Individuals diagnosed with ME and other post-acute infectious illnesses often suffer from multiple co-morbidities and associated diseases. Some, like dysautonomia and fibromyalgia, are commonly diagnosed along with ME, whereas EDS, autoimmune diseases, and MCAS are less prevalent. Persistent infections and reactivations are common occurrences in this patient population, and many of those cases have been found to respond to anti-microbial and immune-supportive treatments. How many complex symptoms of ME are due to overlapping conditions or are an integral part of the disease process remains to be determined.
Use of This Site
All information contained within the WPI website is intended for educational purposes only. Physicians and other health care professionals are encouraged to consult other sources and confirm the information contained within this site. Consumers should never disregard medical advice or delay in seeking it because of something they may have read on this website.
Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.
People who are impacted by MCAS release mast cell mediators in greater numbers and more often by triggers that for most are not a problem. In other words, the body overreacts to substances that it deems to be a danger. This extreme reaction may occur after you ingest food, are exposed to toxic chemicals or when you take normal levels of certain medications. What are the symptoms of MCAS? MCAS can cause a variety of symptoms that may mimic other diseases making it difficult to diagnose. It can cause symptoms in several body parts at the same time. Swelling of the skin, tongue, lips, throat, or other parts of the body in relationship to something in the environment or to a food or drug, is a serious symptom of MCAS. One can experience wheezing or difficulty breathing, gastrointestinal symptoms, headaches, unusual fatigue, which may be kept in check with over the counter antihistamines until an unusually difficult stressor is encountered. Anaphylaxis is a life-threatening emergency. It can occur very rapidly, causing a person’s throat and tongue to swell until the air passage is blocked. It is critical that a person experiencing shortness of breath or swelling of the tongue or throat get emergency treatment as quickly as possible. The individual may collapse and become unconscious if medication is not delivered immediately. To avoid a fatal event, individuals who suffer from anaphylaxis, will be prescribed an EPI Pen to carry with them at all times. How is it diagnosed? Doctors are recommended to take a four-stage approach to diagnosis. Stage one: Depends upon have more than one bodily system impacted. This stage may be under control with medications but becomes more severe with a stressful or unusual event like surgery. Symptoms can randomly wax and wane over time. Stage two: Doctors will try medications to see if the patient’s symptoms are improving. A trail of various drugs will give the doctor another reason to suspect MCAS as a reason for your symptoms. Stage three: Doctors may test for levels of several known mediators. If they are higher than normal, it is another positive sign of MCAS. However, not all mediators may be increased at the time of testing, especially if the patient is not experiencing a flare of their symptoms. Tryptase, methylhistamine and prostaglandins may not be elevated so positive tests can be suggestive of MCAS, but negative tests do not necessarily rule out MCAS. The doctor may order biopsies of the gut or skin to look for additional evidence of abnormal numbers of mast cells. Stage four: Your doctor may want to rule out other diseases that may be contributing to your symptoms. More than one disease can be present at a time and depending upon the disease they may require additional treatments. Why is this important for those affected by ME? MCAS has been found to be associated with a number of co-morbid disorders including, EDS, POTS, dysautonomia, type 2 diabetes and ME. Unusually frequent and/or more severe allergic reactions to food, environmental toxins and medications have been documented by physicians who care for those with ME. As a result, your doctor may want to prescribe medications to address your MCAS symptoms.
The Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders. The conditions are caused by genetic changes that affect connective tissue. Each type of EDS has its own set of features with distinct diagnostic criteria. Some features are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility.
Ehlers-Danlos Syndromes (EDS)
Fibromyalgia is a condition that causes pain all over the body (also referred to as widespread pain), sleep problems, fatigue, and often emotional and mental distress. People with fibromyalgia may be more sensitive to pain than people without fibromyalgia. This is called abnormal pain perception processing. Fibromyalgia affects about 4 million US adults, about 2% of the adult population. The cause of fibromyalgia is not known, but it can be effectively treated and managed.
I remember the feeling of joy, almost to tears, the day I discharged my first patient from the hospital and the tears that I can never hold back during the miracle of birth. That feeling is reward for our hard work here [in medical school] and in years that follow... I can't imagine being a doctor without it... I ask you to recall the vigor and happiness of our youths and then, imagine the beauty of that energy channeled into the care of another human being.
~ John-Paul H. Dedam via Darmouth