Recently, a popular scientific Facebook page posted an article regarding Chronic Fatigue Syndrome and included the following open question for their “fans” to respond to: “What do you think is behind chronic fatigue syndrome?” It is the practice of this page to post a corresponding question along with an article, however, this question offered an opportunity for downright rude and overtly disrespectful people to insult, attack, and offend those suffering from Chronic Fatigue Syndrome, as well as those suffering from the multitude of disorders that remain improperly defined by the medical community. The question garnered the following incredibly ignorant responses and, as a note, I have not corrected the language or spelling in the posts: “Whinners,” “lazy fat asses,” “weak minds……,” “I think it’s just called Dead Dog Lazy,” and “the stress of living in today’s society of people who want everything yesterday and still whine that nothing is ever good enough.” Wow. Really? I suppose that these same people would make similar comments regarding those suffering with cancer? I think not. I dare to say that the Facebook page would have found it tasteless to ask their “fans” to guess about the cause of cancer, allowing cancer patients to be dismissed and worse by people who, quite obviously, have no compassion. I need to point out here that 100% of the rude comments were posted by men (of course not all men were rude). Not surprising, though, since our society has a difficult time accepting medical conditions considered “women’s” issues, more difficult still, those fraught with misunderstanding and misinformation.
Far from laziness, “Chronic Fatigue Syndrome Myalgic Encephalopathy (CFS/ME) is a serious, disabling and chronic neuro-immune illness…characterized by debilitating fatigue (exhaustion and extremely poor stamina), neurological problems and a variety of flu-like symptoms. [1] The true cause of Chronic Fatigue Syndrome remains undetermined at this time. “Patients with CFS/ME report critical reductions in levels of physical activity with impairment comparable to other fatiguing medical conditions such as Multiple Sclerosis (MS), late-stage AIDS, Lupus, Rheumatoid Arthritis (RA), heart disease, end-stage renal disease, Chronic Obstructive Pulmonary Disease (COPD), [and] effects of chemotherapy. [2] As is the case with chronic pain disorders, Chronic Fatigue Syndrome is far from just a women’s problem. Although it occurs four times as frequently in women, it affects approximately one million people in the United States, 17 million people worldwide. In the case of Temporomandibular Joint Disorders (aka TMJD, TMJ and TMD), of the 35 million TMD sufferers in the United States, “the ratio of women to men increases with the severity of symptoms, approaching 9 to 1 for patient with major limitations in jaw movements and chronic, unrelenting pain. [3] We cannot remain blind to the obvious gender bias considering that an estimated 50 million women in the United States suffer from one or more of the chronic pain disorders that are neglected by our medical community. For the majority, our health care system offers frustratingly little help. In fact, most face neglect, dismissal and discrimination.” [4]
“Women suffering from these pain conditions experience profound stigma as a result of the government’s inadequate research efforts, medical professionals’ lack of knowledge, society’s lack of awareness and gender communication differences. As one social scientist noted, ‘these illnesses are shrouded in great uncertainty, which can enhance their stigmatization potential.’” [5] Studies show that physicians demonstrate the lowest confidence in the diagnosis of “women’s” medical conditions and those suffering from chronic pain conditions are commonly informed that they don’t have any disease or that they have a psychiatric condition. Since most people with chronic pain disorders are women, this exaggerates the already present stigma and deepens the bias against women. “One study of women with [Chronic Fatigue Disorder and Fibromyalgia] showed that they experienced stigma from both health care professionals and those in their social network. ‘Fibromyalgia in particular can be classified by other people as a women’s complaint, which may be deprecatory. CFS is perceived as more dubious by the women themselves, their social surroundings, and their caregivers,’ adding to the feelings of stigmatization.” [6] Another study of women suffering from Chronic Fatigue Disorder and Fibromyalgia highlighted that physicians’ inability to “see” visible symptoms and the fact that symptoms varied over time was a direct cause in the physicians’ suspicion that their patients had no medical condition. “Absence of visible external signs of the illness contributed to [the patients’ reports] being called into question, and many believed that evident external symptoms would have enhanced their credibility.” [7]
The following points highlight “discrimination in the medical care of women with chronic pain.”
