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myalgic encephalomyelitis chroni
General Education, Podcast

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome 101, with Emily Taylor from Solve M.E.

6 months ago
53 min read
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Video of conversation

Summary:

Did you know that not all fatigue is created equal? In this episode, Emily Taylor provides a detailed overview of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Cheryl and Emily also discuss the overlaps and differences between inflammatory arthritis, fatigue and ME / CFS.

Emily also highlights the work of Solve M.E., a nonprofit organization focused on advancing research and awareness for the condition. They discuss the importance of understanding post-exertional malaise and the challenges associated with diagnosing and managing ME/CFS. Emily emphasizes the need for personalized care and the critical role of patients in advocating for their own health. This conversation underscores the significance of creating strong support networks for people living with ME/CFS, as well as the broader chronic illness community. They also highlight the value of sharing personal stories to raise awareness and bring about policy changes.  

Episode at a glance:

  • Advocacy and awareness: Cheryl and Emily discuss the power of patient stories in driving advocacy efforts, and the importance of raising awareness of the complexities of living with chronic illness. 
  • Symptom management: Post-exertional malaise, fatigue, pain, and cognitive issues often require a dynamic approach to management. This conversation delves into the importance of tailoring treatment to the specific condition/individual needs, and strategies such as pacing activity.
  • Coping strategies and mental health: Having self-compassion is a key part of coping with chronic illness. Additionally, emotional support aids well-being and therapy can be a useful resource. 
  • Importance of having a support network: Cheryl and Emily emphasize the value of connecting with others who have similar conditions to create a sense of community, as well as accepting support from friends, family, and healthcare professionals.
  • Patient/healthcare provider relationship: Emily shares the challenges of obtaining accurate diagnoses and appropriate medical care for chronic illnesses, especially for lesser-known conditions like ME/CFS. Building collaborative, patient-centered relationships with healthcare providers who are willing to listen, learn, and explore treatment options can make a big difference in managing complex chronic illnesses.

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Emily Taylor 

Vice President of Advocacy and Engagement at Solve ME, Emily brings to the organization over fifteen years of policy, organization, and advocacy experience in both the non-profit and government sectors. With five years’ experience on Capitol Hill, Emily contributes a keen understanding of both state and federal policy processes while cultivating strong grassroots organization and patient representation. Prior to joining the Solve M.E., Emily served as the director of policy and advocacy for an award-winning autism organization. There she spearheaded major overhauls in disability, early intervention, and education policies. 

She is also a veteran of several successful electoral campaigns, where she trained others in effective social media and online organization. She received a B.A. with honors in politics and international relations from Scripps College in Claremont and earned her M.A. in American politics from Claremont Graduate University. Emily draws inspiration from her mother who has battled ME/CFS as well as chronic autoimmune and thyroid conditions since 1999.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

Full Episode Transcript:

Interview between Speaker 1 (Cheryl Crow) and Speaker 2 (Emily Taylor)

Cheryl:  00:00

All right. I am so excited today to have Emily Taylor to help learn about or teach us about myalgic encephalomyelitis/chronic fatigue syndrome, also known as ME/CFS. So, welcome, Emily. I’m so happy to have you today.

Emily:  00:16

Thank you, Cheryl. It’s a pleasure to be here.

Cheryl:  00:18

Yeah. And so, just to get us started, can you let us know where you live? And like, what is your relationship to ME/CFS? 

Emily:  00:27

Absolutely. So, hi, everyone. My name is Emily Taylor. I’m the Vice President of Advocacy and Engagement for Solve M.E. or the Solve ME/CFS Initiative. We are a nonprofit organization, a national nonprofit — international, now — dedicated to exclusively post-infection diseases, specifically ME/CFS and long COVID, which, unfortunately, are very related. So, I’m calling in from Los Angeles, California, where I live. And I am intimately familiar with this disease, both in my professional life as the VP of Advocacy and Engagement; also, in my personal life, where I’m a caregiver for my mother, who’s had ME/CFS since 2008.

Cheryl:  01:13

Yeah, and I think, you know, the fact that you’ve taken the experience with your mother and helped turn it into so much incredible advocacy and patient education work is really wonderful. And so, can you tell us a little bit more about your mother’s experience, you know, with ME/CFS, and how that led to your current work? 

Emily:  01:38

Absolutely. It really is one of those moments where I think the universe put me right where I was supposed to be. Back in 2008, I was working in Washington, DC. I was on The Hill, I really enjoyed my job and my mom went to, on a plane to visit her father. And on that flight, she presented with 104-degree fever. By the time she got home, it just got worse and worse. And she immediately went to bed, and that moment of going to bed ended up lasting about four years. For the next four years, my mother was pretty much bed bound due to the extended symptoms following what we believe to be a virus that prompted the initial fever. She was, at her worst, unable to eat solid food. She was unable to move more than a few steps a day, really, to the bathroom and back was as far as she was able to go. She had such sensitivity to light and sound that we ended up covering her eyes and ears and restricting anyone from going into the bedroom or even watching TV in the room adjacent because it was that sensitive with the sensory sensitivities. And just, it was a constellation of symptoms that we didn’t half understand. And at the time, there were very few medical doctors that were willing or able to help us. Her blood panel tests came back normal. And eventually, we drove several hours to an endocrinologist that was recommended to us who sat down after four years of searching from doctors to doctors — this is in 2012 — who said, and I won’t tell you her name, because she said that, what she said is, “I think you have this illness that we call chronic fatigue syndrome. The good news is it probably won’t kill you. And the bad news is it probably won’t kill you. And there’s no FDA approved treatments, there’s no path that I can put you on. But what I want to do is,” she said, “I’m not going to put this on your chart. On your chart, I’m going to put that you have lupus, severe arthritis, and Hashimoto’s, Sjögren’s, and like a handful of other autoimmune diseases,” she said because then we can try the treatments from those off label. And that’s what we’ve done. 


