Transcript for podcast “The Sexist Truth about Contested Illnesses”

The following is a transcript for a podcast I recorded in December 2018. It was an assignment for my Cross-Platform Journalism Class at the University of Iowa School of Journalism and Mass Communication. You can listen to it here: https://soundcloud.com/isabella-rosario-969685290/mecfs-fibromyalgia-the-sexist-truth-about-contested-illnesses

We all get sick sometimes and have to call our doctor’s office, make an appointment, and sit in a congested waiting room. Whether we have the flu or diabetes, we expect to be quickly diagnosed and prescribed a treatment plan.

But what happens if your standard lab results come back normal, and you end up being sick for months or even years without answers?

And what if when you’re finally diagnosed, you learn many doctors believe your illness isn’t real, or is just psychological?

This is the case for millions of patients around the world with so-called CONTESTED ILLNESSES, like chronic fatigue syndrome, which researchers have yet to find the biological cause of. But that doesn’t mean biomarkers don’t exist or that patients — most of them women — aren’t suffering.

Jaleesa Jenkins: My name is Jaleesa Jenkins, I’m 21, and I have several disabilities. One that is very audible, I guess, is my Tourettes, so that just makes me make movements and noises that I can’t control.

Jaleesa works at her local boys and girls club. She loves Disneyland, Dungeons & Dragons, and talking about disability. She has two so-called “contested” illnesses: fibromyalgia, which is a widespread pain condition, and myalgic encephalomyelitis, ME, more commonly known as chronic fatigue syndrome. This name is deceiving. ME patients aren’t JUST TIRED. Their symptoms often leave them bedridden.

Jenkins: And I can get pain and a lot of fatigue and dizziness and like, cognitive issues, mainly. As well as like stomach issues, and headaches and stuff like that.

Jaleesa says her ME is mild compared to most patients, although she is too sick to attend school. She says her identity as a young black woman meant doctors dismissed her concerns — even when she was obviously ill.

Jenkins: I think it affected my doctor’s ability to take me seriously a lot of the time. Because there would be times when I would come in hardly able to walk, hardly able to follow the conversation or put a sentence together, and just in an insane amount of pain.

They’d be like, “oh, we’re going to do these tests, but she’s just stressed.”

And when those tests came back normal, Jaleesa’s doctors would say her pain was psychological. Even when she came in with a simple health issue.

Jenkins: It’s been everything down to my broken pinky, actually.

Eventually, Jaleesa was correctly diagnosed. But she still encounters doctors who say she’s just stressed. She says part of the reason her diseases have been dismissed is because they primarily affect women. Women make up roughly 75 percent of patients with fibromyalgia or ME.

Jenkins: Generally, diseases that tend to affect more women have been ignored and they take longer to get diagnosed and get treated.

This applies to multiple sclerosis, which is two to three times more common in women than men. MS was often diagnosed as hysterical paralysis until the CAT scan revealed brain lesions. It can still take years to diagnose. And so, when women have an illness that doesn’t yet have a standard test, like ME, doctors are even less inclined to believe them.

Jenkins: It’s just like a complex disease that is hard to detect from the outside. I’m not really surprised that it’s become a so-called contested illness.

Fibromyalgia affects about 4 million Americans, and ME affects over a million Americans. Although these diseases primarily affect women, men get them, too, and also struggle with being taken seriously. Society and even many doctors believe these diseases are made-up, or “all in patients’ heads,” echoing the olden days of female hysteria. But the fact is, there’s plenty of research supporting that these diseases are real.

Dana Dailey: Oftentimes, we find, still in the medical field, there are some people who don’t believe in the diagnosis of fibromyalgia because there isn’t clear-cut diagnostic criteria.

This is Dr. Dana Dailey, an assistant research scientist at the University of Iowa. She notes that imaging has shown brain abnormalities in fibromyalgia patients.

Dailey: We know that people have what we call central sensitization, so they have changes within the brain that changes how they actually process pain signals. So, it is a little bit different for everyone.

And that difference is the issue. Studies have shown neuro-inflammation and excessive sensory nerve fibers in fibromyalgia patients. But findings haven’t been consistent enough to establish an exact cause.

In a way, fibromyalgia is all in patients’ heads.

