Three Cases of Severe ME/CFS in Adults

Abstract

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, only partially understood multi-system disease whose onset and severity vary widely. Symptoms include overwhelming fatigue, post-exertional malaise, sleep disruptions, gastrointestinal issues, headaches, orthostatic intolerance, cognitive impairment, etc. ME/CFS is a physiological disease with an onset often triggered by a viral or bacterial infection, and sometimes by toxins. Some patients have a mild case and are able to function nearly on a par with healthy individuals, while others are moderately ill and still others are severely, or even, very severely ill. The cohort of moderately to very severely ill is often housebound or bedbound, has lost employment or career, and has engaged in a long, and often futile, search for treatment and relief. Here, we present three case studies, one each of a moderately ill, a severely ill, and a very severely ill person, to demonstrate the complexity of the disease, the suffering of these patients, and what health care providers can do to help.

Lessons From Heat Stroke for Understanding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

“…Post-exertional malaise refers to an exacerbation of some or all of an individual's ME/CFS symptoms after physical or cognitive exertion, or orthostatic stress that leads to a reduction in functional ability. The severity of the symptoms varies, where “very severely affected patients experience profound weakness, almost constant pain, severe limitations to physical and mental activity, sensory hypersensitivity (light, touch, sound, smell, and certain foods), and hypersensitivity to medications” ( 14 , 15 ). The illness can be completely incapacitating ( 16 ) and “at least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives” ( 12 ).…”

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: the biology of a neglected disease

“…Despite there being no U.S. Food and Drug Administration (FDA)-approved treatments for ME/CFS ( 40 ), in many cases the symptoms and comorbidities experienced by patients can be treated ( 24 ). However, it is important that any medication should be introduced at low dosages as many ME/CFS patients are extremely drug sensitive ( 23 ), making them vulnerable to adverse side effects.…”

“…ME/CFS is a remarkably misunderstood disease, and many patients have experienced judgement, prejudice, and disbelief from healthcare professionals ( 11 , 39 ) as some refuse to view ME/CFS as an indisputable clinical entity ( 39 ) and question its legitimacy ( 25 ). This disbelief and misjudgment ( 40 , 58 ) delays any possible early diagnosis for the patients and has also resulted in psychologisation of the disease ( 11 , 40 , 53 ). Health and social care professionals need to acknowledge that their patients are living with ME/CFS, and how they have symptoms that severely affect them ( 11 ).…”

“…These individuals are usually completely dependent on others for care, require tube feeding, are unable to complete personal hygiene, and are highly sensitive to sensory stimuli ( 11 ). ME/CFS has been described as a fluctuating condition as symptoms change in nature and severity sporadically ( 40 ). 61% of patients have reported being bedbound on their worst days ( 41 ) and at least one-quarter of ME/CFS patients have recounted being housebound or bedbound at some point in their lives ( 2 ).…”

Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

“…This is especially challenging for severe and very severe patients because they are typically not seen in doctors' offices. For their part, clinicians may not have seen this level of debility and may not recognize or believe in the disease [8][9][10].…”