#myalgicencephalomielitis — Public Fediverse posts

🇪🇦 “Se estima que 1 de cada 4 pacientes con #encefalomielitismiálgica/#síndromedefatigacrónica #EMsfc está gravemente afectado por la enfermedad. Y estos #pacientes confinados en casa o en la cama están actualmente poco estudiados." #EMsevera

🇬🇧 'One in four #MyalgicEncephalomielitis/chronic fatigue syndrome #MEcfs #patients are estimated to be severely affected by the disease, and these house-bound or bedbound patients are currently understudied' #SevereMEDay #severeME

https://www.mdpi.com/2227-9032/9/10/1290/htm

Barbie #EncefalomielitisMialgica. ¡Se hace invisible! 💗

Con todos sus complementos: #PEM, fatiga extrema, hipersensibilidad a estímulos ¡y mucho más!
Viene con cama, antifaz, tapones para oídos y luz tenue.
La #Barbie que no querrás tener.

+ INFO: https://domandoallobo.blogspot.com/p/indice.html

#LittlekKnownFactsAboutBarbie #Barbie #BarbieTheMovie #BarbiePelícula #IroniaOn #MyalgicEncephalomielitis #MEcfs #EMsfc #pwME

@maloki @CyruxiME well done! I say to my doctors that #PESE (for #LongCovid) is better than #PEM (for #MyalgicEncephalomielitis). Everybody understand 'Post-Exertional ⚠️Symptom Exacerbation⚠️' or I can explain to people that all symptoms get worse after an effort (exacerbation). 'Post-Exertional Malaise' is often severe enough to be disabling, and is triggered by ordinary activities as we know. 'Malaise' is VERY vague for that. Always minimising #MEcfs
#disabled #disability #dependence

🇬🇧 #MEawarenesshour Any experience of #climacteric or #menopause related to #MyalgicEncephalomielitis? Any improvement or worsening associeted with hormonal changes? I don't know how I'm going to bring this up to the doctors when you have to fight over basic things 😶

💻Web mode has Google Translate👇.
#301 A #climacteric that I don't understand 🐺
https://domandoallobo.blogspot.com/2023/07/301-un-climaterio-que-no-entiendo.html #MEcfs #myalgicEncephalomielitis #sexuality #SexualHealth #Woman #Women #disabled #diability #dependence

#MEAwarenessHour
"Una encuesta internacional de experiencias y actitudes hacia el '#pacing' [#acompasar] utilizando un monitor de frecuencia cardíaca para personas con #EncefalomielitisMiálgica /síndrome de fatiga crónica"
(T 🇪🇦) https://content-iospress-com.translate.goog/articles/work/wor220512?_x_tr_sl=auto&_x_tr_tl=es&_x_tr_hl=es&_x_tr_pto=wapp

🇬🇧 @/PhysiosForME:
'Delighted to see the write-up of the #Heart Rate Monitoring survey is now published and open access
👇👇👇'
https://content.iospress.com/articles/work/wor220512
#MEcfs #MyalgicEncephalomielitis #PEM #HRM #nrurology #neurología #corazon #cardiologia

Solo me falta disfrutar de cada momento de la batalla. Porque no voy a pasar por el aro por más que me machaquen. No me van a doblegar. No me voy a callar.
Los milagros solo vienen con #investigación. Hasta entonces lo menos que pueden hacer es actualizarse y acompañar a los #pacientes con #EncefalomielitisMiálgica, no ser un problema más por ignorancia y ego.
#medicina #reumatología #neurologia #EMsfc #MEcfs #pwME #MyalgicEncephalomielitis

🇬🇧The 23th of April or the 2nd of March? #worldbookday
Anyway, my diseases stolen me one of my passion due to #brainfog. But I'm stubborn and I started reading last year again: comics instead thick books.

Web view has a translator but you can read the post using other options from your device.

#239 La sirena a la que se le mojaron los libros (leer con #DisfuncionCognitiva) 🐺 https://domandoallobo.blogspot.com/2017/04/235-la-sirena-la-que-se-le-mojaron-los-libros.html
#Lupus #MyalgicEncephalomielitis #MEcfs #Sjögren #fibromyalgia #SAF #CognitiveDysfunction #blog

@brianvastag I have #POTS due to #MyalgicEncephalomielitis. Doctors said it was #anxiety (me: no, it isn't! Doctors: Anxiety you, see? ). Finally had an appointment with a cardiologist (tilt test) and got the diagnosis. With the report on her table, my PCP said this condition doesn't exist!! Exhausting.

Tal vez no entiendan la #EncefalomielitisMiálgica pero todo el mundo ha sentido la frustración de quedarse sin batería.
Somos móviles viejos en un mundo de smartphones.

#116 La teoría de la batería del móvil de antena (para explicar la #fatiga) 🐺 https://domandoallobo.blogspot.com/2015/10/116-la-teoria-de-la-bateria-del-movil.html
Aclaración: no es solo fatiga. Es falta de energía y muchos síntomas que se detallan a lo largo del #blog y buenos artículos científicos.
#MEAwarenessHour #MyalgicEncephalomielitis #MEcfs #EMsfc #pwME