And, you know, fast forward many years later, my mother is not healthy. She’s not at her pre-illness levels. But she is about 60% of where she was. So, she has for about every day, she gets out of bed now and can go work at her business and can do things. She’s mostly limited to the house but can go out probably once or twice a week. And for everyday she goes out, she has a day back in bed to rest and recover from that. So we’ve really expanded what we kind of refer to as her energy envelope, the ability to expend energy, we’ve managed to work through medication, and a lot of trial and tribulation, and a lot of other non-medical treatments as well to get her at this point where she is now. And I’m super grateful because that’s 60% of my mom I didn’t have before. So, it’s definitely been a journey. And in that time when my mom was particularly disabled by this illness, it was a really hard time for our family. But that’s how I became aware of this illness. And then, flash forward another few years, I, through my network, became aware of the organization Solve M.E. was interested in starting a federal affairs program. And I said, Oh, I did that for autism, and I used to work on The Hill, and this is something that I would love to take my skills. And so, that’s what brought me to Solve M.E. and I’ve been here ever since. And I’ve managed to, as you say, take my mother’s experience, tell it to members of Congress and their staff, and shift the needle on this illness in a major way. And now, I think we’re shifting again, because of the comorbidity with long COVID and the data that shows many people with long COVID or being diagnosed with ME/CFS really indicates that we have a lot more work to do.

Cheryl:  06:03

Yeah. Well, first of all, I’m applauding you for being able to tell such what I know is a long, convoluted story in such a clear way, because I something I personally struggle with as listeners can attest. But, you know, and your mother’s story just really, it illustrates the importance of, or the amount of tenacity it takes on the part of loved ones to not stop looking for somebody who will give you answers and take you seriously, you know.

Emily:  06:35

I wish I could say that her experience was unique, but statistically, it’s about four to six years is the average delay for an ME/CFS patient to get diagnosed. That’s kind of the average experience. So, she was actually on the short end of average with only four years before she got her diagnosis.

Cheryl:  06:52

Well, and as I understand it, and correct me if I’m wrong, but back, especially back then — I mean, a lot has changed even in the last 10, 15 years — it was thought, I mean, I remember hearing stories from people on social media, that their doctor said that, oh, CFS has chronic fatigue syndrome, that’s not real. That’s just something that they’re getting, a label they’re slapping on people that they don’t really, it’s just women that are just not trying hard enough, like, all this horrible stuff, like a stigma against it, right. And you’re nodding, for those listening. 

Emily:  07:22

Yeah, we definitely had that experience. There was one doctor in particular early in our journey that was looking over my mother’s blood test results and said, “I can find no reason why you should be the sick.” And my mother, you know, being the firebrand that she is said, “Don’t you tell me how sick I am,” like, this is my body. And I can tell you something’s not right. And so, it really was, we had a lot of pushback from various medical providers. We had a lot of folks steer us towards mental health, and in various respectful and disrespectful ways. And you know that, and I have to say like, even though, at that point, my mother had been essentially bed bound for four years. So, mental health was absolutely part of the concern. There’s no way you can go through that kind of a complete transformation of your day-to-day experience and not have mental health ramifications. But it was so belittling to have them tell us, and tell my mother in particular, that her physical symptoms and her clearly dysregulated immune system were results of essentially bad mental health. And that’s absolutely not the case. 

And so, we had to really, and it took — and actually, it took a really great mental health professional to step in, to be a point of contact on the care team to say, yes, I have, like, we had a really great mental health professional who actually was part of the care team and went to these doctors and said, “I am you know, a certified, you know, PhD, MD and I have evaluated this woman. And yes, that is not the problem,” and that was powerful. So, folks, I guess one takeaway I would share with your audience is, don’t be afraid to have the right mental health partner as part of your team. And I emphasize the right mental health partner, not a one way dynamic, a two-way dynamic, that they truly listen and understand the physical aspects of this illness. And that is a very important piece of the medical puzzle.

Cheryl:  09:37

Oh, my gosh. I am just, I really relate. I mean, I, fortunately for me, only had about a year and a half period where I didn’t know what was wrong with my body. But I had a — it was similar in the sense that I started becoming highly anxious objectively about my health, but I had no prior history of health-related anxiety. I mean, you have a 20-year-old athlete, captain of the college soccer team as a junior, like, all-conference selection, like I was not anxious about my health. If anything, I probably took my body for granted like most young kids, you know, you know, teenagers and stuff. And so, to be told — the people who are listening have heard the story a million times — but yeah, to be told that the chicken or the egg, you know, they’re saying, “Well, you must be anxious. And that’s why your body feels like this.” I was like, No, I’m anxious because my body feels like this, like my body feels it’s breaking down. Y’all are telling me I’m not sick. I know I’m sick. I just don’t know what I have. And yes, of course, my blood work was also normal until they decided to run additional bloodwork. The phrase ‘Your blood work is normal’ means nothing unless they’ve run all potential blood work. And this still kind of means nothing in terms of ruling out all potential, organic causes to this, because there’s lots of things that are not measurable whatsoever by blood work. I mean, pain being one of them. So, anyway, this is what — we could go on that for a super long time. So, I’m sorry your mom went through that.

Emily:  11:07

I’m so glad you mentioned that. That’s actually part of the work I do in my professional capacity is what you’re talking about is very important. It’s a really, really critical aspect of where research and patient’s experiences sort of meet in a very real way. And this is called patient reported outcomes. So, what you’re describing is a data classification of when a patient says they feel a certain way, or the patient says they have a certain experience, and we actually, in the scientific realm, categorize those data points separately, as what you would say, you know, a blood metric or an exercise trial or some kind of physical, tangible way to measure performance of your body. And so, for a long time, and this is actually a very real hard experience in the ME/CFS community, patient reported outcomes were not considered viable data. So, if you had, then — this is a real, real story about the story of the drug Ampligen — you had a drug that a big chunk of people who were tested with it responded to. And in those response rates, about 40% of people said, “This drug makes me feel better, miraculously better, really much better.” And the FDA said, okay, well show us in other in what they, you know, other data, ‘real data’, and I use the buddy quotes for people who are not able to see us, that I put finger quotes around ‘real data’, that they said, this is not, you know, show us in the numbers on a blood test or on some kind of performance metric how these patients got better. And they couldn’t, they couldn’t show in that kind of data how the patients got better. But the patients were reporting they felt better. And you know what happened to that drug? It was not approved. Not because of safety. But because they couldn’t demonstrate ‘efficacy’, quote unquote, they couldn’t demonstrate the drug actually having impact despite 40% of patients saying, “This drug really helps me.” And so, that is a very real way. And so, it manifests at the at the policy level, with the way we deal with patient data, it manifests at the clinical level with how a doctor responds to patient data in the form of, “I don’t feel well, and this is how I don’t feel well.” And it happens at the research level with how we collect data, and how we determine whether or not treatments are potentially working. So, what you bring up is a really important point that we work on every day here at Solve M.E..

