Clasificación, Síntomas, Prevalencia, Severidad, Esperanza de vida: EM/SFC
Publicado: 10 May 2018, 23:00
Hola a todos:
He preparado este pequeño resumen para un artículo que saldrá en el periódico este sábado, 12 de Mayo (día internacional de la EM/SFC). Se trata de un resumen de los puntos claves de la enfermedad, incluyendo: clasificación, síntomas, prevalencia, severidad y esperanza de vida. Todo ello, con su respectivas referencias a estudios o libros.
Creo que podrá resultarnos útil en multitud de situaciones.
Sergio
SÍNDROME DE FATIGA CRÓNICA/ENCEFALOMIELITIS MIÁLGICA: PUNTOS CLAVE
1. CLASIFICACIÓN:
Enfermedad del sistema nervioso: CIE-10, G93.3
(…)In the World Health Organization’s International Classification of Diseases, Tenth Revision, which will be implemented in October 2015, both ME and CFS are coded identically and classified as disorders of the nervous system (ICD G93.3).(…)
Fuentes:
- Revisión Sistemática Instituto de Medicina Americano, 2015:
Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); 2015 Feb 10. Available from: https://www.ncbi.nlm.nih.gov/books/NBK274235/ doi: 10.17226/19012
- OMS: http://apps.who.int/classifications/icd ... /en#/G93.3
2. SÍNTOMAS:
Además de la fatiga extrema: intolerancia ortostática, dolor generalizado articular y/o muscular, disfunción cognitiva (dificultad para la comprensión, afectación de memoria a corto plazo, tiempo de procesamiento prolongado), deregulación inmunológica, inflamación de garganta, febrícula, inflamación de nódulos linfáticos, problemas gastrointestinales, nauseas, aturdimiento, vértigo, problemas sensoriales (p. ej. aumento de sensibilidad al sonido o a la luz, hormigueos cutáneos), depresión/ansiedad, problemas de sueño (insomnio, hipersomnia, sueño no reparador, somnolencia, incapacidad para recuperarse de cualquier esfuerzo, etc.
Fuente: Revisión Sistemática Instituto de Medicina Americano, 2015:
Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); 2015 Feb 10. Available from: https://www.ncbi.nlm.nih.gov/books/NBK274235/ doi: 10.17226/19012:
(…)entails much more than the chronic presence of fatigue. Other factors, such as orthostatic intolerance, widespread pain, unrefreshing sleep, cognitive dysfunction, and immune dysregulation, flu-like symptoms (e.g., sore throat, tender lymph nodes, feverishness) (VanNess et al., 2010); pain (e.g., headaches, generalized muscle/joint aches) (Meeus et al., 2014; Van Oosterwijck et al., 2010); cognitive dysfunction (e.g., difficulty with comprehension, impaired short-term memory, prolonged processing time) (…) nausea/ gastrointestinal discomfort; weakness/instability; lightheadedness/vertigo; sensory changes (e.g., tingling skin, increased sensitivity to noise) (VanNess et al., 2010); depression/anxiety; sleep disturbances (e.g., trouble falling or staying asleep, hypersomnia, unrefreshing sleep) (Davenport et al., 2011a); and difficulty recovering capacity after physical exertion (…)
3. PREVALENCIA:
Entre el 0.3% - 0.8% de la población Americana (no hay mediciones en España, se extrapola a nivel internacional)
Fuentes: Revisión Sistemática Instituto de Medicina Americano, 2015:
Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); 2015 Feb 10. Available from: https://www.ncbi.nlm.nih.gov/books/NBK274235/ doi: 10.17226/19012:
(…)Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that impose a burden of illness on millions of people in the United States and around the world. Somewhere between 836,000 and 2.5 million Americans are estimated to have these disorders (Jason et al., 1999, 2006b).(…)
4. SEVERIDAD:
Más invalidante que pacientes bajo quimioterapia para cualquier cáncer o que pacientes con artritis reumatoide, esclerosis múltiple, accidente cerebrovascular o fallo renal crónico; del mismo modo, los pacientes con EM/SFC se encuentran más enfermos que incluso pacientes muriéndose de insuficiencia cardiaca congestiva o que pacientes con SIDA en sus últimos dos meses de vida.
Más de la mitad de los pacientes están completamente discapacitados, mientras que un cuarto se halla permanentemente en cama.
