What’s ME/CFS?

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

When we exercise, it creates stress on the body. When we’re finished exercising, the body releases a parasympathetic recovery response and rebuilds, helping us become stronger.

However, for people with Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome or ME/CFS), the body fails to properly recover after exercise and other forms of typical stress. Physical exertion, mental exertion, and common environmental stressors can rather trigger a profound cellular level “crash” and flu-like inflammatory symptoms that can take days, weeks, or much longer to recover from.

Harvard scientists hypothesize people with ME/CFS develop dysfunctional inflammation-related recovery mechanisms, delaying post-stress recovery.

People with ME/CFS also have reduced energy baselines, ranging from mild to very severe.

Researchers have characterized the condition as a type of “cell danger response” after the body fails to overcome an overwhelming environmental threat or combination of threats (such as a virus, injury, chemical exposure, extreme stress, etc).

It has been classified as a neuroimmune disorder and hypometabolic state perpetuated by continued environmental stimulus or a block in the healing cycle after the initial threat(s) have been eliminated.

If you’d like to learn more about the research, triggers, risk factors, and more…

What is ME/CFS? The Long Version.

  • Myalgic Encephalomyelitis (a.k.a. “Chronic Fatigue Syndrome” or “ME/CFS”) is a type of cell danger response after the body fails to overcome an infection, injury, other environmental threat, or (more commonly) a combination of threats.
  • The syndrome been characterized by UCSD metabolomic researchers as a hypometabolic response to environmental stress.
  • Several additional research groups, including Columbia pathology researchers, have found that people who fit the diagnostic criteria for ME/CFS have an altered metabolic profile.
  • Like other chronic illnesses, it is perpetuated by continued environmental stimulus and/or a block in the healing process after the initial trigger(s) have been resolved.
  • For people with ME/CFS, baseline energy levels are impaired which can range from mild to very severe (bedbound) resulting in a significant decline in quality of life.
  • The signature symptom for ME/CFS is post-exertional fatigue or post-exertional neuroimmune malaise (note: fatigue and malaise are medical terms — it can more realistically be described as a “crash”)
  • People with ME/CFS are unable to properly recover from “healthy” stressors like exercise and mental stimulation.
      • People with ME/CFS also experience unrefreshing sleep, where most repair typically happens.
      • Harvard scientists hypothesize people with ME/CFS develop dysfunctional inflammation-related recovery mechanisms, delaying post-stress recovery.
      • For people with ME/CFS, physical and cognitive exertion can trigger a further, significant decline in stamina, increase in cognitive issues, increase in cardiopulmonary issues, and/or flare-up of flu-like symptoms that can take days, weeks, or longer to recover from (commonly referred to as a “crash” or “relapse”).
      • Post-exertional crashes commonly have a delayed onset 2 to 48 hours after the triggering event
      • Post-exertional crashes can come with early symptomatic “warning signals” (i.e. chest pressure, voice changes, headache, a feeling of heaviness) but it is common for there to be no immediate signs
      • In addition to exertion, people with ME/CFS commonly develop heightened neuroinflammatory responses to environmental stressors (toxins, etc.) whether or not they were the initial trigger, which can also precipitate a “crash.”
  • Downstream effects of the hypometabolic dysfunction associated with ME/CFS include significant glucose metabolism impairment, decreased bile acid synthesis, and decline of gut mucosal integrity. The latter can enable gram-negative bacteria and their endotoxins to translocate from the gut lumen into the blood circulation.
  • Most people with ME/CFS do not experience a clear day-to-day linear progression or decline, rather energy capacity and symptoms can fluctuate.
      • People with ME/CFS often experience days where doing the same things they did the day before requires more exertion (a clue can be if resting heart rate is elevated over typical days)
      • People with ME/CFS can also have “good” days where their physical and/or mental capacity is greater than previous days.
      • Symptoms can fluctuate even in the course of a day.
  • ME/CFS is associated with latent viral reactivation and other chronic infections
      • Biofilms (combinations of pathogenic bacteria, commensal bacteria with activated virulent genes, viruses, yeast, other fungi, heavy metals, parasites, etc. in protective films that evade the immune system) are thought to both be a down-stream effect and contributor of the metabolic and nervous system dysfunction associated with ME/CFS.
      • Research groups are investigating how pathogens can influence the functionality of mitochondria and cellular signaling.
  • ME/CFS is classified by the World Health Organization as a neurological disorder.
      • ME/CFS is associated with sustained glial cell hyperactivity (the supporting cells of the nervous system found in our brain, spinal cord, and Peripheral Nervous System), which perpetuates oxidative and nitrosative stress, neuroinflammation, and neural sensitivity.
      • For people with ME/CFS the parasympathetic recovery response fails to properly activate after exercise and other forms of exertion.
  • ME/CFS is also associated with intracellular signaling dysfunction. Multiple research teams are investigating what factors are activating or blocking cell signals thought to perpetuate the metabolic dysfunction associated with ME/CFS.