Women report pain that is more frequent, more severe and of longer duration than men, but are nonetheless treated for pain less aggressively;
Compared to men, health care professionals often take women’s pain reports less seriously;
Medical professionals are more likely to dismiss women’s pain reports as “emotional, psychogenic, hysterical or oversensitive” and therefore “not real,” leading to more frequent mental health diagnoses rather than providing appropriate pain care;
Chronic pain research, particularly that focused on conditions that solely or predominantly affect women, is grossly underfunded and inefficiently coordinated by the federal government;
Doctors and other health care providers receive little or no training on pain management or pain conditions that solely or predominantly affect women;
The basic mechanisms and efficacy of treatments prescribed for these chronic pain conditions are poorly understood;
Medical professionals lack the knowledge and proper training necessary to appropriately diagnose and treat these pain disorders;
Clinicians lack evidence-based data on which to base treatment recommendations. [8]
“Insufficient research efforts, coupled with the lack of education and training on chronic pain mechanisms and syndromes, leaves health care professionals ill-equipped to appropriately serve pain sufferers. Further, our health care system is ‘compartmentalized’ by specialties, which is not conducive to comprehensive chronic pain assessment; for example, a woman might consult a clinician with expertise in the area of the body where she experiences pain, but that specialist likely lacks an appropriate understanding of chronic idiopathic pain.” [9] "When a woman has 'idiopathic' pain, pain from an unknown cause, these 'organ-specific' physicians are certainly not the proper chronic pain managers, considering that chronic pain is more likely a dysfunction of the central nervous system. Who then, should manage the care of those suffering from chronic pain? Today, no appropriate 'medical home' for women with these conditions exists, and this is particularly true if they suffer from more than one of these disorders.” [10]
"Those afflicted are routinely shuffled from doctor to doctor before a diagnosis is made, each time incurring substantial costs. Women are often inappropriately treated and left to experiment with a multitude of therapies, most with unknown benefits. As a result, it often takes months/years and multiple expensive consultations for a woman suffering from one or more of these disorders to obtain an accurate diagnosis and initiate treatment that helps to relieve some of her painful symptoms.” [11] It is very common for chronic pain conditions to overlap or coexist, so people wind up suffering from two, three or even more conditions, some developing an additional condition after years of suffering from the initial condition(s) and some developing pain conditions simultaneously. This overlap of conditions, then, increases the potential for initial and subsequent misdiagnoses, hinders the management of correctly diagnosed conditions, and establishes a cycle of medical specialist visits leading to unnecessary prescription drugs and additional stigma opportunities when symptoms do not fit into the specialists’ typical diagnosis box.
"For those with TMJ disorders, it takes an average of four years from symptom onset to diagnosis. Over 50 treatment modalities, a remarkable array of medications, and a number of various surgical procedures are in the TMJ treatment armamentarium." [12] "One reason that treatment can be so difficult is the chronic pain associated with TMJD results from a highly complex biological interplay. The interplay involves myriad factors, ranging from the intricacies of pain transmission and its possible rewiring and overamplification en route to the brain to the complicating and frequent presence of other painful conditions, such as fibromyalgia and chronic fatigue, which mask or modify the symptoms of the TMJD." [13] "Arguments continue regarding the issues of whether TMJ treatments should be categorized as dental, medical, or even cosmetic. Because most insurance companies have not established targeted criteria-based benefits for TMJ problems, patients are not protected or are denied rightful coverage." [14] "The most jaw surgeries performed on one person (from the TMJ Association database) were 62 and the patient died at the age of 41. A most cited 1992 study estimated the annual cost of TMJ treatments to be $32 billion." [15]
“Despite over a decade of repeated Congressional requests to significantly increase research dollars allocated to these disorders, in 2010, NIH spent just $64 million on all of them combined – about two-tenths of one percent of its total budget. This is an average of just $1.36 for every affected woman and represents less than one-tenth of one percent of the annual estimated costs of these conditions. In fact…no pain condition ranks in the top 50 research/disease areas funded by the NIH. Funding for all chronic pain conditions combined barely makes the top 70, ranking 68th in research areas funded over the past several years. In addition, chronic pain is as prevalent as cancer, heart disease and diabetes combined, yet the NIH spends 96% less on chronic pain research.” [16]
Insufficient knowledge from the absence of research of chronic pain conditions is expensive, wasteful and ineffective, needlessly burdening patients, insurance companies and society. A dramatic reduction in this healthcare burden could be realized through a systematic approach to diagnostic tests and treatments for chronic pain. “If women suffering from conditions with well-established diagnostic and treatment guidelines such as cardiovascular disease experience such neglect and discrimination, consider what women who suffer from chronic pain syndromes, for which diagnostic and treatments guidelines have not been widely established, experience in their quest for appropriate diagnosis and treatment. Their reality is shockingly dismal.” [17]
2. Ibid
4. http://www.endwomenspain.org/sites/default/files/WIP%202011%20Report%20FINAL.pdf
5-12. Ibid
13. http://www.nidcr.nih.gov/Research/ResearchResults/NewsReleases/PressStatements/Chronic
TMJD.htm
15. see 4
16. Ibid
17. Ibid
