Using Lessons From HIV Activism, People With 'Chronic Fatigue Syndrome' Fight for the #MillionsMissing
Scott Simpson was once a triathlete competing in events around the world. Nowadays, it's a triumph for him to climb two flights of stairs without landing in bed for days.
"With triathlon training, I'm always feeling tired, so I'm very familiar with what tired feels like; this was qualitatively a different experience," Simpson recalled recently. Avid TheBody readers might remember Simpson's inspiring, often hilarious blog documenting his passion for triathlons, and his travails as a "former party boy" turned dedicated athlete living with HIV. The blog was active from 2009 to 2011. One day in 2012, in the midst of preparing for a big triathlon event, Simpson woke up more ill than he had ever been before.
"At the time, I thought, this is like a cellular thing ... I am not just tired, I am without energy." It didn't take Simpson long to figure out that he got sicker after exercising -- and that the more he exercised, the sicker he became. Now, only the slightest amount of exercise is possible for him. If he pushes past his limit, he said, "I will have to spend a lot of time horizontal, so that I am not doing more exertion by sitting up."
Simpson was describing post-exertional neuroimmune exhaustion (reduced functioning and greater illness after even minor physical or mental activity). This is the symptom that people living with myalgic encephalomyelitis or ME -- sometimes (controversially) known as chronic fatigue syndrome (CFS) -- have in common. Because of this, Simpson figured out that he probably had ME within weeks of his first bout with the condition, but he didn't receive an official diagnosis for five more years. He went to doctors, bringing with him the International Consensus Criteria for ME, which he had found in his research; the document was ignored.
ME can manifest as a host of physical, neurological, immune, cognitive, and other effects, including debilitating pain and profound fatigue that does not improve with rest. Simpson, who is based in Canada, is among a small minority of people worldwide with an official diagnosis of ME. There is no laboratory test to diagnose ME, nor any U.S. Food and Drug Administration-approved treatments to fight it. The U.S. Centers for Disease Control and Prevention (CDC) estimates that, in the U.S., 90% of people living with ME are undiagnosed, with racial minorities even less likely to be diagnosed. Most health care providers know little to nothing about ME; those who hear of it are often influenced by bias and myths surrounding the disease.
HIV and ME: Different Diseases With Similar Challenges
Starting to sound familiar? "When I got this information, I started having déjà vu: June 5, 1981," explained Terri L. Wilder, M.S.W., referring to the first CDC report of five men with a condition that would come to be known as AIDS. Wilder became an HIV activist by choice, in 1989 in her native Georgia, and she was active for several years with ACT UP's New York chapter after moving to the city in 2009. By necessity, she was drafted into the struggle for ME visibility, awareness, research, and treatment. The onset of mysterious, severe symptoms -- and a providential encounter with ME activist Jennifer Brea -- led her to one of very few ME specialists, and her own ME diagnosis, in March 2016.
While ME and HIV are two very different conditions, their evolution in the public consciousness has communalities. As with HIV, ME has stigma and misinformation surrounding it that stem from attitudes toward those most likely to be living with it: It's estimated that 75% to 85% of people living with ME worldwide are women, who numerous reports show are less likely than men to have their symptoms taken seriously. "The sexism just screams at me," Wilder said.
While there are parallels with the early HIV epidemic, ME is not new: Reported clusters of similar illnesses date back as far as 1934. Some have been written off as mass hysteria (an inherently sexist term and diagnosis). To this day, people presenting ME symptoms are routinely told their condition is psychological in nature ("It's all in your head"). Psychological explanations for ME have held back research into possible biological causes of the disease, leading to the current state of research funding, in which roughly $6 will be spent per person living with ME in the U.S. in 2018. For comparison, nearly $2,500 will be spent per U.S. person living with HIV. ME is also not rare: Up to 2.5 million people are estimated by the CDC to be living with ME in the U.S., possibly more than twice the number of people living with HIV.
"'Why don't people care about this disease?' is the biggest question hovering over us," Wilder noted.
Another significant difference exists between ME and early HIV, before the advent of effective treatment: People with ME do not inevitably die from it, but they may disappear from view. People can live for decades with the day-to-day disabling effects of the condition, but reports indicate that up to 75% of them cannot work; at least 25% have been homebound or bedbound.
"[ME] can literally wipe away your life," Wilder said. "I know an opera singer who can no longer sing. I've met dancers who cannot dance anymore. There are teachers who no longer can teach, physicians who are no longer practicing medicine. This disease has completely destroyed their lives to the point that they cannot have any sense of normalcy, socially or professionally." Wilder is part of the minority of people living with ME that is able to work and therefore keep her health insurance.
