El misterio médico del síndrome de fatiga crónica

La encefalomielitis miálgica / síndrome de fatiga crónica (EM / SFC) se ha descartado durante mucho tiempo como una condición psicológica. Debido a la falta de comprensión en la comunidad médica, en el pasado, las personas necesitaban años para obtener un diagnóstico oficial, si es que obtienen un diagnóstico.

A 2015 report published by the Institute of Medicine (IOM) estimated that there between 836,000 and 2.5 million Americans suffering from ME/CFS, while a 2018 review estimated the rate to be higher—between 1.7 million and 3.38 million Americans. Worldwide, there could be as many as 17 to 24 million people with the condition. Sadly, most of these people have not been diagnosed. So in addition to their severe fatigue and other physical symptoms, they likely suffer from confusion, frustration, and a lack of sympathy and understanding from others.

The 2015 IOM report reviewed 9,112 published papers, and stated that ME/CFS is a serious physiological and not psychological illness. The report also criticized the lack of research funding, which has prevented progress in the understanding and treatment of the condition. While National Institutes of Health (NIH) funding for ME/CFS research has doubled in the past five years, advocacy groups stress the need for further increases in research funding because there are currently no FDA approved therapies for the condition.

Reports of full recovery from ME/CFS are rare; a review of 14 studies showed that just 5% of ME/CFS patients experience complete recovery from all symptoms. However, 39.5% of patients improve over time. Symptoms tend to be most severe in the first one to two years, and continued deterioration is not common.

Si padece EM / SFC, es importante saber que la razón por la que más personas no se recuperan no es porque la recuperación no sea posible, sino porque la afección no se comprende o trata bien. En esta publicación, discutiré qué causa con mayor frecuencia la aparición de EM / SFC, qué investigaciones han descubierto hasta ahora sobre la afección, los tratamientos que se han estudiado y cómo las personas informan que reducen sus síntomas y se recuperan.

¿Qué es la encefalomielitis miálgica / síndrome de fatiga crónica (ME / CFS)?

Myalgic encephalomyelitis means “muscle pain (myalgia) related to central nervous system inflammation (encephalomyelitis).” This name has been used since the 1950s, but in the past there has been debate about its accuracy since inflammation of the central nervous system had not been clearly demonstrated. In 1987, the Centers for Disease Control and Prevention (CDC) chose the name “chronic fatigue syndrome” as a more neutral and inclusive way to describe the condition. The 2015 IOM report proposed that the illness be renamed “systemic exertion intolerance disease (SEID)”, but many patients are not in favor of this new name.

People with ME/CFS typically have severe, unexplained fatigue that is not relieved with rest or sleep. ME/CFS sufferers often must decrease their work and daily activities substantially due to their fatigue. The condition can range in severity, and symptoms can fluctuate in severity from day to day. Some people describe it as being like having the worst flu you’ve ever had—all the time.

Además de la fatiga, otros síntomas comunes incluyen:

Malestar post-esfuerzo (PEM): agotamiento extremo, dolor, malestar y otros síntomas que se presentan después del ejercicio o una actividad extenuante, que a menudo no comienzan hasta el día siguiente
Sueño reparador
Concentración deteriorada o memoria a corto plazo
Dolor muscular y articular
Dolor de garganta
Nódulos linfáticos sensibles o agrandados (glándulas inflamadas) en el área del cuello o la axila
Dolores de cabeza
Problemas gastrointestinales

If you think you have ME/CFS, your doctor may use the criteria proposed by the Institute of Medicine (IOM) to give you a formal diagnosis.

Es importante tener en cuenta que otras condiciones de salud pueden causar síntomas similares a los de EM / SFC. Antes de diagnosticar ME / CFS, es probable que su médico realice pruebas para descartar:

Infección
Anemia
Hipotiroidismo
Insuficiencia suprarrenal
Trastornos del corazón
Apnea del sueño o narcolepsia
Cáncer
Hepatitis B o hepatitis C
Depresión mayor, trastorno bipolar y otros trastornos psiquiátricos
Anorexia nerviosa y bulimia.
Abuso de drogas y alcohol

Desregulación del sistema inmunológico, un biomarcador de diagnóstico y neuroinflamación

An exact cause of ME/CFS has not been identified—likely because there is not just one cause. Different factors may contribute to the onset of the condition in different people. About 70% of cases are preceded by a virus, but it is clear that no single virus is the cause of ME/CFS. Some viruses that are known to lead to the condition are Epstein-Barr virus (EBV), cytomegalovirus (CMV), varicella-zoster virus (VZV), human herpesvirus (HHV-6, HHV-7, HHV-8), human parvovirus B19 (B19V), and enteroviruses. Bacterial infections and toxin exposure can also trigger the condition.