Criteria for medical diagnosis

For clinical diagnosis, the International Organization of Medicine (IOM) requires 1. a substantial reduction in one’s ability to engage in pre-illness levels of activity not explained by excessive exertion or significantly alleviated by sleep 2. post-exertional malaise 3. plus at least one of either cognitive impairment or orthostatic intolerance.

Medical classification entities require 6 months of symptoms for an ME/CFS diagnosis and recommend symptom management before the six month mark.

Many medical experts believe this last stipulation misses excellent opportunities for early intervention (i.e. identifying and addressing healing blockers and nutritional deficiencies and authorizing time off work to recover before dysfunction sets in).

Understanding the risk factors (the body’s natural ability to handle a threat), healing blockers (environmental stressors blocking the body from overcoming a threat), and the metabolic and neurological irregularities associated with ME/CFS can inform treatment.

Triggering Events for ME/CFS

Triggering events for ME/CFS fall broadly into five groups and commonly overlap.

    1. Biological threat (viral infection, bacterial infection, parasite, fungal exposure) or combination of biological threats
    2. Chemical exposure (i.e. VOC exposure on the job, heavy metal exposure, pesticide exposure)
    3. Physical trauma (head injury, brain surgery, sports injury, etc.)
    4. Psychological stress (loss of loved one, extreme work stress in months prior, divorce)
    5. Extreme exercise (3+ hours high-intensity exercise per day with minimal recovery period)

It is common for multiple threats to converge within a year. Acute HHV-4, also known as Epstein-Barr Virus (EBV), infectious mononucleosis, and glandular fever is a common viral precursor to ME/CFS, though does not represent the majority of cases.

There have been multiple documented viral outbreaks (and in some cases a combination of a virus and mycotoxin exposure) linked to ME/CFS, but no one pathogen or combination is a main cause. 

It is not the threat that is the signature of the disease, rather it’s the body’s continued failed response to it.

Onset of ME/CFS

The onset can be immediate or occur gradually over weeks, months, or longer.

Someone with multiple risk factors (including prior long-term mold exposure, recently experienced loss) can have routine radiation to remove a benign tumor and have immediately entered the hypometabolic state associated with the syndrome. Another can contract a viral illness, experience up-and-down flu-like symptoms for a couple months while exposed to environmental toxins and other stress, and eventually get “stuck” in the neuroinflammatory and hypometabolic state associated with the syndrome. These represent real cases.

Early warning signs of Myalgic Encephalomyelitis

If a person has:

    • Not fully recovered from an infection or injury after a month
    • Is having up-and-down flu-like symptoms
    • Is experiencing profound fatigue not explained by lifestyle factors that gets worse with exertion

…these are early signs of Myalgic Encephalomyelitis and they should have other immune and fatigue-related conditions ruled out (lymphoma, HIV, hepatitis, depression, allergies, sleep apnea, Crohn’s, hypothyroidism, anemia, etc.). Conditions like these can of course also pre-exist in someone with ME/CFS.

Hypothyroidism and anemia, which can cause or contribute to profound fatigue, do not tend to also cause flu-like inflammatory symptoms and post-exertional “crashes” that significantly reduce one’s capacity the following day (and can take multiple days, weeks, or longer to recover from) like in ME/CFS.

Post-viral fatigue from a flu-like illness, is often a precursor to ME/CFS, though most recover before it becomes chronic. This is the time where early medical intervention can be very helpful (i.e. for health professionals to investigate healing blockers and prescribe rest and time off work).

People who present with the early signs of ME/CFS will ideally have pathogenic drivers, nutritional deficiencies, and toxic exposures thoroughly investigated.

Most, but not all, people with ME/CFS experience cognitive problems (brain fog, trouble remembering words) that can range from mild to severe which get worse with exertion or other environmental stress.

A significant portion of people with ME/CFS experience blood flow issues, including difficulty going from lying to standing. Many people with ME/CFS develop post-onset digestive issues and report new food sensitivities.

Common Symptoms of ME/CFS

  • Post-exertional “crashes,” commonly with a delayed onset of 2 to 48 hours
  • Reduced baseline energy levels, which can range from mild to very severe
  • Nonrestorative sleep
  • Fluctuating flu-like symptoms
  • Swollen lymph nodes (neck, underarms, etc.)
  • Brain fog, trouble recollecting words, difficulty processing information that gets worse with exertion and/or other environmental stressors
  • Orthostatic intolerance, heart palpitations

I’ve chosen to hide other symptoms associated with ME/CFS for people recovering who prefer not to focus on them. The main issue is the body’s dysfunctional response mechanisms rather than the symptoms themselves.