With the support of a specialist (whom she is able to access because she lives in a city that has one who takes her insurance), Wilder has found a balance of treatments, supplements, and dietary changes that make working possible. In a recent TED Talk, Brea, co-founder of the advocacy group ME Action, described the other side of the spectrum: "Some are so sick that they have to live in complete darkness, unable to tolerate the sound of a human voice or the touch of a loved one." Brea documented her own and others' struggles with ME in her 2017 documentary film, Unrest.
The erasure of their lives often continues when people living with ME do die: Because they may not have been diagnosed or believed by medical providers to have been living with this disease, their true cause of death is not recorded. According to one study, because there is little hope for treatment or recovery, a high burden of stigma and disbelief from loved ones and providers, and a profoundly diminished quality of life, a leading cause of death for people with ME is suicide.
Activists Push Against Provider Indifference and Bias
Nearly four decades into the HIV epidemic, although challenges around access and awareness remain, activists living with HIV and their allies have effectively forced health care systems around the world to carve out space for respectful, informed HIV care and treatment. For people living with ME, as Simpson put it, "the health care system is one of the least safe places to be." It is where they are routinely traumatized, physically and psychologically, by providers who assert that their disease is all in their heads, offer treatments that cause harm, or condescend to tell them their disease is made up.
Wilder recounted an experience with a specialist who knew nothing about ME. "Within about 15 minutes of meeting with me, she literally said to my face, 'You know, medical providers don't believe this disease is real,'" she told me. "But what she was really saying to me was, 'I don't believe this disease exists.'" Without performing any kind of exam, the cardiologist told Wilder to "get more exercise" -- a recommendation that could land a person living with ME in bed for weeks, or worse.
It is clear from these experiences that, as with HIV and many other chronic conditions, the people living with the disease are its true experts. Wilder, who now coordinates the New York chapter of the advocacy group ME Action, has seized many opportunities to make this point publicly, testifying twice at the U.S. Department of Health and Human Services' Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting. In her first public comment, just 10 weeks after her diagnosis, she referenced her work with ACT UP and made multiple connections between early HIV activism and the need for action around ME:
If I end up really sick in the next few months or years it will not be because the disease or its complications made me sick. ... I'll be getting sicker from government committees that won't allow people like me (with ME) to sit at that table and help inform policies and programs that might actually save my life. We have a model allowing people like me at the table -- people just refuse to use it. I know this because my friends with HIV have a seat at the table.
This points to another key barrier to robust, in-your-face activism around ME: "People are so disabled that they can't come out to march," said Simpson. "We have a poster that reads: 'We'd be marching in protest, but WE'RE TOO SICK.' Marching is the last thing that people with ME can do, when exertion makes you sicker."
Online activism is a place where scores of people living with ME are able to be present and have their voices heard -- even those whom the illness has rendered literally unable to speak. To symbolize the millions of people living with ME worldwide who must be absent not only from activist actions, but also from their very lives, the hashtag and rallying cry of the global ME movement is #MillionsMissing.
"Social media is the only tool that connects us," Wilder said. The ME community has united around other online actions, as well, including #TimeforUnrest (which connects worldwide viewers of Brea's documentary), #BedFest (where creative, homebound people living with ME present their art from bed), and #BelieveMe (in which people with ME combat stigma and disbelief about their illness by sharing the realities of their lives). Creating their own media also allows the ME community to have control of public messages about their condition. "Too often, we are seeing that when our message gets put through traditional media, it gets twisted and distorted and causes more confusion," Simpson pointed out, echoing a similar frustration with mainstream media among people living with HIV that gave birth to resources such as POZ magazine and TheBody. "The more we can create the media and control the message, the better off we will be," Simpson said.
Medical literature is filled with health conditions, from ulcers to epilepsy, that were once thought to be psychological in nature before a biological cause was found, leading to more options for detection and treatment. But, for these advances to be made, researchers must have the will, and the resources, to look. "I can accept the ME diagnosis, and I can accept the bleak prognosis," Simpson said, "but I cannot accept our government's neglect and harm of Canadians living with ME."
Simpson and Wilder both use the skills they've gleaned over decades as HIV activists to understand who has the power to make changes that will lead to improved lives for people with ME, such as lawmakers, state health departments, and federal public health and research bodies -- and to put pressure on those targets. Wilder has made progress getting ME on the agendas of several New York legislators and worked with the state department of health on several ME-related educational measures, including building a website about ME. Further, the U.S. National Institutes of Health is slowly shifting its research priorities regarding ME.
These are important steps, but in the HIV community, we know that shifts in culture and priorities take time -- and pressure. "I feel like we are at June 5, 1981," Wilder stated. "I need to get us to at least 1996."
To learn more about ME and get involved:
- Join with the #MillionsMissing visibility campaign on social media on May 12, the international awareness day for ME, CFS, and other chronic immunological and neurological diseases.
- View the full-length documentary film Unrest, available on Netflix and other streaming services.
- Go to MEAction.net.
- If you live in New York, request to join the state's ME Action Facebook page