ME/CFS: How to Manage it
- Chloe Kim
- 1 day ago
- 7 min read
What is ME/CFS?
ME/CFS, also known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, is extreme fatigue that can't be explained by an underlying medical condition. This condition is not very well-known to the public yet; however, it is always in need of more attention and research. After years and years of research, there is no test to confirm ME/CFS which makes it difficult to diagnose. In fact, take a look at some notable statistics about this condition:
Symptoms
Symptoms of ME/CFS are usually unpredictable and may change over time. Lets take a look at some of the various symptoms that people with ME/CFS can experience and how one can manage these symptoms:
Fatigue
People with ME/CFS have a much lower ability to do activities they could easily do before they got sick. This comes with fatigue that can be severe, isn't caused by a difficult activity, and isn't relieved by sleep or rest. To reduce fatigue, try to:
Maintain a healthy weight - If your body is carrying excess weight, it adds to your exhaustion and puts extra strain on your heart. Losing this extra weight can give you energy for your daily activities. Try maintaining a healthy diet and exercise schedule to maintain a healthy weight.
Reduce stress - Stress uses a lot of energy, so try engaging in relaxing activities to reduce your level of stress. Try yoga, meditation, listening to music, reading, spending time with friends and family, and other ways to reduce stress.
Hydration - Remember to maintain a healthy level of water consumption as tiredness and fatigue can be worsened or caused by dehydration. It is recommended that people should aim to drink 6 to 8 cups of water a day; however, the healthy intake of water is individualized by main factors.
Pain
Experiencing pain is very common for people with ME/CFS; however, the type and location of pain varies. Most common types of pain include muscle pain and aches, joint pain without swelling or redness, and headaches. To relieve this pain, try:
Gentle stretching/Massages - Careful and gentle stretching and help prevent stiffness as your muscles and joints recover. Similarly, massages can relieve tension and restore blood flow to sore joints and muscles.
Cold / Heat therapy - Cold therapy can be used for acute, throbbing pain. Try using an ice pack or soaking the area of pain with a cold bath. Heat therapy can be used for general tension and stiffness by relaxing muscles and encouraging blood flow. Try a heat wrap or a warm bath.
OTC medication / Topical treatments - Over-the-counter pain relievers can help treat minor aches and pains. Common pain relievers are Ibuprofen, Aspirin, and Naxproxen. Topical treatments like creams, lotions, or sprays can help relieve localized muscle and joint pain. Common topical treatment are Aspercreme, Ben-Gay, and Zostrix.
Sleep
People with ME/CFS may not feel better or less tired, even after a full night's sleep. Some may have problems with falling asleep and/or staying asleep. To improve sleep quality, try maintaining:
Sleep hygiene - Practicing good sleep hygiene and sleep habits can help you overcome insomnia, the difficulty falling asleep. Try sticking to a regular sleep schedule everyday by setting a regular bedtime and time to wake up. This gets your body used to sleeping during those hours. Try to avoid napping during the day to avoid messing up this schedule.
Nutrition - What you eat and drink can also contribute to the quality of your sleep. Make sure to avoid eating big meals within a couple of hours before your bedtime. Avoid drinking caffeine by mid-afternoon and avoid alcohol after dinner. If you still have trouble falling asleep, try drinking warm milk or chamomile tea before bedtime- as both contain properties which induce relaxation and sleepiness.
Light regulation - The exposure of light is also a factor for sleep quality. When your sleeping environment is dark, it is easier to fall asleep and stay asleep. Block out any light with curtains or blinds or try sleeping with a sleep mask. Avoid watching TV or using your phone before going to bed. Instead, try something more relaxing such as reading a book or listening to music.
Memory
Most people with ME/CFS have trouble with quick thinking and remembering things. This is often referred to as "brain fog". To address this issue, try to:
Stay mentally active - Engage in activities that keep your brain in shape. Try daily crossword puzzles, reading novels or articles, learning a new instrument or craft, and exploring new hobbies.
Spend time with others - Social interactions can reduce the ricks of memory problems. Try looking for opportunities to get together with loved ones, friends, and peers.
Eat a healthy diet - A consistent diet is good for your brain as it provides essential nutrients which protects it from stress and promotes brain cell growth and function. Try incorporating fruits, vegetables, and whole grains into everyday meals.
