08/28/2026
Going to give my brain a vacation. And speed my recovery forward.
The Stitch Lounge
Will REOPEN
September 24th.
Thursday. Friday. 2 to 5pm.
Saturday. 1 to 4pm.
Happy to meet you if you are in dire need!! Text me.
209 770 1174.
What is Myalgic Encephalomyelitis (ME-ICC)?
Myalgic Encephalomyelitis (M.E.) as defined by the International Consensus Criteria (ME-ICC) is a serious, systemic neurological disease that is usually triggered by a viral infection. The illness involves dysfunction and injury within the central nervous system, particularly the brainstem, which helps regulate vital body functions such as heart rate, blood pressure, breathing, digestion, hormones, and cognitive processing.
In M.E., multiple areas of the brain and spine are affected. Because the brain controls and coordinates nearly every system in the body, this neurological disruption leads to widespread, multi-system dysfunction.
The disease interferes with the body’s ability to maintain normal internal balance (homeostasis). Changes in neurochemical signaling disrupt communication between the brain, immune system, hormones, and the autonomic nervous system. As a result, the body struggles to properly regulate circulation, temperature, digestion, cognition, sensory processing, and energy production.
Although M.E. is primarily a neurological disease, it affects many body systems. Patients may experience abnormalities involving the cardiovascular, immune, endocrine, gastrointestinal, respiratory, and musculoskeletal systems. Problems with blood flow regulation, autonomic function, and cellular energy production are also commonly seen and contribute to the severity of the illness.
A defining feature of M.E. is that even minimal physical or cognitive activity, sensory stimulation, or being upright can trigger a worsening of symptoms. This deterioration can last days, weeks, or longer and is a major reason why the illness can be profoundly disabling.
The high level of disability in M.E. is caused by the chronic nature of the disease, instability of body systems, and the brain’s reduced ability to regulate normal physiological responses. Cognitive dysfunction is often one of the most disabling aspects of the illness.
Decades of clinical observation and scientific research support the understanding of M.E. as a serious, multi-system neurological disease.
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How activity affects people with ME (ME-ICC)
One of the defining features of Myalgic Encephalomyelitis is the abnormal way the body responds to activity and stimulation. People with M.E. do not recover normally after exertion. Physical activity, mental effort, sensory input (such as light or noise), or simply being upright can trigger a significant worsening of symptoms.
After becoming ill, people with M.E. experience a sudden and major reduction in their ability to function. Many are only able to sustain around half — or far less — of their previous activity levels.
Exceeding an individual’s limits can cause a worsening of many symptoms, including neurological, cognitive, cardiovascular, immune, hormonal, digestive, and muscular problems. The amount of activity needed to trigger this worsening varies from person to person, but it is often very small compared to what they could tolerate before becoming ill.
A key characteristic of M.E. is that the worsening of symptoms is often delayed, typically appearing 12 to 72 hours after exertion, and may last for days, weeks, or longer. Symptoms can also fluctuate significantly from hour to hour, day to day, or month to month.
Importantly, rest alone does not resolve the illness. People with M.E. usually have a baseline level of symptoms even when they are resting.
Repeated overexertion can lead to relapses, worsening disability, and disease progression. Patients who are able to stay within their limits generally have a better long-term outlook. However, those who are very severely affected may have little or no safe level of activity without triggering symptom worsening.
This abnormal response to exertion and stimulation is one of the core features used to identify and diagnose M.E. under the International Consensus Criteria (ME-ICC).
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Why people with Myalgic Encephalomyelitis (ME-ICC) can be so severely disabled
One of the reasons people with Myalgic Encephalomyelitis can be so profoundly disabled is the body’s reduced ability to circulate blood effectively.
To stay alive, the heart must pump a certain minimum amount of blood through the body. Whenever a person is active — whether walking, sitting upright, thinking, speaking, reading, or processing sound and light — the body requires more blood flow and energy.
In many people with M.E., research has shown significantly reduced circulating blood volume and abnormalities in cardiovascular and autonomic regulation. This means the body may struggle to deliver enough blood and oxygen to the brain and muscles, particularly during activity or when the person is upright.
As a result, even small amounts of physical activity, mental effort, sensory stimulation, or simply sitting or standing can place stress on the body and lead to a worsening of symptoms. This worsening is often delayed by 12 - 72 hours and can last for days, weeks, or longer.
Because of these physiological limitations, people with M.E. must carefully manage their activity levels. Exceeding their limits can lead to relapses, increased disability, and worsening of the illness. Patients who are able to remain within their limits and avoid repeated overexertion often have the best chance of maintaining stability over time.
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Finding Your Activity Baseline (for people with M.E.)
