Have you, a family member or a close friend been diagnosed with Chronic Fatigue Syndrome? Have any of you wondered whether you may have Chronic Fatigue Syndrome? Before reading on, pass this blog post on to anybody that may be suffering with Chronic Fatigue Syndrome or is close with somebody that is.
What is Chronic Fatigue Syndrome?
Chronic Fatigue Syndrome is a “serious, chronic, complex systemic disease that often can profoundly affect the lives of patients,” according to the Institute of Medicine. Its hallmark symptom is called post-exertional malaise, which is a sense of profound fatigue along with an exacerbation of many other common symptoms that occur after simple tasks that were once tolerated. To be diagnosed with Chronic Fatigue Syndrome, these symptoms must exist for 6 months, be severe and exist at least 50% of the time. Other symptoms that are used to diagnose Chronic Fatigue Syndrome are either “brain fog” and/or an intolerance to upright positioning (sitting or standing). Finally, these symptoms are not relieved by rest and can last for hours, up to weeks or even months. For some, this exacerbation is indefinite and fully disabling.
Similarities between Chronic Fatigue Syndrome and Long Covid
Often but not always, Chronic Fatigue Syndrome is triggered by a viral infection. Historically, there has been a link drawn between ‘mono’ and symptoms consistent with or shared by Chronic Fatigue Syndrome. Most recently, as many with long Covid have their symptoms spill over the 6 month period, a link is being made between Covid-19 and Chronic Fatigue Syndrome. The true reason for this trigger is unknown, but of the multiple systems involved, an abnormal immune response that triggers the disease is likely.
Misunderstandings
Despite how common Chronic Fatigue Syndrome is (affecting up to 2.5 million Americans), it is not well understood by many healthcare practitioners. For many sufferers with unrelenting, disabling symptoms, they may not be taken seriously. Many clinicians feel Chronic Fatigue Syndrome is a psychosomatic disease. In fact, there is a strong, biological understanding to Chronic Fatigue Syndrome. This includes a break-down of our aerobic system. Said another way, those with Chronic Fatigue Syndrome do not produce enough energy to perform some of our most basic daily tasks. Others with ‘chronic fatigue’ stemming from another source, say pain or depression, are often lumped in with Chronic Fatigue Syndrome. This lumping effect has resulted in faulty research findings and inappropriate care.
Controversy in Treatment
Many individuals suffering from Chronic Fatigue Syndrome are prescribed graded exercise. Up until October of 2021, guidelines out of the UK continued to advocate for graded exercise. These misguidings stemmed from a poorly designed but well known research study. In fact, graded exercise is not at all indicated for those with Chronic Fatigue Syndrome. Instead, activity pacing and energy conservation is key to regaining an improved quality of life. Remember, the aerobic system is not producing the energy needed to perform this type of exercise. All major Clinical Guidelines worldwide now reflect this understanding (including the above mentioned UK guideline, which made the switch in October of 2021). But remember, many clinicians clump all fatigue together into Chronic Fatigue Syndrome. Inappropriate exercise prescription most often exacerbates, rather than improves, function. And for many, this results in a declining quality of life.
So what can you or your loved one do if diagnosed with or believed to have Chronic Fatigue Syndrome?
First, know that many healthcare providers do understand Chronic Fatigue Syndrome. Build your team around clinicians that validate what you or your loved one is going through. This is a complex, disabling condition and should be taken seriously. Second, after gaining a better understanding of Chronic Fatigue Syndrome, begin to build an energy conservation program and learn to pace. Make realistic goals for yourself and seek that quality of life you deserve with an understanding and caring team.
If you have any questions or would like to meet for a free consultation with Dr. Kelly Ashbeck, reach out to kellyashbeck@valleyspineandsport.com or call (920) 931-2532. Virtual visits are available as well as home visits to those in the greater fox valley if leaving the home is too difficult.