La fatiga es en muchos casos más incapacitante que en todas las demás enfermedades que cursan con fatiga; puede Incapacitar para realizar cualquier actividad durante un periodo significativo de tiempo. Los pacientes más severos no pueden, p. ej., cambiarse de ropa más de una vez cada 7-10 días; para estos, hablar puede suponer una tarea imposible e incluso el esfuerzo de ir al baño puede dejar a un paciente con dificultades para respirar y sentirse como si escalasen una montaña.
Fuentes:
Falk Hvidberg M, Brinth LS, Olesen AV, Petersen KD, Ehlers L (2015) The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/ CFS). PLoS ONE 10(7): e0132421. doi:10.1371/ journal.pone.0132421 :
(…)ME/CFS patients of the current study have the lowest, unadjusted EQ-5D-3L measured HRQoL of 20 conditions, thus even worse than multiple sclerosis and stroke (…)In conclusion, the EQ-5D-3L-based HRQoL of ME/CFS is significantly lower than the population mean. In fact, the ME/CFS HRQoL in this study was the lowest of all the compared conditions in both the unadjusted analysis and in the adjusted regression analysis.(…) : In the adjusted regression analysis, each of the following 18 selfreported conditions is presented dichotomously (having/not having): ME/CFS, stroke, longterm mental illness, short-term mental illness, herniated disc or other back conditions, osteoporosis, heart attack, osteoarthritis, migraine or frequent headaches, rheumatoid arthritis, cancer (any), lung diseases: chronic bronchitis, COPH etc., diabetes, heart attack, cataracts, allergy, high blood pressure and tinnitus.(…) - Patients describe their fatigue as “exhaustion, weakness, a lack of energy, feeling drained, an inability to stand for even a few minutes, an inability to walk even a few blocks without exhaustion, and an inability to sustain an activity for any significant length of time” (FDA, 2013, p. 7). Some of the more extreme examples include “too exhausted to change clothes more than every 7-10 days”; “exhaustion to the point that speaking is not possible”; and “exertion of daily toileting, particularly bowel movements, sends me back to bed struggling for breath and feeling like I just climbed a mountain.”(…) patients often have a level of fatigue that is more profound, more devastating, and longer lasting than that observed in patients with other fatiguing disorders (…)
- Heckenlively, K., Mikovits, J., & Johnson, H. Plague.:
(…)More than half become completely disabled, a quarter permanently bed-bound (…)studies have demonstrated that ME patients are as ill as end-stage AIDS sufferers, advanced cancer patients and people dying from congestive heart failire (…)
6. ESPERANZA DE VIDA
Estos pacientes mueren antes que la población general. Las causas más comunes de muerte en pacientes con EM/SFC son: cáncer, enfermedades cardiovasculares y suicidio. Contando todas las causas, los enfermos con EM/SFC mueren 17.6 años antes. Desglosando por enfermedades, estos pacientes mueren 18.9 años más jóvenes de enfermedades cardiovasculares, 7.8 años antes por cáncer, y aquellos que se suicidan muestran una esperanza de vida de 6.4 años inferior a la media de la población:
Fuentes:
- Stephanie L. McManimen, Andrew R. Devendorf, Abigail A. Brown, Billie C. Moore, James H. Moore & Leonard A. Jason (2016) Mortality in patients with myalgic encephalomyelitis and chronic fatigue syndrome, Fatigue: Biomedicine, Health & Behavior, 4:4, 195-207, DOI: 10.1080/21641846.2016.1236588
- Revisión Sistemática Instituto de Medicina Americano, 2015:
Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); 2015 Feb 10. Available from: https://www.ncbi.nlm.nih.gov/books/NBK274235/ doi: 10.17226/19012
(…)The findings suggest patients in this sample are at a significantly increased risk of earlier all-cause (M = 55.9 years) and cardiovascular-related (M = 58.8 years) mortality, and they had a directionally lower age of death for suicide (M = 41.3 years) and cancer (M = 66.3 years) compared to the overall U.S. population [M = 73.5 (all-cause), 77.7 (cardiovascular), 47.4 (suicide), and 71.1 (cancer) years of age].(…) Results suggest there is an increase in risk for earlier mortality in patients (…)
(…)cancer, heart disease, and suicide are the most common causes of death among those diagnosed with ME/CFS, and people with ME/CFS die from these causes at younger ages than others in the general population(…)
He preparado este pequeño resumen para un artículo que saldrá en el periódico este sábado, 12 de Mayo (día internacional de la EM/SFC). Se trata de un resumen de los puntos claves de la enfermedad, incluyendo: clasificación, síntomas, prevalencia, severidad y esperanza de vida. Todo ello, con su respectivas referencias a estudios o libros.