Dailey: It is all in their head in terms of those processing centers for pain are in their head, in their brain. And so oftentimes, you’ll see the commercials even for medications for fibromyalgia, it’s a case of overactive nerves. Well, and what they’re really trying to get to the point is that, you have input into your body or you might not have any input at all, but how your nerves actually pass messages along through the brain does change. So those nerves are getting funky messages. Or they’re getting the correct message, but interpreting it differently.

There’s also quite a bit of research showing biomarkers for ME.

Dr. Mike VanElzakker: There are significant differences on many different measures.

This is Dr. Mike VanElzakker. He’s a PhD neuroscientist at Massachusetts General Hospital, Harvard Medical School.

VanElzakker: So, measures of metabolic activity, there’s brain differences in a proxy of neuroinflammation, there are plenty of studies that show blood-borne inflammatory markers are different between patients and controls.

Patients with ME have different energy processes. During everyday activities, their bodies switch into an energy that most people’s bodies use during intense exercise.

VanElzakker: So, you start off with an aerobic energy. And when you sort of burn through that, you get into anaerobic and that’s a little harder on your cells. You actually can you’re your own cellular material as energy and that sort of thing. They switch into anaerobic energy use more quickly and they sort of get stuck there.

The issue with ME, similar to fibromyalgia, isn’t that there aren’t biological differences. That part is clear. What’s not clear is specifically why and how.

VanElzakker: The question is, where does that come from? Why is it sustained? And, what are the actual mechanisms leading to those problems?

These diseases are hard to figure out. But research for them is also extremely underfunded. In the United States, the National Institutes of Health spends just five dollars per ME patient and two dollars per fibromyalgia patient each year, compared to twenty-five-hundred dollars per AIDS patient and two-hundred-fifty dollars per MS patient.

There have been over 70 outbreaks around the world of a disease similar to ME, often following an outbreak of a virus. Patients had fevers, muscle weakness, digestive issues, and fatigue. Researchers called it a new form of polio or brain inflammation, until the 1980s.

Male news reporter: Almost 300 people in the Lake Tahoe area came down with a mysterious malady, which the media would dub, “the Yuppie flu.”

Woman 1: Everything’s different now. I’m a disabled person. I was a healthy person.

Man 1: For two years, I lay in bed 22 hours a day.

Woman 2: I will not make it through this weekend if I’m this sick and in this much pain.

Woman 3: I’m barely skimping by. I lost my house, I lost my job.

Man 2: I lost my legal practice. I had to file bankruptcy and lost my automobile and all of my assets during the bankruptcy.

CDC officials didn’t examine patients. They stayed in their offices and looked at patients’ charts, which showed normal lab results. One official called it a disease of “depressed, menopausal women.”

Female news reporter: Instead, Dr. William Reeves, the man in charge of investigating chronic fatigue for the CDC told us over the phone that one, there is no viral cause for this problem. Two, there are no immune system abnormalities in patients with chronic fatigue. And three, there are no clusters. So when asked about the illness at Lake Tahoe, he said that was hysteria.

This impulse to cry “hysteria” still permeates conditions that mostly affect women.

Across the board, medical research is mostly conducted on male subjects. Including women and other minorities in clinical research didn’t become law until 1993.

VanElzakker: The vast majority of rat research is done on male rats. And it sort of like, assumed that female rats are just male rats plus hormones — which of course we know that is not true.

If you run down a list of conditions that are much more prominent in women, so for example, lupus, rheumatoid arthritis, you know, chronic fatigue syndrome is one — a long list of — and multiple sclerosis. And these are all conditions that have been psychologized.

Whether a disease becomes “contested” is largely dependent on society’s inability to believe women’s accounts of their bodies. These “contested illnesses” are heavily stigmatized — why would institutions fund research for what they believe doesn’t exist? And so, progress is further slowed for already complex conditions, and patients suffer as a result.

For patients like Jaleesa, emerging scientific evidence provides hope. But she says this cycle of psychologizing women’s diseases must end.

Jenkins: I just want to make the point that what happens and is happening with ME is part of a bigger story, and the story is that whenever there’s a new disease that we can’t explain, we usually explain it through psychological causes until we have further proof that it is biological. Even if we get all the scientific information we could possibly want about ME and get people diagnosed and treated, all of that, I think we’re just gonna do this to another disease. And the cycle’s gonna continue if no one acknowledges it or points it out.