By Ann Neumann

“No trial, affliction or sickness is to be regarded as an accident or a totally purposeless nuisance. It is right to seek immediate medical help and to pray for healing. It is wrong to lose patience and to throw away the promise – that all things work together for good to them that love God.” Dr Peter Masters, “The Healing Epidemic,” via “On Eagles Wings: A Christian Perspective on M.E.”^[1]

For decades, the causes and treatments for myalgic encephalomyelitis, also known as Chronic Fatigue Syndrome (or by the acronym ME/CFS), have been a complete mystery to patients and their doctors, but descriptions of illnesses with ME/CFS symptoms date back to the late 1700s: headaches and roving joint pain, swollen lymph nodes, memory loss and distraction, “unrefreshing sleep” and a leaden fatigue that keeps patients immobile in their beds. Likened to fibromyalgia, or conflated with it because of symptomatic similarities, ME/CFS as a disease has largely been misunderstood by the medical community ever since.

Medicine’s failure to explain or effectively treat ME/CFS has created a cottage industry of sorts, a panoply of cure-focused websites and books that offer help and hope to sufferers. Many of these are faith based, ascribing ME/CFS to spiritual doubt. They often prescribe getting right with God as the way to become healthy and whole again.

Take Howard, who is a sufferer. He lists a catalogue of ME/CFS causes in his “testimonial” at About Religion: “environment (pollution, chemical sensitivity), physical influences (viral, dietary), emotional influences (long-term stress, grief), medical influences (vaccinations), and spiritual issues (generational curses through occult involvement).”

That vaccinations have shouldered the blame for a host of illnesses is no surprise. When Edward Jenner conducted his first experiments with a smallpox vaccine in 1796, using minute injections of cowpox to immunize his subject, 8 year-old James Phipps, he was immediately ridiculed. Many declared that Jenner’s injections would turn children into cows (“vacca” is from the Latin for cow). A conspiracy-like fear of government has propelled anti-vaxxers (those who distrust and refuse vaccines) into the spotlight, blaming mandatory vaccinations for seemingly inexplicable illnesses, from autism to brain damage to infant death. (Thanks, Jenny McCarthy, Jill Stein, and Donald Trump.)

But the ascription of illness to spiritual causes goes back much further than 1796 – In fact, it’s ancient. You can find it in the meddling of jinn or the evil eye, punishment for sins against God and man, an imbalance of the humors, and failures to abide Jewish, Christian or Muslim laws of purity. It’s this much older health risk, “spiritual issues,” that Howard spends his time discussing:

Unlike native or indigenous peoples, our “western world, rational thinking mindset,” has difficulty accepting that physical harm can result from negative spiritual involvement. We hear much in the medical field about people being genetically predisposed to a certain illness or disease, including CFS. Perhaps not in all, but I believe in many cases, there is a spiritual predisposition, in the form of a generational curse, at the root of that genetic predisposition. Unless these generational curses are renounced and cut off, then there is a “freedom” for diseases to continue to manifest down a generational line.

Howard ultimately determined that he was being punished by the “curses that come about as a result of the oaths taken in Masonic rituals.” Three generations of his ancestors were Masons. He encourages his readers to know their own “spiritual histories” and he recommends that sufferers seek support from those who truly understand this cause of ME/CFS.

At All About Life Challenges, a website run by a nonprofit organization called All About God, an unnamed writer recounts his struggles with ME/CFS and writes of how he overcame his “plague”: “The misery-makers, frustration, helplessness, and my constant battle with despair were in fact His tools for strengthening my faith and trust in Him. Added to this, God was also teaching me through this experience to learn how to cultivate patience and endurance — something I had a very small stock of up until now!” At the end of his post, he makes the Internet equivalent of an alter call.

Coming to God, refinding one’s faith, is seen as a kind of medicine against the damages of disease. Another site, Chronic Fatigue Help, promises readers that if they have faith in God they have a “huge advantage” over those who don’t believe. Family Life astutely tells readers that, “The fact is, our world despises fatigue. It hates weakness, dependency, aging, inability, and weariness. Our culture’s ideal is to be strong, independent, youthful, vigorous, capable, radiant, healthy, and energetic.” Family Life recommends that ME/CFS sufferers accept the fact that really, we’re all weak in the eyes of God, all dependent on Him. Recovery requires seeing fatigue as an opportunity: “God will use your fatigue as the door into a deeper knowledge of His love.”

ME/CFS provides us with yet another sad but fascinating way to view the medical industry’s gendered approach to suffering, pain and fatigue. In a 2013 article for Charisma magazine, “Why You Don’t Have to Suffer from Chronic Fatigue,” Kathleen Walter and Donna Scaglione write about a new book, The Fatigue and Fibromyalgia Solution, which offers desperate sufferers ways to cure their ME/CFS. “Unfortunately, mainstream medicine has not taken fibromyalgia or chronic fatigue syndrome seriously, which historically has been a typical reaction to diseases affecting mainly women.” It’s an apt observation.

