When POC Can’t Get a Diagnosis, Go Unseen

For decades, myalgic encephalomyelitis (ME) – also commonly called chronic fatigue syndrome – was erroneously portrayed as a white woman’s disease in the media. Black people were told they can’t get this disease, and went unseen and undiagnosed. Studies finally confirmed what the ME community already knew: the disease was targeting white, black and brown people equally, as well as affecting men, children and the elderly. ME continues to remain a disease that goes largely undiagnosed, especially in minority populations. 

Today, we chat in the interview below with Dr. Lily Chu, MD, MSHS about how ME and COVID-19 are affecting communities of color in the U.S., and the health disparities that must be addressed.

Additionally, in the #MillionsMissing video below, a former nurse calls for healthcare providers to believe women of color when reporting their symptoms. Ashanti Daniel, 39, has had her life devastated by ME. The #millionsmissing are calling on governments to invest in research into ME, which is expected to surge following COVID-19 infections.   

Ashanti Daniel discusses health inequality for people of color in her #MillionsMissing speech.

Interview with Dr. Lily Chu

Dr. Lily Chu has a background in internal/ geriatric medicine and public health. She is currently Co-Vice President of the International Association for CFS/ME (IACFS/ME), and a community advisory board member for Stanford University’s ME/CFS program. Her interest in health disparities is not only professional but personal: as a child she received care at publicly-funded pediatric and dental clinics. 

#MEAction: Why do you think that communities of color are disproportionately being impacted by the Covid-19 crisis? 

Dr. Chu: Recently, many media outlets and health organizations have reported that people of color are more likely to be infected and die of COVID-19 when compared to their numbers in the population. The reason why is likely multifactorial, with some pre-existing factors magnified by and other factors specific to this pandemic. Examples of the former include higher poverty rates, lower educational levels, and financial barriers to accessing healthcare. Examples of the latter include an inability to work virtually/ remotely: a third of Caucasian workers are employed in jobs that allow these accommodations while only half that percentage of Latinx and Black workers have these options. Of course, these factors also interact with each other: people stocking grocery stores or feeding seniors are at higher risk for infection yet their employers might not offer a living wage or adequate health insurance benefits. 

One factor that has not been discussed as much are stricter immigration policies which might drive both undocumented and legal immigrants to avoid seeking care out of fears of deportation or of impact on their chances of citizenship. Another factor I wonder about is genetic differences. SARS-CoV-2 is known to infect lung, heart, blood vessel and gut cells via a receptor (i.e. gateway) called ACE2 (angiotensin converting enzyme 2). To help control high blood pressure, doctors often prescribe drugs called ACE inhibitors (ACE-Is). It’s known that ACE-Is are less effective at controlling blood pressure in Black populations and are more likely to cause persistent coughing in Asian populations. Could these variations play a role in how different groups are affected? Several research groups (e.g. the University of Hawaii) are currently exploring this question. 

#MEAction: How do you think the impact of Covid-19 on communities of color is similar to how communities of color are impacted by ME?

Dr. Chu: The pre-existing factors I cited above that led to increased infections, hospitalizations, and deaths from COVID-19 in communities of color are likely the same ones influencing underdiagnosis and increased severity from ME/CFS in people of color.  One of the local radio programs here in San Francisco mentioned that people of color were less likely to be tested for COVID-19. Lack of access to care may mean people are seeking care later – if at all – in their illness course.   I say this with reservations as we are still learning a lot about COVID-19 and there are only a few ME/CFS studies that have addressed ethnicity/ race. 

#MEAction: Studies have shown that ME is a disease that affects all genders, races and ethnicities. Why do you think that communities of color are underrepresented in the ME movement? How can we rectify this? 

Dr. Chu: Several studies have shown that 84%-95% of people with ME/CFS remain undiagnosed. This is likely the biggest obstacle to participating in advocacy. If people don’t even know they suffer from ME/CFS, they not likely to search for groups like #MEAction. An overarching reason for under-diagnosis is simply the lack of awareness and knowledge among healthcare professionals. During my decade of medical training, ME/CFS was only mentioned once, in the differential diagnosis for chronic fatigue and in name only (no details). Many healthcare professionals don’t hold any views – negative, positive, or neutral – about ME/CFS because it is not even on their radar. 