Additionally, some other symptoms that may be experienced by people with ME/CFS can be:
Orthostatic Intolerance (worsening of symptoms when standing/sitting upright)
Digestive issues
Shortness of breath
Irregular heartbeat
Frequent sore through
Chills and night sweats
Causes
The definite cause of ME/CFS is unknown and many potential causes are being studied. Lets take a look at some of the causes that are being researched:
Infections
People with ME/CFS often begin with an illness similar to the flu. Data reflects that about 1 in 10 people who get infected by the Epstein-Barr virus, Ross River virus, or Coxiella Burnetti later developed an illness with ME/CFS. This is especially tru if they had severe symptoms of these infections. Chronic symptoms, which resemble ME/CFS, following other acute infections are experienced by some patients. With these observations, ME/CFS may be a chronic illness following an unknown infection.
Immune System Changes
Immune system cells analyzed in 53 ME/CFS patients and 45 people without the diseases by Cornell University researchers showed a decrease in energy production after they were activated due to changes in the cell's mitochondria- which produces most of the cells energy. CD4+ and CD8+ cells, commonly found in the Thymus which is an integral part of the immune system, showcased reduced glycolysis which is another way cells produce energy. Many patients had immune systems that were no longer able to respond to infectious triggers as the disease disrupts the immune and nervous systems.
Stress
Patients with ME/CFS commonly report infections, or physical/emotional stress before they become ill. Some patients with ME/CFS even have lower levels of cortisol than healthy people. Cortisol, also known as the "stress hormone", plays a crucial role in the body's response to stress by increasing blood sugar levels, making energy readily available, and suppressing non-essential bodily functions. Low cortisol levels may lead to increased inflammation and chronic activation of the immune system. Although most people with ME/CFS have a lower level of cortisol, it cannot be used to diagnose as it still falls in the normal range.
Genetics
ME/CFS can be diagnosed in multiple family members implying potential genetic factors contributing to the risk of developing ME/CFS. However, due to the diagnosis not following a predictable Mendelian pattern in members of the same family, it is revealed how not one genetic variant increases the risk of ME/CFS. It is most likely a complex multifactorial condition whose genetic contributions vary drastically similar to many autoimmune diseases. Objectively identifying genes that contribute to ME/CFS genetic related risks could help with targeted therapy; however, these studies could also showcase the secondary consequences of the disease instead of the cause.
Mendelian Pattern - Mendelian inheritance refers to the certain patterns of how traits are passed from parents to offspring.
Activity + PEM
For an individual with ME/CFS, it is crucial to keep track of the amount and intensity of activity done. Any form of physical activity must be approached cautiously to avoid post-exertional malaise (PEM). It is recommended that people with ME/CFS utilize pacing and management guides to maintain healthy activity levels. Refer to this one if needed.
Post-exertional malaise, abbreviated to PEM, is a delayed worsening of symptoms that occurs after minimal physical or mental activity. the key feature of PEM is that the experienced symptoms are not in proportion to the amount of activity that has been done. There is often a delay between the appearance of worsened symptoms and the physical or mental exertion which triggered it. This delay ranges from 12 hours to a week. PEM is a common experience for people with ME/CFS and should be avoided if possible. Here are some possible things that might trigger PEM:
Physical Activity
Depending on the severity, physical triggers can range from brushing your teeth to exercise.
Mental Activity
Things that require concentration and memory.
Social Activity
Interacting with people either in person, on the phone, or online.
Emotions
Any activity that is likely to cause heightened emotion can be a potential trigger.
Sensory Experience
Sensory sensitivities are regarded as a symptom and can range from intolerances to noise, light, touch, and even to changes in the weather or certain foods and medications.
Stress
The emotions that stress can generate as well as the hormonal changes in the body can be a trigger for PEM.
Additionally, there is a wide variety of symptoms one can experience while going through PEM. Symptoms of PEM may range from flu-like symptoms to extreme fatigue and "brain fog". These symptoms are not significantly relieved by rest and last for days, weeks, or even months. Some of these symptoms are:
"Brain fog"
Burning sensation on skin
Problems regulating temperature
Eye symptoms
Nausea
Chronic muscle/joint pain
Headaches and migraines
Chronic fatigue
Tinnitus
and more
Current Solutions
There are some devices and platforms that people with ME/CFS utilize as a temporary solution or to ease the management of this condition. An example of this is Visible, an app that uses a wearable armband to track various symptoms and activities. However, there are many downsides of this platform as the armband itself costs $90 and to unlock all the advanced features of the app is around $180 annually. Because ME/CFS disproportionately affects people with lower incomes, this app and device are inaccessible to most. It is crucial that we develop a system that is easily accessible and free for people affected by ME/CFS.
Conclusion
This condition lacks the attention it needs from the public which is why it is important for us to further bring and raise awareness about ME/CFS to create better solutions and fund research for it. The currently on-going research for ME/CFS is simply not enough to progress and advance the knowledge of this condition to create a proper solution for it.
Works Cited
Symptoms
Causes
PEM
Assessed and Endorsed by the MedReport Medical Review Board