Four times as many women suffer ME/CFS than men and the medical community has long failed to acknowledge or treat women’s pain. As I wrote in this column last month, female pain is too commonly seen as the “natural” or God-given state of childbirth and motherhood, it is punishment for being the weaker sex, or it is the malaise particular to housewives. And ME/CFS is often denigrated as an affliction of the weak, the lazy, the unmotivated; it flouts the ambitious and independent characteristics of a diligent, patriotic and capitalism-driven American and is often seen as a woman’s illness, much as hysteria was less than a century ago. For men, emasculated by ME/CFS’s symptoms, the shaming can be even worse. For all sufferers, who have been ignored, unhelped or disparaged by the medical community, any promise of hope is welcome.

A vast library of books offer spiritual cures for ME/CFS, including Chronic Fatigue Syndrome, Christianity, and Culture (2002), The New Bible Cure for Chronic Fatigue and Fibromyalgia (2010, one in a series that addresses sleep disorders, depression and anxiety, and even diabetes), and Coping with Chronic Illness (2010). Their message is uniform: where science has failed you, God will not.

This swell of Christian self-help has been abetted by the medical community’s insistence that the disease is all in one’s head. “Historically, many doctors considered CFS a psychosomatic disorder that required psychological — not medical — intervention,” Cheryl Platzman Weinstock wrote at O, The Oprah Magazine in 2015.

The effectiveness of self-help solutions for ME/CFS was confirmed by a splashy study published in the British medical journal, The Lancet, in 2011. The study given the acronym PACE for the treatments it supported—Pacing, Activity, and Cognitive behavior therapy: a randomized Evaluation—found that the real cures for ME/CFS were not pharmaceutical or scientific but plucky determination. In short, the study advises sufferers to get some exercise, a good psychotherapist, and some gumption.

The recommendations were clearly dismissive of ME/CFS patients’ ailments, saying in short that they were weak-willed and needed to push their limits, to get out of bed and onto a therapists’ couch. The study concluded that its treatment regimen was effective 60 percent of the time. “The findings went on to influence treatment recommendations from the CDC, the Mayo Clinic, Kaiser, the British National Institute for Health and Care Excellence, and more,” wrote Julie Rehmeyer, a science writer and ME/CFS sufferer, at Stat News in September.

The medical community rather too placidly accepted that ME/CFS was best left to the plodding, self-help tactics of the patient or the vague mysteries of the placebo effect on one’s mind-body connection, thus exempting themselves from seeking scientific solutions to a physiological problem. At stat.org, Rebecca Goldin lists the “get tough” articles that the release of PACE generated:

“Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds”— New York Times
“Pushing limits can help chronic fatigue patients”—Reuters
“Brain and body training treats ME, UK study says”—BBC
“Helping chronic fatigue patients over fears eases symptoms”—Fox News
“Chronic fatigue syndrome patients’ fear of exercise can hinder treatment – study”— The Guardian

Sufferers were chaffed by the demeaning advice that they try “pushing limits” or going for a jog. But because the study appeared in a reputable medical publication, few in the medical community questioned it. Those who did were rebuffed, their clamoring requests for trial data denied. Until September, that is, when a patient campaign led to the filing of a Freedom of Information request to force the release of the PACE trial’s data from Queen Mary University of London, where the researchers worked. As Rehmeyer wrote, the released data was then scrutinized by a group of patients and medical professionals. The results of their findings were published at Virology Blog on September 21. The conclusion is damning.

The PACE study was found to be bad science. When The Lancet conducted its own review, it found that the results of the study were inflated; patients did not recover 60 percent of the time under the prescribed rehabilitation methods of the trial but only 20 percent. (I won’t go into the detailed flaws of the $8 million study; related information and the criteria by which critics have found it to be unscientific and biased can be found here, here and here.) Rehemeyer writes that the real results of PACE are that it “inflicted damage on millions of ME/CFS patients around the world, by promoting ineffectual and possibly harmful treatments and by feeding the idea that the illness is largely psychological.”

Only one agency has so far retracted the recommendations of psychotherapy and exercise prescribed by the trial, the federal Agency for Healthcare Research and Quality. But without further investment into new trials to study the causes of ME/CFS, Rehmeyer writes, “the lingering doubt” that PACE cast on the illness will continue.

Which likely means that those patients who rely on spiritual means of righting their illness will continue to do so. ME/CFS sufferers may have checked medical researchers’ pomposity and error by questioning PACE, but still they must wait for medicine’s legitimization of their pain. In the meanwhile, many ME/CFS patients will find relief where they can, including in the solace of God’s mysterious ways.

To be sure, science has never had the last word—even well-established medical achievements walk hand-in-hand with spiritual reckoning: Uncle Bob’s untimely heart attack, Mother’s inexplicable breast cancer. Much of the body and the world remain mysterious to us and we have long looked to other sources to fill in the (perhaps shrinking) scientific gaps. So, the “quiddities of fate” have always demanded holy explanation and filled in where science remained opaque or uncertain. But scientific explanations have still never been enough for us.

ME/CFS sufferers have long begged for medical attention for their disease. Their disproportionate faith in things unseen is not just a distrust of medical science, but rather a stubborn hope for its egalitarian, life-saving attention.

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^[1] (myalgic encephalomyelitis)

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Past “The Patient Body” columns can be found here.

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Ann Neumann is a contributing editor at The Revealer and Guernica magazine and a visiting scholar at The Center for Religion and Media, NYU. Neumann is the author of The Good Death: An Exploration of Dying in America (Beacon Press, 2016).

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Published with support from the Henry R. Luce Initiative on Religion in International Affairs.