There have been dozens of reported outbreaks of ME/CFS, most of which followed viral outbreaks, and some of which occurred due to toxin exposure.

Since the most obvious clue to the cause of ME/CFS is that it tends to occur following viral infection, research has focused on the immune system’s role in the condition. A 2017 study found that levels of 17 cytokines (signaling proteins released by the immune system) correlated with severity of ME/CFS symptoms. These results established “a strong immune system component of the disease.” Other research has shown impaired function of natural killer (NK) cells, increased numbers of activated cytotoxic T cells, and the presence of various autoantibodies in people with ME/CFS.

In 2019, researchers at Stanford University School of Medicine developed a nanoelectrics blood-based test that, in the first phase of trials, accurately detected chronic fatigue syndrome 100% of the time. This is the first test to consistently detect a diagnostic biomarker for ME/CFS.

The test sends an electrical current through a blood sample. The immune cells and plasma of the blood interfere with the current, changing its flow, and these changes are monitored. The changes in electrical activity are directly related to the health of the blood sample. In the test, blood samples are “stressed” using salt, and then researchers compare how the blood samples respond to the stress. Immune cells and plasma of people with ME/CFS respond poorly to the stress, incapable of processing it properly, in stark contrast to the cells and plasma of healthy controls. The researchers are very hopeful that their findings will lead to more consistent diagnosis of the condition, as well as drugs being approved for the its treatment.

A 2018 article in the International Journal of Immunopathology and Pharmacology describes how ME/CFS is a complex, multi-system condition resulting from neuroinflammation. The researchers present a compelling case for the role of the hypothalamic paraventricular nucleus (PVN), a part of the brain responsible for absorbing and processing incoming stress signals.

Los factores de estrés fisiológico, incluidas las infecciones virales, la exposición a toxinas y el trauma emocional, pueden causar disfunción en los circuitos neurales del PVN hipotalámico. En la Figura 2 a continuación, los investigadores enumeran una amplia gama de estímulos, incluido el ejercicio, el estrés emocional, la falta de sueño, la infección viral, las vacunas y la exposición a toxinas, que desencadenan la respuesta al estrés, que incluye la inflamación. Si el PVN hipotalámico se vio afectado por la neuroinflamación, podría explicar la hipersensibilidad de los pacientes con EM / SFC a varios factores estresantes, así como su amplia gama de síntomas.

Reprinted from A compromised paraventricular nucleus within a dysfunctional hypothalamus: A novel neuroinflammatory paradigm for ME/CFS.

While it’s clear that a dysregulated immune response is present in the condition, the nervous system, endocrine system, and metabolic processes are involved as well. And recent research involving RNA sequencing shows how stress and inflammation pathways affect circadian rhythms, metabolic function, inflammation, cellular stress responses, and mitochondrial function in ME/CFS patients. With so many functions of the brain and body involved, and a range of factors that contribute to the condition, it’s no stretch to say that ME/CFS is a medical mystery.

¿Qué hace que las personas sean susceptibles a EM / SFC?

There are no clear answers to this question, at least not yet. It seems likely that several factors are present before initial onset, working together to make someone susceptible to developing the condition.

Recurrent infections weaken the immune system and increase risk of ME/CFS, as do immune deficiency and autoimmune conditions. Exposure to toxins and genetic predisposition also increase risk of developing the condition.

Another risk factor is stress, which makes sense—plentiful research shows how stress weakens the immune system. Stressful life events are often associated with the onset of ME/CFS. Experiencing chronic stress in daily life as well as having experienced childhood trauma both increase the chances of developing the condition.

Dysbiosis of the gut microbiome may increase risk of developing ME/CFS, or may be a symptom of the condition, or both. Gastrointestinal (GI) disturbances are common in ME/CFS, and reduced diversity of gut bacteria and altered composition of the gut microbiome are found in many people who suffer from the condition. A 2016 study showed that the GI tract of many ME/CFS patients is a pro-inflammatory environment. The researchers found that they were able to correctly identify people with ME/CFS nearly 83% of the time by comparing their gut microbiota to that of healthy controls. The researchers suggest that gut dysbiosis may contribute to ME/CFS symptoms and increase their severity.

¿Existen tratamientos exitosos para ME / CFS?

No hay tratamientos para ME / CFS que hayan sido aprobados por la FDA.

Initial trials of the antiviral drug rituximab, which wipes out most of the body’s B-cells (white blood cells that make antibodies) seemed promising. Unfortunately, further research showed no significant improvement of ME/CFS symptoms, and the drug can also cause serious adverse effects.

