Author: jharri28

Chronic Fatigue Syndrome and Its Ever Present Issues

Introduction

Contested illnesses inflict untold burdens on their sufferers. These burdens are not simply manifested in the physiological or psychological implications that are typical of disease. These illnesses vastly impact the social and interpersonal lives of their sufferers. From six years of firsthand experiences, watching my brother battle with his own contested illness, I know how these struggles can lead to distrust, confusion, and even animosity between loved ones. Often these issues arise from misunderstandings and incomplete knowledge of the condition, a facet that is at the heart of the “contested” nature of these diseases. These personal experiences my family and I have had, have caused us to make a point of understanding and explaining the true nature of these afflictions from both objective and empathetic perspectives. 

John’s Story

When my brother was going into his junior year of college, he decided to end his college baseball career and transfer back to our hometown college. Around this time he was having a series of strange symptoms come and go. Mainly, he was suffering from migraines and blurred vision. At the time he chalked this up to the stress of his new transition and a bad eyeglass prescription. Throughout the next five years, he struggled with receiving a lasting diagnosis as well as a constant increase in symptom presence and intensity. Eventually, after spending five weeks at the Mayo Clinic, John was able to finally receive the diagnosis that he was expecting, Chronic Fatigue Syndrome. As we discussed in class, this diagnosis came with mixed emotions. While being diagnosed with a contested illness may come with uncertainties and fear, this was the first time that he felt that he knew what was happening to him and he felt a sense of belonging and relief. 

Having a brother experience this was hard, not just for him but for all of our family. We saw someone transition from a college athlete to being functionally disabled at times. Throughout the diagnosis process, there were times when our family and loved ones questioned his status and even his symptoms. This caused social and interpersonal strain throughout our extended family. To this day, he still faces others questioning his illness and doctors disagreeing with his diagnosis. Furthermore, this illness has burdened my mother financially as she now supports her son financially and often fills the role of unpaid caregiver.

Issues in CFS Care

Seeing this process from a closer and more personal vantage point has allowed me to see some of the issues that exist within the treatment of Chronic Fatigue Syndrome; paired with the readings from class and further outside research, I feel that I have gained a more rounded perspective on this topic. One issue that I quickly noted was the fragmentation of medical care. With specialists occupying 66% of United States doctors [1], holistic care for systemic issues becomes unattainable. In search of a diagnosis, John went to ophthalmologists, neurologists, immunologists, orthodontists, endocrinologists, and many more specialists. Each offered their own theory that fell into their category of expertise. It wasn’t until he underwent long-term testing under the supervision of multiple practitioners at the Mayo Clinic that he was officially diagnosed. According to the CDC, an estimated 836,000 to 2.5 million Americans suffer from Chronic Fatigue Syndrome [4]. With estimates this large, the current model of fragmentation of care is not sustainable. Under models of incremental care, such as that of Dr. Loder from, “The Heroism of Incremental Care” [5], patients would not need to be passed around between dozens of specialists. Rather, primary care providers could work with patients to note minute changes in their symptomology and address diagnoses and further visits from a more holistic view. 

Between 836,000 and 2.5 million Americans have been estimated to have ME/CFS

CDC

A second issue that is ever present with Chronic Fatigue Syndrome is the inconsistency of therapy. Some sources, such as the CDC, focus more on short-term symptom palliation while others attempt to reduce the intensity of all symptoms on a long-term scale [8]. One example of the latter is what is known as graded exercise therapy (GET). David Scales quickly mentions this as a point of contention in Chronic Fatigue communities [6]. This program aims to slowly build up strength and condition the patients through incremental exercise regimens. However, this type of therapy can worsen the post-exertional malaise symptom of these patients and potentially be deleterious to their intended goals. Furthermore, this therapy is founded on a flawed study with improper design and poor data [7]. Even with this knowledge, GET is still widely applied. However, it seems that the tides are turning on this practice and the Mayo Clinic reversed its stance on GET, removing it from their regimen in 2021 [2]. 

Source: LaraPhysiotherapy

One final issue that was at the heart of much of my brother’s pain was the disbelief tied into this condition. As a contested illness, it inherently comes with doubts and debates as to the symptomatology, etiology, prognosis, etc. but the one aspect that needs to be believed is the patient’s pain and suffering. Too often he (and many like him) was told that his symptoms were in his head, or that he needed to work harder to get through it. Just as Boodman points out with fibromyalgia patients, the disbelief from medical professionals is nothing short of “medical gaslighting” and does nothing further perpetuate their patients’ pains [3].