Having said that, factors leading to underdiagnosis for any pwME are likely exacerbated in communities of color. Here are 2 examples:

A. Most pwME receive an ME/CFS diagnosis only after multiple visits to many physicians. It is well known that Black and Hispanic groups have lower rates of health insurance coverage and 30%-50% lower median incomes than Caucasian groups. These groups may not possess the financial means (nor time off work or transportation options) to keep seeking care until they receive a diagnosis. 

However, financial factors are not the only barriers to diagnosis. In 2016, an Australian study (p.54-55) concluded that ME/CFS primarily affected Caucasian groups based on who they were seeing at their ME/CFS specialty clinic (based in metropolitan Melbourne). I respect this group’s work so I was surprised to hear their conclusions. Since Australia has a national healthcare system, people of color were assumed to face little obstacles in obtaining care. In fact, public health research has shown that even when there is equivalent healthcare coverage, health disparities remain. Non-economic issues are harder to measure and study but they are there. In the case of specialty clinics, patients have to receive a diagnosis first to be referred. 

B. Many pwMEs have described being misdiagnosed as clinically depressed or anxious while others were labelled as lazy, hypersensitive to normal life stressors, hypochondriacs, etc. by their healthcare professionals. pwMEs of color experience similar issues but with the addition of racially/ ethnically-associated stereotypes. One of my medical professors believed that Latinx patients were more likely to express their psychological states through bodily symptoms (i.e. somatization). Some Black and South Asian pwMEs report being viewed as malingerers or as “work-shy” by clinicians. Conversely, some East Asian pwMEs have had their ME/CFS symptoms attributed to overwork or overambition. In any case, people’s symptoms were not taken seriously  or attributed to personality traits and lifestyle choices, rather than a medical condition. 

Such prejudices might affect even well-meaning health care professionals and pwMEs themselves. Public and medical educational materials are improving but for many decades did not highlight that people of color could be affected. They often featured images of Caucasian patients, influencing readers, website visitors, etc. to conclude – consciously or unconsciously – that only Caucasian people can become sick. Doctors might be misled into believing Black individuals cannot have ME/CFS. People of Native American descent might decide only Caucasians can be sick with ME/CFS and thus do not see their symptoms as related. Internalized cultural values also play a role. Some Asian-Americans and Latinx individuals are reluctant to make too much of their own symptoms. They don’t want to be seen as “complainers” by their communities: exhaustion, insomnia, muscle pain, etc. may be expected as the price to be paid for the American Dream. Thus, a diagnosis of ME/CFS depends not just on the healthcare provider’s knowledge/ views but also the patient’s and the interplay between them at a visit. 

A multi-prong effort is needed to change this situation. Some examples:

1. Public and medical education materials should mention the disproportionate impact on communities of color and include images showing people from a variety of backgrounds. 

2. Information about ME/CFS could be spread through channels that are more likely to reach people of color. Advocate Beverly Weiss and I recently persuaded the World Journal, the largest Chinese-language paper in the United States to write an article about ME/CFS. Similarly, specialized media outlets like Telemundo or the Root can be targeted. I would encourage ME Action members who are part of these communities to pitch them an article/ story. Materials need to be translated into Spanish and Chinese, the two most common foreign languages used in the US. For example, the US ME/CFS Clinician Coalition Guideline was translated into multiple languages. 

3. Clinical and scientific groups with an expressed interest could be educated about ME/CFS. Many health professional organizations include a minority health interest group. Institutions like the US National Institutes of Health

#MEAction: Black people with ME have historically been told that “they don’t get this disease?” (Wilhelmina Jenkins, an African-American with ME, wrote a poignant article about doctors dismissing she could have ME because she is black.) Similar rumors swirled around African-Americans being immune to covid-19. Why do you think this is? 

Dr. Chu: See my prior response regarding medical educational materials. I am not familiar with these rumors and so cannot address them. Van Jones of CNN and Brentin Mock at CityLab offer interesting insights about COVID-19.  Two general thoughts:

– African-Americans have good reason to be suspicious of medical authorities. For most of American medical history, African-American communities have been ignored at best and taken advantage of at worst. One infamous example is the Tuskegee syphilis study, which withheld treatment from the Black men participating in the study long after it was known antibiotics could halt the spread of their disease. Scientist rationalized that this was the only way they could study the natural progression of syphilis. There are many other examples. Rumors are more likely to sprout and grow when there is lack of and distrust of medical information. 

