Chronic Fatigue Syndrome (CFS) is a prevalent disorder that has become increasingly recognized in the last several years and contributing to major disability and cognitive impairment in the United States.
The diagnostic criteria for CFS include:
Marked decrease in ability to perform pre-illness activities for at least 6 months, accompanied by profound fatigue that is not caused by exertion and does not improve with rest. Severely impairment in the person's ability to engage in work/school, social, and personal activities.
Post-exertional Malaise (PEM) even after the most mild of activities, such as unloading the dishwasher or previously tolerated mental activities that does not resolve after rest, often thought by the person as a "crash" or "collapse" (the most characteristic feature of CFS)
Triggers include emotional or physical trauma; illness; sleep disturbance; sensory stimuli; and exposures to food, chemicals, mold, or medications.
Unrefreshing rest sleep (despite feeling exhausted, people are often unable to fall asleep or sleep through the night), "like a battery unable to recharge despite rest or limiting activities."
Either cognitive impairment or orthostatic intolerance (inability to stand for long periods of time) or both. "Brain Fog/Thinking requires more effort now."
Other common features include:
chronic pain
reduced stamina
Flu-like fatigue
cognitive issues
muscle pain and weakness
joint pain
sleep disturbance
immune/inflammatory symptoms
dizziness, ataxia
stomach/bowel problems
headaches
alcohol intolerance
gastrointestinal or genitourinary complaints
sore throat
painful or tender neck or armpit lymph nodes
thermoregulatory issues
chemical sensitivities (such as to strong odors or prescription drugs
Social isolation, not wanting to leave the house
Many people can become transiently or permanently disabled due to this condition, and not all criteria are required for an official diagnosis.
Memory testing (Neuropsychological testing) is often helpful in confirming the diagnosis, but it is important to go to providers who are aware of the CFS diagnosis. In my personal experience, I have found many providers who doubt whether CFS is a "real diagnosis" and place the blame on the patient for not putting enough effort into the testing or into their personal lives. I find this astonishing, but luckily there are some providers out there who are more aware of this diagnosis and sensitive to the stressors and trauma in the lives of many people.
A neurologic examination, lab testing, and often brain imaging are essential in making the diagnosis of CFS, so I suggest seeing a neurologist who has been UCNS-certified in Cognitive Neurology to obtain the most accurate diagnosis and avoid being undermined by professionals who are unaware of this diagnosis and think the problem is mostly the fault of the patient not addressing "psychological issues."
The primary neurocognitive impairment observed in persons with ME/CFS without psychiatric comorbidity is slowed information processing, the presence of which supports the diagnosis.Also, persons with ME/CFS frequently exhibit impairments in memory, attention, and psychomotor function. This is characteristic of the "brain fog" many people complain about who have underwent significant stressors in their life, physical, mental, or emotional abuse, or traumas in their life as a result of a cancer diagnosis, a near-death experience, or witnessing the decline or death of a loved one.
Treatment for CFS includes:
MOST IMPORTANT! Explaining to the patient that CFS is an organic disease related to brain dysfunction and symptoms are not primarily psychogenic or due to malingering (pretending). Often physicians not trained in cognitive neurology neglect this fact and attribute it primarily to psychological problems, saying or conveying "It is all in your head," placing the blame on the patient! Again, I suggest seeing a neurologist with UCNS-certification in Cognitive Neurology.
Avoiding triggers, such as warm environments and hot showers, prolonged standing or sitting, dehydration, and alcohol.
Pacing, or activity management, involves balancing rest with activity to reduce CFS flares. It's important for people with CFS to not become trapped in "push-and-crash" cycles, where they feel better, overexert themselves, and relapse. Pacing (eg, adaptive pacing therapy, energy modulation, and interval activity) teaches patients to realign their approach to activity with the limits CFS imposes instead of persisting until they crash. Most clinicians will not have much familiarity with pacing principles in detail, nor will they have the time to really go over them with patients. The website cfidsselfhelp.org has helpful information for both patients and healthcare providers.
Preventing physiological deconditioning, such as with Graded Exercise Therapy (GET)
Environmental modifications (working from home, handicap placards, flexible schedules)
Salt restriction
Avoiding high-carbohydrate meals (which have been shown to cause vasodilation and blood pressure lowering)
Treating sleep dysregulation
Treating pain
Treating cognitive dysfunction
Treating other medical comorbidities contributing to CFS
Unfortunately, Primary Care Physicians (PCPs) are the first healthcare providers consulted, and most PCPs remain skeptical of diseases with no established pathology and believe CFS is a psychogenic disorder. Other PCPs misattribute symptoms to anxiety or depression or dismiss patients as malingerers or liars. Surveys of PCPs show less than half feel confident in their ability to diagnose or to treat CFS. Researchers blame the failure of medical schools and textbooks to address CFS comprehensively for physicians' erroneous beliefs about ME/CFS and for their lack of confidence managing persons with ME/CFS. A survey found persons with CFS were more likely to be satisfied with care from a specialist in ME/CFS than from a PCP. Approximately 70% of people with CFS consult at least 4 physicians before receiving a diagnosis. Receiving the correct diagnosis takes 75% of persons with ME/CFS at least 1 year and 30% more than 5 years. An estimated 80% of persons with ME/CFS have yet to receive a correct diagnosis.
Prior to diagnosis, many persons with CFS have had family, friends, and even healthcare providers (HCPs) question the legitimacy of their illness. According to a recent survey of persons with CFS, 53% had an HCP attribute their illness to an inappropriate cause (mainly psychological), 30% had an HCP deny that CFS was a real illness or that the patient's symptoms were real, and 9% were accused by an HCP of faking their illness. Patients may become defensive, which represents a barrier to treatment that is best overcome by using a patient-centered, empathetic, collaborative approach. Many CFS experts agree that the first step in managing persons with ME/CFS is to validate the patient's experience and acknowledge that CFS is a real biological illness. This generates tremendous relief for many persons with ME/CFS and lays the foundation for a positive therapeutic partnership. Management can proceed once the patient feels validated.
What is the prognosis of people with CFS? 40% of persons with ME/CFS experience symptom improvement and 5% to 30% have worsening symptoms. Many patients have relapsing/remitting symptoms, and need continuing care from a specialist to reduce the risk of relapse.
The main goals of treatment are to manage symptoms, improve functional capacity, and improve quality of life. Because symptoms fluctuate and evolve over time, treatment plans should be individualized. People with CFS require frequent monitoring, with clinic visits every 1 to 3 months depending on symptom severity. During office visits, patients may benefit from receiving written recommendations, bringing a family member or caregiver for support, and using a recorder to help remember what was discussed during the encounter and their plan. Extended office visits are often necessary. As a cognitive neurologist, I am prepared to assist with disability claims, school accommodation requests, and procuring mobility devices.
As caregivers for people with cognitive impairment, I suspect Chronic Fatigue, stress, and even abuse may be happening at home for a lot of you. Please don't be afraid of sending me a private message or setting up a time for us to meet in person or talk on the phone to discuss helping you.
Comments