Functional Medicine for Chronic Fatigue Syndrome (ME/CFS)

What is ME/CFS?

ME/CFS is a biological illness that affects many parts of the body. It causes severe fatigue that rest does not improve, along with problems thinking and sleeping, dizziness, pain and many other symptoms. A 2015 National Academies report stressed that it is a medical illness, not a mental health condition.^{1, 6}

People with ME/CFS may not look sick, but they cannot do their normal activities. They may not always be able to do daily tasks like showering or cooking a meal. About 1 in 4 people with ME/CFS are confined to bed at some point in their illness. ME/CFS can last for years and sometimes leads to serious disability.¹

Up to 3.3 million people in the United States may have ME/CFS. More than 9 in 10 of them have not been diagnosed by a doctor. Anyone can get ME/CFS. It is most common in middle age, but it also affects children, teens and older adults. Among adults, women get it more often than men.¹

Scientists do not yet know what causes ME/CFS, and it may have more than one cause. It most often starts after an infection, such as Epstein-Barr virus (the main cause of mono) or the virus that causes COVID-19. Researchers are also studying how the body uses energy, how people respond to infections, inflammation, toxins or injury, and genes. Sometimes a major life event comes just before symptoms start. Examples are an accident, surgery, childbirth, or strong physical or emotional strain.^{3, 5}

Common symptoms of ME/CFS

A required symptom of ME/CFS is post-exertional malaise, or PEM. This means symptoms get worse after any type of activity, physical or mental, that would not have been a problem before the illness. Symptoms typically get worse 12 to 48 hours after the activity, and they can last for days or even weeks. Everyday tasks, such as buying groceries, brushing teeth or talking with others, may bring on PEM.^{2, 4}

PEM can lead to a cycle of "pushing" to do more on a good day, followed by "crashing." A crash can bring trouble thinking, sleep problems, a sore throat, headaches, dizziness or severe tiredness. It may take days, weeks or longer to recover from a crash.^{2, 4}

Pain is very common. It is often muscle pain, joint pain without swelling, or new or worse headaches. Some people also have tender lymph nodes, a sore throat that keeps coming back, or digestive problems like irritable bowel syndrome. Others have chills and night sweats, or are sensitive to foods, smells, chemicals, light and noise. Muscle weakness, shortness of breath and an irregular heartbeat can also happen. Symptoms can change or come and go over time.²

Doctors look for five core symptoms. To be diagnosed, a person must have the first three below and at least one of the last two:²

• Being much less able to do the things you did before you got sick. This comes with fatigue that lasts six months or longer and is not relieved by sleep or rest.²
• Symptoms that get worse after physical or mental activity (PEM)²
• Not feeling better or less tired, even after a full night's sleep²
• Trouble thinking quickly, remembering things and paying attention, often called "brain fog"²
• Symptoms that get worse when standing or sitting upright, such as feeling lightheaded, dizzy, weak or faint (orthostatic intolerance)²

How ME/CFS is diagnosed and treated

There is no specific test for ME/CFS, so it is hard to diagnose. Doctors carefully review your symptoms, medical history, exam and test results. They also rule out other possible causes. They should ask how often your symptoms happen, how bad they are and how long they have lasted. It is also important for them to ask how symptoms affect your life. A National Academies report found that a careful history, physical exam and targeted tests are needed, and often enough, to make the diagnosis. Your doctor may send you to specialists, such as a neurologist, rheumatologist, cardiologist or sleep specialist. They can check for other conditions with similar symptoms.^{1, 5, 6}

There is no cure or approved treatment for ME/CFS, but some symptoms can be treated or managed. You and your doctor work together to decide which symptom causes the most problems, and treat that one first. Care may address sleep, pain, low mood or anxiety, dizziness on standing, and memory or focus problems. These strategies may not work for everyone.⁴

PEM can be managed by pacing, also called activity management. The goal of pacing is to balance activity and rest to avoid PEM flare-ups. You find your own limits for mental and physical activity, then plan activity and rest to stay within them. Some patients and doctors call this staying within the "energy envelope." Activity and symptom diaries may help you find your limits. Some people also use heart rate monitors or other wearable devices to track how hard their body is working.^{4, 5}

Simple changes can make activities easier. Examples are sitting while doing laundry or showering, taking frequent breaks, and dividing large tasks into smaller steps.⁴

Exercise is not a cure for ME/CFS. CDC says vigorous aerobic exercise can benefit people with many chronic illnesses, but people with ME/CFS do not tolerate such exercise routines. Standard exercise advice for healthy people can be harmful for people with ME/CFS. Still, it is important to keep doing the activities you can tolerate. Talk with your doctor before you start any exercise plan.⁴

Research is active. NIH-funded scientists are studying the immune system, the brain and gut bacteria in people with ME/CFS. One study found that people with ME/CFS have different types of gut bacteria, which may help diagnose ME/CFS in the future.⁵

How our care fits alongside your primary care doctor

Avicenna Functional Medicine does not replace your primary care doctor or the treatment they prescribe. Our role is to add to your care, not to take its place.

In a functional medicine visit, we look at factors that may contribute, such as energy metabolism, mitochondrial function and immune regulation, alongside the care you already receive. Our aim is to understand the whole picture of your health and to support your overall wellbeing.

These areas are being studied in ME/CFS. Scientists have found differences in the way the cells of people with ME/CFS use food to create energy, and more studies are needed. Mitochondria are parts of cells that play a key role in making energy. A 2020 review found that studies of mitochondria in ME/CFS did not agree with each other, so their role is still hard to establish. Changes in the immune system may also play a part.^{3, 7}

Please do not stop or change any prescribed medication without talking to the doctor who prescribed it. People with ME/CFS should always talk to their healthcare provider before trying any medication.⁴

What to expect at Avicenna

All visits are by telehealth, for patients located in Florida and Texas. We are a cash-pay practice, and we accept HSA and FSA. Care usually follows these steps:

• A free, 30-minute discovery call to talk about your health and whether our approach is a good fit for you
• A full intake visit with our health coach, under clinician supervision, covering your history, symptoms, current treatment and goals
• Testing chosen for you, where it is likely to be useful
• A personalized plan, with follow-up visits to review how you are doing and adjust the plan as needed

When to get urgent care

ME/CFS symptoms can look like those of many other illnesses, so tell your doctor about any new or changing symptoms. Living with ME/CFS can be hard, and people with the condition may also have depression, stress or anxiety. These can often be helped, so tell your doctor if your mood is low.^{1, 5}

Telehealth visits with our team are not for emergencies. Call 911 right away if you have warning signs of a medical emergency, such as:⁸

• Chest pain or pressure that lasts two minutes or more⁸
• Trouble breathing or shortness of breath⁸
• Sudden confusion, unusual behavior or trouble waking up⁸
• Fainting or passing out⁸
• Sudden dizziness, weakness or changes in vision⁸
• Being unable to speak⁸
• Severe belly pain, or sudden severe pain anywhere in the body⁸
• Coughing up or vomiting blood⁸
• Thoughts of suicide or of harming someone else (you can also call or text 988)⁸