Cheryl:  13:36

This is incredible. And it it completely relates to rheumatoid arthritis. You know, there is some overlap, which we’re going to discuss a little bit later. Both conditions, ME/CFS and rheumatoid arthritis, involve fatigue. There’s a little bit of an uncertainty about the cause of the fatigue in both conditions but the fatigue what you’re saying about PRO’s, patient reported outcomes, is so critical in the fatigue element of rheumatoid arthritis because until patients started becoming partners in research, guess what? The FDA-approved medicines for rheumatoid arthritis did not even have fatigue as an outcome measure. 

They were only looking at — they were looking at patient reported pain and the blood work. They were not looking at patient reported fatigue. And the entire theory in the field was that both pain and fatigue were, the root cause of them was that inflammation. But it turns out that the kind of inflammation we have those markers for rheumatoid arthritis tracks partly with pain and fatigue but doesn’t track perfectly. There’s people whose blood work looks perfect on their medica — when they’re on their medication, and they still have persistent pain and/or fatigue. So, it’s so important, again, I mean, it’s a blessing and a curse that patients, you know, need to be involved in advocacy and involved in research in order to get this, to get the kind of care that’s going to be most helpful for us, you know, long-term. But just to backtrack one second before we move on to the more of the details about, like, we’re going to talk about post-exertional malaise and the kind of fatigue that people might have who have ME/CFS. Can we, can you take — let me know, like, the CliffNotes version of what is the definition of ME/CFS, and who treats it? 

Emily:  15:26

Oh, good question. So, ME/CFS or myalgic encephalomyelitis/chronic fatigue syndrome is a hybridized term. You can hear, it has the slash in it. And it’s sort of, and it’s, depending on which definition you use, it can have a couple different meanings. Our organization believes that any definition of ME/CFS that’s used must include the presence of post-exertional malaise or PEM as a symptom, and we’ll talk about that later. But that is a critical hallmark characteristic that must be present in order for a diagnosis of ME/CFS to occur. So, under the Institute of Medicine 2015 curriculum, or decision — or sorry, the 2015 Institute of Medicine criteria for ME/CFS, there are a list of symptoms which include neurological symptoms and includes musculoskeletal symptoms, it includes various other symptom trees, including neurological symptoms as well. 

And so, it’s kind of a selection list that one of these other symptoms should be present, and post-exertional malaise. And I think the key definition criteria is that the symptoms persist, cause a significant reduction in quality of life, and persist for six months or longer, and are most often preceded by an infection or systemic trauma. This can be surgery, this can be blood transfusions, this can be a viral or infection pathogen, a chemical exposure, mold exposure. One of these things usually precipitates, but not always. 

And that’s actually one of the really interesting things that we learned as, again, thanks to long COVID and the viral pandemic, is that there are asymptomatic viruses, something that we didn’t fully, I think, integrate and appreciate prior to that. So, it’s interesting that the ratio of folks who have no obvious sign of a trigger before their ME/CFS comes on is similar to the rate of people who have asymptomatic virus presentations. So, we don’t know for sure, but correlation does not equal causation. So, I want to be very clear about this data. But it potentially could lend evidence to the fact that this is a disease that’s triggered by a systemic, viral, or infection, that then causes something to go out of whack. And there’s a lot of evidence and a lot of strong hypotheses that very much confirm that data and that kind of thinking,

Cheryl:  18:12

Yeah, and I’m gonna put in the detailed show notes on the website, there’s a great fact sheet that’s a from the World M.E. Alliance from Solve M.E. and, you know, that is really helpful for understanding ME/CFS. 

And it is an interesting similarity to rheumatoid arthritis. Rheumatoid arthritis, the cause is, there are multiple causes that are potentially genetic, inherited predisposition, right, no environmental triggers, or there’s the genetic predisposition plus an environmental trigger like a virus or a, quote unquote, ‘lifestyle choice’ like smoking can be there. So, there’s kind of these different data points, but one of them that can be similar with ME/CFS and RA is that having a virus. And interestingly, I always forget to tell people this that I had this virus called the Coxsackie virus in high school and I didn’t develop RA till four years later, but who knows? Maybe that was laying dormant and somehow my immune system suddenly was like, we’re going to go on attack mode throughout your whole body. But okay, so yeah, it’s the the hallmark symptom is that PM, post-exertional malaise. Let’s figure out what is that.

Emily:  19:33

It is a gnarly symptom. My mom refers to it as your own personal help, because what post-exertional malaise does is if you exert yourself past the point of your body’s kind of threshold, it triggers a complete relapse and shut down. So, all of your symptoms flare up. Your body kind of goes into that crash that I think is a very common term that RA patients experience also, that the physical fatigue, the musculoskeletal fatigue, the brain fog, all the symptoms get worse and exacerbated. And it’s all built into this kind of time period of between 24 and 48 hours after some kind of exertion. So, when folks describe that post-crash experience, that is often what we would call post-exertional malaise. And the word ‘malaise’ is really unfortunate. There’s another way to describe that, post-exertional neurological exacerbation, PENE. So, there’s a couple of ways to describe this symptom. But really, it’s it’s that experience of, of having a good day, going out and enjoying that good day, doing whatever it is that you’re passionate about doing. And as my mom would say, and then you’re punished for it.

