When ME/CFS symptoms were first described in the late 1600s by Thomas Syndenham (muscular rheumatism) and documented as neurasthenia in late 1800s, there was nothing in the literature to support a defining characteristic of the illness. However, in the mid-1950s, a doctor named A Melvin Ramsey, an infectious disease specialist at the Royal Free Hospital in London, began studying outbreaks resembling polio that he and his colleagues called encephalomyelitis. As they continued to mull over the data and refine the characteristics in the late 1950s, they expanded the term to benign myalgic encephalomyelitis, and Ramsey discovered the characteristics of post-exertional malaise. He presented it as the distinguishing symptom of ME (after benign was dropped), and the research was included in the 1962 Diseases of the Nervous System 6th Edition and used by the World Health Organization to incorporate ME as a disease in 1969. The medical community largely ignored the Who definition and Ramsey's work, deciding instead to listen to two psychiatrists who in 1970 stated ME was an illness of psychological origin. Understanding of ME and of post-exertional malaise was lost to history until most recently when researchers finally started listening to the reports of patients and other tests have been conducted (please see HISTORY OF ME/CFS PAGE). A clearly distinguishing symptom, post-exertional malaise, is the exacerbation of ME/CFS symptoms and increased exhaustion related to any kind of physical and/or mental activity that is undertaken by a person who exhibits signs of the illness. This is often described by the individual with ME/CFS as a “post-exertional crash”. Very recent corroborated research, largely by the Workwell Foundation, indicates that post-exertional malaise occurs in three different phases (informational links below): immediate, short-term, and long-term. Each phase generally is associated with increased duration and intensity.
IMMEDIATE: Tends to be a drain of energy and exaggeration of symptoms associated with or immediately after activity. In many cases this will occur as increased exhaustion, rapid heartbeat, labored breathing/shortness of breath, muscle pain, nausea, vertigo, dizziness, light sensitivity, decreased ability to process thinking (brain fog/cognitive impairment). It usually signals a person with ME/CFS has the need to sit down and if they are already sitting down, the need to stop the activities they are involving themselves in. Once the activities cease, the post-exertional malaise tends to decrease and energy and symptom levels go back to baseline. If most people can learn to cut off the offending activities as soon as or shortly after the onset of immediate PEM, they can more consistently function at their own baseline illness level and will generally tend to keep the duration of any flare-ups of PEM to a day or less.
SHORT-TERM: If a person continues with activities well after the onset of immediate post-exertional malaise, the resulting energy depletion will tend to create the onset of a more intense and more functionally-limiting type of post-exertional malaise that can last for two to five days. The onset of this post-exertional malaise or PEM does not usually tend to occur right after the over-exertional event. Onset usually begins 12 to 48 hours afterward. Much worse than immediate PEM, a person with short-term PEM will generally tend to experience heightened and persistent exhaustion, muscle pain, flu-like symptoms, and an increase in other associated ME/CFS symptoms such as vertigo, dizziness, light sensitivity, and insomnia. This is due to the poor energy recovery, as the body is unable replenish its oxygen levels and the domino effect of further restricted bodily function ensues. The obvious effects of this depletion and lack of functioning puts an incredible collective stress on the body leading to the prolonged exacerbation of baseline ME/CFS symptoms that is well beyond what is experienced in the immediate PEM phase. Because of the body's compromised energy production, along with its inability to maintain proper oxygen blood levels, this PEM can take much longer to recover compared to a person’s normal compromised functioning with ME/CFS. The two to five days is typically how long it takes the body to replenish its oxygen levels to the point that it can function back to one’s illness baseline.
LONG-TERM: If a person continues to repeat the over-exertional activities that are involved in the exacerbation of immediate and short-term PEM, they will find themselves most likely having their oxygen levels depleted so badly that they will enter into a long-term state of PEM that can last weeks to months and in most severe cases can be completely debilitating. In the least, long-term PEM tends to last 5 to 7 days or more and result from the continuing exacerbation of short-term PEM. As the effects of short-term PEM continue to be multiplied by episodes of overexertion and further energy depletion, the intensity of the PEM and the symptoms associated with it will continue to spiral into an all-body shutdown that may be extremely recalcitrant and difficult for a person to retrieve themselves from as it may take numerous days of rest and complete inactivity to recover from the overwrought energy levels. In this state, the energy depletion is so complete that the immune system is compromised, digestion can be greatly affected, blood perfusion and circulation are restricted, muscles are inflamed, the CNS is extremely stressed leading to severe insomnia, tinnitus, and light and hearing sensitivities. Because the body has become so energy depleted, being very deep into this level of PEM can be dangerous as the body systems have become so stressed that even the tiniest amount of activity can continue to maintain the state of long-term PEM and can lead to the most catastrophic cases of ME/CFS.
