Misconceptions Around ME/CFS

[WEBMD SOUND LOGO] Welcome. I'm Dr. Whyte, the chief medical officer at WebMD. Myalgic encephalomyelitis/chronic fatigue syndrome, ME/CFS, is a disabling and complex illness. People with ME/CFS are often not able to do their usual activities. At times, it may confine them to bed. They often have overwhelming fatigue that's not improved by rest.

Other symptoms can include problems with sleep, thinking and concentrating, pain, and dizziness. People may not look ill. However, people with ME/CFS are not able to function the same way they did before they became ill. It changes people's ability to do daily tasks like taking a shower or preparing a meal. It often makes it hard to keep a job, go to school, and take part in family and social life.

The illness can last for years, and sometimes leads to serious disability. Although we know a fair amount about the knowledge, attitudes, and beliefs about myalgic encephalomyelitis/chronic fatigue syndrome among healthcare providers and patients, little is known of the general public's view. That's why WebMD partnered with the CDC to assess knowledge, attitudes, and beliefs in the general public.

Between January and June 2021, we randomly invited visitors onto WebMD's website to take an online survey. Inclusion criteria were ages 18 years of age or older, currently living in the United States, and having heard of ME/CFS. Here are some of the key findings I want to make you aware of.

Most, around 69% of survey respondents said they felt slightly or not at all knowledgeable about ME/CFS. About 1/2 of respondents with ME or CFS symptoms said their symptoms have a significant impact on their quality of life. Nine out of 10 said their symptoms caused them to give up social, recreational, or work activities. Yet only about 1/3 have spoken to a healthcare professional about it. They don't think their health care professional will take them seriously. It's a common reason for not seeking medical care.

About 6 in 10 respondents who did talk to healthcare professional about their symptoms felt their healthcare provider didn't take them seriously. 64% said they were told to get some rest. 62% said the doctor told them their symptoms were due to a mental issue. 30% said they prefer to manage their symptoms on their own before seeing a health care professional.

These findings give you a sense of what patients with ME/CFS are experiencing. I had the opportunity to talk to Ashanti Daniel about her journey. Let's listen to what she experienced physically and mentally as a result of the disease, and how the healthcare system treated her.

[WEBMD SOUND LOGO] Hi, Ashanti. Thanks for taking time today.

Thank you for having me.

Let's start off because we want to hear your journey. We talked about how patients typically present the misdiagnosis, the challenges in being heard. Tell us your story. When did your symptoms first begin?

So for me, I had a very sudden onset. It was not gradual in any way, shape, or form. I literally went to work my last night shift as a registered nurse on August 10, 2016, having no idea that when I got off work the next morning that I would never be returning to my career. I got sick with the virus and never recovered.

And what were the symptoms that you were experiencing?

So for me, the virus initially attacked my lungs. And because I do have a history of asthma, the assumption was that I was having a severe asthma exacerbation. However, the other symptoms that I had were not consistent with any asthma exacerbation or asthma attack-- because I know sometimes there won't be healthcare professionals watching this, but anyway-- than I've ever had in my life. So it didn't make sense.

I had profound fatigue, which didn't come with an asthma attack ever in my life. I had voice hoarseness and weakness. And none of those things were consistent. I actually can't remember every single symptom I had, but just to know that there were many that did not fit the asthma attack [LAUGHS] criteria for me personally, as someone who had been an asthmatic since I was a child.

The other piece that I think is important to mention is at the time that I became sick, I was literally working out five, sometimes six days a week, doing high-intensity interval training. So my asthma was well-controlled. This just didn't make sense that I would be so sick from an "asthma attack," quote, unquote.

But because I presented with respiratory symptoms, lung symptoms, I was treated like it was an asthma attack. And of course, I did not recover.

Well, what's going through your head? What are you thinking? You're probably not thinking CFS, ME, are you? [LAUGHS]

Actually, even though I am a nurse, I had never heard of it. I think I maybe had heard of it referred to as CFS but not the ME piece at all. And that wasn't even on my radar.

Like, I usually was thinking--

But what are you thinking? What are you saying to yourself? Maybe you're working out?

I was thinking it was something sinister, or something else sinister. I really had no idea. I was grasping for straws and just trying to understand, like, what's happening to my body? Like, this is not the-- [LAUGHS] I'm not sure what's going on.

So they're treating asthma. It's not getting better.

Right, correct.

What are your doctors doing at that point? And what are you thinking?