Cheryl:  21:03

Yeah. From like a behavioral perspective, it’s so tragic. It reminds me of I have a cousin who has narcolepsy and one of his triggers is laughter. So, when he laughs, he suddenly has narcolepsy where you suddenly fall asleep. And so, he has this negative reinforcement where with joy, then this terrible thing happens, where if he’s in the middle of this, you know, oh, it’s a concert or something, and he laughs, he could fall asleep. Same way with you, you’re like, wow, I’m feeling great, I’m at my friend’s wedding, you know. And then, 24 to 48 hours, within 24 to 48 hours, you suddenly feel so much worse. Your brain is at some point going to associate exertion with feeling bad, and it’s, yeah, and it’s not — this is where it can get a little tricky. And I know the primary audience of people listening to this have some sort of inflammatory or autoimmune kind of arthritis like rheumatoid, psoriatic, ankylosing spondylitis or lupus, some of you will also have a separate diagnosis of ME/CFS and that, just like Emily said, the hallmark symptom of that is that post-exertional malaise. 

The average patient from the research I have been able to look at, you know, from the occupational therapist lens and also from my own patient lens and experience, is that the typical patient with RA feels better when they exercise. Fatigue wise, sleep wise, mood wise. However, I would say — this is where the devil is always in the details — that there is, you do have to exercise — so, exercise isn’t the same as exertion, but it involves exertion. But you can exert yourself in many ways that you wouldn’t necessarily think of as exercise, right, like just going places, doing stuff, going to the grocery store. But the average person with RA is going to have a threshold after which they will feel — like, honestly, myself — I will feel worse when I push myself far outside of my normal ‘Just Right Challenge’. In OT, we call it the ‘Just Right Challenge’. So, if I usually, I ride an exercise bike 20 to 30 minutes and then I’ve done weightlifting anywhere between 20 minutes to an hour with little rest in between, if I suddenly tried to ride my bike for three hours, four hours, I’m gonna feel really bad, you know, but I’m not feeling that if I, on a daily basis when I exert myself a little bit beyond my normal threshold, that sounds like. With ME/CFS you’re really feeling that consistently worse after.

Emily:  23:43

Yes, yeah. Yeah. And what you’re describing is actually what we call pacing. And pacing is a critical health care and lifestyle salvation of so many people with ME/CFS. Pacing is essentially exactly as you described, learning where your boundaries are. And they are highly individual, highly specific for each person. So, your 20 minutes of exercise bike might be somebody else’s getting up and go to the bathroom, might be somebody else’s three hours of exercise bike, right. So, it’s so specific for what you and yourself are experiencing. For my mother, when we were very first beginning to, kind of on her medical journey, that pacing involved a walk to the kitchen and back. And that was kind of as far as you started. And then it was like maybe to the living room and back, and then maybe, okay, we can get to the car and back just to like practice maybe a potential drive. And then, you know, the energy that a drive takes and just even sitting upright and how difficult that is. So, it all plays together. So, pacing, and there’s some really great — I’ll add them into the chat — some really great pacing guides from our friends at MEAction who have an excellent one pager that describes what and how to pace. But it’s about, the ultimate goal of pacing and the ultimate end result that you’re looking for when you pace is avoiding post-exertional malaise, so preventing the crash cycle, while gradually elongating that energy envelope, and gradually increasing the amount that you can be okay for. But again, without triggering post-exertional malaise. Because if you trigger that crash episode, that post-exertional malaise, you potentially set yourself back all the way to the beginning, and you can actually make yourself worse long-term if you trigger PM too frequently and too often. So, sometimes, and I think this is the difficult reality of living with these illnesses, you have to trigger post-exertional malaise. Like, for example, you mentioned like a friend’s wedding. That was actually one of the most challenging points was when my brother got married. And we were trying to get my mother to the ceremony. And it was incredibly difficult because she was having a bad day that day. And, you know, we had travelled, we actually specifically travelled the day before to give her extra time to rest so that we would be potentially ready for the wedding. But we did not plan it out well enough, and we did not have enough rest time. And so, we were a bit late to the ceremony. And, you know, that made some people angry and hurt some feelings. And, you know, but that was the reality is that, you know, without the you plan, you build into your planning triggering post-exertional malaise, because you want to be present in an event like that. So, that’s one part of pacing is, you know, is managing if you’re going to try and go beyond your limits. You know you’re going to do something like for a wedding or from something special that you want to be present for, you know, giving a week afterwards to recover, making sure you travel ahead of time to recover from the travel, all of that is sort of built into that lifestyle management of acknowledging the physical limitations of someone, of your own body. And in this case, it was my mother’s body that was really struggling to keep up. The good news is, and the beautiful part of that story is we did get there in time for pictures. And there were, and we did have some beautiful moments. And yeah, we made it work by good communication. 

And, you know, folks having enough compassion to understand that my mom was managing her chronic illness, but not everybody gets that. And we still, to this day, have some little touch points where it’s like, well, at least you’re not late. And it’s like, okay, that was really not necessary. But that’s, but that’s sort of the reality that folks deal with. And that’s just one example of a wedding. And then, multiply that times everything you do. Taking a shower, making yourself a meal, you know, spending time with your loved ones. It’s a constant negotiation, and it is emotionally exhausting for the people who have to constantly make that decision. And it’s emotionally exhausting for the people who are trying to assist with making those decisions and trying to be supportive, is that you never know where you’re going to be because these illnesses are so transient. And it just, I’d say, a take home for your readers, or your listeners, you never know anybody else’s journey, right? You never know where someone else is at, and if they’re having a good day or a bad day. And I think we, in the chronic illness community, have collectively learned to give ourselves that grace. And then, by extension, give others that grace. But there are many, many folks in the rest of the community that are a bit ableist and don’t see those invisible disabilities. And so, I think we can all be better about communicating and even when you tell your story about an RA, you’re helping somebody with ME/CFS because you’re making that impact of are we all giving each other grace for those who have invisible illnesses or invisible disabilities.

