By Lucas Perez, Fall 2023.
The key to solving an issue is understanding where the roots of the problem lie. Such knowledge allows us to attack the cause of a problem and not its effects, as tackling the effects only temporarily masks the intensity of it. Transferring this knowledge to the medical field, it becomes clear how important diagnoses are in setting up successful treatment plans, whether it involves therapy, medications, or the typical rest and fluid intake. For many conditions and diseases, this thought process has allowed humans to make revolutionary breakthroughs helping millions of people around the world. Unfortunately, there are a multitude of conditions that seem to diverge from this typical root-cause dynamic, such as chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME in short) and fibromyalgia.
CFS and Fibromyalgia are both chronic inflammatory conditions that affect a wide variety of systems such as the immune, musculoskeletal, cardiovascular, neurological, and lymphatic systems. While they are very similar in presentation, there are a few distinctions to be made. CFS tends to be caused by a cycle of blocked lymphatic drainage leading to decreased activation of the parasympathetic nervous system, which recurs back to itself intermittently. The lymphatic system is a system of organs and vessels that aids against infection and helps keep a healthy balance of fluids in your body, and thus its optimal function is very important to remain healthy. This is usually following an acute viral infection and/or due to some genetic predisposition that gives rise to conditions that allow this cycle to commence. Fibromyalgia’s causes are very similar to those of CFS yet tend to be slightly less understood; however, its symptoms are more consistent. The determinant symptom of Fibromyalgia is pain in 18 certain points symmetrical by the midplane separating the right and left sides of the body, also known as the sagittal plane.[1]
The uncertainty of the causes and symptoms of these conditions naturally leads society to ignore them. This follows from the lack of attention given to these chronic conditions that lack certainty when explained or taught about in medical programs. Rather, the doctors who do seem to understand these conditions go mostly off on experience rather than mechanical findings. The most harmful effect of the lack of knowledge is the mistreatment of the condition. Patients who are unaware of the existence of this condition will blindly follow doctors into thinking they have a psychiatric disorder, only leading to more stress and depression. Not only is this negative for the individuals, it is also financially negative, as 20 billion dollars a year are spent on incorrectly treating chronic fatigue syndrome in the United States.[2]
As with other medical phenomena, the United States is behind in understanding and implementing new technologies and techniques that have been proven to help. Firstly, there are a few surface-level distinctions that seem to fuel the fire. The name “chronic fatigue syndrome” is very misleading, making it sound like someone suffering from this condition is constantly tired with no other symptoms. Interestingly, in Europe this condition is solely referred to as Myalgic Encephalomyelitis (ME, as mentioned in the beginning), which has roots meaning “muscle pain and inflammation of the nerves”, giving it a more accurate representation of the dreadful symptoms that accompany this condition.[3] Next, there are very difficult blockades to overcome with the stringency of the FDA and the privatization of healthcare in the United States. There are currently zero approved treatments for either of these conditions, and thus the limited available treatments come at absurdly high prices that are class-locked behind gold gates.[4] Conversely, Europe’s centralized healthcare system has fewer restrictions for approving new treatments, and is less costly to obtain unapproved treatments. Additionally, European governments have quantified how vastly their populations are affected and have allocated more money for research and development.[5]
The United States and Europe differ in the following ways. Firstly, the Western approach to medicine is more hands-off, and thus it focuses more on medications, such as antidepressants and low doses of naproxen for chronic pain, combined with supplements for energy and muscle/nerve/immune health. Yet this seems to play right into masking the effects of the condition rather than attacking the root cause. Some practices in the United States have also started implementing more holistic approaches like ozone and peptide IV therapies. These techniques help cleanse the bloodstream of pathogens by activating antibodies and give your cells more available oxygen for energy production, yet they do not work on all patients, myself included. Europe’s research has focused more on the root causes and ways to end this cycle of the body harming itself. Thus, I have begun looking into some techniques developed in England, such as The Perrin Technique, that focus on manually draining the correct direction of lymph.[6] This will most likely be my next attempt to try to unravel the mystery of this painstakingly unknown condition.
There are several programs in the United States, such as SolveCFS and #MEAction that are attempting to bring these critical problems to light. Yet, they had very little success, again, due to the complexity of the disease and the inability to get quantifiable results on how to diagnose and treat it. But they have been brought back into the limelight in recent years due to a new catalyst that has already overtaken chronic fatigue syndrome and fibromyalgia in research investment and publicity: Long Covid. As complicated and dangerous as this chronic complication of COVID-19 can be, it has brought great publicity to the dangers and prominence of chronic illnesses in our global community that often get overlooked while still causing harmful effects to individuals and society as a whole. Hopefully, in the coming years, more effective treatments can be found for both, and if we are lucky in several years after that, they have a slight chance of being approved by the political bodies that are the FDA and CDC.
[1] “Myalgic Encephalomyelitis.” #MEAction. November 17, 2023. https://me-pedia.org/wiki/Myalgic_encephalomyelitis#Central_nervous_system.
[2] Klimas, Nancy. “Chronic Fatigue Syndrome (ME/CFS) Is…” HealthRising, November 17, 2023. https://www.healthrising.org/about-chronic-fatigue-syndrome-mecfs/facts/.
[3] Johnson, Cort. “Study Finds ME/CFS Most Neglected Disease Relative to Its Needs.” HealthRising. April 3, 2021. https://www.healthrising.org/blog/2021/04/03/chronic-fatigue-syndrome-most-neglected-disease-nih-national-institutes-health/.
[4] Noor, Nazir. “A Comprehensive Update of the Current Understanding of Chronic Fatigue Syndrome.” NIH. June 26, 2021. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8438707/.
[5] “Solve.” Youtube. SolveME, June 19, 2023. https://youtube.com/watch?v=nmorl0KyRIg.
[6] Perrin, Dr. Raymond. “The Perrin Technique.” Accessed December 14, 2023. https://theperrintechnique.com/.