Creo que podrá resultarnos útil en multitud de situaciones.
Sergio
SÍNDROME DE FATIGA CRÓNICA/ENCEFALOMIELITIS MIÁLGICA: PUNTOS CLAVE
1. CLASIFICACIÓN:
Enfermedad del sistema nervioso: CIE-10, G93.3
(…)In the World Health Organization’s International Classification of Diseases, Tenth Revision, which will be implemented in October 2015, both ME and CFS are coded identically and classified as disorders of the nervous system (ICD G93.3).(…)
Fuentes:
- Revisión Sistemática Instituto de Medicina Americano, 2015:
Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); 2015 Feb 10. Available from: https://www.ncbi.nlm.nih.gov/books/NBK274235/ doi: 10.17226/19012
- OMS: http://apps.who.int/classifications/icd ... /en#/G93.3
2. SÍNTOMAS:
Además de la fatiga extrema: intolerancia ortostática, dolor generalizado articular y/o muscular, disfunción cognitiva (dificultad para la comprensión, afectación de memoria a corto plazo, tiempo de procesamiento prolongado), deregulación inmunológica, inflamación de garganta, febrícula, inflamación de nódulos linfáticos, problemas gastrointestinales, nauseas, aturdimiento, vértigo, problemas sensoriales (p. ej. aumento de sensibilidad al sonido o a la luz, hormigueos cutáneos), depresión/ansiedad, problemas de sueño (insomnio, hipersomnia, sueño no reparador, somnolencia, incapacidad para recuperarse de cualquier esfuerzo, etc.
Fuente: Revisión Sistemática Instituto de Medicina Americano, 2015:
Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); 2015 Feb 10. Available from: https://www.ncbi.nlm.nih.gov/books/NBK274235/ doi: 10.17226/19012:
(…)entails much more than the chronic presence of fatigue. Other factors, such as orthostatic intolerance, widespread pain, unrefreshing sleep, cognitive dysfunction, and immune dysregulation, flu-like symptoms (e.g., sore throat, tender lymph nodes, feverishness) (VanNess et al., 2010); pain (e.g., headaches, generalized muscle/joint aches) (Meeus et al., 2014; Van Oosterwijck et al., 2010); cognitive dysfunction (e.g., difficulty with comprehension, impaired short-term memory, prolonged processing time) (…) nausea/ gastrointestinal discomfort; weakness/instability; lightheadedness/vertigo; sensory changes (e.g., tingling skin, increased sensitivity to noise) (VanNess et al., 2010); depression/anxiety; sleep disturbances (e.g., trouble falling or staying asleep, hypersomnia, unrefreshing sleep) (Davenport et al., 2011a); and difficulty recovering capacity after physical exertion (…)
3. PREVALENCIA:
Entre el 0.3% - 0.8% de la población Americana (no hay mediciones en España, se extrapola a nivel internacional)
Fuentes: Revisión Sistemática Instituto de Medicina Americano, 2015:
Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); 2015 Feb 10. Available from: https://www.ncbi.nlm.nih.gov/books/NBK274235/ doi: 10.17226/19012:
(…)Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that impose a burden of illness on millions of people in the United States and around the world. Somewhere between 836,000 and 2.5 million Americans are estimated to have these disorders (Jason et al., 1999, 2006b).(…)
4. SEVERIDAD:
Más invalidante que pacientes bajo quimioterapia para cualquier cáncer o que pacientes con artritis reumatoide, esclerosis múltiple, accidente cerebrovascular o fallo renal crónico; del mismo modo, los pacientes con EM/SFC se encuentran más enfermos que incluso pacientes muriéndose de insuficiencia cardiaca congestiva o que pacientes con SIDA en sus últimos dos meses de vida.
Más de la mitad de los pacientes están completamente discapacitados, mientras que un cuarto se halla permanentemente en cama.