Cheryl:  28:45

A hundred percent. And I think, you know, the phrase came up to him to mind as you’re talking, like, ‘Listen to your body’ is such a, it’s such an incomplete thing. Like, we’re told so often, “Listen to your body,” right? But with things like post-exertional malaise, where your body in the moment is — or even, let’s say dietary triggers for some people would also be, dietary triggers are often delayed. For me, being in the sun or being hot are huge fatigue triggers. And I follow them pretty quickly. But it’s, you know, it’s way worse, like, five to eight hours afterwards. So, if you’re just listening to your body in the moment, your body, if you might have endorphins, you might just not be physiologically experiencing the repercussions of your actions yet, we can’t, we don’t really even have the luxury to just listen to our body. We have to always account for what is my body feeling right now, but what do I also know from my past patterns, you know? It’s so complex.

Emily:  29:47

Absolutely. It’s why I’m a huge proponent of medical journaling. That was the single thing that helped our family so much was, especially when it came to food sensitivity, because as you say, it’s a few hours later or even a day later. And so, we would write down everything that mom ate, everything that she took, all of her medications, and then we’d start finding those patterns. And so, medical journaling, even if you don’t share it with your doctor, but I highly encourage folks to medical journal with the intention of sharing it with your doctor, because it really is one of the most helpful tools that my family found for identifying those patterns and trends. And that was critical in our world of pacing for my mother’s illness.

Cheryl:  30:30

And I think something I learned about myself is that I am, I tend to be a problem solver. And so, I’m seeking, like, what is the ultimate plan? What is my ultimate RA plan? And I think when I first got diagnosed, and this might, this would relate to ME/CFS, too. It’s like, with any chronic illness, you’re thinking, okay, well just tell me what the plan is, or I’ll figure it out, I’ll do my tracking. And I think at some point, for me, it was so helpful to say on the one hand, I’m going to put a lot of time and energy into discovering my body’s patterns and learning about this condition, connecting to others figuring, quote unquote, ‘figuring it out’. And I’m also going to, thankfully for therapy that I finally — for a long time, I didn’t go to therapy because of that experience of being told I was not sick, just anxious. And I was like, I’m not gonna go to therapy, because that means you guys were right, that it was, you know, that my anxiety was causing all this. But anyway, so I finally went to therapy, and realize that it’s so beneficial to also build up coping skills for when you’re like, you know what? I track this and 99 times out of 100, I did (A) and it resulted in (B), but today I did (A) and it resulted in (X) and like, I feel worse now. And I did the thing that five days in a row, I did my 20-minute exercise bike. Five days in a row. Felt great, felt great, felt great, same human. Apparently, I’m still me. And I had some days, I’ll do that 20-minutes. And mysteriously, I will not feel good anymore. And for a long time, I kept trying to, quote unquote, ‘figure it out’. And finally, I was like, okay, it’s helpful to do that. But it’s also helpful to say, sometimes it’s just random, or sometimes I won’t know. And that’s — and being, like you mentioned, that grace and compassion for yourself, too, can be so, so helpful. And grace and compassion from the people around you. 

And that’s, we kind of have to educate them, you know, and say, look, a lot of people tell me, “Well, how do I get them to understand, like, how do I get the people in my life to understand when I’m going through,” and, you know, on the one hand, you can’t make someone understand something that they’re determined not to understand. Any of us who’ve had children know that. No, I’m just kidding. But like, trying to tell a toddler, you know, why not go to the toy store with a toddler, and like, they don’t want to understand that. No, but also, you know, it’s okay to say that some people won’t, well, they don’t get it till they get it. Like, some people will come back into your life later after they’ve experienced something like long COVID or like a friend or a loved one or themselves having ME/CFS. And then, they’ll be like, okay, I get it now, you know. So, but yeah, thank you, you’ve put in here, the Pacing and Management Guide, which I a hundred percent, like, in my occupational therapy program, not surprisingly, we didn’t learn anything that I remember about ME/CFS. We did learn about conditions that cause fatigue, that are more well known, like multiple sclerosis. And they did, I was taught in my Masters of OT program about, you know, activity pacing and energy conservation. And so, these are very well-known techniques in terms of the research, but not all patients are taught them, you know. You’re not all given help from a physical therapist or occupational therapist, and, you know, similarly not, unfortunately, I know, with ME/CFS, there’s a little bit of a history of the well intentioned, you know, physical therapist and OT’s not knowing about post-exertional malaise and then being like, we just need to just keep pushing yourself and keep exercising. And you’re like, I’m feeling worse, like, you know.

Emily:  34:12

And a lot of that is driven by our payment structure. So, this is another moment where, you know, policy and clinical care kind of crash into each other is that our insurance payers and our policies are designed like you’re supposed to always see improvement, right? So, if you’re not showing improvement, we’re not going to pay you even though in many cases and any physical therapist will tell you sometimes maintenance is the goal. Sometimes prevention is the goal. So, you know, that endless push to like, okay, we want to see your outcomes recover. Sometimes, you know, that not seeing change, the balance maintaining an even keel is the is a positive result of pacing. And if you’re not triggering post-exertional malaise and things are evening out and you’re not having crashes, that’s good. You may not be exerting yourself more, but you’re managing. And so, I think that’s something to keep in mind is that a lot of these systems are sort of driving towards predetermined outcomes that are not necessarily reflective of the reality of these less understood illnesses. RA, for example, ME/CFS is another big example, long COVID, which we’re still learning about another big example, kind of a constellation of other illnesses. So, all of these things are just kind of critical in saying, again, listen to your body. And sometimes, you have to be your own advocate to know and your body’s advocate to know when you’ve hit your limits. And you got to listen to that. And especially, you kind of mentioned exercise earlier, I just wanted to just kind of circle back to that point. I’m so glad you mentioned that, because exercise, for many illnesses, for POTS as well, is something that can improve long term outcomes. But for ME/CFS, and especially for people with post-exertional malaise, the opposite is true. So, it is, it does create this sort of cognitive dissonance where it’s like, okay, you have POTS, you should exercise. Okay, you have RA, you should exercise. Oh, but you also have ME/CFS, maybe that’s going to be harmful. So, I would advise everyone who’s listening, if you think that ME/CFS might be you, if you think you’re having that push/crash cycle, and that post-exertional malaise symptom, talk to your doctor and be very cautious about pursuing exercise as a potential treatment, because it can, for people with ME/CFS, cause long-term harm and actually set you back and you’ll lose functionality over the long-term.

