For Those Suffering From Chronic Fatigue, Victim-Blaming Is Rampant
By Naomi Chainey
Stigma and mistreatment have those with chronic fatigue syndrome fighting back.
I n 2006, I was diagnosed with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), a complex disabling condition, classified by the World Health Organization as a disease of the central nervous system. Symptoms include digestive stress, joint pain, inability to regulate temperature, aching muscles, cognitive dysfunction, and unusual adverse responses to activity, stress, and sensory stimuli. The condition ranges in severity, but an estimated 25% of those affected are housebound or confined to their beds, potentially for decades at a time. My own condition is comparatively moderate, but severe sufferers describe their experience as “a living death.” Occasionally it causes actual death.
In over 5000 peer-reviewed studies, researchers have identified physical abnormalities in the immune, cardiac, endocrine, and autonomic nervous systems of ME/CFS patients. Though an underlying cause has yet to be identified, the debilitating physical symptoms cannot be denied.
Yet despite all this, the belief that ME/CFS is a “lifestyle disease” continues to influence public opinion, patient care, and availability of research funds on an international scale. Why? Well, aside from being saddled with a dismissive diagnostic name (“fatigue” is the least of our problems), there is ongoing insistence from a group of influential British psychiatrists that “illness beliefs” play a major role in perpetuating the condition.
For instance, here’s Professor Michael Sharpe in 1999, calling CFS sufferers “undeserving” of care:
“Those who cannot be fitted into a scheme of objective bodily illness, yet refuse to be placed into and accept the stigma of mental illness, remain the undeserving sick of our society and our health service.”
This was the unabashed mindset of Sharpe, his collaborator Simon Wessely, and their colleagues when they developed the cognitive behavioral therapy (CBT) and graded exercise therapy (GET) they still push on ME/CFS sufferers today. Sharpe and Wessely adapted CBT, an approach that had been broadly successful in treating anxiety and depression, for ME/CFS sufferers, on the theory that they were actually struggling with mental illness. The doctors recommended it in concert with their GET program, designed to gradually increase exercise back to normal levels. People with ME/CFS consistently report that enforced exercise is potentially harmful — a claim now backed by research on their physiological responses — but the words of stigmatized patients counted for little.
CBT and GET have become internationally accepted as appropriate treatment for ME/CFS, and refusing that treatment has resulted in involuntary hospital admission. Parents have been labeled “abusive” for supporting their adult children’s medical decisions, and have had police show up at their door to drag their incapacitated children away.
Those who don’t recover (and recovery is less than likely) are left with the implication that their ongoing illness is self-inflicted. This institutionalized victim-blaming runs contrary to the science, and it has left the ME/CFS community of sufferers, advocates, and support organizations very, very angry.
Disability Rights And ME/CFS
The clarion call of the disability rights movement is “nothing about us without us.” This is imperative if the interests and autonomy of disabled people are to prevail. We know our bodies and we know our social context. Our voices, like those of any disadvantaged group, are vital to the public policy that dictates our welfare.
What people with ME/CFS collectively want is biomedical research, a need being met only in dribs and drabs because governments seem unwilling to take the situation seriously. Over 1 million people in the U.S. suffer from ME/CFS, but funding for research was only $6 million in 2015. For multiple sclerosis, a condition with similar levels of disability and cost to society, the figure was $94 million.
Because so few publications support high-quality work from marginalized voices — and pay.theestablishment.co
For people with ME/CFS, well-funded research could mean a chance to return to active lives — but, perhaps equally importantly, it also represents vindication. We want blood tests and scans that prove to our friends, family, employers, and health professionals, once and for all, that we are not “pulling the sick card” out of a pathological desire to be inconvenient. Living in a social environment where people are predisposed to second-guess our very self-perception has left us exhausted and demoralized.
The Irony Of The Psychological Model
The most misguided assumption inherent in the psychological model of ME/CFS is that patients perpetuate their own illness for perceived social benefit. The irony, of course, is that the psychological model itself perpetuates the reality of social disadvantage.