Studies of the antiviral drug valganciclovir published in 2012 and 2013 showed some improvements among ME/CFS patients who had elevated human herpesvirus 6 (HHV-6) and Epstein-Barr virus (EBV) IgG antibody titers. However, researchers note the need for longer treatment duration and a larger sample size in future studies of the drug.

In 2011, researchers in the U.K. followed 641 ME/CFS patients for a year and compared the effects of specialist medical care (SMC), graded exercise therapy (GET), cognitive behavioral therapy (CBT), and adaptive pacing therapy (APT). It was the largest ME/CFS study to date, and when it showed positive results, there was enthusiasm about the possible benefits of GET and CBT. Unfortunately, it came out that there were many flaws in the study. Patients, advocates, and other experts have since spoken out angrily about the misleading study results.

Knowing the role of immune system dysregulation and the presence of gut dysbiosis in ME/CFS, it may come as no surprise that fecal transplants are being used to treat the condition. That is, unless you’ve never heard of this procedure! Fecal transplantation, also called bacteriotherapy, is the transfer of stool from a healthy donor into the GI tract of another person. The procedure has been used in Chinese medicine for at least 1,700 years and is becoming increasingly mainstream. It is used in the U.S. to treat recurrent C. difficile colitis. In 2019, the first study of fecal transplantation for ME/CFS was published, with promising results.

¿Cómo informan las personas que reducen sus síntomas y avanzan hacia la recuperación?

In the absence of any approved medical treatment for ME/CFS, sufferers of the disease take their healing into their own hands. Many people who report improving their symptoms or recovering—like Bruce, Carrie, Kenneth, and Karen—describe how they used pacing to help them very gradually increase their activity levels and regain their health.

Pacing is basically what it sounds like: paying attention to your energy level and other symptoms, and only doing what you can do without making your symptoms worse. ME/CFS patients often find it helpful to have planned periods of rest throughout the day. It can take a great deal of willpower and discipline to modify your lifestyle in this way, sticking to what feels like a very limiting schedule. But the alternative—overdoing it and triggering the out-of-proportion intensification of symptoms (post-exertional malaise)—is worse.

An article in Frontiers in Physiology describes how fatigue serves a protective biological purpose: it arises in response to activity that is intense enough to threaten our homeostasis. When we feel fatigue, we slow down and rest in order to let the systems of our body recover. Thinking about fatigue in this way may be helpful for people who suffer with ME/CFS. The fatigue is a signal that your body needs to rest in order to maintain homeostasis and heal. If you can think of resting and pacing as being helpful, instead of limiting and frustrating, it can at the very least improve your state of mind, and likely aid in your improvement as well.

El enfoque en la estimulación como método de recuperación puede hacer que parezca que la EM / SFC es una condición psicosomática, pero las investigaciones han demostrado claramente que es una enfermedad fisiológica que involucra múltiples sistemas del cuerpo y causa muchos síntomas físicos. La razón por la que el ritmo es útil en la recuperación es simplemente porque disminuir la velocidad y prestar atención a lo que su mente / cuerpo necesita permite que sus sistemas se curen gradualmente y regresen a la homeostasis.

Consider what happens when we come down with a virus: we feel tired, and we’re forced to take a few days off so that we can rest and allow our immune system to do its job. While ME/CFS is complex and extreme compared to this example, the principle of healing is the same. Our immune system wants to heal us and return the systems of our body to normal functioning, and often it can if we give it the chance. It is up to us to give it the very best possible chance to do its job. In addition to rest and pacing, this may involve stress reduction, changes in diet, taking supplements, spending time outdoors, meditation, and other lifestyle modifications that strengthen the immune system.

If you have reduced your symptoms or recovered from ME/CFS by any means and would like to share your story, I will add it to this post so that others can learn from your experiences. You can email me at [email protected].

Gracias a Anaya Smiley por compartir su historia de recuperación total del síndrome de fatiga crónica:

“When I was diagnosed with Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME) two and a half years ago, the doctor told me surely the most famous of all CFS one-liners: “95% of people do not recover, so don’t get your hopes up.” My response internally was “Fuck that!” and externally “Well, I am one of the 5% and I will recover!” Click here to read Anaya’s full story.

Lectura recomendada:

The Pain Relief Secret: How to Retrain Your Nervous System, Heal Your Body, and Overcome Chronic Pain by Sarah Warren, CSE

Somatics: Reawakening the Mind’s Control of Movement, Flexibility and Health by Thomas Hanna