Conclusion

While my unique perspective has allowed me to view this condition and others like it with a particular air of empathy, I also understand that it has made me biased toward the situation. I try to view evidence from a more objective lens and view patient experiences from a more empathetic lens, though this does not breed the best level of research. However, I believe that my circumstances have given me the drive to look further into this condition and examine what areas need to be fixed. These experiences have been foundational to my desire to pursue medicine, and I hope that I carry this zeal toward all aspects of my professional career.

Sources

[1] “Active Physicians with a U.S. Doctor of Medicine (U.S. MD) Degree by Specialty, 2019.” AAMC, Dec. 2019, https://www.aamc.org/data-reports/workforce/data/active-physicians-us-doctor-medicine-us-md-degree-specialty-2019.

[2] Bateman, Lucinda, and et. al. “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management.” Mayo Clinic Proceedings, U.S. National Library of Medicine, 25 Aug. 2021, https://pubmed.ncbi.nlm.nih.gov/34454716/.

[3] Boodman, Eric. “In a Sea of Skeptics, This Physician Was One of Fibromyalgia Patients’ Few True Allies. or Was He?” STAT, 27 Oct. 2021, https://www.statnews.com/2021/10/20/selling-certainty-epicgenetics-physician-was-one-of-fibromyalgia-patients-few-true-allies-or-was-he/.

[4] “Epidemiology.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 21 Apr. 2021, https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/epidemiology.html#:~:text=Some%20important%20facts%20include%3A,diagnosis%20from%20a%20healthcare%20provider.

[5] Gawande, Atul. “The Heroism of Incremental Care.” The New Yorker, The New Yorker, 16 Jan. 2017, https://www.newyorker.com/magazine/2017/01/23/the-heroism-of-incremental-care.

[6] Scales, David. “What I’ve Learned Reporting about Lyme Disease, a Contested Illness.” Columbia Journalism Review, Columbia Journalism Review, 18 Dec. 2018, https://www.cjr.org/analysis/lyme-disease-contested-illness-empathy.php.

[7] Simon, Stephanie. “Bad Science Misled Millions with Chronic Fatigue Syndrome. Here’s How We Fought Back.” STAT, 29 Dec. 2016, https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/.

[8] “Treatment of ME/CFS.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 28 Jan. 2021, https://www.cdc.gov/me-cfs/treatment/index.html#:~:text=Some%20people%20with%20ME%2FCFS%20might%20benefit%20from%20trying%20techniques,a%20sense%20of%20well%2Dbeing. 

Medicalization of Women’s Health

Introduction

Obstetric medicine has always been fascinating to me. However, while trends and data can be noted by anyone, the processes discussed can only truly be experienced by women. As such, it can be complicated and sometimes disingenuous to speak about, as a man. Because of this, I will largely rely on articles and experiences shared by loved ones (each of whom consented to share their story).

Medicalization of Childbirth

Reproduction and childbirth are aspects so ingrained in the human experience. Many of us have already faced questions such as; do you want children? how many children do you want? etc. For an aspect of human life that seems so joyful and exciting, it can also be one of the scariest. This is especially true when it comes to women encountering childbirth. A 2018 study, researching the prevalence of tokophobia (the fear of childbirth) among pregnant women, found that 75% of respondents were classified in the low to moderate range while up to 25% of respondents were classified in the high to very high range of tokophobia [1]. As obstetric medicine has advanced, the context and setting of childbirth have continually evolved. What was once set in homes or birthing centers has moved to hospitals and operating rooms. The rise in the medicalization of childbirth arose concurrently with this change. The California Health Care Foundation cite the following statistics; 68% of women with vaginal births were given an epidural, 31% of women had a c-section, 85% of women with previous c-sections had a repeat c-section, and 14% of women had labor induced for non-evidence based reasons [2]. These numbers show the prevalence of medical intervention in the process of childbirth. 

“Fear of childbirth, also known as tokophobia or maieusiophobia, has been defined as a psychological disorder which ranges from insignificant to extreme fear of childbirth”

Demšar et al. [1]

According to a 2002 article in the British Medical Journal, the medicalization of childbirth has grown into interventions that are often unnecessary or not evidence-based [3]. This increased medicalization of childbirth paired with the predominance of hospital births likely affects the aforementioned high levels of tokophobia. While it may seem natural to fear a major event such as childbirth, it must be noted that increased fear of childbirth may correlate to increased levels of c-sections [4]. Furthermore, maternal anxiety can increase the likelihood of delivery complications (such as placental abruption) and congenital anomalies as seen with prenatal stress disorder.

While it may seem that these interventions are a negative and a medical overreach, it is necessary to understand the importance that these interventions can have. The example I often turn to when explaining my interest in obstetric care is the story of my birth. Just before my birth, my older brother found my mother (pregnant with me) semi-conscious laying on her bed, her sheets soaked in blood. She was rushed to the hospital where she underwent a premature emergency c-section. Throughout the night we were both in critical condition. Thankfully we both survived, and she was later told that she suffered from a uterine hemorrhage. Without the remarkable advancements in obstetric medical techniques and equipment, it is likely that neither of us would have survived. 

