Therapy Fails and Psychiatry Politics
One patient's story and struggle for legitimacy
One of the most interesting findings throughout my several years now deep diving into the complex lives and researchscapes of complex chronic conditions is the latitude of contention between medicine and patients. For decades, patient priorities and concerns have been put on the back burner. The most profound of which may be associated with the PACE Trials, which consume many pages in my forthcoming book Invisible Illness, and the pages of any other serious writer addressing the history of ME/CFS and Long Covid.
A few months ago, I was invited to participate in a Commission on Emotional Determinants of Health for The Lancet. I was invited by a couple scholars who I look up to, so I was naturally thrilled to be considered to join the project. The project has been in the works for more than five years, and I was eager to join them to write about complex chronic illness. Indeed, I thought they might also be interested in my extensive writings on the ways in which people use words of trauma to discuss chronic illness, often called idioms of distress, which has been a central focus of mine for decades. However, after meeting with the team, I learned that the leadership involved some actors who were viewed as villainous in the disability community, and I felt they wanted me to write in a way that I wasn’t particularly comfortable with writing. I pushed back a bit but eventually I recused myself from the commission.
The history of treatments for Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is one that is mired in controversy. Some people I interviewed in the past two years would not share their names with me because they worried it would put them in harm’s way due to the pushback they initiated against the way the Center for Disease Control and Prevention in the 1990s. They felt ignored and in many ways harmed by the lack of recognition and awareness they felt their lived experiences were given. In what follows, I share a story of a global health professor who became extremely sick, confronted this treatment, and found a new path that has brought a new pace and sense of stability into her life.
Living with Chronic Fatigue in America
Jennifer was knee-deep in research in Ecuador for her PhD studies when she became really sick. During her first two months of work, she got a parasitic infection. Then, she returned to her life in Seattle to recover, think through her data, and take care of obligations at home. It was during this time that things with her longtime partner were deteriorating and she knew she’d have to leave him. About six months later she returned to Ecuador to continue her research and she got an intense virus that she thought was influenza. When she recovered and returned to Seattle, she left her abusive partner and focused on getting back her health. When she looks back, the compounded infections and emotional stress from her relationship were at its peak when she started to unravel.
The first clinician who diagnosed her with ME was a rheumatologist who Jennifer called “pretty terrible.” Although he was nice, he suggested creative exercise therapy and cognitive behavioral therapy. Jennifer was outraged in part because these two therapies put blame on the patient and overlook the complexity at the root of her exhaustion—creating a deep mistrust.
The clinician, however, was doing what they thought was standard protocol for ME/CFS. British psychiatrists and psychologists developed a graded exercise strategy for treating chronic fatigue syndrome during the 1990s in part based on the rationale that these patients were not “medically sick” but rather out of shape, or deconditioned, from a prolonged period of avoiding activity (due to thinking they were sick). Patients were encouraged to push through the exhaustion and pain to rebuild their strength, view fatigue as transient, and question the idea that it is completely psychological.
While graded exercise therapy (GET) was developed to target and free chronic fatigue sufferers from debilitating physical and cognitive symptoms, many argue that instead it made symptoms worse. GET was based on the idea that people with debilitating fatigue have been deconditioned, and that a graded exercise routine would improve their health. This “evidence-based recommendation” was based on the PACE Randomized Control Trial, published in 2011, that reported 70% of people enrolled in the study improved. What the trial suggested was that ME/CFS was a psychosomatic condition that could be overcome with exercise and talk therapy.
This outraged ME/CFS activists. I spoke with ME/CFS journalist Dave Tuller who explained this controversy to me over zoom. When Tuller started to investigate the PACE Trial, he discovered that the 70% of people who improved by participating in the study was misconstrued. I’ve spoken to several women who were recommended to engage in GET and CBT, causing them to crash more deeply than they had in the past and feel sicker for longer periods of time. These recommendations have been critiqued and were eventually refuted; however, many clinicians still believe these recommendations are best practice.
Unfortunately, these therapies elevate a blame-game for people with ME/CFS and with Long Covid. When people feel extreme fatigue—or post exertional malaise (PEM), which is a defining feature of ME/CFS—the last thing you want to encourage them is to engage in focused exercise because it can wear out your body for days.
Jennifer would experience a disproportionate crash after daily tasks like taking a shower. She’d feel fatigue, exhaustion, and take days to recover to resume everyday life. But the most intense symptoms for Jennifer was the muscle weakness, which was elevated to the point of paralysis that lasted for hours or weeks.
When we discussed what might have been the cause of Jennifer’s chronic fatigue, she mentioned how similar her experience was to Megan O’Rourke’s book The Invisible Kingdom—a best seller and intimate account of living with Chronic Lyme. She wrote, “I have experienced both normal fatigue and pathological fatigue, which is altogether different from tiredness or physical exhaustion. It is a feeling that my body’s most essential energy functions have screeched to a halt. […] When I was very ill, I could barely walk down the block, and fatigue blacked out whole days; it felt as if my body were made of sand, and as if molasses had invaded my brain.”
