Chronic Fatigue Syndrome

Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis or ME/CFS) is defined as persistent or recurrent fatigue, present for more than six months, unexplained by other conditions and not the result of ongoing exertion, not substantially alleviated by rest, and resulting in a difficulty engaging in normal levels of activity.

Symptoms

  • Overwhelming fatigue that sleep doesn’t resolve, energy depletion, inability to keep up with life

  • Post-exertional malaise, which means the worsening of symptoms after physical, mental, or emotional activity. Terms people may use to describe this experience include: “crash,” relapse,” or “collapse.” It may take weeks or months to recover from a crash.

  • Difficulties with sleep, including sleep that isn’t refreshing

  • Difficulties with memory, focus, thinking, and concentration

  • Headaches

  • Sore throat

  • Muscle and joint pain, muscle weakness

  • Irregular heartbeat

  • Tender/swollen lymph nodes

  • Digestive challenges

  • Shortness of breath

  • Chills and night sweats

  • Allergies and sensitivities to foods, odors, chemicals, light, and/or noise

  • Orthostatic intolerance (worsening of symptoms when moving from lying down to sitting or standing up or moving from sitting down to standing up; might include changes in vision), dizziness, lightheadedness, weakness, fainting

Tiredness v. Fatigue

  • Tiredness can be resolved by getting adequate sleep and rest.

  • Fatigue cannot be resolved by getting adequate sleep and rest.

  • Tiredness can be pushed through.

  • Fatigue can be so debilitating that it is impossible to push through…and trying to push through can lead to serious crashes that can take weeks, if not months, to recover from.

  • Tiredness happens to everyone, and typically happens every day. It’s normal, and not a reason for deep concern.

  • Fatigue is not a universal experience. It shouldn’t happen every day. If fatigue is experienced on a regular basis, it is not normal and it can be a reason for deep concern. When a person experiences fatigue every day, for at least 6 months, it may be considered Chronic Fatigue Syndrome.

  • Tiredness doesn’t prevent a person from doing basic things, like brushing their teeth, moving around, socializing, working.

  • Fatigue can prevent a person from doing basic things, making it challenging to participate in “normal life” and can, therefore, be terribly isolating.

  • Everyone understands tiredness.

  • Most people don’t understand fatigue unless they either experience it themselves, empathetically observe someone who experiences it, or take the time to learn about it.

Activities That May Be Unmanageable for Someone With Chronic Fatigue Syndrome

  • Working

  • Exercising

  • Running errands

  • Phone and Zoom calls, socializing

  • Doing household chores, showering, preparing food

  • Attending concerts, events, parties, and other festivities

  • Reading, watching TV or movies, listening to music or podcasts

  • Explaining why sometimes they can manage to do X but other times can barely even brush their teeth

Chronic Fatigue Syndrome PSA

Living with Chronic Fatigue Syndrome can be frightening, confusing, isolating, and life-changing. Everyone experiences it differently. For any one individual, every day can look different - even different parts of each day can be drastically different.

Activities that healthier individuals might consider to be “no big deal” might take tremendous effort for someone with ME/CFS to do. Examples include talking, brushing teeth, running errands, taking a shower, preparing food, socializing, watching TV, listening to podcasts, reading, etc.

Just because someone with ME/CFS (or any other conditions) may appear to be “out and about” on one day doesn’t mean that they are doing well, or that they should be expected to be able to partake in activities. Often, people with ME/CFS need to become very methodical and diligent with how they spend their time. Someone with ME/CFS might choose to go out with friends on Sunday afternoon, knowing that they’ll need to rest and recover in solitude the rest of the week or even month(s).

Please don’t assume you can understand how someone with ME/CFS (or any other conditions) is feeling based on appearances and apparent activity level. A lot may be hidden beneath the surface.

Potential Co-Morbidities

  • Ehlers-Danlos Syndrome

  • Dysautonomia, POTS

  • Mast Cell Diseases

  • Fibromyalgia

  • Viruses and infections, including Lyme Disease and COVID (Long-COVID)

  • Autoimmune Conditions

  • Irritable Bowl Syndrome

  • Multiple Chemical Sensitivity

  • Mold infection, environmental toxicity

  • Vision and vestibular challenges

  • Traumatic Brain Injuries and concussions

Things that help me…

Lifestyle

Energy and Time Management

  • Limiting screen time and social media engagement

  • Learning my limits, setting and sticking to boundaries, learning to say “no,” not pushing through fatigue or pain (or at least doing it less often - and having a recovery plan when I do need to do something energy-intensive)

  • Prioritizing lowering stress load

Treatment

  • Benagene CFS

  • Low Dose Naltrexone (LDN must be compounded; I use Harbor Compounding Pharmacy)

  • Hyperbaric Oxygen Chamber

  • Vagus nerve reset, vagus nerve exercises

  • Treating mold and other environmental toxicity

  • Addressing mitochondrial dysfunction (CoQ10, L-Carnitine, etc.)

  • Working with Dr. Marc Schoen, PhD via medical hypnosis to restore parasympathetic nervous system function and recalibrate my nervous system to feel safe.

  • Working with Neuro Performance Specialist Steve Madama to address vision, vestibular, vocal, vagal, coordination, functional, and other neurologic issues that help to educate my body and help it to feel safe.

Care Team

Click here for care team recommendations

  • Functional/integrative/naturopathic medical doctors

  • Complex disease specialists

  • Neuro performance trainer (Z-Health performance trainers)

  • Medical hypnosis providers (MD, DO, or PhD)

  • Mental health professionals, including psychiatrists, psychologists, trauma specialists, counselors, etc.