions missing. And every once in a while, I hear from one of them.
Rick — Jeff StClair, as you were starting to put this together, were you finding that there's a lot of people out there who really responded?
Jeff — Well, I didn't know really much about it. And I think most people didn't. And it wasn't till Hal told me about this documentary called "Unrest," that is a filmmaker who had ME/CFS put together, and it's amazing. And then I began to understand what he was going through. But, you know, it's been an education for everyone, including his family and friends, trying to understand this. It's such a mysterious condition, that someone looks fine, and then you've soon realized that they just can't function and they're in intense discomfort. And it's heartbreaking. It's really, you know, just one of those, I don't know, profound mystery filled with profound frustration, too, because there's no, there's no treatment. And everyone, you know, you just hope that there's some cure, that we all have such faith in the medical industry that, you know, we're gonna come through, but this is a case where that's not happening.
Rick — He mentioned the documentary "Unrest," that's a six year old documentary currently showing on Netflix. It's a 28 year old PhD student who turns the camera on herself to talk about her struggles with Chronic Fatigue Syndrome at that time. Linda, your organization, you mentioned research teams all across America are involved in trying to better understand. Wanting to make sure that we mentioned that nearly 2 million Americans have this - more than twice the number of people with multiple sclerosis - yet last year, MS got about $125 million in research. What did you get?
Linda — Last year, last year, we raised $7 million. And we've raised about $36 million over the last 10 years. It's very hard, because we're raising it in the private space, you know, and people who give us money are really just the people who have this or have somebody or a loved one who has this. It's very difficult to raise money in this space.
Rick — Not that there's much good that came from COVID. But the idea of bringing attention, do you think that's going to help us to find not just the dollars, but the research, and maybe eventually a cause?
Linda — Yeah, we're all hoping. You know, we have hope on this, that there's a lot more researchers that are involved with this. And as they research long COVID more, that they'll be able to find some treatments for some of the symptoms that show up in the long COVID world. So we are hoping and we're all talking to people who have long COVID and researchers and clinicians who are seeing patients with COVID. So it might be the only silver lining of COVID at all, but it has certainly opened the conversation about this disease, because this disease has been so stigmatized, and not validated for so many years. And it's really brought it to the forefront even in a lot of media, luckily.
Rick — Is there a fear that, as it becomes known, we're going to see an overflow of people to the few centers that do work on it?
Linda — Well, they're already overflowed tremendously. So the ME/CFS researchers, you really literally have six months to a year wait to even see one of those the clinicians who see patients that have MECFS, but there's some long COVID clinics that are being set up all over the United States. And we are hoping to educate them to let them know what already is known about this particular disease, and what how they can help some of the symptoms here. So yes, they will be overflowed. I mean, as far as long COVID, they think it'll really double or triple the number of people with ME/CFS and it's just horrid to think about how many people are going to be suffering with this chronic disease.
Rick — For those who just joined us. We're talking with Linda Tenenbaum, for a few minutes more here, founder and CEO of the Open Medicine Foundation specializing in research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. We also have on the show today musician Hal Walker, who's struggling with the disease and Ideastream public media reporter and host Jeff St. Clair, who produced the profile were heard earlier. I wanted to get to the phone. Dee is calling from Northeast Ohio. Dee, Linda is on the line with you as are Hal and Jeff. Go ahead. Welcome. What's your question?
Caller Dee — Oh, hi, it's mostly a comment. I'm quite familiar with much of his description. And for years, this has been going on and a lot of doctors either didn't believe me or told me it was something else. And especially women, and now that there's some more male voices and more people getting this because of COVID, I'm hoping there'll be some work towards a solution. But I've been told it's everything from emotional, psychological, CFS, Fibro, MCS (Multiple Chemical Sensitivity), Lyme, and really, it just means -- it's just another name for "we don't know," they just don't know. And, you know, there's been nobody, really, no fundraisers or community support. I did come up with something, my own little thought, my thought go-to - call it self help - and this is what it is. When you're talking about an "it," whatever "it" may be - a fear, anxiety, depression, whatever, whatever that you say scares you about this - I say, "It could happen. It probably won't. But if it does, I'll deal with it." And I repeat that a lot. And it seems to help. Another thing is to take it a day or an hour at a time. Take what you can while you can, and be grateful. And one of one of my mottos is, I'm so glad it's not worse and you know, do what you can while you can. I really appreciate, finally some information publicly being shed on this issue, because it is kind of tough, in this day and age. So I love y'all,
Rick — Thank you for the call, Dee. Appreciate it. Hal, do you agree with that, take what you can while you can deal with it - hour, day, week at a time, whatever it takes?
Hal — I agree with everything she just said. Yes. I'm so grateful it's not worse. I'm afraid that it might get worse. But if it does, I suppose I'll keep surviving. And also take it - I'm more like, take it 15 minutes at a time. I have a timer that I set for 15 minutes and you know, I can survive the next 15 minutes.
Rick — Is that something, Linda, you hear from your daughter - 15 minutes, a day, a little bit of time, whatever it takes.
Linda — Well, thankfully, our daughter was severe for a few years, but she's much better now. So she's one of the lucky ones, probably about 5% of people who really are able to get better. And mostly they attributed that to her getting it so young. So she is living her life now in a much better way. So she's not at that point. But she was at that point. So I understand it fully. I saw it and lived with her, while this was happening.
Rick — Five Percent. That's amazing that many people do recover -- that that few people do recover. Hal, I know you have to have hope that as we close here, you have hope that one day you can get to that point where Linda's daughter is where you can live a more normal life.
Hal — I'm not sure how much hope I have. But I'm trying to practice that kind of thinking. Yes.
Rick — Well, Hal, thank you so much for again --
Linda — I'd like to leave with some hope, if I may. You know, we are researching this in a very big way. And the researchers really do feel that at some point, this could be reversible, meaning if we find the cause and find a way to treat this, that it's not a deterioration of the body. It's something that could be reversed and there's a lot of hope there on the research side. There's a lot of research happening. There's a lot of hope. And I have hope that we will be able to find something and get people like yourself, Hal, back to health with this.
Rick — Linda Tenenbaum, with the Open Medicine Foundation. Thank you and Hal Walker. Thank you for sharing your story. We wish you both the best. Thank you very much.
Linda — Thank you so much for doing this.
Rick — Yeah. Jeff Sinclair, I'll see you upstairs. Good talking to you. Thanks for the report today.
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