WHAT IS ME/CFS?
DEFINING A COMPLICATED AND MISUNDERSTOOD DISEASE
ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a complex chronic multisystem disease that affects an upwards of 2.5 million people in the United States and as many as 20,000,000 people around the world. Because it’s been neglected for so long in every recognizable country, what is known about the illness is just emerging. Research in the United States, the UK, Europe, and Canada has strongly suggested the disease has a powerful, as-yet undiscovered abnormal immune component.
Other body systems such as the neurological, the central nervous system, musculoskeletal, metabolic, and the endocrine system contribute to the dysfunction. How these systems tie into the disease process is not yet entirely known but each is implicated in the cause of specific symptoms. This hodgepodge of symptoms can make it easy for people to believe the treatment of one or more of these symptoms is a curative process. However, the contribution of these different body systems combined with post-exertional malaise (explained in another section of this website) renders most people unable to return to their pre-illness level of activities.
The disease typically emerges after a viral illness. In many cases this is something as simple as a series of cold or flu infections, Epstein Barr virus infection (mononucleosis), fever, bacterial infection. Much less often, physical traumas like a car accident, surgery, or even pregnancy have also been known to trigger the condition. A person will experience symptoms of these infections or the physical effects of such event, but the symptoms of the disease or effects of the event will never entirely pass. They will instead experience extreme exhaustion, flu-like symptoms, deep muscle pain, disturbed sleep, cognitive impairment, orthostatic intolerance such as postural orthostatic tachycardia syndrome (POTS - rapid heartbeat with dizziness and/or fainting upon standing) and exacerbation of these symptoms after any kind of physical or mental activity known as post-exertional malaise or post-exertional symptom exacerbation (PEM/PESE) that will continue in perpetuity.
These symptoms are the most common; however, there have been numerous additional symptoms that have been documented, including light and sound sensitivity, extreme headaches, sore throat, swollen lymph nodes, nausea, vertigo, difficulty or inability to speak, tinnitus, chemical sensitivity and others. The seemingly endless string of symptoms, as well as their onset associated with a physically traumatic stressor has led to the stereotype this is a psychosomatic illness. However, a consensus of the emerging data indicates that there is an as-yet not-understood abnormal immune process and a disruption of the body’s metabolic pathways that cripples its capacity to produce energy. Impaired use of oxygen in the muscles (called muscular respiration or oxygenated phosphorylation also known as aerobic energy production) accompanied by impeded muscle perfusion and blood circulation appears to be the culprit behind this diminished energy capacity.
Some form or function of this, impeding the ability for the mitochondria to produce energy in the muscles in the presence of oxygen, appears to be the main impetus behind exertional intolerance. The myriad of unusual and varied sensory, balance, and gastrointestinal symptoms have been tied to the neurological, endocrine, and CNS systems. Brain studies including MRI and PET scans have also shown inflammation and other abnormalities. Moreover, the same crippled energy processes that result in extreme exhaustion and musculoskeletal issues also contributes to the development and maintenance of post-exertional malaise (PEM), as the exertion that leads to the development of PEM worsens the illness and gives rise to the exacerbated symptoms. Given this wealth of emerging data, it has been postulated that a virus can push the body into a state of an as-yet undefined malfunction in people with a genetic vulnerability to the disease. Therefore, ME/CFS symptoms are the presentations of a biologically based medical illness for which we have no current core treatments and for which we are desperately in need of larger scale research. Links supporting the above are located on the Medical Evidence for ME/CFS page.
ME/CFS typically on-sets between the ages of 20 and 45; however, children and adolescents have also been diagnosed. Out of these age groups children, adolescents, and adults in their 20s have shown an ability to recover, along with a quarter to perhaps third of those involved in outbreaks (called acute or epidemic myalgic encephalomyelitis) but these make up a relative minority of people who develop ME/CFS. Most people with ME/CFS are chronically ill or become so severely afflicted they are debilitated. It has been suggested in studies that treatment of symptoms and diagnosis shortly after onset can disrupt the disease process and result in better outcomes.
Unfortunately, woeful medical awareness and lack of diagnosis with available supportive care renders this to be a rare situation to be very uncommon. Because so little is still known about the illness and there are no universal biomarkers or lab tests, diagnosis of ME/CFS remains a process of exclusion. Patients often wander through the medical system for years drifting from physician to physician, specialty to specialty, being cast off by doctors and medical staff alike while they undergo repeated testing of all kinds that turn up nothing and attempted treatments that lead to little or no sustained improvement. Moreover, the typical treatment approaches by most physicians and physical therapists is increased exercise, which worsens the individual and destroys any ability to successfully manage the illness. After years of this treatment and worsening, many patients are led to a discovery of ME/CFS by word of mouth or through Internet searches and may seek out a practitioner that may have at least some experience in dealing with it.
They may even receive a diagnosis from a psychiatrist or an alternative medicine specialist. Even in these situations, the patient is left mostly on their own and may simply continue to receive inadequate care. The best treatment for ME/CFS remains symptomatic management using a technique called adaptive pacing, whereby the patient engages only in activities as tolerated, careful not overcome their daily energy threshold. This is accompanied by relief of the most distressing symptoms using pharmacological interventions and supplements.
Several antidepressants, stimulants, and anti-epileptic drugs (amitriptyline, SSRIs, gabapentin and pregablin) have been helpful for sleep, energy, and pain issues. Other drugs and supplements may treat the numerous other accompanying symptoms but in many cases even when using medications that have shown promise with a subset of people, it rarely is effective for another subset of people, and is a touchy process due to the fact that most people with ME/CFS can be extremely sensitive to chemicals, so they are best tolerated in very low doses and medications that work well for some may be rejected by many others.
Most people with ME/CFS, diagnosed or undiagnosed, tend to be unable to regularly exercise, participate in social activities, hold down a job, and will struggle to feed themselves or carry out activities of daily living. Additionally, at least one out of every four or 25% of the ME/CFS population is either housebound or bedbound. Those who are bedbound typically are unable to feed or care for themselves and in the most debilitating cases live in complete darkness with virtually no emotional, social, or physical stimulation, are blindfolded and/or have ear plugs, can’t speak, and may tolerate only brief visits with physicians, caretakers, and loved ones. It is not uncommon for them to be on supplemental oxygen and fed by gastric tube and there are instances where ME/CFS deaths have been confirmed by a coroner, attributed to a failure to thrive from malnutrition.
For the many others who are not as debilitated, the utter lack of education, understanding, tolerance, and awareness of the existence of this disease renders them completely isolated and abandoned by families, friends, employers, physicians, spouses, and other human support systems. These people struggle to survive, engaging in extensive court battles to get on Disability after being rejected several times by an outright cruel system that is predisposed to weeding people out of the process. It is not uncommon for these people to be derided, told they are lazy, told their illness is “all in their head”, ignored by people who have the ability to help them, and to be treated hostilely by physicians, physical therapists, psychological therapists, neighbors, landlords, civic leaders, and other people who come in contact with them.
The world paradigms that focus so intently on exercise solving everything in every medical situation will drive many of these individuals to attempt physical activity their bodies are not capable of, resulting in severe crashes and a worsening of their symptoms, their feelings of failure, and to being further ostracized and misunderstood by the same people who advised them in the first place. This wanton prejudice, bigotry, and unjustified treatment turns them into lepers, tragically resulting in a disproportionately high number of suicides. This website is my small attempt stop the bleeding, the injustice, misunderstanding, excuses, and the neglect. Please continue reading.
Copyright 2024 Scott Schneider Productions - all text written and maintained by Scott Schneider.
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