Potential Risk Factors

People with ME/CFS will usually have multiple, but not all, risk factors. Potential risk factors fall generally into three categories:

      1. Lowered immune strength to mitigate the threat(s)
      2. Prior hits to the autonomic nervous system to prime a maladaptive stress response to threat(s)
      3. Environmental stressors blocking the body from overcoming the threat(s)

Potential risk factors include: 

  • Lack of rest during onset of illness or injury.
  • People with prior hits to the brain’s limbic system are hypothesized to be at greater risk. Potential risk factors include, but are not limited to:
      • History of whiplash
      • History of brain concussion
      • History of major surgery with anesthesia
      • History of major physical trauma
      • History of major emotional trauma
      • Prior long-term exposure to environmental toxins (mycotoxins from mold, pesticides, heavy metals, etc.), which can cause brain inflammation
      • Carbon monoxide poisoning
      • History of major stress, particularly in the 6 months leading up to onset (loss of loved one, divorce, extreme work stress)
      • Extreme exercise (3+ hours per day of high-intensity exercise with minimal recovery period) in the months leading up to onset
  • Mycotoxins from mold (most commonly from water-damaged buildings and yard work) can weaken the immune system’s ability to overcome a threat. 
  • Other environmental toxins (which can be an initial trigger themselves) can burden the body when it’s trying to heal from an illness or injury such as:
      • Volatile organic compounds
      • Endocrine disruptors
      • Heavy metal exposure
  • People with compromised immune systems and lowered immunity have an increased susceptibility to chronic illnesses. Potential risk factors include, but are not limited to:
      • History of long-term use of antibiotics
      • History of parasites
      • Low white blood cell count
      • Low natural killer cell activity 
      • Heart condition
      • Low Vitamin D levels (also a sign of chronic illness)
      • Gastrointestinal dysbiosis (also a sign of chronic illness)
  • People with blocked nerve pathways, positional spinal cord compression, and mechanical spinal cord irritation are hypothesized to be at greater risk for ME/CFS, which is a type of neurological disorder.
      • Craniocervical instability
      • Damaged Vagus nerve
      • Scoliosis
  • Overexertion and overstimulation in the early phase of an illness or injury can add stress to the body and delay its ability to heal.

People with ME/CFS can have few or many of these additional symptoms and markers, which can range from mild to extreme. This list does not include all symptoms.

  • Persistent sore and/or splotchy throat
  • Low natural killer cell activity
  • Recurrent latent viral replication (i.e, EBV, CMV, HHV-6, HHV-7, Coxsackie A and B) and/or persistent bacterial infections (i.e., mycoplasma, Borrelia burgdorferi, and Chlamydia pneumoniae)
  • Improper immune responses (for example, a recurrent fever or a failure to mount a typical response to a common cold)
  • Post-onset sugar, alcohol, caffeine, and gluten sensitivity (these are the most common, many people with ME/CFS develop more extensive food sensitivities)
  • Temperature sensitivity (increase in symptoms and “feeling out of it” if weather abruptly changes, sweating at night, body chills)
  • New chemical sensitivities (heightened response to chemicals that can affect the central nervous system)
  • Feeling “exhausted but wired” (not explained by lifestyle, diet, medication, or sleeping hours)
  • Difficulty calming after adrenaline-spiking activities (for example from intense mental activity, physical activity, watching an action movie, or excitement)
  • Heightened sensitivity to stress (any form)
  • Sensitivity to light
  • Sensitivity to sound
  • Electromagnetic sensitivity
  • Dysautonomia
  • Tinnitus
  • Excessive thirst
  • Low blood volume
  • Increased resting heart-rate during “flare-ups”
  • Chest pain or pressure
  • Shortness of breath
  • Easy bruising
  • Post-onset IBS
  • Small intestinal bacterial overgrowth (SIBO)
  • Gut dysbiosis
  • Hair loss
  • Hypothyroidism or borderline hypothyroidism (thyroid functionality decline can be a downstream effect of ME/CFS)
  • Anxiety
  • Depression (loss of social ties due to reduced capacity can contribute to this)
  • Adrenal fatigue
  • Joint pain
  • Muscle pain
  • Headaches
  • Low Vitamin D, Magnesium, B12, Zinc levels (multiple nutritional deficiencies are linked with ME/CFS due to the body requiring more and/or not properly metabolizing post-onset)
  • Approximately 1 in 4 people with ME/CFS have Postural Orthostatic Tachycardia Syndrome
  • Approximately 1 in 8 people with ME/CFS also have Fibromyalgia (chronic widespread nerve pain)

Yes.

Forty percent of adults with adult-onset ME/CFS (longer than 6 months as classified) substantially improve.

It’s reported 5% of people fully recover. That being said, not a single person I know, including myself, who fully recovered ever was given a survey to complete saying that we recovered. Also, I know a good number of people who fully recovered who went on to live their lives who don’t share their stories and try to never look back (it’s often for career reasons and wanting to avoid the stigma, though more often, they tell me it’s too traumatic for them to go back there). 

Sometimes a person can be very sick for many years, but then quickly recover after resolving healing blockers (we will share these stories). Some people recover slowly with multiple ups and downs along the way (we’ll share these stories, too). No recovery journey is linear.

The current prognosis for children is brighter. 

Many who recovered report that this challenge ultimately helped them regain an even healthier and happier life, as it led them to make healthier choices, break unhelpful patterns, and appreciate the moments. 

Our Mission

Heal with Liz’s goal is to increase ME/CFS recovery numbers through community and expert wisdom.

This blog also seeks to generate excitement for ME/CFS research that can lead to treatment to help people heal.