So I actually ended up in and out of the hospital. And so again, that's another thing. At that point, I had not been hospitalized for my asthma in 20 years. So like, hmm, this doesn't quite make sense. I was in my 30s, like, hmm, that picture of health. I'm in my 40s now, and I've never been drunk in my life. So I have always been a really healthy person. I ate healthy, all of that. So it just did not make any sense.

And so my doctor, my pulmonologist actually was insistent that this was just a severe asthma exacerbation, asthma attack. And that it just knocked me down. And that I just needed time to recover. And I'm like, well, that would make sense if I was like 80, if I had high blood pressure, if I had diabetes or some other comorbidities that would make it harder for my body to recover from an asthma attack, like, a simple asthma attack. And so it took me a while, actually. Even though I'm a nurse, it took me a while to convince him to refer me to another specialist.

What specialist did you then see?

I actually asked to see an allergist. That was the first place that I went. So I'm like, OK, I do have a history of asthma. And I do have a history of allergies. Maybe I'm suddenly allergic to some of other food or something that I'm not aware of. And I keep exposing my body to it. So there's some inflammatory process happening that I'm not able to get control over.

So I'm like, let me start with the allergist. Let's see if he has any answers. So that was about three months into my illness. So it took me three months to convince my pulmonologist, no, this is not my asthma. This is something more. And so then I went down the whole of seeing multiple specialists and trying to get answers to what was happening to my body.

And then when did finally the diagnosis of chronic fatigue syndrome ME come up?

I was diagnosed nine months into my illness, which is actually considered really quick. Most people take years and years and multiple innumerable specialists to finally get an answer.

For me, I think a lot of it had to do with being a nurse as my background. That helped me advocate for myself. Although, I did encounter barriers as a Black woman navigating the health care system on the other side, I also had help from my sisters. They were researching like every-- we were trying to find out, what could this be?

And when I spoke-- actually, both of my sisters sent me a link about myalgic encephalomyelitis or ME separately. They didn't even know that they did. And I looked at the different links. And I'm like, OK, it sounds like me. I found out that there was an ME specialist local to where I live in Southern California. And so I made an appointment to see him. And ironically, or maybe not so much, I received my official diagnosis on International ME Awareness Day in 2017. Yeah.

How does your journey differ because you're a woman of color? Does it matter? You referenced that a little earlier, being a Black woman. How does that play in terms of your diagnostic journey?

It definitely matters and makes a huge difference, unfortunately. However, me being a nurse has helped. And so what I have found is that I have to lead with that. And I don't lead with it in hopes of getting some kind of preferential treatment. I literally lead with the fact that I'm a nurse to save my life.

Because I know that as a Black woman, I'm less likely to be believed. I'm less likely to be taken serious. So at least if I say, hey, I'm a nurse, then hopefully, and oftentimes it has helped me get just basic care, nothing special. But I have encountered situations where I wasn't believed.

So you've been educating doctors. You've been advocating for yourself. How do patients or caregivers become advocates? Because we know we need more advocacy in this space. What's your advice to them?

It's a hard one because this illness takes so much from you. There was a period of time during this illness where I was literally bedridden 90% to 95% of the time. There were months that I did not see this beautiful living room. There were months that I didn't even see my kitchen.

So it's hard to give advice to people who are so ill. Because you literally basically only have energy to-- at that time, I only had an energy to make it to the bathroom, and even that was a struggle. And my bathroom is connected to my bedroom. All three of my meals had to be prepared by someone else. They were brought to me. And I actually had to eat my meals laying down.

So when you're in that kind of dire situation, you can't even think about advocacy. At that point, you're only thinking about survival. So what is really important with this disease is that we have able-bodied advocates to help.

Ashanti, what's your message to viewers? You leave them with one final thought, what is it?

I would say my message to viewers is if you are sick following a virus, even if no one believes you, believe yourself. Do not allow healthcare professionals, your loved ones or anyone to tell you that your experience is not what you're experiencing.

And also for loved ones of people who are dealing with any post-viral syndrome, because other viruses can trigger this, believe your loved ones. No one wants to be sick. [LAUGHS] I mean, maybe there are a small population. But that's not the greater majority. The majority of us do not want to be sick.

We want to be well. We need support. We need help with advocacy. And most importantly, we need to be believed. I did not have the experience of my loved ones not believing me, at least not to my face. But there are a lot of others in our community that are not believed that have really been abandoned by their loved ones.