Jennifer said, “I had Epstein Barr Virus in college so maybe it was related to that, and then there is the element of getting these other infections and being really worn down. Is it that my body fought off infection and that then I had these multiple stressors that activated my immune system to a hyper state? And now it’s doing an autoimmune thing. Is it that my body fought off infection and my immune system got sort of exhausted and out of whack in that process and never recovered? Or is it that there’s some combination of environmental and life experiences that started my immune system to start working in ap articular way? I think it’s, in my case, the acute traumatic experience combined with the infections that probably were all working in concern in some way that we don’t understand. But I think the important thing to stress in that case is it’s working in concert to create actual physiological changes. It’s not just like, oh, you were traumatized, and you didn’t have mental health care. But no, it’s like it actually made a change in your body and now there’s another cascade of things that are going awry.”
This view is one reason Jennifer was so frustrated by the rheumatologist’s suggestion that she engage in cognitive behavioral therapy to overcome her chronic fatigue. She perceived that the doctor’s suggestion to engage in CBT was another way of saying, It’s all in your head. Although CBT can be extremely helpful for people with mental health conditions, it cannot solve multi-systems syndromes that are a combination of neurological, immunological, and metabolic conditions. “You know, the idea that it’s psychological is not correct, right? It’s in that same vein, like so many illnesses. You begin to find that all these things that didn’t have or don’t have a specific biomarker, a clear path to diagnosis, tend to be called psychosomatic. If we in the medical system don’t have a clear explanation of what’s going on, and especially if the majority people who are affected are women, they say it’s psychological. It was the same for multiple sclerosis until they discovered the plaques in the brain that could show up with an MRI.”
Indeed, for Jennifer her physical disability was the most overwhelming side effect of her illness. “My most prominent thing,” she explained, “was an amount of exhaustion and muscle weakness, and I just discovered that it was really hard to do everything I had done before and never thought about. I work pretty close to home and at the time was walking to and from work. It’s about a three quarters of a mile in each direction and I had a dog, and I was walking the dog. As I was walking home, I felt like cross country skiers who are pulling a sled of supplies, like I was dragging this huge sled of supplies behind me. It was a lot of effort to walk, to do things, and then I would have post exertional malaise. And I was not pacing, which is pretty much the only thing people with ME can do that seems to be effective.”
Many people need to find a new baseline activity level with ME/CFS, which often involves reimagining what a new normal means with chronic fatigue and recognizing that this might activity level may shift with time. Most people with ME/CSF use pacing as an effective strategy, which means being in tune with one’s body about what rest one might need to save up, what exertion is possible, and what amount of time is necessary to recover from a big event. Many people have found that being completely inactive before planned events that require a great deal of energy (like attending a party, or giving a talk) can help prevent PEM. Engaging in radical rest is also a way in which people can return to a new baseline.
Jennifer explained, “Everyone with ME/CFS are into pacing; when you get acutely ill you have to slow way down and take time to recover because it flares everything else. I get headaches. When I get acutely ill, I have to recover. Other things bubble up and you have to respond to those. There has been a lot of fear of covid in the ME community—people who get covid and are very worried it’s going to get worse. The thing with ME, almost no one gets better. Some people even out. There was a lot of fear that they would decline.”
Many people use Spoon Theory when they think about pacing. This metaphor—created by Christine Miserandino, who has lupus—conveys the idea that you begin the day with twelve spoons, which represents your energy for that day. For most people, waking up and getting ready for the day takes one spoon, going to work takes four spoons, and they don’t use as many spoons and they have some left at the end of the day. But people with energy-limiting illnesses, need to think about their energy differently. For instance, getting out the door is four spoons, and going to work is six spoons. Then, doing an activity to a PTA meeting is four spoons, and going home to make dinner is another four spoons. This doesn’t add up – and you just don’t have the energy. Therefore, people living with ME/CFS think carefully about what they need to do throughout the day with pacing. It’s a helpful social tool too, conveying to loved ones that you need to rest; “I’m sorry that I cannot do [the activity], I only have two spoons left.”
Jennifer is an academic so when she discovered that medicine had very few answers for her, she dug deep into the scholarly research published about ME. She eventually found the ME Action network and other groups where people came together.
About the ME Action Network, Jennifer says, “It was tremendously helpful to me. It’s a double edge sword because you get a lot of information and support, people say this weird thing happened to me, and you get a lot of validation. But it’s hard because you witness a lot of suffering. I’m considered mild ME—I’m not housebound, or bedbound. There are so many people who are considering suicide, isolated, and demoralized. Those communities expanded my network of support people.”
Part of Jennifer’s pacing is navigating around events that require high levels of exertion, like walking to work. In April 2022, Jennifer started using a power wheelchair to travel long distances. She said, “using the wheelchair is a prevention tool for me.” She is an ambulatory wheelchair user, meaning she can walk. For instance, if she is going to a museum and it’s too much exertion, she can take the power wheelchair and enjoy the museum. She uses the wheelchair to prevent exhaustion, conserve energy, and keep that energy for something important. She learned how to pace, and to use her wheelchair strategically throughout her day from community members on the ME/CFS listserv.
Jennifer explained how being a wheelchair user was difficult in part because it many aspects of her ME/CFS visible. She explained how the experience of being an ambulatory wheelchair user influenced her passion for disability justice because, “Seeing the world as a wheelchair user is a whole new thing.”
I asked her if she experiences much discrimination in her chair. She said, “There are a lot of microaggressions, such as people leaning on your chair, or touching your chair. And ableism becomes super clear. And you see the world differently when using a wheelchair.” She sighed, “Nearly every time I go out, I get hit by a car. Because people just don’t look—they don’t see you. They’re like, I don’t see you, because you’re shorter.”