These categories, of course, are general guidelines as PEM can be a complex thing. The intensity of the PEM varies with the intensity of the activities that precede it, the severity of the individual’s level of ME/CFS, the amount of time spent in that set of activities, and the threshold in which that individual exceeds the body's ability to produce energy, which is a root aspect of the illness. In a number of instances people with long-term PEM are somewhat able to participate in a few, daily activities but continue to exacerbate the PEM by participating in a push-crash cycle whereby they inadvertently use any respite from the long-term PEM to engage in any large range of overexerting activities that cause them to plunge back into the long-term PEM again. In other instances, the long-term PEM symptoms become the baseline. In the most severe cases the act of drinking water, turning over in bed, and the whispering of another person in the room can be enough to set off post-exertional malaise and maintain long-term PEM. Variabilities aside, sadly, the lack of education, understanding of what ME/CFS is, what it does to the body, and in particular the effects of the core symptom of PEM along with any guidance from clinicians may lead many people with ME/CFS to unknowingly engage in too much over-exertional activity on either a daily or cyclical basis, constantly putting themselves at the mercy of a push-crash cycle that compromises their already depleted and crippled functional baseline.
Because the phenomenon has been associated with a major disruption in the body’s metabolic pathways on a molecular level, interfering with mitochondrial functioning in the musculoskeletal systems as - noted above - the effects of post-exertional malaise are destructive. The impaired mitochondrial functioning has been tied to poor blood oxygenation and muscle perfusion. The result of these metabolic disruptions, poor blood oxygenation to the muscles, and the subsequently impaired mitochondrial output, post-exertional malaise is what makes ME/CFS the devastating illness that it is. There is no other disease process that is associated with this kind of broken energy system. In the most debilitating cases, the body has almost no ability to produce sustainable energy, causing that person to be bed-bound and living in darkness for 24 hours a day. In mild cases, a person may be able to recover from these post-exertional crashes in a daily fashion and may be capable of sustaining far more activity with considerably less symptoms and suffering. They may also be able to engage in a very light exercise program and even recover some prior stamina if they don't overdo it. This can fool researchers and even clinicians who have had those patients to believe that ME/CFS is a completely recoverable illness. However, this is not the experience of the typical person with ME/CFS. Most people with ME/CFS diagnosed or undiagnosed are, in the absence of other diseases, unable to carry out the normal tasks typical of a human being. Because of this profound inability of their bodies to produce and therefore recover normal energy, most people who have ME/CFS are not tired due to deconditioning and will not benefit from exercise. In fact, what is considered normally healthy cardiovascular exercise can plunge a person into long-term debilitating PEM from which they may never recover. This can result in tremendous misunderstanding and hostility from treating clinicians, physical therapists, and medical establishments around the world who refuse to consider this new paradigm. This is tragic because by using a technique called pacing, a form of energy management and conservation, borne out of the occupational therapy tradition, where the individual participates in activities as tolerated and does not regularly outperform their daily energy threshold, is extremely effective in minimizing PEM, reducing its duration, intensity, and severity, and therefore elevating quality of life. This may take extra support from those who live with or near that person. In the most catastrophic cases, supportive and palliative care are necessary for the individual’s survival and well-being. In many other cases, proper pacing and energy conservation management can help a person with ME/CFS more readily maintain their own baseline functioning, rather than constantly fighting against and being submerged by a tide of out-of-control PEM.
The Workwell Foundation based in Ripon, California has pioneered the use of the two-day CPET (cardiopulmonary exercise stress test) and has both measured and studied post-exertional malaise in ME/CFS patients for disability purposes and scientific purposes over several years. They have published numerous papers and contributed to numerous studies of the phenomenon. Below you will find a series of videos and a comprehensive study from the Workwell Foundation that demonstrates the existence of PEM, what is behind it, how it distinguishes itself from tiredness or fatigue after exercise in other types of major medical illnesses, and the debilitating effects it has on people specifically with ME/CFS.
INTENSITY AND DURATION OF POST-EXERTIONAL MALAISE IN PEOPLE WITH ME/CFS AFTER CPET VS HEALTHY CONTROLS
Copyright 2020 Scott Schneider Productions - all text written and maintained by Scott Schneider.
Because the phenomenon has been associated with a major disruption in the body’s metabolic pathways on a molecular level, interfering with mitochondrial functioning in the musculoskeletal systems as - noted above - the effects of post-exertional malaise are destructive. The impaired mitochondrial functioning has been tied to poor blood oxygenation and muscle perfusion. The result of these metabolic disruptions, poor blood oxygenation to the muscles, and the subsequently impaired mitochondrial output, post-exertional malaise is what makes ME/CFS the devastating illness that it is. There is no other disease process that is associated with this kind of broken energy system. . .
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