Cheryl:  36:33

Yes, and I think if you have rheumatoid arthritis, you’re going to be seen by a rheumatologist. Just out of curiosity for someone listening who maybe is undiagnosed or only has a primary care, is there — I honestly don’t know this so I’m asking you — is there a medical professional that’s like the bread and butter one that would like diagnose ME/CFS? Or is it very — what’s the word — you know, is it dependent on the professional’s own expertise and experience?

Emily:  37:04

It is very dependent on the professional’s expertise. There’s no specific specialty that owns ME/CFS per se. So, and it’s also very multisystemic. So, it falls on a lot of areas. We know the immune systems involved. So, your endocrinologist and your immunologists, that’s where we found help with particular doctor. Definitely, neurologists, there’s neurological symptoms, and neurologists often get involved. And infectious disease specialists, because there’s an infectious disease component. All sorts of different doctors can be specialists in this area. And it sort of, I emphasize this a lot with the folks that I talk to and work with, that it’s about the partnership you create with that doctor. And so, I think any doctor can be the right fit and there’s no particular specialty that I would say go to this one. I would say it’s a) about the specialists you find there and about their willingness and ability to listen to their patients to take those patient reported outcomes, and take them into meaningful into a meaningful discourse; partner with their patients, it’s a collaborative two-way relationship. It’s not one way and I think that power structure needs to be balanced. And that’s a critical part. And three, someone who might be willing to learn, someone who’s got an open mind. 

I think one of the statistics is — this may be outdated now — but back in 2015, only 30% of medical textbooks even mentioned ME/CFS. So, that means the rest of the doctors who were not getting those textbooks had no idea what they were dealing with. So, it might be truly an information gap. And if they’re willing to admit they don’t know what’s going on and learn something, that’s a critical characteristics of a good doctor in this space, and a good partner in this space. Someone who may admit I don’t have all the answers, and I’m willing to learn from someone who might have them. And I’ll also say that there’s a couple of ME/CFS specialists who are willing to do teleconsults with other doctors. And so, there’s a list on the Solve M.E. website. So, that’s, again, not every doctor offers that, not every specialist offer that, but some of them do. And that can be a really good method to getting the information to your doctor. There’s also, as you mentioned, the World M.E. Guide, the World M.E. Alliance guide. There’s a lot of great medical publications but I’ll just do a shameless plug for our friends at the Bateman Horne Center who have some of the best medical education in this area. They have continuing medical education programs including some ECHO style programs that are just absolutely amazing. So, if you are looking for resources for your doctor specifically and your doctor is willing to learn, the Bateman Horne Centre is a great resource there for medical information about this illness.

Cheryl:  39:55

Wonderful. Thank you so much. And that part about partnering with your provider is a hundred percent identical in rheumatology as well. If you have rheumatoid arthritis or psoriatic, it really — and this is best practices recommended by every professional association, European League against Rheumatism, American College of Rheumatology, it’s a partnership between the patient and provider but a lot of providers with doctors are in kind of an old — some of them are just an outdated, that’s not how they were trained. So, you know, unfortunately, there is also a rheumatologist shortage. So, sometimes you don’t have a huge amount of choice. But within the choices you have, you know, finding somebody who will partner with you, take the time to explain things to you, and look at your unique patterns, whether or not they’re typical or not, you know. And I was gonna say that just so I’m really clear to people listening, if you only have rheumatoid arthritis, exercise is actually the most recommended integrative health treatment according to these. There’s 2022 guidelines from the American College of Rheumatology, guidelines for exercise, rehabilitation, diet, and additional integrative interventions. Exercise, consistent exercise is the only one that was highly recommended, recommended above any specific diet, above any specific alternative, complementary thing like, you know, acupuncture, massage, even thermal modalities, which, you know, people put like heat pads, warming pads, so, even more than comprehensive occupational therapy. So, I’m trying to be objective here, even more than my own profession.

So, if that is your only diagnosis, exercise, even if it’s high intensity, is not likely to cause the kinds of post-exertional malaise that you’re seeing with ME/CFS. But if you’re starting an exercise plan, and you’re starting really, really — and you start, and you’re feeling fatigued, something that I would do is scale it back first. Maybe you jumped in too fast, you know, maybe you just, like I said, like myself, if I push it way beyond my boundary, I will get really fatigued. And so, you know, start really slow. And if you don’t experience that stair step improvement pretty rapidly with increasing your activity levels of say, 15 minutes, 20, 25, really consistently feeling fatigued, then that would might be a sign that you could go, you know, ask — I would almost wonder if you could ask your own rheumatologist, “Do you have experienced diagnosing ME/CFS or evaluating for it? And if not, who do you recommend?” Because it is kind of a small world in some ways. And rheumatologists are think are known a little bit of as being pretty cerebral and pretty much, you know, used to grey areas or not as much, like, I don’t know, I don’t want to make like too many, you know, there’s definitely stereotypes of different doctors that are, you know, based on some realities. They’re like, if I cannot see it in my scope, putting a scope in your esophagus, it is not real. So, rheumatologists are pretty good at these grey areas, but they may not have a lot of experience in ME/CFS. So, I know this is going to be something that people listening, some of them are going to want to pursue. Because yeah, to a hammer, everything is a nail, you know. If you’re having fatigue, and you have rheumatoid arthritis, it’s easy for providers to just say, “Oh, well, it’s just from your arthritis.” But just the rheumatoid arthritis wouldn’t cause this really consistent post-exertional malaise, the severe fatigue, typically, that you would see in ME/CFS. So, that’s we’re trying to kind of disentangle a little bit today. 