A Danish study recently established the average quality of life for ME/CFS patients as far below that of the general population, and below the averages for all 20 other conditions studied (including multiple sclerosis and chronic renal failure). Common experiences include financial destitution, social isolation, losing the support of family and friends who doubt the illness, and dependence on health-care professionals who openly resent the “difficult” patients. If there’s any social benefit, I have yet to identify it.
A great deal of the stigma and mistreatment of ME/CFS sufferers comes directly from the medical community. Two things you learn participating in ME/CFS support groups is that everyone is desperate to get well, and everyone has had a bad experience with a doctor. Whether it’s harmful treatments, assumptions of sexual abuse, being chided for using mobility aids, or outright being laughed at, every patient has a story.
The average quality of life for ME/CFS patients is far below that of the general population.
Dr. Nancy Kilmas, an expert in immune disorders conducting ME/CFS research at Nova Southeastern University, has found that PTSD is more common in ME/CFS patients than in people with similar chronic conditions. “[T]heir trauma was their interaction with their physician around this illness,” she told the Miami Herald. “They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD.”
The Role Of The Media
Most news articles on ME/CFS fall into one of two categories;
- “Scientists Reveal People With ME/CFS Are Just Afraid Of Exercise” (These appear each time a new paper on CBT and GET is published); and
- “Have Scientists Finally Proven That ME/CFS Is A Real Disease?” (These appear each time a new biomedical discovery is made.)
No matter how many times scientists prove the “real disease” status of ME/CFS, the default continues to be disbelief. The same “Surprise! It’s real!” headlines have been appearing periodically for over 10 years.
In 2011, The Lancet published the PACE trial, a study designed to compare the effectiveness of four ME/CFS treatments. The results supported CBT and GET as (very) slightly more effective than the pacing and standard medical care generally preferred by patients. However, ME/CFS advocacy groups were quick to find damning flaws in the science; overbroad selection criteria, lack of inclusion of severely affected patients, lack of mechanism for reporting harms, and overlapping entry and “recovery” criteria. Detractors also noted that on the one objective measurement of recovery (the 6 minute walking test) the average GET recipient performed well under the cutoff for a lung transplant waiting list.
The hypersexualization of polyamory might be normalized — but it’s far from harmless.theestablishment.co
International media, however, reported uncritically on the trial, some greatly exaggerating the positive results with provocative headlines about the mental health of patients. It was at this point that the ME/CFS community exploded.
In the years leading to this trial, social media had changed the way people with ME/CFS were talking about their illness. The community had developed solidarity around the shared trauma of institutional gaslighting, and patients had become more literate in the biomedical science than most of the press (and most treating doctors). Widespread resentment toward Wessely, Sharpe, and their colleagues had built into a giant pile of kindling, just waiting for an event like PACE to light it up.
Those pushing a psychological model of ME/CFS were soon feeling the heat, and a new type of headline emerged: Chronic Fatigue Extremists Are Harassing Scientists!
The community had developed solidarity around the shared trauma of institutional gaslighting.
Having successfully framed ME/CFS patients as mentally ill for over two decades, the doctors found it relatively easy to convince the media that the patient revolt against their work was not an indictment, but simply more evidence of instability. Irate patients making personal threats (not something I condone) were conflated with patients trying to legally obtain PACE trial data for external re-evaluation. All dissent was suddenly characterized as abuse. Wessely achieved battling hero status, going so far as to (I’m not joking) claim he felt safer in Iraq and Afghanistan. He was awarded the John Maddox Prize for courage standing up for science in the face of “hostility,” and once again, patients were publicly discredited.
Three years on, the tide may be changing. People outside the ME/CFS community are finally giving PACE the critical eye. In October 2015, David Tuller, health blogger for the New York Times, published an expose, bringing the flaws of PACE to the attention of impartial experts who were generally staggered by the lack of scientific rigour. They called the study “a mass of uninterpretability” and “the height of clinical trial amateurism.”
There is now mounting pressure on the Lancet and Queen Mary University of London (who hosted the trial) from 41 expert scientists and clinicians, 29 Charities from 15 countries, and over 12,000 patients to release the PACE data for independent reanalysis.
Adding to the good news, the U.S. National Institute of Health is right now designing a new clinical trial “to explore the clinical and biological characteristics of ME/CFS.”
The last few decades have felt like a losing battle, but finally, we may be winning the war.