by Peggy Munson
(continued from part 1) The ways ME/CFS and AIDS history are woven together in the US are just inextricable, so if Brea’s going to reference it, she has to get it right. Dr. Nancy Klimas touches upon this in Unrest, noting her early observations that ME/CFS patients shows an “acquired immune deficiency” similar to AIDS that involves dysfunction of natural killer cells. That can’t be a brief sound byte, without noting that in Japan, ME/CFS was for a long time considered a low natural killer cell syndrome, and then a US psychologist with heavy funding from the NIH (Fred Friedberg) became president of the largest international ME/CFS organization (the IACFS/ME, which had its conference one year in Japan), and began globally pushing rebranded ideas of dangerous cognitive behavioral therapy and graded exercise therapy (CBT/GET) approaches in scientific settings (Friedberg recently renamed these “fatigue self management“ or “FSM” as he tried to distance himself from the now-debunked PACE trials that so grossly harmed ME/CFS patients by forcing these approaches). These directed efforts to bury ME/CFS under erroneous psychobabble (in the US and other countries) have gone on for decades, abusively and lethally and branching far beyond retro notions of hysteria, so in terms of the spawning narratives around ME/CFS and how they morph into destructive ideas, its critical to be exacting.
If Brea also wants to weave in a feminist narrative (also talking about projected conversion disorders/hysteria in this day and age and the absurdity of that truth she personally faced), she must confront the inevitable reality that both Elaine DeFreitas and Judy Mikovits discovered evidence of an HIV-like retrovirus in ME/CFS before their careers were forcibly taken down by actual thugs (in the case of Mikovits, that man – Harvey Whittemore – who smeared her professional reputation and threw her in jail went to prison on unrelated federal charges). As a patient community, we also can’t ignore the way the great patriarch of immune-silencing, Anthony Fauci, was also once appointed by the government to spin the AIDS epidemic, and was in recent years appointed to rebrand ME/CFS (I haven’t read this book yet, but it’s further covered here), or how “virus hunter” Ian Lipkin – embroiled in a 2017 lawsuit accusing him of sex discrimination and of forcing his female colleague to examine lesions on his butt (I wish I were kidding, see: this) – received NIH grants for ME/CFS to hunt our central pathogen and look at our microbiome (yes, to look up our asses). With all of this going on in the context of high-profile sexual assault allegations and women demanding a bodily voice, it’s too trite and 2nd wave to reduce any feminist narrative within ME/CFS to “85 percent of patients are women” and an all-one mentality of cohesion. Two of my friends who took their lives in recent years, Patrick Kelly and Tom Hennessey, were male, and Tom was one of the last activists to have a national stage many years ago on Larry King Live, his voice loudly pealing about the links to AIDS, and the need to change the damn name. His voice was so refreshingly radical then; have things moved forward? Not really. There is still undeniable evil circling around ME/CFS. Another blogger made the point on Martin Luther King Jr. day that MLK Jr didn’t meet with leaders of the KKK because he wouldn’t humor an evil agenda or pretend it can be reasoned with, noting that ME activists meeting with the CDC – as Jen Brea recently did – is for patients a related version of humoring evil that gives perpetrators too much of a stage. With a solid history of how badly the NIH and CDC have treated ME/CFS patients, this argument of never humoring the enemy becomes pretty sound.
Around AIDS, gay men (and their allies) specifically revolutionized the role of visual language and aesthetics in AIDS activism at a time when 2nd wave feminism rapidly evolved because if people didn’t differentiate fragile identities and their differences within the “clusterfuck,” people died. So that’s where moments of Jen Brea’s muddling cause problems. She seems at times to identify with the lowest 25 percent of patients like me who are homebound and bedbound, but then she’s traveling to doctors in far-off cities, riding Dr. Klimas’ (Florida clinic) exercise bike to determine when she’s crossed a detrimental aerobic-anaerobic threshold, appearing in the desert with an RV, and seemingly at Stanford in Palo Alto then appearing at a Princeton reunion. The film gets way too clusterfucky by not explaining this well and without a clear chronology. This doesn’t imply she didn’t crash and really suffer for her efforts (which no profit from a film could make up for, really), but I for one have tried to get my denying family for decades to comprehend that I can’t travel, and they won’t believe it. They even repeatedly threatened to kidnap me to force me to “just move” and called me “intransigent” because of the effective geographic paralysis of severe ME/CFS, so I know any vague message around this does extreme damage to the sickest patients. Somewhere, Brea missed the point of the Robert Mapplethorpes and Keith Harings of AIDS art, how the sculptural curves of bodies disappear into chalk outlines in a flash if one isn’t meticulous with specifics. Let’s feature the images of people in darkened rooms, and Brea’s powerful use of Skype-interviews to reach far corners of ME/CFS isolation, but without cheapening that utopia by denying our critical differences. That visual language does matter, and desperately needs to be shifted under a sharp lens that pushes far beyond diarist-documentarian.