Emily:  43:40

Absolutely. And I think that’s important to note, we talked about during our presentation at the autoimmune conference, the types of fatigue. And there are definitely, fatigue is an umbrella term. There’s a lot of different flavors. I think anybody who’s experienced a chronic illness, especially a complex chronic illness like rheumatoid arthritis or ME/CFS, you know those flavors of fatigue intimately well. But for those who may not be familiar, post-exertional malaise is one type of fatigue. You may also get musculoskeletal fatigue where your physical limbs feel heavy or leaden, and you can’t move them. You may get cognitive fatigue with brain fog, or fibro fog, as some folks call it, where you just kind of feel like your brain is literally floating in a cloud outside your head, and you can’t get it to like work with you today. We’ve had those experiences. And then, there’s also, you know, the pervasive fatigue of like, I feel like I ran a marathon and my body is like, can’t keep up. So, it really helps. And this is something I’ll add, this is another kind of tips and tricks for the medical field, when you’re describing your fatigue, be very specific about what you’re experiencing and try to use a tangible example. And let me be specific on what I mean by that. 

So, instead of saying, “I feel tired all the time,” right, that’s, oh, wow. Well, okay, what type of fatigue, how often, and how severe? Those are the three categories I want you to think about when you think about your symptoms. So, if you’re experiencing, oh, I’m tired all the time — oh, actually, now that I think about it, it’s my body is tired. it’s my limbs. Like, I feel like my I’m having that muscular skeletal fatigue, I can’t move my arm very well. That, oh, and how often does it happen? Oh, that happens three to five times a week, I’m experiencing fatigue. Or every day, three to five times a day, or three to five times an hour. Be specific about how frequently it’s happening and how severe it is. Give an example. So, my arm fatigue is so bad, I can’t lift a cup of water. Or it’s so bad, I can’t lift a load of laundry. Or it’s so bad that I can’t lift it off the bed. Those are three very different symptoms, and the doctor needs to hear exactly where you’re coming from about your specific symptoms. So, especially when it comes to fatigue because fatigue is such a nuanced symptom, help your doctor out by giving them how frequently it happens, how severe it is, with an actual example of like, this is what I’m experiencing, and what kind of fatigue it is, or what kind of pain it is, or, you know, the give them the flavor of that particular symptom. And that will go a long way to helping your doctor understand what your day-to-day experience is.

Cheryl:  46:21

That is a hundred percent. Because yeah, that is so true. Actually, I give people — or I recommend doing that for pain as well. Because pain for rheumatoid arthritis is not just one thing, right? I might be on the scale of, you know, stiffness, I might be at a four for stiffness, a zero for sharp stabbing pain, you know, a maybe two for a hot pain, like, I might have my joints are tender, swollen, hot, but not stabbing. And they’re similar. They’re also stiff. But having just one number that doesn’t have any context to it is not helpful. And yeah, it’s just like music to my ears as an occupational therapist is linking it to your functional activity. And that not only — it paints a picture to your doctor, and then it also is something they can document because they’re saying is, are they having a functional limitation? Like, the whole point of occupational therapy is helping people with an illness, injury, or disability be able to function in their daily activities. If the person can’t function, we should be able to see them under our scope of practice, whether or not insurance decides to reimburse for that is their own drama around them trying to make money and not wanting to pay for anything. So, anyway, sorry, if you’re an insurance company, but tell me if I’m wrong.

Emily:  47:40

In my experience, you are not wrong. 

Cheryl:  47:42

So, you know, it’s like, they — I have seen a lot, just in the three years of running this Rheum to thrive support group that I’m doing for people with rheumatic disease; ‘Rheum’ short for rheumatic, like rheumatoid arthritis or psoriatic arthritis. So, many people, they’ve said, “I’ve told my doctor,” I said, that’s not — tell them what, or consider — I’m not giving medical advice — but consider telling them what can you not do, specifically. My hands are so stiff, I can’t turn the pages in my child’s book or my grandchild’s book to read them a board book, not even like a difficult to turn page, right. Or it’s so stiff, I can’t hold the pot, too. Or I have so much fatigue, like you mentioned, really, I can’t get from the bed to the bathroom. I have to put a bedside commode next to my bed because I take can’t take those 15 steps, you know. And again, tragically, if you are bed bound, you will typically qualify for home health occupational therapy for at least a short while. But we would literally come to people’s houses. And I just saw this happen actually with my mom. This is more of an acute rehabilitation. She had her hip replaced, but it was they met — they’re talking literal number of steps, how many steps or to, from the upstairs to downstairs? How many steps it took to walk to the bathroom? Is there a turn here or there? Does she turn left or right? These are those tedious things that we actually measure as a health profession. So, you don’t have to go through all of it on your own, although you typically will end up having to go through some of it on your own, sadly.

Emily:  49:12

That’s the part where I think advocacy comes in, is is to ensure that those experienced people who do have to go through it on their own have the support and safety net that they need and deserve to be able to survive and be part of our society. I think that’s, again, one of those examples of where the reality of your patient experience hits sort of the meta policy world. Because those are the decisions that we collectively make as a society. Where do we put our resources? Who are we helping? And, you know, if you’re not telling your story, if we’re not seeing that experience, then no one’s going to help because it’s not in the public discourse. So, I think again, just advocacy, public awareness, sharing your truth is so critical in changing the overall way that we collectively handle these illnesses. And those are at the big level with policy, at the little level with doctors, and at the individual level with your day-to-day. 