La fatiga es en muchos casos más incapacitante que en todas las demás enfermedades que cursan con fatiga; puede Incapacitar para realizar cualquier actividad durante un periodo significativo de tiempo. Los pacientes más severos no pueden, p. ej., cambiarse de ropa más de una vez cada 7-10 días; para estos, hablar puede suponer una tarea imposible e incluso el esfuerzo de ir al baño puede dejar a un paciente con dificultades para respirar y sentirse como si escalasen una montaña.
Fuentes:
Falk Hvidberg M, Brinth LS, Olesen AV, Petersen KD, Ehlers L (2015) The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/ CFS). PLoS ONE 10(7): e0132421. doi:10.1371/ journal.pone.0132421 :
(…)ME/CFS patients of the current study have the lowest, unadjusted EQ-5D-3L measured HRQoL of 20 conditions, thus even worse than multiple sclerosis and stroke (…)In conclusion, the EQ-5D-3L-based HRQoL of ME/CFS is significantly lower than the population mean. In fact, the ME/CFS HRQoL in this study was the lowest of all the compared conditions in both the unadjusted analysis and in the adjusted regression analysis.(…) : In the adjusted regression analysis, each of the following 18 selfreported conditions is presented dichotomously (having/not having): ME/CFS, stroke, longterm mental illness, short-term mental illness, herniated disc or other back conditions, osteoporosis, heart attack, osteoarthritis, migraine or frequent headaches, rheumatoid arthritis, cancer (any), lung diseases: chronic bronchitis, COPH etc., diabetes, heart attack, cataracts, allergy, high blood pressure and tinnitus.(…) - Patients describe their fatigue as “exhaustion, weakness, a lack of energy, feeling drained, an inability to stand for even a few minutes, an inability to walk even a few blocks without exhaustion, and an inability to sustain an activity for any significant length of time” (FDA, 2013, p. 7). Some of the more extreme examples include “too exhausted to change clothes more than every 7-10 days”; “exhaustion to the point that speaking is not possible”; and “exertion of daily toileting, particularly bowel movements, sends me back to bed struggling for breath and feeling like I just climbed a mountain.”(…) patients often have a level of fatigue that is more profound, more devastating, and longer lasting than that observed in patients with other fatiguing disorders (…)
- Heckenlively, K., Mikovits, J., & Johnson, H. Plague.:
(…)More than half become completely disabled, a quarter permanently bed-bound (…)studies have demonstrated that ME patients are as ill as end-stage AIDS sufferers, advanced cancer patients and people dying from congestive heart failire (…)
6. ESPERANZA DE VIDA
Estos pacientes mueren antes que la población general. Las causas más comunes de muerte en pacientes con EM/SFC son: cáncer, enfermedades cardiovasculares y suicidio. Contando todas las causas, los enfermos con EM/SFC mueren 17.6 años antes. Desglosando por enfermedades, estos pacientes mueren 18.9 años más jóvenes de enfermedades cardiovasculares, 7.8 años antes por cáncer, y aquellos que se suicidan muestran una esperanza de vida de 6.4 años inferior a la media de la población:
Fuentes:
- Stephanie L. McManimen, Andrew R. Devendorf, Abigail A. Brown, Billie C. Moore, James H. Moore & Leonard A. Jason (2016) Mortality in patients with myalgic encephalomyelitis and chronic fatigue syndrome, Fatigue: Biomedicine, Health & Behavior, 4:4, 195-207, DOI: 10.1080/21641846.2016.1236588
- Revisión Sistemática Instituto de Medicina Americano, 2015:
Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); 2015 Feb 10. Available from: https://www.ncbi.nlm.nih.gov/books/NBK274235/ doi: 10.17226/19012
(…)The findings suggest patients in this sample are at a significantly increased risk of earlier all-cause (M = 55.9 years) and cardiovascular-related (M = 58.8 years) mortality, and they had a directionally lower age of death for suicide (M = 41.3 years) and cancer (M = 66.3 years) compared to the overall U.S. population [M = 73.5 (all-cause), 77.7 (cardiovascular), 47.4 (suicide), and 71.1 (cancer) years of age].(…) Results suggest there is an increase in risk for earlier mortality in patients (…)
(…)cancer, heart disease, and suicide are the most common causes of death among those diagnosed with ME/CFS, and people with ME/CFS die from these causes at younger ages than others in the general population(…)