So, I’m thinking of Heather because, as she was falling down the rabbit hole – losing friends, disbelieving family, financial resources – she kept writing queer celebrities to implore them to give her real help. As a queer-identified woman, she felt the only way to be noticed was to be a celebrity or be saved by one who had the power and connections to do something (“she was obsessed” said a mutual friend). I don’t think she was wrong that celebrity is access, access is power, funding allows dream-making, as Brea’s story and the success of Unrest ultimately proves, even as Brea deserves to tell her story. Heather’s story, though, was about trying to matter with too many strikes against her in the world. She could play instruments. She could write a searing line and her friends loved her to pieces. She could even crowd-fund more effectively than most. But her vocal pleas on the Internet couldn’t get her enough help.
And Heather’s story didn’t end with an inspiration narrative (the kind most in the disability community reject as ineffective and insulting), as Jen Brea’s did too much in Unrest. Heather became basically homeless, living temporarily in a hotel friends had raised money for, estranged from most family, increasingly bedbound and unable to care for herself, and then she chose to go that night to the train tracks, right there on the cusp of the right and wrong side of the tracks, where she’d been effectively driven by a lot of social forces – and end her own life. With invisible illness, shades of invisibility matter. Her story was not a mainstream, camera-ready narrative, even as she looked great on YouTube, begging earnestly for her life, saying heartbreakingly, “it’s the only life that I have.”
Unrest does depict the brilliant Ron Davis and his astonishing team that includes three Nobel laureates and still, as he notes in the film, his two applications to the NIH were returned without review (his wife Janet says about this, brutally, “I think we should tell them we’d like them to come around before our son is dead”). The conspiratorial level of government control (by forces like the NIH) to suppress this epidemic is so shocking with such understated punctuation I hope people can really hear it. But as my comfort level increased with the ups and downs (and triggering moments) watching Unrest, I suddenly saw my friend Patrick Kelly on the screen, his wispy-looking hair, giant smile, and artsy good looks. He was part of Brea’s montage of images of patients who had killed themselves, a deeply disturbing moment when some of the people were not described or even named (not even with an epitaph-like inscription), soon after the film talked about projections of hysteria on women. Then there was lovely Patrick, a straight white guy (with an artsy, funky, clever sense of what that meant) who cared about visual representation as a graphic designer, now flattened into a screenshot. Then I saw Vanessa Li – whose backstory I know chillingly though I didn’t know her personally – who took her life at age 32, just flashed there, her real and more nuanced story totally lost (when some of Vanessa’s specific story, featured nationally in The Atlantic, is easily quotable). At that moment, I couldn’t help but compare the offensiveness of depicting these lost-to-suicide ME/CFS patients to a YouTube celebrity (Logan Paul) who is now apologizing all around the Internet (but still profiting wildly) for showing dead bodies in Japan’s infamous “suicide forest.” It was tasteless, and disrespectful to the families and friends of tragically lost people who fought hard to keep going.
Beyond the “clusterfuck” of maligned patients dealing with multiple layers of loss, stigma, and oppression, Jen Brea’s film may broaden the medical canon of what this illness even is, and loosen the grip of social projections, and I truly hope it does – but it needs to be part of a much larger oeuvre of patient narratives and medical research and strong scientific reporting that stops arguing the same point of “not psychological” without going deeper into the specific history of that construction in ME/CFS. The distinctions in the clusterfuck illnesses matter tremendously if one is trying to shape a cultural narrative. For example, what about the study that found distinct spinal fluid markers in “CFS” versus primary Lyme patients, a newer study that found distinct brain markers in ME/CFS versus (similar) Gulf War Syndrome patients, but also, the distinctions between ME and the falsely constructed “CFS” shouldn’t confuse people (on why I’d ever use “ME/CFS” needs another post). Some of Brea’s distinguishing of ME/CFS as a mitochondrial disease are fitting, but her descriptions of ME/CFS’s most characteristic feature – post-exertional malaise or PEM – are way too oversimplified, when some of us crash for months or years to hellish, obliterating degrees. We can’t afford muddling at a time when the government’s thrown shade is still about pretending we’re symptomatically vague or factitious or (worse) concocting storylines from the Internet. Instead, we need to go forward reverse-clusterfucking right back at them with their meaningless words. The lens must be sharpened for that battle – and I hope, going forward, that it is. read part 1
*Heather had primary Lyme disease; Patrick, Vanessa, and Tom had primary ME/CFS, most had some indications of clusterfuck illness overlaps as well.
Peggy Munson has been living with ME since 1992, when she contracted a sudden, meningitis-like “flu” right before embarking on a journey through the Southwest to the then-AIDS epicenter of San Francisco. Her ME has always included multiple hypersensitivities including chemical sensitivities and severe PEM/post-exertional malaise; she also acquired secondary dog-borne and tick-borne illnesses from 2004 onward, making her much like that of an AIDS patient with secondary infections as a defining feature. She is the editor of the ME/CFS book Stricken and a collection of poetry about ME/CFS, Pathogenesis.