For people with Myalgic Encephalomyelitis, finding an activity baseline means identifying the level of physical, cognitive, and sensory activity that your body can tolerate without triggering a worsening of symptoms.
Because M.E. causes an abnormal response to exertion, even small amounts of activity can lead to a delayed worsening of symptoms, often appearing 12 - 72 hours later. A baseline is the level of activity that allows you to remain relatively stable without triggering these crashes.
Finding your baseline usually involves reducing activity for a period of time and observing how your body responds. Once symptoms stabilize, you can begin to recognize your limits for things such as movement, thinking, conversation, screen time, noise, light, and time spent upright.
The goal is not to push through symptoms, but to stay within your limits as consistently as possible. This approach, often called pacing, helps reduce relapses and may prevent further worsening of the illness.
It is important to remember that a baseline is individual and can change over time. Some people have a small but stable baseline, while those who are very severely affected may have little or no safe activity level.
Learning your baseline is one of the most important tools for protecting your health and managing life with M.E..
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Ways to Find Your Activity Baseline (for people with M.E.)
Finding your baseline means learning the level of activity your body can tolerate without triggering a worsening of symptoms. Because M.E. often involves delayed symptom flares, this process requires patience and careful observation.
1. Start with extra rest.
If symptoms are unstable or you are crashing frequently, it can help to reduce activity for a period of time. This allows the body to settle so you can better see what level of activity is manageable.
2. Observe how your body responds.
Pay attention to what happens after physical activity, thinking, conversation, screen use, noise, light exposure, or time spent upright. Remember that worsening symptoms may appear 24–72 hours later, so look at patterns over several days.
3. Keep a simple activity and symptom log.
Writing down daily activities and symptoms can help reveal patterns. Over time you may notice which activities or amounts of activity trigger relapses.
4. Break activities into small pieces.
Instead of doing tasks all at once, try shorter periods of activity followed by rest. This helps you see what amount of activity your body tolerates best.
5. Stop before symptoms escalate.
If you begin to notice early warning signs (increased fatigue, cognitive problems, dizziness, pain, sensory overload, etc.), it is often helpful to stop and rest rather than pushing through.
6. Be cautious with increases.
If your condition becomes more stable, any increase in activity should be very gradual. Sudden increases often trigger setbacks.
7. Accept that baselines are individual.
Each person with M.E. has a different limit. Some people may tolerate light activity, while those who are very severely affected may have extremely small activity limits.
Finding and respecting your baseline is a key part of pacing, which many people with M.E. use to help reduce relapses and maintain as much stability as possible.
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What does “resting” mean for people with M.E.?
Resting means very different things depending on the severity of the illness.
For someone who is mildly affected, resting might mean quiet activities such as watching television, reading, or sitting with friends. However, for people with more severe M.E., these activities are not restful at all and may trigger a worsening of symptoms.
For those who are severely or very severely affected, resting may require lying down in a quiet, dark environment with minimal movement and as little sensory stimulation as possible. Light, noise, conversation, screen use, and even small amounts of cognitive effort can be too much.
Because of this, the word rest can sometimes be misleading. For many severely ill patients, this level of inactivity is not optional, but necessary simply to prevent further worsening of symptoms.
Each person with M.E. has different limits depending on the severity of their illness. The goal is not to be inactive, but to stay within the body’s individual limits. Exceeding those limits can trigger relapses and worsening of the illness.
People with M.E. generally want to be active and participate in life, but they learn through experience that overexertion can have serious consequences. Careful pacing and adequate rest are therefore essential parts of managing the illness.
Importantly, the severe limitations seen in M.E. are not caused by deconditioning. The illness involves complex neurological, cardiovascular, immune, and metabolic abnormalities. When people improve simply by increasing activity, it suggests they may have a different condition than M.E. as defined by the International Consensus Criteria.
References
Activity and Energy Management – Pacing
https://www.dialogues-mecfs.co.uk/films/pacing/
Pacing: https://chmg.com.au/wp-content/uploads/2021/04/Pacing-for-people-with-ME-by-Emerge.pdf
Pacing: https://25megroup.org/wp-content/uploads/2025/03/RestPacing-and-StressWhat-Every-ME-Patient-Should-Know.pdf
https://workwellfoundation.org/pacing-with-a-heart-rate-monitor-to-minimize-post-exertional-malaise-pem-in-me-cfs-and-long-covid/
“Striking the right balance between activity and rest is one of the most difficult aspects of coming to terms with M.E. On one hand is the need to take an appropriate amount of rest and relaxation, especially during the very early stages, as well as during periods of relapse or an exacerbation of ...