— The Internet has resulted in an avalanche of information but the quality of that information is questionable. This has been a problem since the Internet’s birth and is worsened by malicious misinformation campaigns. With unfamiliar sources/ people, I often look up their background, previous work, and funders before handing over my trust. Even professionally looking or sounding individuals and materials may have dubious origins. Tracing origins can be tedious.  Furthermore, how to apply the information collected to one’s specific circumstances is often confusing and overlooked. 

#MEAction: What are some important steps, in your view, of addressing the injustices facing communities of color when it comes to ME (and covid-19)? 

Dr. Chu: A. Medical professionals, researchers, and all of society need to learn about these injustices and acknowledge many of them are driven by our own prejudices, conscious or not, intentional or not. Frequently, I read articles online about racial/ ethnic inequities not just in healthcare but in the American educational, financial, legal, political, etc. systems and – inevitably – other readers will question whether these inequities truly exist or if they are as bad as they are. Usually, this view shows up within the first 5 comments. Even when solid data are presented, some will irrationally promote their beliefs. 

These prejudices can be subtle: I’m not immune to them. Recently, prompted by the crisis in Italy, there has been a debate about who should receive help breathing via ventilators if there is a shortage of them. My first thought was that selection should be based on who would be most likely to survive/ recover. Generally, this reasoning would favor patients with no, few, or well-controlled chronic illnesses. That made sense to me (especially as it is similar to the criteria for organ transplants) until I read this enlightening Op-Ed by Dr. Harald Schmidt which explained why such criteria would unfairly penalize people of color. Multiple, severe chronic illnesses may be the result of decades of inequitable healthcare. So even criteria that appears objective and scientific on the surface might not be so when examined further. That Op-Ed changed the national ventilator guidelines. 

B. Figure out where inequities exist and why they endure so that we can come up with effective, practical solutions. In science, there’s an old saying: “If you can’t measure it, then it doesn’t exist.” Public health professionals have been requesting that ethnicity/ race be considered when studies are designed or data is collected/ analyzed for COVID-19. The same needs to be done for ME/CFS. 

Currently, almost all ME/CFS studies consist primarily of study participants who self-identify as Caucasian. Results from these studies might not apply to non-Caucasian groups. It is also impossible for these studies to subgroup by race/ ethnicity as the number of non-Caucasian participants are too few. One solution is for researchers to specifically target non-Caucasian individuals (e.g. publish flyers in Spanish). Another would be to examine all potential subjects answering a study recruitment ad for ME/CFS rather than depending on a prior diagnosis by a doctor. Our knowledge about non-Caucasian pwMEs come from such community-based (vs. clinic-based) studies. To learn more about how racism may affect clinician diagnosis and decision-making during a patient visit, take a look at Dr. Michelle van Ryn’s framework. 

C. Establish a national healthcare system. The US is only developed nation in the world without universal healthcare coverage. I have relatives and friends who live abroad and so have  observed how their healthcare systems work.  One silver lining I hope will come out of the COVID-19 crisis is that more people will realize how important universal coverage is. Linking it to employment means many previously covered but now un/ underemployed may not be able to get care when they most need it. Furthermore, for infectious diseases, whether your neighbor is able to obtain medical care affects not only their health but yours.

#MEAction: Since you have worked in the healthcare field, what would you like to tell the health-care community now about health disparities when it comes to the POC community?

Dr. Chu: I think I’ve said a lot already! Keep an open mind and keep learning about health and other (economic, educational, etc.) disparities. Be aware of your own prejudices and try to combat them.  Try placing  yourself in your patients’ shoes and think about each step they have to take to see you, get properly diagnosed, and receive optimal treatment. For every step, if you think there might be obstacles related to ethnicity or race, there probably are so inquire about them. Remember Einstein said, “Imagination is more important than knowledge.  For knowledge is limited, whereas imagination embraces the entire world, stimulating progress, giving birth to evolution.”


1 thought on “When POC Can’t Get a Diagnosis, Go Unseen”

  1. This is an excellent and important article. Thank you to Dr. Chu for writing it and ME Action for publishing it.

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