In the same way that a series of statistics cannot completely explain the state of medicalized childbirth, neither can one success story. This is a complicated issue that is not black or white. It is important to recognize and utilize the tools that have allowed us to decrease infant and maternal mortality. However, it must be noted when these tools are used inappropriately. Whether it comes in the form of ignoring preconceived birthing plans or improper informed consent processes, the increased medicalization of childbirth has whittled away at women’s decision-making capacities. Medical interventions need to be balanced and contained to allow for the highest level of care and comfort in the process of childbirth. 

PCOS and Simplistic Medicine

Another over medicalized area of women’s health is menstruation. One area of this that has been particularly impactful to me is polycystic ovary syndrome (PCOS). This is a hormonal disorder in which the ovary accumulates cysts and becomes enlarged. Some symptoms include; irregular periods, excess body hair, weight gain and retention, and infertility [5]. According to the CDC, up to 5 million women experience PCOS [6]. 

“PCOS is one of the most common causes of female infertility, affecting 6% to 12% (as many as 5 million) of US women of reproductive age.”

Centers for Disease Control and Prevention [6]

The reason PCOS is important to me is because of how it has impacted my family. My sister was recently diagnosed with PCOS. However, her path to diagnosis was anything but direct. After experiencing constant menstruation for over a month, she went to her doctor. She described the meeting as short and dismissive. She was given two options; start an oral contraceptive or lose weight. Several months and multiple doctors later, she was being given the same answers. She believed she had PCOS and feared birth control would mask the irregular menstruation symptom, impeding any further diagnosis. Furthermore, the only other option was to lose weight; misconstruing a symptom for a cause. 

She eventually received the PCOS diagnosis, but this was not before several months of discomfort, embarrassment, and dismissal from her doctors. The Martin article discussed how the language around menstruation is often that of dysfunction or degradation [7]. However, in a typical menstruation cycle, those negative connotations can at least be partially ameliorated by connotations of regrowth, but not for my sister. She lived in that state, so often negatively connoted, for months without cessation. Her experience was one of lack of access, treatment, and dialogue, and of increased simplistic medicalization. Her two options were to accept blame for her state and “lose weight” or to accept the medicalized option of oral contraceptives.

Conclusion

While these are two snapshots of the medicalized state of women’s health, they are far from comprehensive. A more holistic view must examine the cause of these issues and where they overlap. Though a disorder like PCOS and medicalized childbirth may seem very different at the surface level, they share a lack of communication and a reduction in the voice of those affected. Just as pregnant mothers have fewer options so too do women suffering from disorders like PCOS have their choices minimalized; both favoring the simplest medicalized paths.

References

[1] Demšar, Karin, et al. “Tokophobia (Fear of Childbirth): Prevalence and Risk Factors.” Journal of Perinatal Medicine, vol. 46, no. 2, 2018, pp. 151–154., https://doi.org/10.1515/jpm-2016-0282.

[2] “Infographic: The Overmedicalization of Childbirth.” California Health Care Foundation, California Health Care Foundation, 21 Aug. 2019, https://www.chcf.org/publication/infographic-overmedicalization-childbirth/#related-links-and-downloads.

[3] Johanson, R. “Has the Medicalisation of Childbirth Gone Too Far?” BMJ, vol. 324, no. 7342, 2002, pp. 892–895., https://doi.org/10.1136/bmj.324.7342.892.

[4] Ryding, Elsa Lena, et al. “Fear of Childbirth during Pregnancy May Increase the Risk of Emergency Cesarean Section.” Acta Obstetricia Et Gynecologica Scandinavica, vol. 77, no. 5, 1998, pp. 542–547., https://doi.org/10.1034/j.1600-0412.1998.770512.x.

[5] “Polycystic Ovary Syndrome (PCOS).” Polycystic Ovary Syndrome (PCOS) | Johns Hopkins Medicine, Johns Hopkins Medicine, 28 Feb. 2022, https://www.hopkinsmedicine.org/health/conditions-and-diseases/polycystic-ovary-syndrome-pcos.

[6] “PCOS (Polycystic Ovary Syndrome) and Diabetes.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 30 Dec. 2022, https://www.cdc.gov/diabetes/basics/pcos.html#:~:text=What%20is%20PCOS%3F,US%20women%20of%20reproductive%20age.

[7] Martin, Emily. “Medical Metaphors of Women’s Bodies: Menstruation and Menopause.” International Journal of Health Services, vol. 18, no. 2, 1988, pp. 237–254., https://doi.org/10.2190/x1a6-jaqb-vm9n-ulcy.