And just even though we often can't make events, weddings, baby showers, bridal showers, still continue to invite us. Still continue to reach out to us. It's really important.

I want to thank you for sharing your story, sharing your insights, and helping educate folks, how do you advocate, and of course, listen to your body.

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Ashanti mentioned a few times how being a woman and a person of color impacted how she was believed and treated. Indeed the survey revealed people of color and women have different perceptions about ME/CFS than white people and men. 85% of white respondents agreed that ME/CFS is a real illness compared to 77% of non-Hispanic Black people.

More women than men consider ME/CFS to be a real illness. While 78% of Hispanic people said ME/CFS should be taken as seriously as diseases like heart failure or multiple sclerosis, only 67% of Black respondents agreed. White people with ME/CFS were more likely to recognize its impact on their lives than the Hispanic or Black counterparts.

I had the opportunity to talk a little earlier with Dr. Valerie Montgomery Rice, the CEO and president of Morehouse School of Medicine. We talk about the impact of these findings, and how they're promoting disparity in ME/CFS care, and what we need to do to get better care for everyone.

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Dr. Rice, let's start off with, is this just one more example of women and people of color being treated differently when they go to the doctor?

John, unfortunately, this is another example. And you and I have talked about countless other ones, women doing their antenatal, pregnancy time, women who are experiencing more pain, who have sickle cell disease, or women who have lupus who are slow to be diagnosed.

Yes, those symptoms sometimes are vague, particularly when we're dealing with autoimmune disorders. But they are not to be dismissed just because they are vague. So unfortunately, we are seeing chronic fatigue syndrome and ME being treated similar to how those diseases are seen in people of color, particularly women.

What I was surprised in the survey, and I want your input on, we saw that when people of color experienced ME and CFS that they got less support from other Hispanic and Black people compared to their white counterparts. Whites when they experience chronic fatigue syndrome in ME often have more support. Why do you think that might be the case?

Well, first of all, I think chronic fatigue syndrome in ME is not something that's commonly discussed in Black communities. So first of all, you're not going to find the family members of those impacted by the disease being aware that this is "really a real disease," right?

And so that would lead to less support. So we need to raise the educational awareness of everyone related to really that chronic fatigue syndrome is a real disease. The second thing, though, is that even in our educational experience, chronic fatigue syndrome is more of a white woman's disease compared to a Black woman's disease.

And so when I, as a Black woman, go to my doctor, or start talking to my family members, even those who may be more familiar with medical diseases are talking about vague symptoms, talking about maybe I have a lymph node that I'm feeling underneath my armpit. I'm tired. I used to be able to exercise three to four times a week. And now, I can barely get out of bed.

And remember, more Black women run their households compared to other persons. So they are highly depended on for the livelihood of the family. Then this is going to be a lot more pushback to those women because of the social issues that surround Black women, and the lack of education and awareness of this disease by Black women and by providers.

Here you are, the president and CEO of a medical school. What do we need to be doing in terms of teaching medical students, teaching residents who are beginning their profession? How do we sensitize them to the issues of chronic fatigue syndrome and myalgic encephalomyelitis?

So the first thing we need to do is acknowledge that there is a disparity in how we diagnose and recognize this disease in women of color and in people of color. And then we need to create educational opportunities that will increase our cultural competence about the disease as it relates to people of color in particular.

So in our development of curriculums-- and we do a lot of role-playing, our patient based experiences, or using simulation or standardized patients. We need to create educational modules that bring this diagnosis to life in women of color.

Is there room in the curriculum? Because you and I both know what's in the curriculum is a fierce battle--

I think there is.

--isn't it?

And it doesn't just have to be just about chronic fatigue syndrome. But the vagueness of the symptoms and the biases that exist, when we are thinking about vague symptoms like pain or joint swelling or--

Fatigue.

VALERIE MONTGOMERY RICE: --feeling more tired, et cetera, those symptoms need to be coalesced into a differential diagnosis that requires the student to look beyond the symptoms that the patient may have. And to think about all of the other factors that go into how we come up with a diagnosis for a patient.

So we are teaching culturally competence in care delivery and in the diagnostic process. So it's not just about chronic fatigue syndrome. It is how we educate our learners to be more culturally competent.

Well, Dr. Montgomery Rice, I want to thank you for taking the time helping to shed light in terms of how we address these underlying conditions, particularly as it relates to disparities. Thank you as always.

VALERIE MONTGOMERY RICE: My pleasure to join you.

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