Cheryl:  50:13

Oh, my gosh. So, so beautifully said. And I’ll put some links for people who have arthritis specifically to some organizations that provide kind of annual or frequently throughout the year advocacy opportunities. And just in case you’re like me, at first, I was kind of, unlike you, I was not comfortable with federal legislative policy at first or state level policy. I was scared because I was like, I don’t understand how the government really works. I don’t know, like, what’s legislative versus judicial, like I remember learning this in high school, but am I going to look stupid if I go up there? And I’m usually not shy. I usually am not shy to tell my story anywhere. But the first time I did share with a legislative representative or, you know, a state senator, or state representative to the federal government, I was kinda like, I was nervous. But what I didn’t know before doing it is that these organizations, whether it’s Solve M.E., Autoimmune Association, Arthritis Foundation, like, I’ve gone to Washington, DC with the American College of Rheumatology, my state Capitol with Arthritis Foundation, they prep you. They give you the bullet points, and they do the heavy work for you of understanding, like, this senator is related to arthritis in this way. You know, like, turns out my representative to — my state representative is a, her mom has rheumatoid arthritis. So, it’s like immediately I know that I’m talking to somebody who understands a little bit more than the average person, right. And then, they give you your talking points. And like you said, what you need to provide is your own story to humanize these issues, because these legislators are, you know, advocacy people. They get the lobbyists, everyone’s just talking to them these statistics all day. And what you, all you need to do is come in and be like, this happened to me, it hurt me because of this, or it helped me because of this. And it’s really gratifying. Because when you’ve been so beat down, you know, year after year, by feeling like, wow, I’m at the mercy of — my healthcare decisions being made by people, the insurance company, employees who don’t even have any health care training, like, it’s a really demoralizing experience, then you can feel at least I’m doing something to help, you know. Sorry, preaching to the choir. 

Emily:  52:22

Yeah, it helps so much. I cannot tell you how much it is. It is the — I often use this analogy of a car, when we’re talking about advocacy. And you have the person who’s driving the car, you have the navigator, you’ve got everyone in the car, who’s kind of collectively travelling on this journey of progress or systems change together. But what your stories are, what your advocacy is, what your volunteer hours are, is the gasoline that makes that car go. Without any of that the car is not going anywhere. And truly, so it is your experiences, your lived experience, you are an expert in your own experience, that makes the advocacy possible. Because without your storytelling, without that awareness generating, the car is not — the car of advocacy does not drive. So, you are the gas that powers this important car and don’t be afraid to share your stories. Please get involved. I’ll definitely share some links as well. But couldn’t agree more. You said it so well, Cheryl, that that is the one of the most powerful things that you as a patient can do. 

Cheryl:  53:23

Well, I mean, thank you so much. It’s been really wonderful talking to you. It went by really, really fast. If you have an extra minute, I always like to ask what advice would you have for somebody newly diagnosed? I mean, listen to this whole thing, because it’s chock full of helpful information. But is there anything that you’d like to tell newly diagnosed people?

Emily:  53:45

Oh, wow. There’s a lot of things I would tell. But I’d say if I had to distil it into just one: Identify, find, and use your support networks. And you have more than you realize. Think about everyone in the community that has your illness, peer to peer networks, folks like Cheryl, folks like me. I mean, we are part of your support network at a big level and at a small level. So, I’d say find, utilize your support networks. And they can be as big as an entire organization. They can be as small as your sister, brother, mother, friend, partner. But don’t be afraid to use them. Because I think the folks that I see overall who manage these illnesses and are happy and successful in life despite this chronic illness are the ones that are willing and able to ask for help. And I think there’s a lot of support out there, even if you’re feeling isolated alone. And there’s a lot of people who care about you and are there with you and have done this journey, and they are gold mines of information. So, I’d say I could say a hundred other things too, but I think all roads lead to finding that support network and engaging in that support network. And remembering and utilizing it whenever you are down, because there’s a lot of folks out there like me who are fighting for these illnesses every day and have really great resources to share. 

Cheryl:  55:10

I love it. That applies, really, to so many conditions. I think it’s beautifully said. Where can people find you or your organization online?

Emily:  55:21

Oh, well, we are Solve M.E. so you can find us at solveme.org, dot O-R-G. We’re @PlzSolveCFS on X, or Twitter. We are @PlzSolveCFS on Twitter. We’re also on Instagram, we’re on LinkedIn, we’re on Facebook, that’s all of those communities are available and open. So, there’s lots of different ways to find us and we’re happy to share all that information. That’s our organization. I’ve also mentioned, I mentioned MEAction, another great organization with pacing and management guides. I mentioned Bateman Horne Center, another great organization. For those of you with long COVID, the COVID-19 Longhauler Advocacy Project is stellar. Even if you have RA and then got COVID and got new symptoms, that still — or even exacerbated your old symptoms, that qualifies as long COVID. So, if you’re one of those folks, the COVID-19 Long Hauler Advocacy Project is doing stellar work. And I could go on and on. But those are the kinds of — I’ll stop there because I know we’re out of time.

Cheryl:  56:22

No, it’s great. And it is part of, you mentioned, the support network. I’m always, you know, I’m older, I was diagnosed in 2003. And I’m always, you know, it just blows my mind when someone will send me a DM or private message on Instagram being like, “I just got diagnosed like an hour ago. Like, and I found you.” And I’m like, whoa, like, this is, and it’s amazing that you can find — I mean, it’s a blessing and a curse, social media. But we all know this. But the fact that you can immediately reach out and you can start building that network the day you get diagnosed is just really exciting to me. So, yeah.

Emily:  56:57

The internet is a powerful tool and has brought so many people together and things like this that we can, you know, get good information out there.

Cheryl:  57:05

Yeah, yeah. Well, thank you. Thank you so much on. Everyone, check out definitely the show notes to be sure to get — there’s going to be tons of links in the show notes today. And just, Emily, thank you again for your time and your advocacy. I just can’t wait to see what keeps coming out of, you know, Solve M.E., you are doing amazing work. So, thank you again.

Emily:  57:25

Thank you, Cheryl. It was a pleasure working with you. And if there’s any way that we can help in your advocacy work, please, we’d love to partner. Don’t hesitate to reach out.

Cheryl:  57:34

Awesome. Thank you so much. Bye-bye for now.